Sunday, June 28, 2009 Patty, Community Member, asks

Q: Has anyone had strange/severe side effects from their spinal cord stimulator (scs)? Let me know pls.

Has anyone had strange or severe side effects from a spinal cord stimulator implantation? My scs caused all sorts of debilitating side effects like arthritis, fibromyalgia, chronic fatigue syndrome, weakness and numbness in extremities, and chronic/severe chills and fevers...all of which I never ever had until the SCS. Let me know your experiences. I'd appreciate it. =)

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Answers (68)
randy100, Community Member
7/ 2/09 12:46pm

While I have not personally used a spinal cord stimulator myself, I have done quite a bit of research on them and have read journal articles as well as what the manufacturer and governmental agencies state about them.

 

My pain managment specialist suggested to me that it "might" be helpful for me however he did say "I have to tell you they do have risks involved with them and you need to know that". 

 

After doing all of my research, I made the decision that it was too risky for me at this time though I always keep an open mind, things do change as does technology. 

 

I felt that the manufacturer did an excellent job in telling all about the possible benefits as well as the risks involved in using spinal cord stimulation and based on that, I made my decison of "not right now".

 

From what others have written in answer to this question today it seems as though some like them and find them helpful, others don't like them and don't find them helpful and others are in the middle. 

 

I think if you weigh everything and know all of the facts and information then you can make an informed decision along with your pain management specialist based on that.

 

With intractable pain (chronic pain) I think that if you can get 70% success in keeping your pain down and under control, you are doing good.

 

Good luck to you and I hope this was somewhat helpful in answering your question.

 

Randy.

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amanda, Community Member
7/17/09 10:11pm

 my husband had a spinal cord stimulator implanted back in Nov.2008 he has had a lot of trouble with his he actually just got out of the hospital on June 12th because he ended up getting double nomonia in both lungs and he also ended up with ARDS ( Acute Respitory Destress Syndrome ) we didnt think he was going to make it !! The doctors are not quite sure if the stimulator caused all this or not but its a good possibility it did. They are still checking into it . So if I were you I think I would think twice about having the thing taken out . As soon as my husband can go under with another surgery hes going to have it removed . Honey I would think twice about them things they are dangerouse Im not trying to scare you I just want everyone to know what hes been thru in the past 2 months and what our family has been thru because of this spinal cord stimulator. Take care and hope you find your answer !!! 

 

Amanda

 

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randy100, Community Member
7/18/09 8:25am

Amanda,

 

That is an unfortunate thing to have happen to your husband and it will be interesting to see if they can correlate directly the use of spinal cord stimulation to the problems that he encountered.

 

As I said before, it affects everyone different....some very good, some not so good and just about everything in between.  It is too bad that we really don't know prior to having the spinal cord stimulator implanted as to what the benefits will be v. the problems that may happen.

 

My best wishes to you and your husband Amanda and that you get this figured out and can keep his pain under control.

 

I appreciated you writing about this, it was very helpful along with all of the other posts on this subject.

 

Randy.

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Marry, Community Member
1/ 7/14 9:53am
I have had a lot of problems after the placement of the Nevro stimulator.
After 10 days I got dizzy spells, headaches and the worst squeaky ears
After half a year to be misunderstood by the starting and I let him remove representativeI know now 7 persons with grievous complaints also ears neck and head pain and shock in the back.Along with a neurobiologist, I am trying to figure out if the high frequency is the cause, it seems to me no coincidenc november, I let him delete, have no more neck and head pain but rather the sound in me head and ears terriblWhat is so did not know and not told is that he is relatively new and has not been approved in Americpeople recognize my story I never say!! do it has destroyed me lifBut I fight there for to find out the trutIs there anyone who also has experience with the Nevro?
Gr
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Marry, Community Member
1/ 7/14 9:55am

I would like to say that I come from Netherlands sorry for the language errors

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Nicoletti, Community Member
9/ 4/09 2:50pm

I too  have had problems with my unit. I don't get nearly the coverage I used to. I have had it adjusted so many times. I had a recent hip replacement surgery last Dec. I have had it adjusted several times,and my pain doc just says hang in there , it will get better.I can barely have it on or too long ,and my neuropathic pain became much worse in the extremeties. Doc says to leave it ,in case of some breakthrough pain that appears.Thank you for your input! Nicoletti.

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kimme, Community Member
10/16/13 1:15pm

Ihave problems with the stimulator as well, I was shocked by the unit and I now have very little use of the left side of my body. I was not told that this could happen. Had I known i wouldn't have had it put in.  Has anyone else had this problem. I also have 2 leads in my back and I am not sure if this is the problem. I cannot turn it on because I am terrified of it happening again. 

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Patty, Community Member
3/11/11 5:36pm

hi

sorry about ur husband. i hope he is doing better and that he got the scs removed before any more harm was done.

thanks for your post regarding the spinal cord stimulator from awhile ago.  i just got it.....go figure.

anyway, i would be interested in emailing u more and find out more about ur situation and u can learn more about mine. sounds like we both got a raw deal when it came to this scs.

if u get this and are interested, respond back to me here, and then i will give u my email ok.

i hope u are doing well or at least better than me. =)

-patty

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Patty, Community Member
3/19/13 12:56pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Dawn G, Community Member
3/26/13 11:36am
Thanks for your post Patty.........my report has been completed and is now online in the FDA MedWatch data base and is being investigated. Have you filed? I have found others on WedMD I am working with to report..........Dawn G Reply
Bonnie, Community Member
4/ 8/13 1:28pm

Hi Dawn,

 

I also have filed a report on the FDA website.  Do you know if I should be expecting a response of some sort after filing?  Since my husband's problems resulted in his death I expected to get a response right away.  Just curious what I should be expecting. My friend has a SCS and is having problems with it and I gave her the FDA website to file a complaint. 

 

Bonnie

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Dawn G, Community Member
4/ 8/13 5:09pm
Hi Bonnie........I am so glad you filed a report. The devastating consequences of the SCS must be made know to the FDA so the medical community will pay attention and not push us aside. You will be notified by mail in about a month. You will be given an access number so you can go online to the MedWatch site and see the report......the letter will give detailed information for email contacts, if you have any questions. I sent an email because I had a question and a real person actually called me back with details. thanks Bonnie and all of the rest of you that a suffering that have filed. And anyone out there with problems caused by the SCS, please file a report with MedWatch on the FDA web site. I am so so sorry about your husbands death. I don't know the details, but I do know that some people have such serious and even deadly or life altering consequences. Go ahead Bonnie and tell us your story. NeuroTalk and WebMD have people there also going through what we are going through. Those web sites are easier to navigate and the posts show up as last written first. tose 2 sites have some great people that have been dealing with SCS issues for years and are online daily. Great support. DAWN Reply
jayne isaacs, Community Member
12/ 6/13 1:57am

I have the medtronic unit and i am scheduled for surgery for a revision to the battery pack that is coming thru my belly skin! Dr.said it wasnt put in deep enough. Also I have been having horrific belly pain which resulted in a trip to the e.r. they did a ct scan and didnt find anything abnormal and couldnt explain the belly pain. As i recall after the implant of the battery pack it was big around as a tealight candle now it is flattened out to be big around as a grapefruit!! dr said it was impossible for it to flatten out like that because of what it is made of. It was implanted in my right lower belly and when I wear my seatbelt it is aggravated horribly to where it is so sore i am bent over. i am thinking of having it removed instead of having the revision surgery on 12/09/13. at Marion area hospital in marion ohio. I had it put in to help relieve chronic back pain and along with it i am taking oxy morphine 60 mg 3 x's a day and perks 325/10 3 x's a day and still have excruicating pain i also had a 3 level fusion in lower back! i am a mess and hurt so bad still! jayne in ohio

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Dawn G, Community Member
4/ 8/13 5:21pm
Hi Bonnie........I am so glad you filed a report. The devastating consequences of the SCS must be made know to the FDA so the medical community will pay attention and not push us aside. You will be notified by mail in about a month. You will be given an access number so you can go online to the MedWatch site and see the report......the letter will give detailed information for email contacts, if you have any questions. I sent an email because I had a question and a real person actually called me back with details. thanks Bonnie and all of the rest of you that a suffering that have filed. And anyone out there with problems caused by the SCS, please file a report with MedWatch on the FDA web site. I am so so sorry about your husbands death. I read the story you posted, and there doesn't seem to be any doubt that the scs was the root cause of your husbands downward spiral. I would definitely file a lawsuit. Just pass the word alone to those that have issues to file. Patty is great on this web site. NeuroTalk and WebMD have people there also going through what we are going through. Those web sites are easier to navigate and the posts show up as last written first. Those 2 sites have some great people like Patty that have been dealing with SCS issues for years and are online daily. Great support. DAWN Reply
Heidi, Community Member
12/12/13 7:53am

Dawn,

 

Could you elaborate on what occured with your husband? My father was forced to try this even though we felt it was too risky. His pain doctor told him that he would stop treating him for pain if he chose not to do the trial. He had it implanted yesterday and the procudure was only supposed to take 20 min and it took them 3 hours and his pain level has increased substaitially.. He can't talk and is having trouble breathing. The doctors sent him home and told him it would get better. I am very concerned and dont know what to consider adverse and when to seek medical attention. Any information would be helpful. I cant help thinking that the doctor pushed him to have this done because of kick backs they get from the pharmacutal companies.. it is terrifying to me. I am so sorry about what happened to your husband and apprecaite and responses that ppl can give me.

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Trina, Community Member
2/ 4/14 7:54pm

Praying for you and your dad IN JESUS NAME  I ask that healing come. Pain go now. 

 

 

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stevensback, Community Member
3/15/14 1:32pm
If it were only that simple. Reply
stevensback, Community Member
3/15/14 1:03pm

Was this in Asheville,  NC?  My last pain management Dr. Was very aggressive about going through the trial. It got so bad I had to find another Dr.. Happy with new Dr:)

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jonmur60, Community Member
12/18/13 3:40pm

Hi Dawn , My name is John Murray and I had the SCS inplant in 2010, I reside in a Skilled Nursing Facility and recently, for some reason , my inplant which is in the left hip area has began hurting very bad, scaling 1-10, I would put it at an 8-9 sitting still and 10 trying to stand or walk. I have told the staff here and they made me an appointment with the pain Dr. next week, but this doesn't releive me right now and it looks like I get to endure this for at least another week before anything will be done. It's crazy!  I'm in horrible pain and just being ignored. I don't know what to do, but I can say I would rather just be dead than continue this torture. I have no idea what's going on, or why this battery has began this. It may have just shifted into some nerves or it may be leaking. All I know is I want the pain to stop and this Nusing Home is not doing anything at all to help.

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alarmro, Community Member
6/21/13 12:46pm

I have wanted this SCS for so long. I had 2 failed attempts, (extremely painful) then it was put in surgically on May 16, 2013. I did not have a trial. I have not recovered yet. After 2 weeks and several calls to the surgeons office, I was told to check with my local MD. She said my symptoms sounded like electrolite and sodium imbalance. My blood test agreed. I have that back in balance, but still have nausia and just can't get my strength back. I still have a lot of 'fullness' around my waist and pain in the area where they put the unit under my skin. I haven't turned it on many times because I get a jolt from it. Every morning I think I feel better, then start in with the nausia. I wish I had never had it done. All I wanted was to be able to go for a walk without pain.

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Patty, Community Member
6/24/13 1:32pm
I am soooooooo sorry to hear about your pain and suffering from this SCS. If things don't improve soon, listen to what your gut is telling you, and get it taken out. Hopefully, it will solve these issues you are having, but not your pain. For that, all I can say is keep taking it one day at a time, keep trying new things, but do some research before jumping into surgery.....nothing is as wonderful and miraculous as they say it is. Then when the SCS doesn't work, they all want say they don't know what's going on and no one else other than you has ever ever had any problems with it before. Well, don't believe it..... Have you ever tried water therapy in a heated pool, and when I mean heated I mean around 85-88 degrees? It does a world of good, even if it keeps the pain away for a few hours. Hang in there. Keep us posted. Be well. Reply
Barb, Community Member
5/ 1/14 11:03am

It's interesting reading your comments.  I too have the nausea.  I didn't relate it to the stimulator which I have had for 4 months.  But every morning I feel "green" with nausea and even though this stimulator does work for the severe nerve pain, my back and neck are constantly tied up in knots.  I leave work every day feeling worse than when I start out my day.  I've started looking on the internet for possible  side effects of this implant.  Your information made me feel less neurotic.  After a while, you hate to tell people how you feel.  It's depressing.

B

 

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Terri M, Community Member
6/15/14 9:14pm

I had Medtronics trial back in on 4/7/14, and the permanent was implanted on 5/12/14. I've had great success with the stimulator keeping my pain at bay, with only a few breakthrough spikes every once in awhile. I noticed at the end of May, my daily routine of having 1 cherry yogurt at 6am came to a halt when I started feeling nauseous while eating. I truly thought my 12 year love of cherry yogurt came to an end. I changed medication time so that I didn't have to eat something in the early a.m., but I continued to get nauseous no matter what time of day or night that I eat. I have no idea if it my SCS that is causing this, but I will be contacting my Medtronics Rep first thing in the morning! I am so hoping that this isn't a side effect, because this is the first time in 30 years that I have been relatively pain free!!! :(

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Dawn G, Community Member
8/23/13 6:09pm
LAW FIRMS TAKING ACTION........for all of us that have been suffering from the life altering adverse effects of the SCS. After months of giving up on finding a law firm, I believe we must have done a good job filling Adverse Events with the FDA. I googled SCS law suits. The page opens with two firms. The first is Meyerson Law Firm, which I have filled out the necessary info and the other was a Texas Firm. Get going people, FINALLY, we may get some compensation. Fellow SCS Sufferer.........Dawn Reply
Iamatwittsend, Community Member
5/ 3/14 7:07pm

Can you give me the law firms  that you have used. I just received my 3rd attorneys refusal to take the case.

 

HELP please

 

 

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Dawn G, Community Member
5/ 3/14 7:27pm
I spoke with 2 attorneys, both refused the case. They said we need a law firm that will file a class action suit. But to do that, more people need to speak out. ...............the first step is filing an Adverse Event for a medical device with the FDA. The FDA MUST know first.......... See my previous posts on filing, it is easy and so very important. Without the FDA being made aware of all the problems, no lawyers will take on a suit. Dawn Reply
Peanut, Community Member
1/12/14 7:51pm

I have felt for so long that what I was feeling was just me.  I have been in severe pain since the stimulator has been placed.  What was suppose to be an overnight stay for the implant turned into a 10 day ICU visit.  The pain when I came out of anethsesia was horrid, my left arm was partially parilyzed and the pain continues a year later.  Please let me know who I need to let know because I feel like I am going in circles with pain management doctors, and Duke doctors.  Duke doctors have told me that it would cause more damage to remove.  By the way Duke doctors are the doctors that placed the stimulator.  I was never told this is something that can't be removed..

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Patty, Community Member
1/13/14 3:43pm
Exactly Where was it implanted in your spine? Do not let them tell you that it cannot be removed or that it is too difficult to remove...that's b.s. If its been over a year and you are worse off than before, than get it out. (Same happened to me). If your original doc refuses to remove it, keep looking for one that will, or also contact the representative from the stimulator company (and, medtronics, etc...) and ask them who else locally they can remove it. Sorry n good luck. Reply
steph, Community Member
5/26/14 3:19pm

I had the stimulator placed a little over 2 months ago.  In 2994 I had back surgery and my neurosurgeon slipprd with the drill and cut some of my nerve roots.  Due to that I've had to have 2 more back surgeries and several urology surgeries due to the fact that I now have no control of my bladder. When I woke up in recovery after having my stimulator placed they told me thst I quit breathing 3 times so I ened up in the icu for a few days.  They said that this was due to the side effects of pain medication. After being 4 weeks out from surgery I quit taking all narcotics because this was a huge gole for me from the beginning.  My pain has been severe but I had become dependent to pain medication.  6 years ago I made the decision to stop taking narcotics cold turkey,  I went through 3 months of extreme withdrawals and they put me on tramadol instead. After 6 years of not taking nothing but tramadol and muscle relaxers the pain hsd become so severe that I couldn't function anymore. I have tried just about everything except going back on pain medication long term and my lsst hope seemed to be the neuro stimulator I was very excited and couldn't wait to feel better.  Now I am having severe chest pains short of breath to the point that my nsil beds are blue .I went to the er because I thought I was having a heart attack they ran test and said they couldn't find anything.  I'm still having chest pain, shot of breath, my nsil beds sre still blue, I get out of breath just trying to walk across the floor, im exhausted and I haven't done anything. I'm so discouraged and I don't know what to do or where to turn every doctor I speak to acts as if I'm crazy. Does anyone have any suggestions? ?

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di, Community Member
2/ 4/14 9:37am

my  husband just had the exact same things happen to him after the stimulator was implanted on 1/13/14. now we have neck and high back pain. the area around the battery pack has started to swell and he has a large pone sticking out of his back . on ventulator for 8 days now off but in rehab. we do not know what to do next.

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steph, Community Member
5/26/14 6:59pm

I will absolutely keep you both in my prayers.  I truly felt so alone until I found this website I feel that there may be hope for all of us once again.  Im headed back to the er my blood pressure is very elevated no doubt due to the pain im having in my chest I feel like I might be much better off if I could go back to the way I was before the stimulator.  I wish I had found this site before I had the surgery. 

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ginniG, Community Member
3/ 9/12 12:02am

I had one put in 3years ago and I couldn't funtion without it.I don't know if any of you use it the way I do but my stays on all the time.I turn it down to the lowest point and leave it on all the time.Sometimes I have a problem after I charge it but I keep trying and if I can't get it right i call me agent.I have perament nerve damage to my right toes and leg ,the left not so bad now but I believe in it.The only problem I seem to have is I think it has moved too much.I suppose I need an exray to find out.hope this helps someone.GinniG

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Shado, Community Member
4/30/14 7:34pm

Sorry to here about all the problems with the SCS.  I have had an implant since 2000, but not the same one.  The first lasted 3 years, the second 1 year, the third 6 months, the fourth 5 years, and the fifth is getting replaced May 9th.  The only complications I have had have been with the leads failing.  The fourth implant, they used the paddle lead because "they last forever, never need to replaced, and provide excellent coverage."  Well, the leads went bad!  Then I found out the hazards involved in removal of the paddle leads.  Hazards that were never told to me, even when asked over and over.  Now, the leads have to be removed because of the problems, complications, and pain they are creating in my back, legs, etc.  BEWARE OF THE PADDLE LEADS!!!!  

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Nicoletti, Community Member
6/29/09 1:47am

I have had mine since 2005. I believe I had pretty good relief in the beginning,but it has waned since then.I think I get about 40 percent right at this time.  There are some things that change the effectiveness of the sci unit.We constantly are changing positons through out the day and evening hours.My unit gave me 90 % relief after changing, trying another brand of stim. Then I fell from a deck in a friends backyard and  everything changed. My pain had virtually doubled! I then went to a pain managemnt specialist different from the first Doc. He did what is called a resection,replacement of the lead wires.I also wanted the implant moved from its present location,to a new one which is now 100% better.The Doc said if I fell again the wires would stay in place,even if I fell off of a horse!Nicoletti.

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cklip76, Community Member
1/ 3/12 3:39pm

I had a St. Jude Stimulator implanted in Oct. 2010.  In November, we were in a car accident.  I immediately noticed that the system did not respond to any reprogramming, etc.  It took me from November until February to finally convince my Pain Medication doctor that something was wrong.  He exrayed and responded - you know you're right - the right lead is disconnected.  In 2/2011, he then did surgery to replace the right lead.  Since then, I have had my St. Jude rep reprogram many times.  In December 2011, he exrayed and the St. Jude Tech also confirmed that he thought the right lead was faulty.  My deductibles, etc., for all insurances had been met and he assured me he could do this in 2011.  Surprise, surprise, it is 2012 and he could not, or did not, try to fit me into his schedule.  I get sharp shocks on my right side, even though it is suppose to be disconnected.  I am beginning to wonder if they know what they are doing!

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LaughSing, Community Member
7/ 2/09 4:14am

Sorry, no, mine is just buzzing along, doing its job.  I mean, yeah, I don't feel my feet as much when it's on, but we knew that was going to happen, and they're fine when I turn it off again.

 

I hope you get your medical mystery cleared up, that can't be any fun at all. :(

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Jan, Community Member
7/ 2/09 5:25am

I had to have my SCS removed because it was stimulating my lungs and  making it impossible for me to breathe. Medtronics finally admitted, after months of trying to adjust it, that they had never implanted one in a person as small as I am. I am 4'9" and weigh @ 95 lbs. They never could get the stimulation to the legs where I needed it and keep it out of my lungs. I could take air in, but could not exhale. It was horribly scarey.

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Patty, Community Member
3/19/13 12:53pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
7/ 2/09 5:45am

Yes, first of all - don't ever lose any weight once you have had one installed, as I lost over 80 lbs and now I cannot sit down straight because it is protruding from my left buttock where the generator portion was installed.  Secondly, immediately afterwards I began stiffness in my joints, etc and learned that I had rheumatoid/psoriatic arthritis - BOTH - an immune system disease - possibly (in my mind) caused from the neurostimulator (which does not provide me ANY relief whatsoever).  I believe that I am allergic to the unit and my body is working overtime trying to reject the darn thing.  As far as your other symptoms, hmmm -  I thought those were medication side effects but now you make me wonder about those also.  I have been on Hormone Replacement Therapy since I was 28 and had a hysterectomy and now that I'm 45, I figured maybe I was going through the change of life or needed my dosage adjusted.  I do believe that there is something to be said about us having a foreign object implanted inside of us and our body having a way of letting us know that it doesn't appreciate it - hence all the symptoms.

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Patty, Community Member
3/11/11 5:35pm

hi

thanks for your post regarding the spinal cord stimulator from awhile ago.  i just got it.....go figure.

anyway, i would be interested in emailing u more and find out more about ur situation and u can learn more about mine. sounds like we both got a raw deal when it came to this scs.

if u get this and are interested, respond back to me here, and then i will give u my email ok.

i hope u are doing well or at least better than me. =)

-patty

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roxie, Community Member
11/12/12 6:27am

The more i read the more i wonder, yes no one wonts to point the finger, put is it funny, three months after i got my scs, i started having trouble with my hips, now my knees are swelling ,and last night my ankles are popping, had exrays, all looks fine, family doctors thinks i have autoimmune, went to rheumatologist, he shot my knees up with steriods and set me home, i think rheumatology knows something, about the scs causing autoimmiun, put know ones pointing the finger, instead we are left in pain, sick and feel crazy. just saying. Roxie

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Patty, Community Member
11/12/12 12:23pm
Yes, I agree with you 100%. Whatever happened to the doctor's Hippocratic oath....above all, do no harm!!! Reply
zyna, Community Member
11/16/12 4:16pm

Just reading yours i was implanted in August 2012, and triing to figure out if my body is rejecting mine as well, I went to the pain dr and explained my problem and unforntally he said he sorry its not working out well, but i have hip problems know when i walk feels like its going to snap and so does m lower back from where i was injured with L4- L5 S1 ruptured from an injury.  Plus i still have horriable pain and know my butt hurts even when i sit or touch any part where its implanted.  but my dr's seem to think this will go away with time....Just thought I would touch base with you to let you know im dealing with some of the same things.  THanks for reading zyna if you would lke my email its zyna_keyes@yahoo.com if you would like to touch base this way to.....or for anyone dealing with the same just curiouse how many has had these problems. Frown

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Patty, Community Member
3/19/13 12:54pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
jeff, Community Member
5/ 5/14 5:37pm

do you know aproximetly how many law suits there are for scs

my wifes laywer is recomending her to this type of pain manegment

and after reading all this here were not so shure

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Darrell, Community Member
10/13/14 12:40pm

I have had horrible pain where the stimulator is implanted. I had the unit replaced 2 years ago because of this same issue. The Dr. said that there was a smaller unit that he'd like to place. Now 2 years later, I'm having this same pain again. Hurts to sit and excrutiating pain when I stand or get up from laying. It hurts every time that I get a cold too. It's as if my body is trying to reject something that doesn't belong. It's so helpful to read some of the comments here because I know even more now that it is not just me.

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Patty, Community Member
11/19/12 2:46am
Hi Roxie! Just wanted to say hi, check up on you and see how your SCS removal went. I hope it went smoothly and that your are starting to feel better each and every day. KIT, Patty Reply
Patty, Community Member
3/19/13 12:45pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! Patty, former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Aderouen, Community Member
2/17/13 11:03pm

Patty,

My Dr is talking about me doing this and I'm very worried about doing this. Can u please give me some input on this and if it is even worth it

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Patty, Community Member
2/17/13 11:37pm
Hi Thanks for writing....you can read anyone of my many posts on this site, and unfortunately due to the horrible experience I have had, along with countless others, I can no way in good faith, endorse or recommend the spinal cord stimulator to anyone. There are simply too many problems with it, so many known and unknown devasting side effects that make your health even worse. I know it's hard when u feel like u don't have an other choice in the world to help alleviate the pain, but this stimulator is not the answer. Good luck to you. Lt me know if u find another viable option. Patty Reply
Marc Jean, Community Member
2/19/13 12:23am

 

I am a patient with SCS since 10/2009,

couple months after the procedure, my misery  started and my experience is worsen daily. Now the implant is useless no more comunicating with the outside controler.

In addition to my prior pains. Now I have nerves damage, my left leg is swelling.......

It is a devastation on my body.

Ms. Patty (South FL) you encourage me to speak about that Spinal Cord Stimulator Implant for the fist time publicly. I am loosing hope and I am tired.

 

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Patty, Community Member
2/19/13 11:17pm
Hi Mark Jean. I am soooo very sorry to hear your nightmares and pain with the SCS, too. I hate that more people have to undergo such a dangerous procedure which winds up crippling more people than it helps. I am glad that you feel safe enough here on this forum to speak your truth and story about your situation with the SCS and hope you can relay any and all info and experiences you have had with us and others, too. If I can save just one person from going thru this SCS procedure, I would be thrilled. I hate hearing of more people with more problems than they already started with. Please feel free to continue sharing your issues here with me anytime. Thanks so much and good luck! Hang in there as tomorrow is a new day filled with possibilities. -Patty Reply
Bonnie, Community Member
3/21/13 8:37pm

Hi Patty and Mark Jean,

Mark Jean's post about leg swelling caught my eye and I had to respond.  My husband had a Boston Scientific stimulator implanted in 2010.  Two hours out of surgery his right foot began to swell.  The swelling worsened over the next couple months to include his entire leg.  During this time he also had problems getting the stim to work in the right places, pain when lying on his side where the battery was implanted, sharp "needle pokes" to his eyes and face (his doctors assured him it had nothing to do with the stim since it was implanted in his mid back), numbness in his hands, bladder and bowel problems.  He begged for a year for them to remove it.  They finally did almost a year to the day of implant.  After removal his symptoms got progressively worse.  His swelling progressed to his left foot and leg and eventually up into his torso.  His skin on his feet, hands, and lips started splitting and bleeding.

 

He passed away on Feb. 13, 2013.  He went in his sleep after over 2 years of agony that started when the stimulator was put in.  By the time he died the swelling had progressed to his face, to the point that he could hardly open his eyes.  He was only 42.

 

This product is dangerous and should be taken off the market.  I'm curious who gets the kickback for selling this thing and then do they get paid by how long it's left in?  They sure don't bother to mention all these side effects.  Please, please, please let me know if a class action suit is started.  I don't know how to give contact info without giving it to everyone on here but I will watch the posts.  Thanks.  Bonnie

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jccrosses, Community Member
4/ 8/13 8:52am

Bonnie, I am so sorry to hear that he passed in such dreadful agony. I, too, am a Medtronics scs patient. Like others here I have my share of problems but none to this extreme. I would like to point out that your husband's case sounds like surgical human error and is a malpractice case. We have to remember it is a human playing with the nerves while we r under anesthetics and he sounds like they clipped tendons, nerves, and b lood vessels. I hope u had an autopsy done to confirm cause of death. I think u should speak with an atty too.

Which reminds me, when I had my surgery for my installation, I was put under twilight sleep so that I could communicate with my doctors about their location on the nerves were correct and if they had the correct nerves. Once all the communication was done, then they sewed me up and installed the battery.  Just to let you know, they medical rep for the company is in there helping with the surgery as if he/she has the same medical degree as the surgeon. It is quite a bizarre situation. They also use this machine that xrays/magnifies/photographs the lead placement of the nerves. So there is suppose to be physical imagery of this procedure in his medical file. I know going after the surgeons or the scs company will not help your loss but it can help with the loss of his income for your family. I am encouraging this because it really does sound like a more serious misplacement or surgical foul that cost your family so much.

 

 

 

 

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Bonnie, Community Member
4/ 8/13 1:08pm

Thank you for your response JCCROSS.  My husband did have an autopsy done but it did not show anything wrong connected with the stimulator site.  That doesn't mean there wasn't any wrong doing, just that the medical examiner didn't find anything.  My husband thought from the first minute that something went wrong because when he woke up from surgery every doctor from the surgeons office along with the reps from Boston Scientific were standing around him.  He thought it was quite odd.  I did go to the FDA website and file a complaint about this dangerous product to help get a recall and class action lawsuit started.  If you have had problems with the SCS you should file a report also.

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Patty, Community Member
3/19/13 12:55pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Dawn G, Community Member
2/20/13 5:02pm
Patty.........I am not sure if I wrote you before about the FDA. I sent a report of an Adverse Event on the SCS to the FDA.......have you thought of doing this? Today I saw my physiatrist who told me he has seen so many patients suffering from the stimulators. ...........still Suffering........Dawn Reply
Patty, Community Member
2/21/13 10:38pm
Dawn, Thanks for the info....how do I go about writing a report to FDA regarding adverse reactions to SCS? If there's a web link u can share, I'd appreciate it as I am sure many others would too. Thanks a lot. I at least we can make the FDA of the severe problems with this machine and get it taken off the market so others don't have to suffer, that would be a start. Thanks Patty Reply
Patty, Community Member
2/21/13 10:38pm
Dawn, Thanks for the info....how do I go about writing a report to FDA regarding adverse reactions to SCS? If there's a web link u can share, I'd appreciate it as I am sure many others would too. Thanks a lot. I at least we can make the FDA of the severe problems with this machine and get it taken off the market so others don't have to suffer, that would be a start. Thanks Patty Reply
Dawn G, Community Member
2/22/13 5:12pm

I am trying to paste the linkhttp://www.fda.gov/downloads/Safety/MedWatch/HowToReport/DownloadForms/UCM082728.pdf

 

  if you can not connect, the form at the fda.gov web site is called Form 3500A, very easy to fill out.

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Dawn G, Community Member
2/22/13 5:19pm

I can see the link did not copy, if you send me your email I will forward the page if you can't find it.  FDA Form 3500A

  dawngriswold@snet.net

  I hope that everyone will file the report.  My doc and a lawyer said that is the first step.  If the FDA start getting Adverse Reports on the SCS they will investigate.  and maybe then we can get a class action law suit going.  St. Judes was my company.

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Dawn G, Community Member
2/22/13 5:27pm

I found the easy way, just google FDA Form 3500A and the first link is the page that takes you right there.  It is voluntary because we are not in the hospital as a medical worker, they use the mandatory form.

   LET's DO THIS !!!!!!!

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Patty, Community Member
2/23/13 10:51am
Thanx Dawn!, I will definitely do this. Patty Reply
Dawn G, Community Member
2/23/13 12:14pm
Patty.......what a coincidence,.......today in the mail I received a letter from the FDA... They ARE investigating and gave me an access number to follow the case online. ...........Get the word out, you are very good with connections here. I don't know if you visit other web sites, but my report is going forward!!!!!!!!! DAWN Reply
Patty, Community Member
2/24/13 5:57pm
Dawn, Awesome.....i will file with the fda next week after my family from overseas returns home. All I was ever told by my lawyers was that a class action had to be active, but they never told be how to get one started or how to go about any of it. I will pass along to anybody here who emails me to do this too.....and you can do the same too. Just place a few additional posts with all the info and web link/site so that others may begin their own complaint process thru FDA. I truly appreciate this info. Keep me updated and be well! -Patty Reply
Dawn G, Community Member
2/24/13 9:02pm
Patty, I started a new post with the information. I am unable to post the link. For all my fellow Spinal Cord stimulator sufferers............Reporting an Adverse Event with the FDA, is the first step in getting an investigation going. ....we are suffering because of the SCS, the doctors do not know why and can not help us.....for some it has been a life saver, but for many it has caused great injury..........leaving us with unbearable pain, and debilitating symptoms, a life of misery. If people start reporting what has happened to them to the FDA the lawyers will get involved and possibly start a class action law suit..........the medical community and the highly paid manufacturers will have to research why the SCS can cause such damage and how to avoid it and help to correct the damage. Google FDA MedWatch Form 3500. The first link on the page should take you directly to the reporting page. It is a voluntary form.... Lets start helping ourselves........we have suffered enough....... DAWN Reply
Patty, Community Member
2/17/13 11:37pm
Hi Thanks for writing....you can read anyone of my many posts on this site, and unfortunately due to the horrible experience I have had, along with countless others, I can no way in good faith, endorse or recommend the spinal cord stimulator to anyone. There are simply too many problems with it, so many known and unknown devasting side effects that make your health even worse. I know it's hard when u feel like u don't have an other choice in the world to help alleviate the pain, but this stimulator is not the answer. Good luck to you. Lt me know if u find another viable option. Patty Reply
Patty, Community Member
2/17/13 11:37pm
Hi Thanks for writing....you can read anyone of my many posts on this site, and unfortunately due to the horrible experience I have had, along with countless others, I can no way in good faith, endorse or recommend the spinal cord stimulator to anyone. There are simply too many problems with it, so many known and unknown devasting side effects that make your health even worse. I know it's hard when u feel like u don't have an other choice in the world to help alleviate the pain, but this stimulator is not the answer. Good luck to you. Lt me know if u find another viable option. Patty Reply
Patty, Community Member
2/17/13 11:37pm
Hi Thanks for writing....you can read anyone of my many posts on this site, and unfortunately due to the horrible experience I have had, along with countless others, I can no way in good faith, endorse or recommend the spinal cord stimulator to anyone. There are simply too many problems with it, so many known and unknown devasting side effects that make your health even worse. I know it's hard when u feel like u don't have an other choice in the world to help alleviate the pain, but this stimulator is not the answer. Good luck to you. Lt me know if u find another viable option. Patty Reply
Still hurt'n, Community Member
11/26/12 8:20pm

I am 65 yr's. old and had mine installed last Februray. I lost more tha 50 lbs. over the next 7 months because trying to eat made me sick, and I wasn't overweight to begin with. I can't say I got the relief I did from the trial unit. Now, they can't adjust it properly. I get stimulation under my left pectoral muscle and my butt but they can't get it in the lumbar area, which is where I need it. I have constant and severe muscle spasam in my left oblique area which is where the implant is located. I believe the implant is the cause. When I lay on my back it is like lying on a Skol can so I have to lye on my side which is causing much pain in my shoulders and hips. I've had trigger point injections, 4 nerve blocks and the unit reprogrammed multipule times only to find (1) to no availe and (2) my insurance won't pay for the room rental (it has to be done in a medical facility.) I am giving serious consideration to having it removed. Boston Scientific is the name of the unit. I think it is nothing more than a "bonus check" for the Dr.

I would not recommend this to anyone.

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Dawn G, Community Member
1/ 3/13 4:39pm
Dear Still Hurt'n............you have one of the more recent posts I have found. This web site is crazy, it places old and new threads together. Anyway, I was wondering if you had your SCS removed? I certainly hope so. I had the severe muscle spasms, encompassing the whole chest, down the buttocks to the legs. Some times they are exactly like shaking shills, and SO painful. Getting into a hot bath will really help. My other symptoms are complex and a combination of what all the others have stated they have. The trial stimulation made me very nauseous also. Thus I always had it on low. But the permanent actually caused vomiting immediately post op. I also have an electrical feeling that runs across my skin, feels like bugs crawling on me. Plus a temperature intolerance. And my feet feel like I am walking on glass or they are being smacked with a paddle. The pre-op neuropathic pain is worse now than before the implant. Now I have fibromyalgia. Many have developed that also. My trial was fabulous, so what happened???? None of the docs know. Needless to say, all that have had any of the serious problems, that have had the SCS removed, are still dealing with those issues. It seems there is some type of damage done that will be worse and more likely to remain , the longer it is implanted and may be irreversible. The sooner it is removed the better. Let me know how you are, and any one else out there. Learning from each other will only help when we are speaking with our docs, because we know we are not only in this fight. Dawn Reply
Trina, Community Member
2/ 4/14 9:33pm

I am saddened to here of so many in pain. Untill two weeks ago I to was ready for this thing or should I say desperate. On sun durring praise and wroship I thing maybe after the symptoms have gone from my leggs and feet and mostly my back has been good I pray all can recieve such reliefe I know it is Gods will and I know healing has been paid for in Jesus. I suffered from a failed surgery in 05 and 5yrs before God is the best medicine there is he does help the MD'S Hang in there. I am glad I can now back out of this stim as ya'll have shared it realy does not seem like a good idea for anyone. I pray for everyone to be releaed from PAIN in Jesus name AMEN 

 

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Patty, Community Member
3/19/13 12:44pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! Patty, former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Patty, Community Member
3/19/13 12:46pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! Patty, former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
denkat, Community Member
1/10/13 12:20am

i have had 10 back surgeries a scs for 2yrs. at first it worked fairly well. but now i am back to miserable. i hurt on a 1-10 about a 9 my scs seems to be useless now! i am so sorry now!!!!! i dont know what to do now!!!! my name is kathy  think long and hard about getting an implant!!!!!

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mary, Community Member
1/11/13 11:08pm

I had my scs for only 9 months and had it removed. at first it was great. but i notice everytime it was on it burned at the battery site. also as time went by i got weeker,my  back pain got worse. the stimulator quit working no matter how many times they adjusted, my neck got so stiff , I could not turn it. pain in both arms, numbness, headaches so bad I in up in the emergency room. and the list goes on. as you all well know. Ive had 4 surgerys this year all due to scs,the last was the removal. st. jude needs to stand behind thier product. and they dont. If you buy a lemon car there are lemon law rules. but they can put a device untested in your body and when something goes wrong with it. they run to the next poor sole reaching out for relief.Please if your thinking about the scs ask about warrenties, cost of replacement batteries, how long do they last, what happens if the scs quits working within the year... 

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verysick, Community Member
1/22/13 5:30pm

mary i have a scs and having all sorts of problems with it I am trying to find a dr. that will take it out can u tell me who took urs out please. 

 

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mary, Community Member
1/22/13 9:47pm

very sick

 

Im so sorry  I do know what your going thru.

the Dr. who put mine in and took out is in  brandon Fla. he is an awesome Dr

he is with florida othopedic. 

why wont the dr. that put yours in take it out?

what is your scs doing? you do know there is a recall on not only the battery

charger, but the batttery itself. thru St. Jude I hope you get out. if you need to

talk my email is marynfloyd@aol.com

 

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Patty, Community Member
3/19/13 12:48pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! Patty, former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Patty, Community Member
3/19/13 12:58pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Patty, Community Member
3/19/13 12:57pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
denkat, Community Member
1/10/13 7:27pm

i have had 10 back surgeries a scs for 2yrs. at first it worked fairly well. but now i am back to miserable. i hurt on a 1-10 about a 9 my scs seems to be useless now! i am so sorry now!!!!! i dont know what to do now!!!! my name is kathy  think long and hard about getting an implant!!!!!

Reply
roxie, Community Member
2/21/13 5:10pm
Hi, I had my stimulator removed for the same reason, I have auto immune, following in plant, I had mine in two years, it did help my leg pain but after a car accident stop working, I had it removed in November hoping the joint swelling would go away, it did not, I also have muscle jerks all day long, that did not change yet, I have failed laminectomy syndrome , my whole back goes into spams when I lay down for more then two hours, I have to sleep sitting up, my surgeon said it was from scar tissue, no one told me that could happen, I wish everyone good luck, this does not happen to everyone , but this did happen to me. Roxie Reply
Patty, Community Member
2/21/13 10:46pm
Hi Roxie! I was waiting to hear from you to see how you are doing post SCS removal. I am sorry to hear things still aren't better. It was the same with me.....all the side effects did not go away once the stim was removed, as it unfortunately triggered an auto immune type response in my body. So regardless if the stim was kept in or not, my side effects/problems would continue. I will say that after 7 yrs of having the SCS removed, a couple side effects have gotten a bit better....either that or I'm just used to it and just tolerate it more. Either way, in my case, the SCS had to come out, and I regret the day my doc even suggested this darn device in the first place. Good luck to u Roxie and keep me posted on how u r doing from time to time. Hang in there....u r not alone. Patty Reply
roxie, Community Member
2/21/13 5:10pm
Hi, I had my stimulator removed for the same reason, I have auto immune, following in plant, I had mine in two years, it did help my leg pain but after a car accident stop working, I had it removed in November hoping the joint swelling would go away, it did not, I also have muscle jerks all day long, that did not change yet, I have failed laminectomy syndrome , my whole back goes into spams when I lay down for more then two hours, I have to sleep sitting up, my surgeon said it was from scar tissue, no one told me that could happen, I wish everyone good luck, this does not happen to everyone , but this did happen to me. Roxie Reply
jayne isaacs, Community Member
12/ 6/13 2:10am

I also thought or think i am/was going thru the change since ihad this put in! i have been to mygyn and referred to another gyn. It is causing horriffic belly pain and cramps!

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Maureen, Community Member
7/ 2/09 6:44am

I have had my SCS for 4 years nowsand I love it.  I have CRPS in my right hand, wrist and arm.  The SCS is absolutely wonderful, it has worked miracles for my chronic pain. The lead is in my upper back, it did move once and had to be replaced, but that is it for concerns.  Good luck to you.

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becky, Community Member
7/ 3/09 12:27pm

I had a spinal cord stimulator for 3 years.  It was an answer to prayer for the stinging and burning in my lower extremities.  The vibration was also a relief to the pain. BUT,

I have just had my stimulatior removed because I have developed a, well, it is difficult to describe, a constant state of spasmed muscles from my buttocks to my toes.  Even the arches of my feet cramp and pull my toes under.  My stimulator was implanted in Texas at a world-wide spinal institute.  When I went there with the muscle issue the doctor said, "You scare me!" A different doctor removed the stimulator, but so far there has been no relief from the spasming.  I have been checked for every muscle disease doctors can think of, AND I never had the problem before the stimulator was implanted. I will go to Oschners next month for ANOTHER series of tests.  So far, nothing shows up to indicate it is the reason for the spasming, so we are still thinking it has to be the stimulator.  I only hope, if so, it begins to reverse.  I don't want to scare others, but this is so extreme, I wanted to share.   Has anyone else experienced anything  like this?

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njm, Community Member
6/11/12 12:12pm

Becky, would you send me an update on your post from 2009.  I am considering the stimulator implant.

njmcdarmont@cox.net

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Lynette, Community Member
8/18/12 5:46pm

Becky,

 It is funny you posted this and I so hope you still read this.

 Last night my husband went to the E.R. because he was shaking so badly (the only way he could describe it was like Parkinson's) all over. He could barely speak. The Rep did come down and tested the device but said there was nothing wrong with it, thing is the device was making him feel funny in the tip of his nose and the tips of his fingers, so he turned it off. Then, all of a sudden he started shaking uncontrallably, have you ever heard of this, or experienced it before?

 Now we have to go see a neurologist and see if there is something we are missing, we are terrified...anby suggestions?

Lynette from Ohio

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WM, Community Member
11/ 7/12 6:53am

My husband had a Medtronics stimulator implanted in July 2012 he also is experiencing uncontrollable shaking.  It occurs when the stim is off and can last up to 3 hours then stops as fast as it started.  We were at a PCP visit and they started at her office she immediately sent him to the ER to be checked by a neurologist by the time he came to the room the shaking subsided.  He couldnt find anything wrong with the tests that were ordered we are now seeing specialists at another hospital trying to find out why this is happening.  To date we don't have any answers Medtronic reps state they never heard of such a thing.  The physicians act as though its no big deal but once these attacks happen he says his body is exhausted and sore. Have you had any luck with any answers?

 

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Lynette, Community Member
11/ 7/12 9:29am

No we haven't. He has (since this post) had a CT and an EEG, there is nothing in the CT and we haven't heard the results of the EEG. Seeing a Neurologist in my area is like pulling teeth. They have him on so many drugs that he can't hardly function. Xanax, Klondipin, and the likes. He has had 2 car accidents (actually it was 2 in one day) and no one seems concerned about it at all. Funny Medtronic says they have never heard of this considering there are now two of us posting here huh? Please let me know what the specialist says...and don't hesitate to contact me anytime @ chippewabrat@yahoo.com Good luck!

 

Reply
WM, Community Member
11/11/12 10:01am

I hope your husband is doing better no one can relate to the severity of pain a loved one is going through unless youve been there.  We are still in discussions with the specialists he is going to see a team of physicians after the 1st of the year not sure what will happen.  He had both CT and EEG and tons of blood work no results.  Let me know if you find an answer to the shaking.

Reply
Patty, Community Member
11/ 9/12 2:17pm
Sorry to hear this about ur hubby. I am not familiar with this uncontrollable shaking but I do believe you when you say it's related to the spinal cord stim implant(SCS). If this has been goi g on since July and they still can't figure it out, get it removed ASAP before it causes irreversible damage. Obviously his body is rejecting the implant, as mine did too although in a different way. We are all different and that is why we all experience different symptoms when our bodies are fighting and revolting against something unnatural in our system. Unless the implant is truly giving him incredible pain relief, I would get it removed ASAP. Let me know what happens. If you live in south Florida, I can perhaps give you a name of a helpful doc. Good luck and be well. -Patty Reply
WM, Community Member
11/11/12 10:05am

He isnt happy with the implant at all we have another appointment in a week or so and are meeting with Medtronic rep as well as physician.  We began seeing specialists but no one can figure out the shaking.  How did you finally find a physician that could help it seems everytime I ask questions I just get responses that state 'never heard of that happening before'' its like they dont even say let me look into it and find out if this every happened to anyone before.  So disheartening now he is in even more pain than before the implant.  Who is the physician that finally helped you I will go anywhere to seek help.

Reply
Patty, Community Member
11/12/12 12:37pm
No one doctor ever truly figured out exactly what happened to me, and the pain management docs as well as ANS reps who supplied the SCS implant all said that Issa the only one to have all these symptoms, but they did believe I was having them and I forced them to send me around to diff docs to see if they could figure out what was happening to me. I went to infectious disease doc that ran dozens of tests to make sure I didn't have an encapsualted infection from the surgery causing all of this as well as 3 diff rheumatologist and finally the last one diagnosed me with fibromyalgia, arthritis all from what he explains is a triggered response from a trauma....in my case the trauma was the actual SCS implant. But I have other symptoms that docs still don't know why I'm having nor what to do to help me. As far as ur hubby's shaking, I don't know what to say excepT to keep going to diff docs....neurologists, rheumatologists, infectious disease docs, etc....keep going until someone has something to offer b.c. Believe in yourself, your gut, your hubby that this is all from the SCS implant.....and get it removed ASAP. If its not working and causing all these probs from the beginning, don't think it's going to go away, because it's not. Hang in there. Btw, my rheumatologists name is dr. Adam barron in Jupiter, fl. You can look up his info on the web. But I am sure you can find a helpful doc in your neck of the woods...it just takes time to find one who believes you and will try different things to help. Reply
Julie, Community Member
6/21/13 2:31am
Patty.... I live in south Florida also and I am wondering if you can refer me to some good pain management drs. I am on the trial CSS now and I HATE it! I am miserable and am DEFINATELY getting it removed ASAP and I am now considering the morphine pump instead. Please email me at julielovesreptiles@gmail.com because I do check my email everyday and I most likely will not be able to read responses on this site as fast as I can thru email. If anyone else on this blog knows of pain management doctors, orthopedic drs, or anyone in Florida who can help me, please feel free to email me at.... Julielovesreptiles@gmail.com as well. Julie Reply
Patty, Community Member
6/24/13 1:22pm
Hi Julie I can only recommend what I know and that's Jupiter Pain Management in Jupiter, FL. They're located inside the Jupiter hospital and have excellent docs and nurses. Definitely get rid of that darn SCS quickly if its not working for you, and if I were you, talk/ chat to a lot of people with the morphine pain pump b/c that's not an easy road either, from my friend's experience. Unfortunately, there are not a lot of ideal long term chronic pain solutions out there. I wish I had more info for you..... Best of luck to you!!!! -Patty Reply
Patty, Community Member
3/19/13 1:30pm
******Attention******Very Important Info for SCS Sufferers!!!***** First, I am a SCS patient, like you, who has many various horrid side effects from the SCS. I am NOT a lawyer, rep, nor making any money by requesting SCS patients like yourself to report your side effects to the FDA. Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is listed below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years, (just read my posts on this message board) http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Patty, Community Member
3/19/13 1:00pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Worried Relative, Community Member
11/22/12 11:38am

Dear Becky: Were the muscle cramps really painful? I ask because I am trying to figure out what happened recently to my sister. My sister had an implant put in about 10 days ago. I am staying with her. Three nights ago, I was awakened by her SHRIEKING in pai, and when I ran into her room, she was writhing on the floor. She couldn't talk the pain was so bad. My husband and I spent almost an hour pulling on her feet and toes because the toes were pointing in spasmAWAY from her body. I was leaning with all my strength on her calf muscles trying to stop the spasms. If we let up even for a second, she started shrieking so I couldn't even let go to call 911. SInce the pulling and pressure we were exerting seemed to be helping, we just kept it up and eventually the pain released. She refuses to consider that the implant may have caused the spasms. She has been in terrible pain for years after two injuries, once sustained while on active duty in Afghanistan, and has had three back operations. She doesn't want to lose her retirement benefits and is trying tofinish her 20 years. In fact, she never told us she was having the implant until this morning, but although she has had muscles spasms before,when I  have been with her, but NEVEr down both legs at once. Has anyone heard of similar pain spasms down both legs that cause the toes to curl into towards the botton of the foot?

Reply
Bonnie, Community Member
3/21/13 8:53pm

I just posted a long rundown for Patty about my husband's problems with the spinal stimulator.  One of the symptoms I forgot to list is muscle spasms and the feeling of his toes being pulled under.  He also started getting muscle twitches in his arms (I had to duck a few times) and towards the end started getting "parkinson's like" spasms in his hands.

Reply
Kelly Clark, Community Member
6/10/14 6:58pm

Hi,

 

I know this post was from awhile back but my mother has the SCS and is experiencing the same symptoms with the spasms.  We are desperately trying to find something to help with the pain. I would love to know if anything helped with your sister.  We can't stand to see my mom is so much pain! 


Thanks!
Kelly  

Reply
becky, Community Member
7/ 3/09 12:35pm

I had a spinal cord stimulator for 3 years.  It was an answer to prayer for the stinging and burning in my lower extremities.  The vibration was also a relief to the pain. BUT,

I have just had my stimulatior removed because I have developed a, well, it is difficult to describe, a constant state of spasmed muscles from my buttocks to my toes.  Even the arches of my feet cramp and pull my toes under.  My stimulator was implanted in Texas at a world-wide spinal institute.  When I went there with the muscle issue the doctor said, "You scare me!" A different doctor removed the stimulator, but so far there has been no relief from the spasming.  I have been checked for every muscle disease doctors can think of, AND I never had the problem before the stimulator was implanted. I will go to Oschners next month for ANOTHER series of tests.  So far, nothing shows up to indicate it is the reason for the spasming, so we are still thinking it has to be the stimulator.  I only hope, if so, it begins to reverse.  I don't want to scare others, but this is so extreme, I wanted to share.   Has anyone else experienced anything  like this?

Reply
becky, Community Member
7/ 3/09 12:48pm

I had a spinal cord stimulator for 3 eas.  It was an answer to prayer for the stinging and burning in my lower extremities.   The vibrations was also a relief to the pain, BUT I have just had my stimulator removed because I have developed a, well it is difficult to describe, a constant state of muscle spasm from my buttocks to my toes.  Even the arches of my feet cramp and pull my toes under. My stimulator was installed in Texas at a world-wide back institute.  When I went there with the muscle issue the doctor said to me,  "You scare me.  You are as hard as a rock!"  A different doctor removed the stimulator in April.  So far there has been no relief, but I never had this problem before AND, I have been tested for every muscle disease or condition that the doctors can think of.  I will go to Oschners next month for another round of testing.  I only pray that we can find some answer.  The pain is, sometimes, almost unbearable.  I don't want to scare anyone, but I thought this was so extreme that I should share and find out if anyone else has experienced anything similar.  I am so grateful to have found this forum!

Reply
becky, Community Member
7/ 4/09 12:06am

Sorry for posting my answer three times.  This was my first time and I didn't notice it was added to the bottom of the page rather than the top.  Wish I could delete two of them, but I think I will have to just live with it! Sorry!

Reply
Nicoletti, Community Member
9/ 4/09 2:55pm

No problem,I did it myself when I first started posting! Nicoletti.

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amanda, Community Member
7/17/09 10:06pm

Hey Patty my husband had a spinal cord stimulator implanted back in Nov.2008 he has had a lot of trouble with his he actually just got out of the hospital on June 12th because he ended up getting double nomonia in both lungs and he also ended up with ARDS ( Acute Respitory Destress Syndrome ) we didnt think he was going to make it !! The doctors are not quite sure if the stimulator caused all this or not but its a good possibility it did. They are still checking into it . So if I were you I think I would think twice about having the thing taken out . As soon as my husband can go under with another surgery hes going to have it removed . Honey I would think twice about them things they are dangerouse Im not trying to scare you I just want everyone to know what hes been thru in the past 2 months and what our family has been thru because of this spinal cord stimulator. Take care and hope you find your answer !!! 

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Carol, Community Member
11/ 7/09 10:24pm

Hi -

 

My mother had an ANS stimulator implanted for post-shingles related nerve pain in 2005.  Within two weeks she started having problems with her neck that only got worse to the point that by the end of the summer she could not hold her neck up.  Her chin pretty much rests on her chest all the time which has made tasks of daily living such as grocery shopping almost impossible.  We have consulted with the fine physician who did the surgery probaby three or four times about this issue and he is convinced that it must just be a coincidence (her leads go from the lower lumbar spine up to T2).  A physician at Johns Hopkins thinks that there may hav been nerve damage from the insertion of the leads.  My mom is at the point that she just wants the leads and battery removed so she can have an MRI to hopefully find out what the problem with her neck might be.  She has told me that if she had to do it all over again she would not have the implant -- the benefit has not been worth the added burden of the neck weakness.  She says that the neck weakness now gives her more problems than the PHN -- also she could not reduce her meds with the SCS; it just became one more thing to help (mostly) manage her pain along with various prescription drugs.

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Patty, Community Member
3/11/11 5:38pm

hi

i am so sorry to hear about ur mom and all that she is going thru with the scs.

thanks for your post regarding the spinal cord stimulator from awhile ago.  i just got it.....go figure.

anyway, i would be interested in emailing u more and find out more about ur situation and u can learn more about mine. sounds like we both got a raw deal when it came to this scs.

if u get this and are interested, respond back to me here, and then i will give u my email ok.

i hope u are doing well or at least better than me. =)

-patty

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Mary, Community Member
10/12/10 8:18am

Patty,

 

I posted a response to your question yesterday, but I'm not sure you are even still reading this sight. I was wondering since your post if you've had any success finding relief from your symptoms.  As I said yesterday, my symptoms mirror yours in almost every way and I'm starting to get really frightened that they aren't going to go away. I can't imagine living the rest of my life like this; it was bad enough living with the back pain.

Reply
Patty, Community Member
3/11/11 5:33pm

hi mary

thanks for your post regarfing the spinal cord stimulator from awhile ago.  i just got it.....go figure.

anyway, i would be interested in emailing u more and find out more about ur situation and u can learn more about mine.

if u get this and are interested, respond back to me here, and then i will give u my email ok.

i hope u are doing well or at least better than me. =)

-patty

Reply
Tara, Community Member
4/20/12 11:17am

Hey  I have just learned of this site and have been reading all posts...I got my stimulator March 11, 2011 and have had great relief since until recently...My pain is back and worse.. I have mine up to the right of spine in neck...I broke c 4 5 6 and T1 vertebrae 16 yrs ago and pain got so bad needed to try this..I am not sure if stimulator causeing my problems right now or not but Ive got to find out..Im miserable.  I am hurting again like a knife stabbing me i between my shoulder blades..blood pressure has been high ( which is lower now cuz of meds)  Face ears neck and head always feels like is on fire and i am having a horrible constant headache....Do you or anything thik this is stimulator related?   Thanks  Tara, desperately seekig help

Reply
Patty, Community Member
5/ 2/12 2:58am
It has been awhile since my last post. Just to catch you all up, I had ANS SCS implanted back in fall of 2005 but then had to have it removed due to many factors...the stimulator was malfunctioning, shocking the wrong areas like ribs & chest & not my lower back as needed, doctors couldn't get the stimulator to capture the right areas like they did in the 3 day trial, immediately started having side effects from this implantation surgery such as: constant fever & chills, extreme fatigue, joint pain, joint swelling, swelling in hands, feet, head, arms,legs,etc, joint stiffness, joints all over my body that never bothered me before were now acting up, numbness in extremeties from all the swelling, inability to regulate my own temperature (I'm sweating in cool a.c. Indoors and freezing outside in 80 temps), fibromyalgia, inability to concentrate, can't cool my body down like I used to....I stay overheated for no reason, hot flashes, face feels like its on fire, and of course depression from all of these countless lovely side effects I did not have before the spinal cord stim surgery. I wish I never had it done and I do not recommend it on anyone. It has made my situation exponentially worse, and I regret the day I ever did it. I had the SCS removed in spring 2006 after trying many times to get the darn thing to work properly and to give it a chance, but enough torture was enou for me. Out it came, but all my problems still exist to this day, 6 years later. You would think that would be plenty of time for a body to get that junk out of its system and return to normal, but my primary care doc says the SCS triggered a severe inflammatory response in my body and the symptoms may never go away. So thanks to greedy ANS and their malfunctioning SCS, they have left me in more pain and more disabled with less quality of life than before their surgery. I thought docs took vows to do no harm to patients. Be very careful as ANS new about some of these side effects but hid them from me as well as countless other patients just so they could get a pay day. They lied about the side effects I was having, telling me that I was the only one and no one else had ever had problems like me. Unfortunately, I found out all of this after the fact. So, please, please,please let this be a warning to those who are considering a stimulator implanted in your spinal column....don't do it. I wish someone was there for me giving me this info 7 years ago when I was just 31yrs old. I now just celebrated my 38 bday yet I feel like I am 88 from all the problems &side effects from the SCS, and I am not exaggerating!!! Best wishes to you all on your journey to recovery and to a new normal. -Patty Reply
Patty, Community Member
5/ 2/12 3:15am
All I can tell you is what has happened to me, and then you can make your own decisions from there. I had ANS SCS implanted back in fall of 2005 but then had to have it removed due to many factors...the stimulator was malfunctioning, shocking the wrong areas like ribs & chest & not my lower back as needed, doctors couldn't get the stimulator to capture the right areas like they did in the 3 day trial, immediately started having side effects from this implantation surgery such as: constant fever & chills, extreme fatigue, joint pain, joint swelling, swelling in hands, feet, head, arms,legs,etc, joint stiffness, joints all over my body that never bothered me before were now acting up, numbness in extremeties from all the swelling, inability to regulate my own temperature (I'm sweating in cool a.c. Indoors and freezing outside in 80 temps), fibromyalgia, inability to concentrate, can't cool my body down like I used to....I stay overheated for no reason, hot flashes, face feels like its on fire, and of course depression from all of these countless lovely side effects I did not have before the spinal cord stim surgery. I wish I never had it done and I do not recommend it on anyone. It has made my situation exponentially worse, and I regret the day I ever did it. I had the SCS removed in spring 2006 after trying many times to get the darn thing to work properly and to give it a chance, but enough torture was enou for me. Out it came, but all my problems still exist to this day, 6 years later. You would think that would be plenty of time for a body to get that junk out of its system and return to normal, but my primary care doc says the SCS triggered a severe inflammatory response in my body and the symptoms may never go away. So thanks to greedy ANS and their malfunctioning SCS, they have left me in more pain and more disabled with less quality of life than before their surgery. I thought docs took vows to do no harm to patients. Be very careful as ANS new about some of these side effects but hid them from me as well as countless other patients just so they could get a pay day. They lied about the side effects I was having, telling me that I was the only one and no one else had ever had problems like me. Unfortunately, I found out all of this after the fact. So, please, please,please let this be a warning to those who are considering a stimulator implanted in your spinal column....don't do it. I wish someone was there for me giving me this info 7 years ago when I was just 31yrs old. I now just celebrated my 38 bday yet I feel like I am 88 from all the problems &side effects from the SCS, and I am not exaggerating!!! Best wishes to you on your journey to recovery and to a new normal. Take care!! -Patty Reply
roxie, Community Member
11/ 9/12 1:04am

thank you i now dont feel crazy, i have most of the same systoms. mine comes out this tuesday. Roxies

Reply
Patty, Community Member
11/ 9/12 2:20pm
Good luck Roxie with the removal. I truly hope your symptoms start to subside once it is out. Don't be surprised or disappointed if they don't right away....I've had mine out for over 6 yrs and some symptoms are gone but some are still with me for life it seems.hang in there.....it gets better once it's out....can't get worse, right!! -patty Reply
roxie, Community Member
11/12/12 6:32am

Thanks Patty, i now dont feel so alone, Metronics told me im the only person having these problems, i statred to feel crazy, how do they sleep at night, 

Reply
Patty, Community Member
11/12/12 12:21pm
Hi Roxie. You are not going crazy by any means....medtronics, like ANS, is just as deceptive when they lie about all the symptoms and side effects the SCS implant causes. Hang I there....hopefully your ordeal ends tomorrow with the removal of the darn thing. Best of luck and KIT( keep in touch). -Patty Reply
Grace2U2, Community Member
11/16/12 8:25pm
Hi Roxie and Patty...I feel so badly for each if you. One thing I remind myself of is that when one is living with severe pain, we are hopeful that interventions like the SCS will afford us a better quality of life. With that said....Include me as another who highly suspects the SCS as being detrimental to the well being of many. I continue to have declining health which I believe stems from the Cervical SCS I had implanted 7/2010 and removed 12/2011. I was at a restaurant when suddenly the Medtronic System malfunctioned. I felt as though I was being internally fried throughout my body. I now have severe headaches, various facial/eye/head pain, chronic neck and back of the head pain, and fibromyalgia. In addition to recurring episodes of chronic fatigue and an array of symptoms which seem autoimmune in nature....(have not yet met with rheumatologist)...there's the challenge of depression. If ANYONE IS CONSIDERING A CERVICAL SCS...... Please do your homework before moving forward. I Praise The Lord for this opportunity to connect with others.... Reply
Patty, Community Member
3/19/13 1:05pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
ctcgirl28, Community Member
4/25/13 10:18am

Patty,

 

I just found this post today, 4/25/13. I had my St. Jude SCS implanted on 3/28/13. I am having all these crazy pains in my body, much like yours. My feet and joints hurt all the time. I have swollen hands and fingers. I cannot wear my wedding ring anymore. I am taking more pain medication now than I did before the implant. I am only 46.

 

The first night after my second surgery to fix a lead...I had severe chest pains/spasms and the next day I spiked a 102.8 fever. I was miserable. I walked and moved like Frankenstein... I have some decent days...More bad than good anymore. I am depressed and on anti-depressants. I am resigning my position as a teacher at the end of this school year because I cannot do my job without being in pain. The doctor who did the implant is actually a friend that I graduated with. He is a really good man. I thought this pain was all me and that I was being a big baby about it. But now, I know that I have to have this SCS removed before it damages ME more. Thank you for posting all of your accounts. God Bless You!

 

Julie

Reply
Bonnie, Community Member
4/29/13 3:06am

 Hi Julie,

First of all, believe that your pain is real and you are not alone in having the problems you are having after implant.

 My husband had a Boston Scientific stimulator implanted in 2010.  Two hours out of surgery his right foot began to swell.  The swelling worsened over the next couple months to include his entire leg.  During this time he also had problems getting the stim to work in the right places, pain when lying on his side where the battery was implanted, sharp "needle pokes" to his eyes and face (his doctors assured him it had nothing to do with the stim since it was implanted in his mid back), numbness in his hands, bladder and bowel problems.  He begged for a year for them to remove it.  They finally did almost a year to the day of implant.  After removal his symptoms got progressively worse.  His swelling progressed to his left foot and leg and eventually up into his torso.  His skin on his feet, hands, and lips started splitting and bleeding.

 

He passed away on Feb. 13, 2013.  He went in his sleep after over 2 years of agony that started when the stimulator was put in.  By the time he died the swelling had progressed to his face, to the point that he could hardly open his eyes.  He was only 42.

 

This product is dangerous and should be taken off the market.  I'm curious who gets the kickback for selling this thing and then do they get paid by how long it's left in?  They sure don't bother to mention all these side effects. 

 

Please go to the FDA website and register a complaint about the product.  Just google FDA form 3500 and it takes you right to it.  You will receive a response in the mail with a case number.  Making ourselves heard is the first step to getting these side effects recognized and taking this dangerous product off the market. 

 

Bonnie

Reply
Patty, Community Member
5/ 2/12 3:15am
All I can tell you is what has happened to me, and then you can make your own decisions from there. I had ANS SCS implanted back in fall of 2005 but then had to have it removed due to many factors...the stimulator was malfunctioning, shocking the wrong areas like ribs & chest & not my lower back as needed, doctors couldn't get the stimulator to capture the right areas like they did in the 3 day trial, immediately started having side effects from this implantation surgery such as: constant fever & chills, extreme fatigue, joint pain, joint swelling, swelling in hands, feet, head, arms,legs,etc, joint stiffness, joints all over my body that never bothered me before were now acting up, numbness in extremeties from all the swelling, inability to regulate my own temperature (I'm sweating in cool a.c. Indoors and freezing outside in 80 temps), fibromyalgia, inability to concentrate, can't cool my body down like I used to....I stay overheated for no reason, hot flashes, face feels like its on fire, and of course depression from all of these countless lovely side effects I did not have before the spinal cord stim surgery. I wish I never had it done and I do not recommend it on anyone. It has made my situation exponentially worse, and I regret the day I ever did it. I had the SCS removed in spring 2006 after trying many times to get the darn thing to work properly and to give it a chance, but enough torture was enou for me. Out it came, but all my problems still exist to this day, 6 years later. You would think that would be plenty of time for a body to get that junk out of its system and return to normal, but my primary care doc says the SCS triggered a severe inflammatory response in my body and the symptoms may never go away. So thanks to greedy ANS and their malfunctioning SCS, they have left me in more pain and more disabled with less quality of life than before their surgery. I thought docs took vows to do no harm to patients. Be very careful as ANS new about some of these side effects but hid them from me as well as countless other patients just so they could get a pay day. They lied about the side effects I was having, telling me that I was the only one and no one else had ever had problems like me. Unfortunately, I found out all of this after the fact. So, please, please,please let this be a warning to those who are considering a stimulator implanted in your spinal column....don't do it. I wish someone was there for me giving me this info 7 years ago when I was just 31yrs old. I now just celebrated my 38 bday yet I feel like I am 88 from all the problems &side effects from the SCS, and I am not exaggerating!!! Best wishes to you on your journey to recovery and to a new normal. Take care!! -Patty Reply
Patty, Community Member
11/19/12 3:09am
Hi! I just joined this website in the hopes of learning from others and sharing experiences. I really could use some help right now. I am 36 yrs old and am living with chronic acute pain in my lower back, legs, groin, and now neck. I was injured at age 24 in an accident, leaving my spine in a complete mess...you name it, I've got it in my lowerback from L1 to S1 and in my neck crom C1 to C7. I've tried several surgeries, therapies, injections, accupuncture, reiki, massage, pool therapy, countless pain meds, and even a spinal cord stimulator. Nothing has helped. Some made it worse, specifically the spinal cord stimulator. I had to stop working altogether at a job i love at age 27 due to the pain. I have been unable to return to work since then.  I am so lost now as I feel like I do not have a direction, a goal, have some kind of meaning to my life.  This has been going on for almost 10yrs now and I am more than frustrated with not being able to get better. All the docs offer me now is pain management.  I am homebound/shut-in as I am unable to drive 90% of the time.I am missing out on the prime of my life. All my old dreams and goals are gone now as they are not feasible with my pain/condition. My old self is dead, and I can't seem to stop from mourning who I was and what I was going to accomplish in life.  I can't seem to find anything new that I can do to make me happy and get me going again. I want to LIVE & THRIVE, and not just be in survival mode anymore. Is there anyone out there who knows what I am going thru? I sure could use some advice, some help, someone to talk to. Please. Thank you for taking the time to read. I appreciate it a lot. Reply
Maxpower429, Community Member
12/ 9/12 3:53am

hi Patty, I'm 36 and i have similar issues mine start at my neck and go everywhere. I feel your pain. I haven't worked in 2 years, I used to be a Ironworker in Chicago now I can't even wear a tool belt or my left leg loses all feeling and works like a rusty hinge. The veterans administation is paying for me to go to college. Without that I would be forced to move back in with my parents and fall into a hopeless abyss. 2 weeks before my accident I was invited to train with UFC fighter from Chicago, having trained the majority of my life including 4yrs in the USMC infantry, I finally was going to become a professional fighter. Then it all ended in a blink of an eye. I still go to the gym, I just don't do anything that puts stress on my back or thumbs (the socket where the thumb connects the hand is blown out too the only solution is fusion for that). Heres a funny story 9 months after my last accident, my wife decides she doesn't want to be married... Should have known since the night we returned from our honeymoon I had a amblicul hernia and she wouldn't get out of bed to drive me to ER. I drove myself and had emergency surgery! Please if you want to talk to someone else who's life has crumbled around them due to pain email me at maxpower429@hotmail.com I realise that if I acheive my degree no company is going to hire me due to the pain meds............

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Patty, Community Member
1/10/13 1:00pm
Hi Maxpower! Sorry it took awhile for me to respond to ur post....u know how it is around the holidays and with family around visiting. Anyway, thank u for ur email and sharing ur story. I am sorry to hear about your horrific ordeal and do sympathize with you. I hate to hear more stories of people in pain, and losing their once active lives because of it. It's so hard to adjust...it's been over 10 yrs for me and I am still trying to adjust to not being the once independent, care free, exuberant person I once was. Unfortunately, chronic pain makes us lose out on a lot in life, no matter how hard we try to fight it Thanks for ur email, but for now, I feel more comfortable/safe just chatting on this forum/website. Is nothing personal, just cant be too careful these days online with all the ID theft and cyber non-sense going on. I would enjoy continuing to chat and share with you if u like. Please be well and hope 2013 is better for us all. Reply
Rainman, Community Member
1/10/13 11:20pm

Patti, I have had the same feelings for the past 5 years from my spine injury and Boston Scientific Implant.  I want my old life back and I try to do anything and everything like walking or riding a bike to try and improve my muscle strength and hopefully improve my back.  Also, lost 105 pounds in the past year, but that has not happened either.  I feel suicidal allot and just get tired of living this was in my 50's .

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Patty, Community Member
1/11/13 3:37am
Hi Rainman! Thank u for ur email and sharing ur story, too. I am sorry to hear about all you have gone thru, and do hope that by talking amd sharing with others like ourselves that we can help each other out. On a birighter note, kudos to u for losing all that weight despite being in tremendous pain. How did u do it? That's most impressive and you should be very proud of yourself for doing that. The fact that u committed ur self to get better is wonderful and says a lot about yourself....that u indeed want to make life better for and u are willing to work at it regardless of the obstacles. I understand as I went thru a similar weight loss yrs ago, hoping that it would help my chronic pain (which it did not unfortunately)....and unfortunately I gained all the weight back despite trying and wanting desperately to keep it off just for other health reasons. it's just much harder to maintain weight loss when u can't be as physically active as you'd like or need to be. Anyway, please feel free to continue to write here so we can all and share....and vent our frustrations. Maybe if there's enough interest, I will open up a more personalized message board/ website for chronic pain sufferers like ourselves who just want to talk to others in similar situations. Please don't give up as there is still a lot of life left in u....I can tell, plus u are still young in ur 50's!! and even though on our worst days, when we want to throw the towel in completely, we still find the courage to soldier on. And that's b.c. we all want to be better, get better and feel better. Take care Rainman! Ttyl Reply
Patty, Community Member
3/19/13 1:03pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Judi, Community Member
7/ 2/12 12:54am

Tara,I would sugguest you read about CRPS, RSD on the internet. I have CRPS in my right foot, leg and has spread to my hip from the results of a back surgery.  I am entertaining the possibility of the SCS.  I has constant stabbing like an ice pick in my ankle, and leg.  It burns as though someone is holding a lighter to my leg.  These are all pains associated with CRPS.  Best of luck to you and I hope you fine relief. Judi 

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Maxpower429, Community Member
12/ 9/12 3:23am

Hi, I am researching the scs now, but I have many herniated discs and the lowest three are almost gone along with every disc leaking and degenerating. I fell 15ft landing on my heels compressing everything and shooting me 20ft backwards. Then a couple years later a thoughtless driver turned in front of my motorcycle, I was like a throwing star flying into oncoming traffic.. So I have crazy pain everywhere, but no doc can explain the sharp stabbing pain under my right shoulder blade. I can't say its the worst of my pain but its the only one that I haven't been able to releave ever. Scared its lung cancer  that pain doesn't move, all the others shoot up or down. If it wasn't for my 5 and 6 yr old kids life wouldn't be worth living. I wish this is my miracle.

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Patty, Community Member
3/19/13 1:02pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Patty, Community Member
3/19/13 1:01pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Peter, Community Member
10/19/10 1:06am

I'm just plain confused. My situation is I have had a disc replaced at C 6/7 (1995), have slight disc buldge at C5/6 and 4/5 plus arthritis at C2/3, C4/5. I have had a crushed fracture at T9/10 (1980) and also have arthritis at this level and L5/S1. I can't fell much below my waist except pins and needles, can only walk short distances. I get pain through my neck and shoulders and both my legs and arms fatiage very quickly. On my left hand my ring and little finger are numb as is the side of my hand. I take a truck load of medication for pain and due to pain and lack of exercise I now have type 2 diabities. My Dr said that this implant will only work on one source of pain. He is looking to use Neurostimulation to treat the C2/3, C4/5 arthritis. My concern is there appears to be alot of information about how good these things are or they are not suitable and dont work for some, but as far as anything but the standard side effects that comes with all operations (and MRI's) there is little other do's or don'ts. Even Medtronic's Neurostimulation therapy information does not highlight any "Don'ts" that could satisfy concerns. Any information would be great.

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Patty, Community Member
5/ 2/12 3:02am
It has been awhile since my last post. Just to catch you all up, I had ANS SCS implanted back in fall of 2005 but then had to have it removed due to many factors...the stimulator was malfunctioning, shocking the wrong areas like ribs & chest & not my lower back as needed, doctors couldn't get the stimulator to capture the right areas like they did in the 3 day trial, immediately started having side effects from this implantation surgery such as: constant fever & chills, extreme fatigue, joint pain, joint swelling, swelling in hands, feet, head, arms,legs,etc, joint stiffness, joints all over my body that never bothered me before were now acting up, numbness in extremeties from all the swelling, inability to regulate my own temperature (I'm sweating in cool a.c. Indoors and freezing outside in 80 temps), fibromyalgia, inability to concentrate, can't cool my body down like I used to....I stay overheated for no reason, hot flashes, face feels like its on fire, and of course depression from all of these countless lovely side effects I did not have before the spinal cord stim surgery. I wish I never had it done and I do not recommend it on anyone. It has made my situation exponentially worse, and I regret the day I ever did it. I had the SCS removed in spring 2006 after trying many times to get the darn thing to work properly and to give it a chance, but enough torture was enou for me. Out it came, but all my problems still exist to this day, 6 years later. You would think that would be plenty of time for a body to get that junk out of its system and return to normal, but my primary care doc says the SCS triggered a severe inflammatory response in my body and the symptoms may never go away. So thanks to greedy ANS and their malfunctioning SCS, they have left me in more pain and more disabled with less quality of life than before their surgery. I thought docs took vows to do no harm to patients. Be very careful as ANS new about some of these side effects but hid them from me as well as countless other patients just so they could get a pay day. They lied about the side effects I was having, telling me that I was the only one and no one else had ever had problems like me. Unfortunately, I found out all of this after the fact. So, please, please,please let this be a warning to those who are considering a stimulator implanted in your spinal column....don't do it. I wish someone was there for me giving me this info 7 years ago when I was just 31yrs old. I now just celebrated my 38 bday yet I feel like I am 88 from all the problems &side effects from the SCS, and I am not exaggerating!!! Best wishes to you all on your journey to recovery and to a new normal. Take care of yourself! Reply
Eleanor, Community Member
3/10/11 7:25pm

I had my implant 2 years ago.  Right off the bat I got very sick throwing up and so on doctors found out I picked up some nasty bacteria and where still having problems to this day I have lost over 55lbs.  That's great but not the way I lost it...  Then I started getting nasty pain out where the lead wires were  just down from my neck. Doctors don't understand why I'm having so much pain. They have taken x-rays but the lead wires are in place.  So I also would like to know if anyone out there has had any problems like mine from the stimulator.  One Dr. said to take it out and see if it's from the stimulator, the other say's put a different type in, but either way it's more surgery.  They now also can't seem to get the stimulator adjusted to work in the correct area.

 

Sincerely

Wondering if I should of had this done

 

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Patty, Community Member
3/11/11 5:41pm

hi

thanks for your post regarding the spinal cord stimulator from awhile ago. 

i had a similar problem with my scs not being able to get the darn thing to work properly, also thinking that i had an infection from the surgery, etc....

if i could do it all over again, i would have NEVER done it as i am way worse now than ever!

anyway, i would be interested in emailing u more and find out more about ur situation and u can learn more about mine. sounds like we both got a raw deal when it came to this scs.

if u get this and are interested, respond back to me here, and then i will give u my email ok.

i hope u are doing well or at least better than me. =)

-patty

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Eleanor, Community Member
3/26/11 2:56pm

It sure would be nice if they could tell you all the side effects when you have something done.   I sure hope your days get better.  As for me I will never get any better I can only get worse.  All I do now, is set myself some goal to do on a list and try to do what I can on them.  Might take me one day might take me a month. Pain medication and lay down time.. Laying is the only way my pain get less. I would like very much to keep in touch.

 

Eleanor

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Patty, Community Member
6/ 6/11 5:03pm

Hi Eleanor!Y

es, I agree with you....wish they could tell you all the side effects ahead of time before going thru with implanting this spinal cord stimulator (scs). As with me, my doctors and the ANS representatives hid the truth about the scs, and then when I started having problems with it, they denied that it could even remotely be caused by the scs.  I wish that all the patients that have been adversely affected by these scs could bond together and put together a class action lawsuit to tell these scs companies, like ANS and Medtronics, how hiding severe side effects and lying about the problems associated with them, is not acceptable. It is simply horrific to treat patients like this at all.  They are ruining what quaility of life some of us have left and its not ethically or morally right for them to just use us as guinea pigs and just "see what happens" when they implant these malfunctioning machines in us. 

With regards to your pain and your daily activities, you and I sound very similar. It is doubtful that I will get any better as my condition is degenerative in nature.  I am only 37 yrs old and feel like an 80yr old most days.... I'd hate to see what I feel like at age 80. Like yourslef, I have to pace myself when doing things, lay down to rest and stretch frequently,and take lots of meds for the pain and other residual issues resulting from the scs.

For me, going to a heated (indoor) pool 3-4times a week is what keeps me going. It helps as i can do exercises and stretchs in the water that I cannot do on land or outside the water.  Plus the 90 degree water helps soothe muscles, and pain in all my joints, as well as its very relaxing.

Hang in there Eleanor and hope to chat with you again.

Take care!

-Patty

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snowbear, Community Member
10/24/12 1:41pm

Hi Eleanor, strange side effects are the thing I am now learning about. My Stim was placed in me 5 1/2 years ago and had stopped working suddenly back around late May early June 2012. It would not respond at all. During this time I began to get sick, and sicker, and sicker yet. For a period of 9 weeks I vomited at least 1 time a day and many days it was several. I was nausius all of the time, I was running low grade fevers daily, I was either too hot and swetting like crazy with the unability to cool my body or I was so cold I couldn't warm myself. When they got my stimulator up and running it actually got worse and I spent a few days in the hospital with a blood infection, no one can tell for sure that it was due to the stimulator but after reading these posts I am begining to wonder. The stimulator works fine, not quite as well as the trial but close enough, I have RSD of the lower extremities and my right arm/shoulder/hand and it is orbital effecting the front portion of the involved limbs. I am continuing to have problems even today, pain and irritation around the stim site, I can feel the wire placement in my back, the back of my legs are now painfull, bearable , but painfull, and my knees have really felt like I have taken a heck of  a beating, all of this is unassociated with the RSD. Up until this happened I would have told anyone to consider getting the implant, now I am left wondering if any of this is worth it anymore. My Infectious Disease Doctor wants me to contact the company rep to inquire whether the implant has a history of heavy metal poisoning in anyone! If I had to do it over again I may be more reluctant to have the implant, however, it has been making my pain so much more liveable, it is a hard thing to figure out and no one wants to point a finger at the implant specifically without more definative results and correlation. So, Eleanor I wish you well, on a case by case basis and weighing all of the evidence, I probably would have gone through with it to have experienced the quality of life that I have had with it up until recently.  

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Patty, Community Member
3/19/13 1:06pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
barbara banack, Community Member
4/25/12 7:42pm

hy ladies i had the implant twice, an removed twice because of staff.So please dont ever do it again as i am just recovering today, the antibiotics also  had an alergic reaction to, so please beleive me dont ever do it again hope this helps, cant wait for the future scar tissue to begin

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Kelly, Community Member
10/23/12 12:32pm

Eleanor, your situation sounds miserable and my heart goes out to you!  I was specifically looking for a reply like yours!  My mom had 4 back surgeries and in a final attempt to be pain free has a trial of the simulator currently which was placed last week.  Two days after the leeds were inserted she got very sick and vomited for 3 days until she finally called 911 & was taken to the hospital & rehydrated several times.  She said after on the 2nd day of vomiting, she disconnected the simulator because it upset her stomach so much more.  She has the leeds removed today.  She has never been so sick in her entire life.  The hospital told her it was just a stomach virus going around but the timing of her simulator insertion is too ironic and I think it's God's way of telling her not to go through the with the permanent simulator.  I'm curious to know how they knew you picked up a nasty bacteria?  They didn't do any tests on my mom just assumed it was a bug. 

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Patty, Community Member
11/ 9/12 2:25pm
Is not a virus or bug.....it's the darn SCS implant. Those spinal cord stimulators stimulate all sorts of nerves in out bodies....even more than what it is supposed to target for pain, and as a result, all sorts of different symptoms pop up. I had my docs and implant reps try to feed me all sorts of b.s. to try to explain that the implant was not the cause of all these problems...but they were lying thru their teeth about it the while time I was suffering. Your mom is smart not to have it permanently implanted. Don't do it....it made my condition worse. Hang in there and thanx for sharing. -patty Reply
Eleanor, Community Member
12/17/12 12:41pm

Believe it or not I was sick for over two year.  I had another Dr. app.  She was gone that day so I had to see a nurse practioner, told her my story and she said I know what you have ran.  So she ran a certain test an sure enough I had a bacteria in my small intestines.  Except no one know where it came from.  But to this day I'am still  having problems with my stomach.  All of it started right after I had the implant put in and I mean right after..  I don't even trust Doctors any more.  Hope you find out about what going on with your mom.  I'm not going to have a new one put in because of the problem that I'm having right now with the uper part of my back where the lead wires were put in.

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Patty, Community Member
3/19/13 1:04pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
carol clark, Community Member
6/ 6/11 11:02am

Hi Patty,

I am currently on the trail basis of having my stimulator implanted, but to tell you the truth I don't think I will.  From the first day of the implant, (three days now) I was dizzy and threw up twice, for the next two days I suffered severe vertigo.  I have a doctor's appointment at 2:00 this afternoon and can't wait to get it out.  I really don't think it's for me.  The pain in my back just from the implant is so severe that it masks the real pain I went in for, my groin and left side seem bearable.

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nana13, Community Member
6/ 6/11 3:49pm

I had my stimulator placed last wednesday....it is out tomorrow....it is awful....I now have numbness in my right foot,,,did not have this before...the pain is worse in my back...my legs tingle all the time...I cannot sleep....could not imagine; having a permanent one. place...that is...does anyone know what else to do for chronic pain?

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Patty, Community Member
6/ 6/11 4:48pm

Hi there!

I am so sorry to hear about all your trouble with the spincal cord stimulator (scs). the more people i talk to, the more problems with the scs there are, and the more people regret getting it done in the first place.  If you are having these kind of problems now with just the 3-day trial, imagine if it were permanently implanted.  If i were you, I would definitely run to the doc to get it removed.  So sorry you had to go thru this.  Let me know how you are doinf a few weeks after removing the scs and hopefully these symptoms will pass.  I will keep my fingers crossed for you!

Take care!

-Patty =)

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Eleanor, Community Member
6/12/11 8:20pm

Sorry to hear about you having so many problems with it.  I hope they can help you in some other way.  Please let me know.  If I could take your pain away from you I would everybody.  I think the doctor's just don't seem to have any idea of the pain. I really had a success with SCS at first .  Then I had to have some adjustment made. I needed it move over just a bit to hit a new spot.  The adjuster was new and mest up everything and it hasn't work since then for me. They can't get it back to the place I needed it to be, to help me.  They believe it's because I lost so much weight from the bacteria I got when the SCS was put in. Yes my back after putting it in was painful and sore.

That will ease up.  The doctors with mine can't make up their mind should I have a new one put in or have it taken out.  I will be seeing them the end of the month and see what the udate is on it.  Next will be working on whats wrong with the upper half of my back.  It's been two years having the problem dealing with that pain.  What I don't understand is why everything taking two years before anyone will do something to helpl.

Anyway I gab enought .

Sincerely Wishing you the best.

Eleanor

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alan, Community Member
6/12/11 6:41pm

Yes I have had nothing but trouble since they installed a scs in me. The very first nite the scs was implanted I started having seizures that to this day are still out of control. I fell twice from seizure attacts and tore my left lead loose, instead of fixing it they just turned right side up. I ended up getting blood clots in my lungs, I have had nothing but health issues since the implant. I am in worse health shape now than i was before the implant, it is coming out before it kills me.

 

alan.

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Patty, Community Member
5/ 2/12 3:16am
All I can tell you is what has happened to me, and then you can make your own decisions from there. I had ANS SCS implanted back in fall of 2005 but then had to have it removed due to many factors...the stimulator was malfunctioning, shocking the wrong areas like ribs & chest & not my lower back as needed, doctors couldn't get the stimulator to capture the right areas like they did in the 3 day trial, immediately started having side effects from this implantation surgery such as: constant fever & chills, extreme fatigue, joint pain, joint swelling, swelling in hands, feet, head, arms,legs,etc, joint stiffness, joints all over my body that never bothered me before were now acting up, numbness in extremeties from all the swelling, inability to regulate my own temperature (I'm sweating in cool a.c. Indoors and freezing outside in 80 temps), fibromyalgia, inability to concentrate, can't cool my body down like I used to....I stay overheated for no reason, hot flashes, face feels like its on fire, and of course depression from all of these countless lovely side effects I did not have before the spinal cord stim surgery. I wish I never had it done and I do not recommend it on anyone. It has made my situation exponentially worse, and I regret the day I ever did it. I had the SCS removed in spring 2006 after trying many times to get the darn thing to work properly and to give it a chance, but enough torture was enou for me. Out it came, but all my problems still exist to this day, 6 years later. You would think that would be plenty of time for a body to get that junk out of its system and return to normal, but my primary care doc says the SCS triggered a severe inflammatory response in my body and the symptoms may never go away. So thanks to greedy ANS and their malfunctioning SCS, they have left me in more pain and more disabled with less quality of life than before their surgery. I thought docs took vows to do no harm to patients. Be very careful as ANS new about some of these side effects but hid them from me as well as countless other patients just so they could get a pay day. They lied about the side effects I was having, telling me that I was the only one and no one else had ever had problems like me. Unfortunately, I found out all of this after the fact. So, please, please,please let this be a warning to those who are considering a stimulator implanted in your spinal column....don't do it. I wish someone was there for me giving me this info 7 years ago when I was just 31yrs old. I now just celebrated my 38 bday yet I feel like I am 88 from all the problems &side effects from the SCS, and I am not exaggerating!!! Best wishes to you on your journey to recovery and to a new normal. Take care!! -Patty Reply
coco feliciano, Community Member
11/15/13 10:50pm

oh my god the same thing happend to me but mine got an infection i have to run to the hospital i dint let the hopital till that scs was out of my body . am still in so much pain and the burning on the scars .

 

my name is cocco feliciano

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Patty, Community Member
3/19/13 1:07pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Bambina, Community Member
6/14/11 3:23pm

Yes I have, The whole experience has been horrible for all of my family.Not to mention that I have not been able to work sine jan 2010.

Pain (8-10),rigidity and immobility to my neck is a constant thing and now I have to have another surgery to remove it.

I am with you, it was a bad idea. They painted so nice,but they don't want you to know about all the people like us that suffered big consequences.

Have you had it removed yet?

Reply
barbara banack, Community Member
4/25/12 7:28pm

yes had it removed twice due  the same staff infection so do it you will feel better w/ out the stupid crap

Reply
Patty, Community Member
5/ 2/12 3:20am
Yes, I wish there was a way to get a class action lawsuit against the manufacturers of the spinal stimulators so that we can get. This god awful product off the market and so that those who have been injured by it can get help. I find it completely and utterly disgusting how they got us to be their guinea pigs while their wallets got fat and we got sicker. All I can tell you is what has happened to me, and then you can make your own decisions from there. I had ANS SCS implanted back in fall of 2005 but then had to have it removed due to many factors...the stimulator was malfunctioning, shocking the wrong areas like ribs & chest & not my lower back as needed, doctors couldn't get the stimulator to capture the right areas like they did in the 3 day trial, immediately started having side effects from this implantation surgery such as: constant fever & chills, extreme fatigue, joint pain, joint swelling, swelling in hands, feet, head, arms,legs,etc, joint stiffness, joints all over my body that never bothered me before were now acting up, numbness in extremeties from all the swelling, inability to regulate my own temperature (I'm sweating in cool a.c. Indoors and freezing outside in 80 temps), fibromyalgia, inability to concentrate, can't cool my body down like I used to....I stay overheated for no reason, hot flashes, face feels like its on fire, and of course depression from all of these countless lovely side effects I did not have before the spinal cord stim surgery. I wish I never had it done and I do not recommend it on anyone. It has made my situation exponentially worse, and I regret the day I ever did it. I had the SCS removed in spring 2006 after trying many times to get the darn thing to work properly and to give it a chance, but enough torture was enou for me. Out it came, but all my problems still exist to this day, 6 years later. You would think that would be plenty of time for a body to get that junk out of its system and return to normal, but my primary care doc says the SCS triggered a severe inflammatory response in my body and the symptoms may never go away. So thanks to greedy ANS and their malfunctioning SCS, they have left me in more pain and more disabled with less quality of life than before their surgery. I thought docs took vows to do no harm to patients. Be very careful as ANS new about some of these side effects but hid them from me as well as countless other patients just so they could get a pay day. They lied about the side effects I was having, telling me that I was the only one and no one else had ever had problems like me. Unfortunately, I found out all of this after the fact. So, please, please,please let this be a warning to those who are considering a stimulator implanted in your spinal column....don't do it. I wish someone was there for me giving me this info 7 years ago when I was just 31yrs old. I now just celebrated my 38 bday yet I feel like I am 88 from all the problems &side effects from the SCS, and I am not exaggerating!!! Best wishes to you on your journey to recovery and to a new normal. Take care!! -Patty Reply
Patty, Community Member
3/19/13 1:08pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Chuck Cheeks, Community Member
9/21/11 1:35am

I have had a scs imlanted for 3 months now! This was supposed to help my post surgercial pain, in lower lumber, numbing r/t leg pain and r/t foot pain! The 1st two weeks things felt like I made a great decision. The pain has resumed, my meds. have increased and I am not a happy camper!  I have met with the spinecord rep. several times for adjustments (no relief). I will be meeting with the Doctor who implanted it next week about removing it! This device has also hindered my sexual performence with my wife! The darn device is off while we engage in sex! When I ejaculate I receive a shock of electicity that runs between my butt cheeks! This has happened 3 times now! Is anybody out there that has experienced this?  This side effect will hopefully end soon when removed!    

 

Reply
les, Community Member
12/28/11 10:57pm

I had tiny blister like bump's on my left but cheek just below the battery pack just 4 day's after implant ,this progressed later like a month or so in time me going to the E.R like 3 times and the last time my throat was swelling shut my lip's were swollen it was affecting my breathing and I had a rash that covered my entire body ,I was hospitalized for a week and it was determined that I was allergic to the stainless steel and that wasn't the last of it it took W.C 4 more month's to decide to take it out during this time I developed a severe Lung infection on the Left side above the battery pack Literally hacking up white chunck's could not sleep for day's until the antibiotic took over. Another weird side affect was it felt Like it took 8 step's up my back like 8 stages from bottom to top and than I became extremely weak to where I could not stand up had to go lay down . Than I developed jerk's in my abdomen and right side also in my arm's and they were so hard it would wake me up from a drug induced sleep .Still have those not as bad now since it was taken out but I have severe cramps. The scs was the worst decision for me still having issue's I believe are related to it and it has been out since 5/1/2010

Reply
Patty, Community Member
3/19/13 1:10pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
ginniG, Community Member
3/ 9/12 11:24am

Patty, I had one put in over 3 years ago after trying everything else.After trying different programs i finally got what I needed.I have permanmet damages to my right leg and foot.I had a fusion done in 08 and still much pain so we did the stimulator.It has rally helped me.How do you use it??The best way we did mine was to leave it on 24/7.I turn it down just so I can still feel it and leave it there.I never turn it off  except to charge it.hope this helps.

Reply
barbara banack, Community Member
4/ 2/12 12:53pm

i had first implant in sept 2010 and 2 weeks later had it removed as i received a staff infection from it, then they promised me if we try it again that they would make sure no infection would happen again, so in march 2012 i tried it again, well guess what 2 weeks later removed again as received the staff again, an since i was not checked for the last infection to be cleared it came back again , i am so pissed of for all the pain an suffering i am going thru i want to be compensated fpr all this trouble an still dont know what is gonna happen in the future ? would like to know if there is any lawsuits going on about this as would like to contact a lawyer about this but dont know where to begin any info out there would be greatly appreciated thnaks

Reply
Patty, Community Member
5/ 2/12 3:26am
I tried 5-6 yrs ago, and no lawyers were interested in it unless there was a class action law suit against them. But how does one get a class action started from all these people who have been hurt, damaged, injured, made worse, etc from this SCS surgery? How do we go about this I have no idea? Yes, I wish there was a way to get a class action lawsuit against the manufacturers of the spinal stimulators so that we can get this god awful product off the market and so that those who have been injured by it can get help. I find it completely and utterly disgusting how they got us to be their guinea pigs while their wallets got fat and we got sicker. All I can tell you is what has happened to me, and then you can make your own decisions from there. I had ANS SCS implanted back in fall of 2005 but then had to have it removed due to many factors...the stimulator was malfunctioning, shocking the wrong areas like ribs & chest & not my lower back as needed, doctors couldn't get the stimulator to capture the right areas like they did in the 3 day trial, immediately started having side effects from this implantation surgery such as: constant fever & chills, extreme fatigue, joint pain, joint swelling, swelling in hands, feet, head, arms,legs,etc, joint stiffness, joints all over my body that never bothered me before were now acting up, numbness in extremeties from all the swelling, inability to regulate my own temperature (I'm sweating in cool a.c. Indoors and freezing outside in 80 temps), fibromyalgia, inability to concentrate, can't cool my body down like I used to....I stay overheated for no reason, hot flashes, face feels like its on fire, and of course depression from all of these countless lovely side effects I did not have before the spinal cord stim surgery. I wish I never had it done and I do not recommend it on anyone. It has made my situation exponentially worse, and I regret the day I ever did it. I had the SCS removed in spring 2006 after trying many times to get the darn thing to work properly and to give it a chance, but enough torture was enou for me. Out it came, but all my problems still exist to this day, 6 years later. You would think that would be plenty of time for a body to get that junk out of its system and return to normal, but my primary care doc says the SCS triggered a severe inflammatory response in my body and the symptoms may never go away. So thanks to greedy ANS and their malfunctioning SCS, they have left me in more pain and more disabled with less quality of life than before their surgery. I thought docs took vows to do no harm to patients. Be very careful as ANS new about some of these side effects but hid them from me as well as countless other patients just so they could get a pay day. They lied about the side effects I was having, telling me that I was the only one and no one else had ever had problems like me. Unfortunately, I found out all of this after the fact. So, please, please,please let this be a warning to those who are considering a stimulator implanted in your spinal column....don't do it. I wish someone was there for me giving me this info 7 years ago when I was just 31yrs old. I now just celebrated my 38 bday yet I feel like I am 88 from all the problems &side effects from the SCS, and I am not exaggerating!!! Best wishes to you on your journey to recovery and to a new normal. Take care!! -Patty Reply
barbara banack, Community Member
4/ 2/12 1:02pm

had implated twice an removed twice both were staff infection related anyone else out there w/ this an is there any lawsuits going on as would like to find a lawyer woring  on the cases thanks an beleive me DONT DO IT!!

Reply
Patty, Community Member
5/ 2/12 3:05am
Wow, what a horrid ordeal you went thru. I went thru something terrible too with the spinal stim and I agree with u 100percent, never again! I had ANS SCS implanted back in fall of 2005 but then had to have it removed due to many factors...the stimulator was malfunctioning, shocking the wrong areas like ribs & chest & not my lower back as needed, doctors couldn't get the stimulator to capture the right areas like they did in the 3 day trial, immediately started having side effects from this implantation surgery such as: constant fever & chills, extreme fatigue, joint pain, joint swelling, swelling in hands, feet, head, arms,legs,etc, joint stiffness, joints all over my body that never bothered me before were now acting up, numbness in extremeties from all the swelling, inability to regulate my own temperature (I'm sweating in cool a.c. Indoors and freezing outside in 80 temps), fibromyalgia, inability to concentrate, can't cool my body down like I used to....I stay overheated for no reason, hot flashes, face feels like its on fire, and of course depression from all of these countless lovely side effects I did not have before the spinal cord stim surgery. I wish I never had it done and I do not recommend it on anyone. It has made my situation exponentially worse, and I regret the day I ever did it. I had the SCS removed in spring 2006 after trying many times to get the darn thing to work properly and to give it a chance, but enough torture was enou for me. Out it came, but all my problems still exist to this day, 6 years later. You would think that would be plenty of time for a body to get that junk out of its system and return to normal, but my primary care doc says the SCS triggered a severe inflammatory response in my body and the symptoms may never go away. So thanks to greedy ANS and their malfunctioning SCS, they have left me in more pain and more disabled with less quality of life than before their surgery. I thought docs took vows to do no harm to patients. Be very careful as ANS new about some of these side effects but hid them from me as well as countless other patients just so they could get a pay day. They lied about the side effects I was having, telling me that I was the only one and no one else had ever had problems like me. Unfortunately, I found out all of this after the fact. So, please, please,please let this be a warning to those who are considering a stimulator implanted in your spinal column....don't do it. I wish someone was there for me giving me this info 7 years ago when I was just 31yrs old. I now just celebrated my 38 bday yet I feel like I am 88 from all the problems &side effects from the SCS, and I am not exaggerating!!! Best wishes to you all on your journey to recovery and to a new normal. Reply
Patty, Community Member
5/ 2/12 3:05am
Wow, what a horrid ordeal you went thru. I went thru something terrible too with the spinal stim and I agree with u 100percent, never again! I had ANS SCS implanted back in fall of 2005 but then had to have it removed due to many factors...the stimulator was malfunctioning, shocking the wrong areas like ribs & chest & not my lower back as needed, doctors couldn't get the stimulator to capture the right areas like they did in the 3 day trial, immediately started having side effects from this implantation surgery such as: constant fever & chills, extreme fatigue, joint pain, joint swelling, swelling in hands, feet, head, arms,legs,etc, joint stiffness, joints all over my body that never bothered me before were now acting up, numbness in extremeties from all the swelling, inability to regulate my own temperature (I'm sweating in cool a.c. Indoors and freezing outside in 80 temps), fibromyalgia, inability to concentrate, can't cool my body down like I used to....I stay overheated for no reason, hot flashes, face feels like its on fire, and of course depression from all of these countless lovely side effects I did not have before the spinal cord stim surgery. I wish I never had it done and I do not recommend it on anyone. It has made my situation exponentially worse, and I regret the day I ever did it. I had the SCS removed in spring 2006 after trying many times to get the darn thing to work properly and to give it a chance, but enough torture was enou for me. Out it came, but all my problems still exist to this day, 6 years later. You would think that would be plenty of time for a body to get that junk out of its system and return to normal, but my primary care doc says the SCS triggered a severe inflammatory response in my body and the symptoms may never go away. So thanks to greedy ANS and their malfunctioning SCS, they have left me in more pain and more disabled with less quality of life than before their surgery. I thought docs took vows to do no harm to patients. Be very careful as ANS new about some of these side effects but hid them from me as well as countless other patients just so they could get a pay day. They lied about the side effects I was having, telling me that I was the only one and no one else had ever had problems like me. Unfortunately, I found out all of this after the fact. So, please, please,please let this be a warning to those who are considering a stimulator implanted in your spinal column....don't do it. I wish someone was there for me giving me this info 7 years ago when I was just 31yrs old. I now just celebrated my 38 bday yet I feel like I am 88 from all the problems &side effects from the SCS, and I am not exaggerating!!! Best wishes to you all on your journey to recovery and to a new normal. Reply
Patty, Community Member
3/19/13 1:13pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Peggy, Community Member
4/24/12 9:09pm

My husband had an scs implant 10/05/11 he had nothing but trouble with it.They reprogramed it three time,he broke out with bumps that would itch.around the implant battery was fire red he had a rash on his back.We told the pain management doctor it wasn't working. He still had to use the same amount of pain meds.That was the reason he did the implant was to cut back on the meds.

he. He told the doctor he wanted it out he was very unhappy it was causing more problems .At first they told him to give it more time he tryed it for five months they agreed to remove it .The doctor told him it doesn't work for everyone.

He had it removed 04/06/12 he had to wait six weeks to get it scheduled they couldn't fit him in.it isn't as profitable removing it as putting it in. He is still having the rash & the itch tonight he is miserable.

Tonight he started having discomfort in his neck & head.we went to our family doctor for the rash he told us then his body was rejecting it.The pain management PA told us last week she thinks it will heal from the inside out only time will tell.From our experience It was a very bad idea.He is real sick tonight from the uneasy feeling around his neck area where the leads were at.He had the medtronic scs impant.We will be seeing our family doctor tomorrow to see he can give him some relief.

Reply
Patty, Community Member
5/ 2/12 3:14am
All I can tell you is what has happened to me, and then you can make your own decisions from there. I had ANS SCS implanted back in fall of 2005 but then had to have it removed due to many factors...the stimulator was malfunctioning, shocking the wrong areas like ribs & chest & not my lower back as needed, doctors couldn't get the stimulator to capture the right areas like they did in the 3 day trial, immediately started having side effects from this implantation surgery such as: constant fever & chills, extreme fatigue, joint pain, joint swelling, swelling in hands, feet, head, arms,legs,etc, joint stiffness, joints all over my body that never bothered me before were now acting up, numbness in extremeties from all the swelling, inability to regulate my own temperature (I'm sweating in cool a.c. Indoors and freezing outside in 80 temps), fibromyalgia, inability to concentrate, can't cool my body down like I used to....I stay overheated for no reason, hot flashes, face feels like its on fire, and of course depression from all of these countless lovely side effects I did not have before the spinal cord stim surgery. I wish I never had it done and I do not recommend it on anyone. It has made my situation exponentially worse, and I regret the day I ever did it. I had the SCS removed in spring 2006 after trying many times to get the darn thing to work properly and to give it a chance, but enough torture was enou for me. Out it came, but all my problems still exist to this day, 6 years later. You would think that would be plenty of time for a body to get that junk out of its system and return to normal, but my primary care doc says the SCS triggered a severe inflammatory response in my body and the symptoms may never go away. So thanks to greedy ANS and their malfunctioning SCS, they have left me in more pain and more disabled with less quality of life than before their surgery. I thought docs took vows to do no harm to patients. Be very careful as ANS new about some of these side effects but hid them from me as well as countless other patients just so they could get a pay day. They lied about the side effects I was having, telling me that I was the only one and no one else had ever had problems like me. Unfortunately, I found out all of this after the fact. So, please, please,please let this be a warning to those who are considering a stimulator implanted in your spinal column....don't do it. I wish someone was there for me giving me this info 7 years ago when I was just 31yrs old. I now just celebrated my 38 bday yet I feel like I am 88 from all the problems &side effects from the SCS, and I am not exaggerating!!! Best wishes to you on your journey to recovery and to a new normal. Take care!! -Patty Reply
steve, Community Member
6/29/12 10:58pm

I've had my scs in approx 8 months, but went through about 3 years of testing and research to see if it was right for me. One of my biggest concerns was to get off of some of the major meds i was taking.

Ihave had 3 back surgeries in the last 15 yrs and really had no choice but to try it... the test stim went very well, so they went ahead with the implant. I am so greatfull that i finally have some relief i feel 20 yrs younger in my back and extremeties. its working perfect for me,,, and when i go in for a check up they show me even more programs that i can try , and i think thats what all the techs need to do with everyone, is to give everyone all the info they can on it, i've had very good luck with it, and i hope everyone that has one having problems can be worked out, because there is absolutly nothing worse than chronic pain.. alot of people dont know what chronic pain is until... God forbid they have it..good luck to everyone

Reply
Sabine, Community Member
4/25/12 2:57pm

I had my stimulator implanted on April 3, 2012.  It has taken a good 75% of the pain and I can walk about 2.3 miles right now.  What I would like to know is - did anyone have double vision, memory loss, light headedness, hear a noise in your head or ears, shortness of breath, hot flashes?  This is what is happening to me.  I can't drive, can only work on the computer for a short while at a time.  If there is anyone who has had this please let me know how long it lasted.

Thanks,

Sabine

Reply
Patty, Community Member
5/ 2/12 3:12am
All I can tell you is what has happened to me, and then you can make your own decisions from there. I had ANS SCS implanted back in fall of 2005 but then had to have it removed due to many factors...the stimulator was malfunctioning, shocking the wrong areas like ribs & chest & not my lower back as needed, doctors couldn't get the stimulator to capture the right areas like they did in the 3 day trial, immediately started having side effects from this implantation surgery such as: constant fever & chills, extreme fatigue, joint pain, joint swelling, swelling in hands, feet, head, arms,legs,etc, joint stiffness, joints all over my body that never bothered me before were now acting up, numbness in extremeties from all the swelling, inability to regulate my own temperature (I'm sweating in cool a.c. Indoors and freezing outside in 80 temps), fibromyalgia, inability to concentrate, can't cool my body down like I used to....I stay overheated for no reason, hot flashes, face feels like its on fire, and of course depression from all of these countless lovely side effects I did not have before the spinal cord stim surgery. I wish I never had it done and I do not recommend it on anyone. It has made my situation exponentially worse, and I regret the day I ever did it. I had the SCS removed in spring 2006 after trying many times to get the darn thing to work properly and to give it a chance, but enough torture was enou for me. Out it came, but all my problems still exist to this day, 6 years later. You would think that would be plenty of time for a body to get that junk out of its system and return to normal, but my primary care doc says the SCS triggered a severe inflammatory response in my body and the symptoms may never go away. So thanks to greedy ANS and their malfunctioning SCS, they have left me in more pain and more disabled with less quality of life than before their surgery. I thought docs took vows to do no harm to patients. Be very careful as ANS new about some of these side effects but hid them from me as well as countless other patients just so they could get a pay day. They lied about the side effects I was having, telling me that I was the only one and no one else had ever had problems like me. Unfortunately, I found out all of this after the fact. So, please, please,please let this be a warning to those who are considering a stimulator implanted in your spinal column....don't do it. I wish someone was there for me giving me this info 7 years ago when I was just 31yrs old. I now just celebrated my 38 bday yet I feel like I am 88 from all the problems &side effects from the SCS, and I am not exaggerating!!! Best wishes to you on your journey to recovery and to a new normal. Take care!! -Patty Reply
StevieD, Community Member
9/23/12 7:17pm

Sabine,

My wife had a stimulator inplant in March 2012. It has relieved much of her pain but for the last 4 weeks she has had increased total body weakness and for the past 2 weeks has had spells of passing out, losing consciousness for 3 to 5 minutes at a time. She was admitted to the hospital and they ran all kinds of tests. We are both starting to think it may be the implant.

Reply
Patty, Community Member
3/19/13 1:11pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Marry, Community Member
12/29/13 3:59pm

Hi I'm from Netherlands and did like other nasty side effects of the Nevro.
It is quite a story that soon I want to go write it down on this site.
But through the crowded days it comes this week.
I and several people have so suffered from the H frequency dizzy spells, headaches neck pain gusset pain. Got it after half a year.
By the HF is me hearing there are many researches damaged bark. Me and the relevant hospital nevro are not cooperating.
I say not do now!!! or think carefully collect and lots of info.
Very soon follows me story Cry

Reply
Linda, Community Member
4/27/12 8:56pm

I had a spinal cord stimulator surgically implanted in my back a year and a half ago. I had good results at first but then was in a car accident a few months after getting it.  I am tired all the time, which wasn't happening before but the worse problem is severe weakness in my legs.  I have no strength in my legs and have to use my arms to pull myself up when getting up.  I did not connect the two till recently as the situation is getting worse.  I am trying to get the doctor to remove it, but it seems to be harder than having the insurance approve the surgery.  Not sure if the insurance covers taking it out either.  
I was in severe pain prior and had 2 back surgeries but did not have the weakness in my legs before.  I would not have had it implanted if I knew this could happen.

I asked prior to surgery, if I don't like it what do I do and the doctor said they would remove it, now he doesn't want to do it.  Be very sure before having any surgery, it isn't always what the doctor tells you it will be. 

Reply
Patty, Community Member
5/ 2/12 3:08am
Sorry to hear of your issues with the SCS. If I were you, I would not wait to get it out. Get the first available appt to get the SCS taken out. I had ANS SCS implanted back in fall of 2005 but then had to have it removed due to many factors...the stimulator was malfunctioning, shocking the wrong areas like ribs & chest & not my lower back as needed, doctors couldn't get the stimulator to capture the right areas like they did in the 3 day trial, immediately started having side effects from this implantation surgery such as: constant fever & chills, extreme fatigue, joint pain, joint swelling, swelling in hands, feet, head, arms,legs,etc, joint stiffness, joints all over my body that never bothered me before were now acting up, numbness in extremeties from all the swelling, inability to regulate my own temperature (I'm sweating in cool a.c. Indoors and freezing outside in 80 temps), fibromyalgia, inability to concentrate, can't cool my body down like I used to....I stay overheated for no reason, hot flashes, face feels like its on fire, and of course depression from all of these countless lovely side effects I did not have before the spinal cord stim surgery. I wish I never had it done and I do not recommend it on anyone. It has made my situation exponentially worse, and I regret the day I ever did it. I had the SCS removed in spring 2006 after trying many times to get the darn thing to work properly and to give it a chance, but enough torture was enou for me. Out it came, but all my problems still exist to this day, 6 years later. You would think that would be plenty of time for a body to get that junk out of its system and return to normal, but my primary care doc says the SCS triggered a severe inflammatory response in my body and the symptoms may never go away. So thanks to greedy ANS and their malfunctioning SCS, they have left me in more pain and more disabled with less quality of life than before their surgery. I thought docs took vows to do no harm to patients. Be very careful as ANS new about some of these side effects but hid them from me as well as countless other patients just so they could get a pay day. They lied about the side effects I was having, telling me that I was the only one and no one else had ever had problems like me. Unfortunately, I found out all of this after the fact. So, please, please,please let this be a warning to those who are considering a stimulator implanted in your spinal column....don't do it. I wish someone was there for me giving me this info 7 years ago when I was just 31yrs old. I now just celebrated my 38 bday yet I feel like I am 88 from all the problems &side effects from the SCS, and I am not exaggerating!!! Best wishes to you on your journey to recovery and to a new normal. Reply
Linda, Community Member
5/ 2/12 10:45am

Thank you so much for sharing your story with me.  I to wish I had never heard of the SCS.  I know it works for some and I am happy for them but if I had known more abut the device I would not have had the surgery.  My main complaint is my legs are very weak.  It is hard to get out of a chair or to clean around the bottom of anything because I have to have a way to pull myself back up with my arms.  I have had pain in my hips that I've never had before and I do have the swelling.  I feel tired all the time, which has contributed to weight gain.  

I see my doctor on May 8th and I am going to insist it be removed.  I have talked to him about it before but he just wanted me to come in for adjustments instead.  I have had the weakness for months now but did not attribute it to the SCS till last week. That is when I got on this site to see if anyone else was having the same symptoms.  It is so good to talk to others that are having the same problems, you don't feel so alone.  Also, this has given me the confidence to insist he take out the SCS since I have other stories to back me up and he can't tell me no one else has these symptoms.

I hope others will think twice before having this stimulas implanted, thinking back on it I should have realized the vibration could relax the muscles and make a weekness occur.

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Patty, Community Member
5/ 3/12 4:13am
Hi & thank for ur posts well. It does feel good to be able to chat with others who share these same issues with the SCS. it is a shame that people who already are at their wits end with their pains now have to be subjected to all this unnecessary additional suffering at the hands of doctors and medical manufacturing companies who are more interested in money and trials then actual patients feelings and results. I wish you luck in the removal of ur SCS. Let me know how it goes,as I do hope you feel better afterwards. Take care! -Patty Reply
Peggy, Community Member
5/ 9/12 9:17am

Did anyone have pain or pressure in the neck area where the leads were put or around the battery implant after it was removed.my husband is still having issues.

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roxie, Community Member
11/ 9/12 1:26am

amen.

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Patty, Community Member
3/19/13 1:31pm
******Attention******Very Important Info for SCS Sufferers!!!***** First, I am a SCS patient, like you, who has many various horrid side effects from the SCS. I am NOT a lawyer, rep, nor making any money by requesting SCS patients like yourself to report your side effects to the FDA. Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is listed below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years, (just read my posts on this message board) http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Patty, Community Member
3/19/13 1:12pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Patty, Community Member
3/19/13 1:14pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Pauline, Community Member
11/10/13 5:25am

Linda

Recently had SCS implanted--so far it is a life-saver.  I am lucky to have an amazing Dr. who informed me of all the possible problems and I know he would have NO problem removing it if something went wrong.  More to the point, one of the side effects he warned me about and that I have experienced, was weakness in my legs.  We find I can improve the problem by turning the stimulator way down when I have to be on my feet.  He told me it would work just as well turned down to the point were I hardly notice it, and he was correct.  Since it works by interferring with the pain signals, it doesn't have to "overwhelm" them to be efective.  Hope this helps.  It was my last resort.  And if it all goes bad tomorrow, at least I will have had a short reprieve.  Good luck.

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wldfilly4ever, Community Member
8/18/12 2:30am

     I had mine implanted about 10 yrs ago. I had NOTHING, BUT PROBLEMS WITH IT!!!! It got to the point to where it was shocking me like I had stuck my finger into a power outlet, sparks would fly from shopping carts every time I tried to push one, etc. After 5 revisions, they finally took it out. Since then I've had nothing, but trouble with my back and hip where the battery was implanted. My dr. called it "Post op (something)????" Not only do I STILL HAVE AGONIZING PAIN, but I have developed arthritis in my back and hip and a "BIG DIP" along my spine. I thought, I would see if there were any lawsuits pending for this. I developed RSD (reflex sympathetic dystrophy) several months prior to the implant. That was the main reason I had it done. Then about a yr or so later was diagnosed with fibromyalgia and rheumatoid arthritis. The RSD started in my right foot and leg, below my knee. Now, the RSD has progressed into both of my feet and legs. It has deformed my left foot, the swelling stays most of the time and the pain is no less then an 8 on the pain scale. And thats with the pain meds that I'm on right now. When the weather changes or if I'm running low on pain meds, watch out!!! The pain increases to a 10, crying cause i'm in so much pain from my waist on down to toes !!!! THANKS TO THE DAMN IMPLANT:(( Can't stand to sit up, stand, or lay down. And to top it all off, I'm still trying to get my disability???? After all of this time... I WILL NEVER REFER ANYONE TO GET THIS!!!

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Patty, Community Member
8/18/12 8:12am
Good golly....10 years you had this SCS in you and look at all theproblems it has caused you. I am soooooooo sorry. I can relate to much of what you are going thru and I don't know what else to tell you then just to take it one day, one minute at a time. Like you, I am worse off now after the SCS implant than b4, and this is even after 6 yrs of having it removed from my body. I wish I had answers for you or something to say that would help, but I'm just as lost as you are, drowning in a sea of pain, not knowing how to get out of it or what else to do to try to get better ( as I have exhausted everything ever recommended to me.). Just know that you are not alone in this. Hang in there please and take care. Reply
wldfilly4ever, Community Member
8/19/12 12:33am

     Thank you for your response Patty. I have been looking on line searching to see if there maybe a law suit either with "Medtronic" or with all SCS? Hopefully, I will get a response within a couple of days. It doesn't hurt to search to see if there is or not. That is the least I can do. Talk to u soon

 

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Patty, Community Member
8/19/12 7:39pm
I haven't seen Nything but that doesn't mean there isn't any out there. If talked to several lawyers and they all agree that they need a class action lawsuit with many plaintiffs like ourselves....maybe in 5 or 10 more years when there are more people have been injured from this device, but right now, I don't think there are enough of us....sad huh. One is one too many. Plus, mine is with ANS, urs is with Medtronics, and there are other companies out there too, so just that is an issue, let alone allege different states we live in, etc...but hopefully one day, we will stand on top. Btw, which state do umlive in ? Just curious...I'm in fl. In the mean time, keep In touch, hang In there, and feel good. Patty Reply
Patty, Community Member
8/19/12 7:41pm
Sorry for all the typos....darn auto correct....it auto corrects into totally diff words. Oh well. :) Reply
wldfilly4ever, Community Member
8/19/12 9:31pm

     Thats ok, I appreciate you responding to my post:) Maybe we can keep in touch, check on each other every now and then? I'm sure somehow they will come up with some way they can have a suit. Attorneys are good at the lol. Take care and hope to hear from you soon, plus its been nice talking to you as well!

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Patty, Community Member
8/20/12 4:15pm
Yes, hang in there. Feel good. :) Reply
Patty, Community Member
3/19/13 1:15pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
scoshep, Community Member
9/ 3/12 9:47am

I had mine put in over a year ago and it is do it's job perfectly. After twenty years of pain meds, I do tak e any. To address those symptoms you listed. I was diagnosed wiwth FM 6 months before I had the surgery. All of those are symptoms of FM, except for the arthritis. You should look into the symptoms of FM.

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Patty, Community Member
9/ 6/12 10:43pm
Hi Thanx so much for responding to my post. Yes, I have been diagnosed with fibromyalgia...the surgery that implanted the spinal cord stimulator triggered it. I assume that in your post when you wrote FM, you are referring to fibromyalgia. Im glad to hear that ur SCS has been working great and that you r off ur pain meds. That's great! Thanx again. Patty Reply
HShires, Community Member
9/ 7/12 2:18am

I got mine in March 2012. Immediately I had trouble breathing. The thing wasn't even turned on. I felt like I was having a heart attack. My GPchecked my heart and gall bladder. All was well. My Medtronic guy said it was from swelling and would resolve. We opted to wait a few more weeks before turning it on. The chest pain did resolve but unfortunately my stim can't be progammed to give me coverage in my lower back. I have what feels like a psychotic batting cage ball shooter in my ribcage and my legs and feet feel like a bunch of Jiffy Pop bags with pins and needles. It is unbearable! The only way I can get it to calm down is to turn it really low like 1-2. The only way I get ANY lower back coverage is to lay on my belly (like on the operating table) or to lean way back like I'm doing the limbo. I turned it off in late June when my Medtronic guy threw up his hands and gave up on programming it. I haven't charged it or turned it back on. I am waiting to talk to a new surgeon that I have been referred to by the surgeon that placed my stim. They are considering doing a new trial at a different level. Mine is placed at T6-8 supposedly. My L5 was obliterated when I was 13 and fell off a roof. My L4 was mostly crushed. I had a successful fusion in 10/10 but was hit by a VW bus 6 months later. I have been in non-stop and ever escalating pain since the accident. The docs are considering placing a pain pump but I am allergic to Morphine and Dilaudid.

~Heidi

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Patty, Community Member
11/ 9/12 2:10pm
Wow....sorry to hear about all your issues and the pain. I understand the frustration that you are going thru, especially with this SCS implant ( spinal cord stimulator). Mine didn't work either, made me worse even, so I had it taken out 9 months after placing it in. I tried for a good while with the docs and SCS reps to get it working, but to no avail. Are there other alternatives to morphine or dilaudin since u r allergic to these mess? A friend of mine has a pain pump and it took almost a year for them to get it tuned in to work properly for him, so the pain pump is tricky too I understand. I can't speak for the pump, but the SCS implant was the worst thing I ever did to try to relieve my chronic back pain. Let me know what you decide to do. Hang in there. The only thing that has helped me over the last ten years with some pain relief is warm aquatic/ pool therapy. It doesn't take the pain away, but does help at times to lessen it for awhile....plus it's non evasive and easy on your body. If u have access to a indoor heated pool, you can do this year round too. Most hospitals have them if you look into it. Good luck and keep in touch. -Patty Reply
Patty, Community Member
3/19/13 1:16pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Patty, Community Member
3/19/13 1:16pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
HShires, Community Member
9/ 7/12 2:40am

Oh...and the site where the battery is, my right buttock, is still (6 months later) sore and tender. The slightest bump feels like a sharp stick being poked into a nasty bruise. I tend to sit on my left side and that is where most of my back pain is centered, so either way I hurt. Cry

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barbara banack, Community Member
9/ 9/12 7:01pm

anyone find out if there is a lawsuit going on about this very bad thing they are implanting , that is so harmful toso many patients, as  i have had tis implanted twice an removed twice due to staff infection each time

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Patty, Community Member
9/10/12 1:20pm
I don't know of any, but that doesn't mean there isn't any. I wish there is a class action lawsuit as it is not right what they are doing to us chronic pain patients who are desperate to feel better. If you hear anything, please post and let us know.... Will do the same. Take care. Patty Reply
TamaraPrez, Community Member
9/26/12 7:54pm

I see that your post was years ago, but it just dawned on me that the health issues I have been dealing with could be caused by the SCS that I got in 2008. I have been diagnosed with arthritis in ribs, CFS and fibromyalgia. I am currently dealing with a situation wherein almost everything I eat is causing me to feel ill.  I get blisters in my throat and it is sore almost all of the time. I am always tired, have a headache 80-90% of the time and feel like a train has hit me most of the time. I have moved so I no longer see the doctor who installed the unit and my family doctor has been pretty dismissive of my symptoms. Also, due to feeling weak and ill all of the time, I am getting more and more depressed. Have you found anything addtional out since your posting?

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Patty, Community Member
9/28/12 12:45am
Hi Unfortunately, I haven't found any answers to my problems relating to the spinal cord stimulator. It's been 7 yrs and I feel worse now than I did then. The fatigue is horrid....absolutely the worst. IRS like being a prisoner in your own body....but you can't escape no matter how hard you try. The fibro, the arthritis, cfs, chronic fevers and chills, etc...all caused by the surgery and/or the stimulator itself. Even though I had it removed over 6 yrs ago, my symptoms have only gotten worse with time, and docs don't know why or what to do. Knowing that there's others like me, makes me feellike. I'm not crazy. But at the same time, I'm very sorry anybody else has to go thru this. Good luck with yourself....keep me updated with your health and if you hear of any treatments. Thanx! Patty Reply
Patty, Community Member
3/19/13 1:18pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
roxie, Community Member
11/ 9/12 1:01am

Patty yes all of the above, and more, im having mine out on the 13, i also have pain in other areas, like my thorasic muscles go into rock hard spams when i lie down more then three yours, which i did not have before, now testing me for auto immion, two disc turned black right a lead  area,  and now hips hurt, i got this in for croninc low back pain, now im a mess, i hope some will go away,when its out, ill let your know. Roxies

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Linda, Community Member
11/ 9/12 10:05am

How do you get the doctor to remove it?  I have begged and pleaded with my doctor to take it out and he refuses, without giving me a reason.  I really do like the doctor, have been getting epidurals from him for years and he is very good.  But, I am very upset about him not removing it.  I had a car accident about 2 months after having it implanted.  I was never told that a car accident, falling, etc. could effect the leads, althought in hindsignt I should have realized that.  I continued to use it with no results so I've finally turned it off and try to not think about it.  My back is worse, the pain has moved to the right side, previous all pain was on the left.  The stimulator was implanted on the right, I don't know if that has anything to do with it or not.  I can't have an MRI, although I am now getting tingling and numbness in my feet.  I am upset with myself for having it implanted, you should think really hard about having a foreign object inserted in your spine.  I have pain in the area of the batter and worry there is leakage or something going on.

The doctor told me if I didn't like it, he would removed it, now he says no.  I am almost afraid to push the issue for fear there is something he is not telling me and it will get worse.

My advise, don't do it in the first place.

 

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Patty, Community Member
11/ 9/12 2:01pm
Sorry to hear about your added pain and anguish. If I were you I would go to a different doctor to get it removed. You do not have to suffer with an implant in your body if you do to want to.....after all, it is your body, your choice....not your doctor's. I would even say that it is ethically wrong and perhaps even illegal for your doctor to refuse to remove it from your body. Just go see some one else to remove that good for nothing implant. Hang in there and keep us updated. If you live in the south Florida area, I can recommend a doctor for you. -Patty Reply
Patty, Community Member
11/ 9/12 2:34pm
Good luck Roxie... You r making the right decision considering ur situation. Hope you feel better soon. Keep me posted after you've recovered from ur removal on Tuesday. Will be thinking of you then. Take care -patty Reply
barbara banack, Community Member
11/ 9/12 6:30pm

anyone find a lawyer yet to sue these jerks for lying to us just so they make more money off us, has to stop.

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Patty, Community Member
3/19/13 1:17pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
barbara banack, Community Member
11/ 9/12 6:30pm

anyone find a lawyer yet to sue these jerks for lying to us just so they make more money off us, has to stop.

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Patty, Community Member
11/19/12 2:54am
Haven't found one yet....I looked into getting a lawyer and fight these scs companies back I 2006/2007 and lawyers said that there needs to be a class action lawsuit for thus to work. I don't know how to go about that, so if there are any lawyers out there willing to point us In the right direction, that would be greatly appreciated. I don't know about you, but I want to make sure these darn companies stop hurting chronic pain patients even further. Its immoral, disgusting, and it needs to stop now. Help! If you are interested in joining some kind of legal process to fight against these SCS implant companies, just email a post here. We will see how many people respond and go from there. Be sure to include a general city and state to where you are from so we can all get an idea of how wide spread this prob is and so we can organize the complaints. Thanks Patty Stuart, FL Reply
Dawn G, Community Member
12/16/12 4:30pm
I too have debilitating symptoms caused from an SCS. It was removed after 45 days. The symptoms never left and my docs have never heard of anyone having these problems. Chest wall pain, severe back, side and chest muscle spasms, to the point of shaking. Shaking chills and then hot like a furnace. No one can help. I am unable to work. This is in addition to the pain I had prior to the SCS. I just found this board today. I am willing to help with a class action lawsuit. Patty, I hope you find this. Reply
Patty, Community Member
12/16/12 8:45pm
Hi Dawn G Sorry to hear about ur issues with this darn SCS....no one deserves to go thru more pain and suffering when trying to alleviate pain and suffering. If I hear anything, will let u know, but we All have to keep our ears pealed wrt a class action lawsuit. -patty Reply
Fred, Community Member
11/28/12 6:27pm

I got a dorsal column stimulator, the doctor said, there is virtually no chance of anything going wrong, he continued by saying, the chances are so close to zero that you might as well call it zero. Well, he could not take the dorsal column stimulator out of my neck and caused extreme and continual nonstop which I have had since. The person I shared a room with, walked in for the dorsal column stimulator and that paralyzed him, also giving him extreme pain forever. It is a highly risky procedure that no one should get. Using an external muscle stimulator works much better with no risk. The problem is, they don't get the big bucks for the procedure.

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Suz, Community Member
12/ 2/12 3:17am

Patty yes. I am having all kinds of problems. Since the scs implant I have developed asthma, fibromyalgia, shingles, and brain swelling. I also have chills and night sweats. I have been sick to my stomach and can not get the device to adjust correctly. It is stimulating my armpits and stomach. They checked the placement and deny the implant has anything to do with it - but it is just too....

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Patty, Community Member
3/19/13 1:33pm
******Attention******Very Important Info for SCS Sufferers!!!***** First, I am a SCS patient, like you, who has many various horrid side effects from the SCS. I am NOT a lawyer, rep, nor making any money by requesting SCS patients like yourself to report your side effects to the FDA. Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is listed below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years, (just read my posts on this message board) http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Sinamin, Community Member
12/16/12 3:42pm

I have had my stimulator since 2008.   Due to a cervical rib removal, near my collar bone.  in order for the stimulator to take affect they had to attach the motor to my brain stem.  Soon after that I started having breathing issues.  But my pain is very much under control with the stimulator, I luv it.  However back to my breathing issues.  The stimulator is reeking havoc on my vocal cord nerves.  Although I can't get a doctor to make that call yet.  I know that's it.  We have ruled out everything else.  I never had asthma in my live and the asthma meds don't help me.  Now my voice is completly gone and I still can't breathe,  So I recently had to have a Tracheotomy in order to allow me to breathe, the doctors can't see anything wrong with my vocal cords, they are all baffled.  But I know it’s the stimulator because what elese could it be.  It is running straight up pass my shoulder and spine to my brain stem I know it is touching my vocal cord nerve.... I just know it.  But we all know how it takes Doc's forever to make a diagnosis these days.  Shame on them.

I have had my stimulator since 2008.   Due to a cervical rib removal, near my collar bone.  in order for the stimulator to take affect they had to attach the motor to my brain stem.  Soon after that I started having breathing issues.  But my pain is very much under control with the stimulator, I luv it.  However back to my breathing issues.  The stimulator is reeking havoc on my vocal cord nerves.  Although I can't get a doctor to make that call yet.  I know that's it.  We have ruled out everything else.  I never had asthma in my live and the asthma meds don't help me.  Now my voice is completly gone and I still can't breathe,  So I recently had to have a Tracheotomy in order to allow me to breathe, the doctors can't see anything wrong with my vocal cords, they are all baffled.  But I know it’s the stimulator because what elese could it be.  It is running straight up pass my shoulder and spine to my brain stem I know it is touching my vocal cord nerve.... I just know it.  But we all know how it takes Doc's forever to make a diagnosis these days.  Shame on them.

 

I have had my stimulator since 2008.   Due to a cervical rib removal, near my collar bone.  in order for the stimulator to take affect they had to attach the motor to my brain stem.  Soon after that I started having breathing issues.  But my pain is very much under control with the stimulator, I luv it.  However back to my breathing issues.  The stimulator is reeking havoc on my vocal cord nerves.  Although I can't get a doctor to make that call yet.  I know that's it.  We have ruled out everything else.  I never had asthma in my live and the asthma meds don't help me.  Now my voice is completly gone and I still can't breathe,  Because of that.. I'v recently had to have a Tracheotomy (Hole in my neck) in order to allow me to breathe, the doctors can't see anything wrong with my vocal cords, they are all baffled.  But I know it’s the stimulator because what elese could it be.  It is running straight up pass my shoulder up through the back of my neck... and spine to my brain stem.   I know it is touching my vocal cord nerve.... I just know it.  But we all know how it takes Doc's forever to make a diagnosis these days.  Shame on them.

Reply
Patty, Community Member
12/16/12 8:50pm
Unbelievable. I'm so sorry to hear this. I don't know what to say except shame on them is right!!!! Reply
Sinamin, Community Member
12/18/12 12:30pm

Thank u Patty... ╮(╯_╰)╭

Reply
Patty, Community Member
3/19/13 1:20pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Zun, Community Member
1/ 1/13 11:52am

i am have the same issue - what happened with yours????

 

Reply
Patty, Community Member
1/ 1/13 1:28pm
Hi After 9-10months of trying to fix the spinal cord stimulator (SCS), I had it removed as it was malfunctioning, not helping at all with my pain, and in fact making me sicker....the SCS caused arthritis, fibromyalgia, chronic fatigue, heat intolerance, constant chills, etc....none of which I had before the SCS. I was hoping that once the SCS was removed, that all these symptoms would go away, but that is not the case. It's been 5 yrs since I had it removed and I am worse off now than before I had it put in. I am sorry to hear that you are having similar issues. Please know that you are not alone, that it is not in your head, and that it is a problem with the actual SCS, the docs who implant them and the manufacturer.....it is not you nor your body. Hang in there, I don't know what else to say as I don't have any solutions to this problem. Happy new year and best wishes with your health in 2013. -Patty Reply
Dawn G, Community Member
1/ 1/13 5:50pm
I can see that many people here are suffering these bizarre, debilitating symptoms from an SCS. All my symptoms started immediately the day after I came home from the hospital when it was implanted. That night I vomited for 14 hrs, causing one of the wires to migrate. Using only the good wire, I turned it on for only a few minutes at a time. Sharp chest wall pain, sever muscle spasms, in the back, sides, abdomen. I had it removed after 45 days, and all the symptoms are still there. I have electrical sensations going across my skin. Once the spasms get going, they turn into shaking chills. Then I feel as if I am a furnace, my body can not tolerate temperature changes. My feet are stinging as if they are being smacked, cold and same with the hands. The symptom list goes on and on. I did not have one of these issues before the implant. Of course all this is now in addition to the neuropathic pain that the stimulator was suppose to help with. Why was the trial fabulous and the permanent one a disaster???? Not a single doctor has an explanation. Not the neuro surgeon or the anesthesiologist that is my pain doc and the one that implanted it. They both have not seen this, they say. BUT..... There are far too many people that the SCS has helped. It has been a life saver for many. I don't think there is any way a class action law suit would prevail. Some times, as with any surgery, bad things happen and it can not be predicted. That is why we sign the surgical permission form, that we were told there could be serious consequences. Only if the doctor was negligent in the implanting would you be able to sue. And I highly don't that is the case with any one of us. We are the unfortunate, unlucky ones. Good luck to all of us this year. Reply
Patty, Community Member
1/10/13 12:44pm
Hi! I appreciate ur post and ur comments, Dawn G, but I feel that u r not understanding my particular situation. I understand there are risks involved with any procedure, and that's why we sign our life away before we even have anything done. I clearly understand that as I am not some ill informed, naive, uneducated patient who doesn't understand medical negligence. But in my case, there was indeed negligence, so please do not assume that there was no foul play involved or that, as you stated, we are simply "the unfortunate, unlucky ones" because my situation has nothing to do with being unlucky!! But my issue, my problem, my dilemma comes from when doctors lie, nurses lie, SCS representatives lie, when they all lie and hide the truth about the real consequences and side effects of this darn SCS implant just to get paid....that's why I am mad, hurt, and looking for justice. There are the side effects that they tell you about and that are written out in ink for patients to see, but there are also worse side effects that they DO know about, that are widespread, but are purposely kept hidden from potential patients and they refuse to tell you or even give u access to this information...they hide these more severe life altering side effects because they know that if patients knew the truth about their SCS implant, less people would even attempt the implant, and they would make less money. That's what happened to me....I was lied to and misled, where facts were purposely hidden and kept secret, and no matter what anyone says, THAT IS NOT RIGHT and ILLEGAL!!! Many of the true serious side effects, the very ones I am suffering from still to this day, 7 yrs later, and have made my overall health considerably worse then before the implant, these are the side effects that the doctors, nurses, and SCS reps kept secret, refused to admit their existence, and lied to me.....and all for what.....so they can get paid!! I even know of a reputable doctor and a nurse, both with excellent credentials and decades of experience, who found out about this cover scs implant up and wanted to tell their own patients about all the true side effects....but they were strongly urged not to do so....in fact, they were FIRED because they wanted to do the right thing and protect their patients from this potentially harmful SCS implant. They were fired because they were trying to do the ethical, moral, right thing by telling the WHOLE TRUTH about this implant to their patients so as to give them all the information available and to protect them. How is that legal? how is that right? With regards to my situation, all of the physical and mental pain that these unethical docs and scs reps directly caused me is their fortune. Again, How is that legal? How is that right? That is because its not, and that's why I am looking for anyone else in my similar situation. The more of us who band together to stop this, prevent it from happening to others, and also punish those who are liable and responsible, the better. All I want is to be healthy again and relatively pain free, but since they took that away from me from me thru their lies and not telling me the truth from the beginning, all I want now is justice and to keep this nightmare from happening to others. Reply
Dawn G, Community Member
1/10/13 8:02pm
Patty........I am sorry my post angered you. I did not post to you directly, just continuing on the thread. Hurting you certainly was not my intention.......I was talking mainly of the people, like myself who have the horrible misfortune of having the SCS implanted, which in turn has given us a life of hell.......and medical negligence is NOT part of our cases, as yours was.......................for many of us, there was no mistake, the doctors have no answers for us, and nothing went wrong............I have been told by 3MD's, one PA and two company techs, that they have never seen such symptoms related to the SCS...............as fellow sufferers, we know better. ......Without any documentation of an error occurring, proving legally that medical negligence was involved would be impossible.....and we can not prove that any of the doctors implanting the devices know of these horrible problems that do occur............we can not prove that they lie......I am on your side Patty....I agree with everything you have written..........my post was just from another perspective....my doctors , I am sure just want me to go away........... Reply
keeks*, Community Member
8/ 1/13 4:03am

Wow I am so glad to find this website..after nearly 10 years of chronic back pain as well as other debilitating issues I have I was advised by a major facility in their pain management department to get this implant..when I asked abkut any complications especially with my other disabilities I was told just  the typicall warnings as in any other surgery. ..the head of department and on an important medical board was there lying directly to me..what do they care they dont have to live my life or with even more life threatening dangers they advice me....after reading these posts I am furious. ..it s I unded too good and indeed it is to good to be true.  I know NEVER to go back to this pain management...I just hope others read these sad and horrific stories that didn't need to happen...living with chronic pain is hard enough without someone shortening your lifespan and adding more pain and c implications. ..I just wonder if the dr. And nurse that was let go was my old dr and nurse from today...because he never mentioned or advised this devise to me but knew how desperate I was for relief....

Reply
Patty, Community Member
8/ 2/13 11:15am
Leeks, you just made my day, my week, etc....you are the reason I started this post 4-5 yrs ago. I wanted to simply educate and or warn people of the possible side effects of this implant. Side effects that my current pain management doctors and nurses swear that there are no major side effects even though they have me as a patient and know what I have gone through with this horrid device. Yes, they will lie, bend the truth, just to get you to try the implant as its simply lines their pockets....regardless of what it does to us and our bodies long term. I am so glad you found this website. Please share it with others who may be looking to get the spine stimulator so you can help educate and warn them of all the possible side effects too. Thanks so much for reading and responding. -patty Reply
Patty, Community Member
3/19/13 1:35pm
******Attention******Very Important Info for SCS Sufferers!!!***** First, I am a SCS patient, like you, who has many various horrid side effects from the SCS. I am NOT a lawyer, rep, nor making any money by requesting SCS patients like yourself to report your side effects to the FDA. Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is listed below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years, (just read my posts on this message board) http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Dennis, Community Member
1/16/13 9:31am

My partner had her implant in March of 2011. She has had what I call episodes since the implant, she never had these before. She get's totally incoherent, says words that make no sense. She has taken off her clothes and crawled around the house once sweating profusely. She can't lay down for more then a minute constantly getting up and down. She has had approx. 10 of these episodes. I'm fortunate to have been home when these come on. My big fear is she will have one of these when I'm at work. If anybody has had similar symptons please e-mail me at mcpalwick@sbcglobal.net.

Dennis

Reply
Dawn G, Community Member
1/19/13 11:37am
Dennis. Have you taken your partner to the surgeon that implanted the SCS? She could be in serious trouble... Reply
Dennis, Community Member
1/19/13 12:20pm

Yes I have, as a matter of fact we were there thurs. Of course they have never heard of her symptons. she is supposed to see a neurologist soon. I've taken her to the ER before. Nothing. I think this could be very serious as well, but they can't find anything. It gets very frustrating.

Reply
Dawn G, Community Member
1/19/13 2:40pm
Dennis.........it will be extremely difficult to find any neuro surgeon, neurologist or anesthesiologist to say the symptoms are directly related to the SCS........I have done plenty of research and have found the studies that show bizarre side effects, but no one knows why......one reason could be the Sumpathetic Nervous System. It originates in the spinal column from T-1 through the lumbar discs....The nerves go to all organs and systems in the body....it is believed that the SCS somehow interferes with SNS, and throws it out of whack......most have the temperature issues, stabbing chest pain, muscle spasms, urinary problems, bugs crawling on the skin, etc. Also any neuropathy pain is worsened in some people .........go to Whikepedia and you can read all that the SNS regulates in the body....I would expect her Neurologist to recommend that it be removed it at once......and I would not turn it on again..... Reply
Dawn G, Community Member
1/19/13 2:59pm
Spelling error...Sympathetic Nervous System. SY, not su Reply
Patty, Community Member
3/19/13 1:28pm
******Attention******Very Important Info for SCS Sufferers!!!***** First, I am a SCS patient, like you, who has many various horrid side effects from the SCS. I am NOT a lawyer, rep, nor making any money by requesting SCS patients like yourself to report your side effects to the FDA. Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is listed below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years, (just read my posts on this message board) http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Alexis, Community Member
1/18/13 1:14am

I had scs implant surgery back in Aug '11. The trial went very well, so I thought the stimulator would definitely help with the excruciating pain coming from L4/L5 and S1. I could barely walk. Sometime in April '12, while moving, I tripped backward and fell. I really didn't get hurt; didn't feel any back pain, so I forgot all about the fall.

A while later when I used my stimulator, it shocked me terribly. It was 'stimulating' my chest, armpits, & neck when it should have been stimulating my sciatica, my right leg, and lower back. I immediately went to my surgeon and had the stim tech there too. Apparently, the fall I had a few months ago caused the leads to move up thereby causing the stimulation to move up. After 2 surgeries in one month to correct the problem, I've had a lot of different side effects occur. Chronic Fatigue Syndrome, muscle spasms of the arms, legs, feet, inability to regulate my temperature, incontinence (I can't it to the bathroom in the morning or at any given time during the day). I also have what I call a 'bite' at the bottom of the incision because it felt like a spider bit me the night of the surgery. It STILL feels like there is a bite there, and it itches terribly.

Now, more recently, my partner has noticed that 'green stitches' are breaking through my skin. All of stitches were removed, but these keep coming back. My partner keeps clipping them. The other day I saw the doctor and he told me that those stitches were on another layer between the leads, the box, and my skin. He stated since the stim was working properly (it is), there was no need for concern. He advised to keep clipping them but not to 'dig' for them. Is this the beginning of my body rejecting the stimulator? Has this happened to anyone else? Thank you in advance.

Reply
Dawn G, Community Member
1/19/13 11:57am
Alexis.......you have the same horrible side effects that many of us have from the SCS. The temperature intolerance and muscle spasms I think are the worst. .....many of us that have had the stimulator removed are still suffering from these issues and the doctors don't know why, or, if they will lessen in time........................your "bite" sting may be from the cutting of the skin. Our skin is covered with nerve endings which are cut when the skin is cut. They do regenerate, but it takes a significant amount of time. Your stitches should not be coming through the skin. When the surgery is complete, the doc sews your insides together then sews your skin closed. The inside stitches should remain deep and dissolve on their own when the healing has occurred......do not pull on them, just cut at the surface. You do not want any area at the site to open, bacteria could get inside by riding along the stitches. .......if that occurred you could end up with a nasty infection......I am surprised you weren't told to put an antibiotic cream and a bandaid over the area.....keep an eye on it.......... You say the SCS is working properly, yet you have the other problems......remember the trial? .....you did not have any problems then did you?......... Reply
Alexis, Community Member
1/19/13 3:17pm

Thank you for responding, Dawn. The trial went fine and the doctor basically cut it short to get the surgery started which should have up some red flags then. However, I felt that things were moving so fast, and everytime I tried to slow it down to ask meaningful questions, I felt as though I was getting the run around. I was in so much pain at the time and on so many painkillers, I just wanted it to stop. I wanted to believe that this was the answer. While it has turned out to be more than a partial answer, the side effects are questionable. The stitches that are breaking through are coming from another layer of stitches holding the leads. It seems to me that if those stitches are not staying in place, this can only mean that my body is rejecting the SCS. My first original surgery was to remove a synovial cyst from L4/L5. According to my doctor now, the original surgeon cut a bit too much from my spine, and this caused my somewhat inability to walk and be in absolute excruciating pain. That was back in 2008. The VA (who did not do the 1st surgery) basically refused to do anything for me except some epidural shots which did not work. I finally got some private health insurance through my job, and here I am. I am very concerned about those stitches and the implications in the future. I do not know what to do. Any advise???

Reply
Dawn G, Community Member
1/19/13 6:14pm
Alexis......first off, the trial. It goes well for most people. As it did for me. For years of pain and needing to be off the meds, I went for the stim. the trial took all my pain away. I did have GI upset though. he high intensity of the pulses of electricity made me very nauseous. IF I kept the stim on low, it work and I could handle the nausea............The night home from the hospital I vomited for 14 hrs every 3 to 4 hours. My wires migrated due to the violence of vomiting.....I suffered for weeks until the rep said it's time to look and that is what was found. And I rarely used the stim because of what it was doing to me. By the time it was removed, 45 days later I could barely walk.....................so the trial time was not an indication of future problems..................... ..Previuosly you stated that the doctor said the green stitches were in between the leads, box and skin.....Yet now you say they are stitches that are connected to stitches holding the wires in place....something is amiss here.......you do NOT have stitches holding stitches in place......where exactly are the stitches????....I must conclude that the stitches are in the musculature under the skin that he closed.....any stitches connected to the wires should not be any where near the surface of the skin............if those stitches are holding the leads in place you have a problem.....because they are breaking, the wires are not stabilized and will migrate...........only the doctor knows because he placed them..............I can't stand it when a surgeon does not tell the patient exactly what they need to know........you certainly don't need the added stress of wondering what is happening...... Reply
Alexis, Community Member
1/20/13 12:17am

Hey Dawn,

 

I am sorry if I wasn't clear (the doctor certainly isn't). These are not the stitches that he used to close the incision. These are break-through stitches coming from within my skin. He told me not to worry as long as the scs was working, but logic and instinct tells me that these 'stitches' should not be breaking through. I'm ready to wake up one morning to find the 'box' laying on the bed. I hate to seem like an alarmist, however, I have read everyone's post here and can only wonder what is going to happen. My doctor even mentioned a woman whose scs was totally rejected by her body and it came out. Not only was she in excruciating pain, but she is now paralyzed and in a wheelchair. Geez...ya think that would have been good to know before the surgery....Thanks again.... 

Reply
Dawn G, Community Member
1/20/13 3:57pm
ALEXIS....I assumed the green stitches are not the skin stitches.......but where on your body are they?...Is the IPG, the implanted pulse generator, which you call the box or battery implanted in your butt?..Is that where the stitches are coming from?..............assuming this is the case, there are 2 possibilities here.....the wires may or may not have been sutured to the muscles then attached to the IPG. The IPG may or may not be sutured also. This is the surgeons preference.......when they close you up, the subcutaneous fat and the fascia which is the thin membrane covering that is sutured closed......then the skin is sutured closed.........the most likely case is the closure of the fat layer.... That is probably where they are coming from and why the doc wasn't that concerned.............As the healing begins, slowly the stitches should dissolve, if they are not the dissolving type, they just remain in place and the bodies own tissue grows around and into them.........Think of a bullet being left alone in a body, it does no harm and will always be there..............Because the stitches are protruding, they may be getting pushed out by the healing process itself..........This is not a common occurrence, and nothing to "fix" at this point........as long as the area is not OPEN and no bacteria get in, you should be alright.....once they stop protruding, what is left will heal around any remaing stitches......think of a sliver under your skin......the skin heals around it, when it hurts or gets infected, you have to open the skin and get it out...........so as long as it is okay, you will be fine......................as for the box coming out, well that can happen also, but you would feel it little by little trying to push through the skin.............I could never sit without pain, the IPG always placed a significant amount of pressure on the surrounding tissue in my butt..............What is more of a concern is the other problems you are having......you should only be feeling the pulsation of the stimulator......Are you still having other issues? Reply
Patty, Community Member
3/19/13 1:27pm
******Attention******Very Important Info for SCS Sufferers!!!***** First, I am a SCS patient, like you, who has many various horrid side effects from the SCS. I am NOT a lawyer, rep, nor making any money by requesting SCS patients like yourself to report your side effects to the FDA. Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is listed below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years, (just read my posts on this message board) http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Patty, Community Member
3/19/13 1:22pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years, just read my posts on this site for my SCS nightmare http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Phil, Community Member
1/26/13 11:55am

Right after surgery I lost the use of my arms and legs, they just had no pathway to my brain.  Starting about a week out I started having tremors in my arms, legs and head.  The doctors are saying they have never seen this kind of symptom and they do not think it is related to having the implant.  Strange, I did not have these tremors before the implant and it does not matter if the stimulator is on or off.

I also have been very ill and have weird sensations in my legs.

 

If anyone has any simular problems or has an answer I would like to hear from you.

Reply
Dawn G, Community Member
1/27/13 9:04am
Hi Phil.........listen to your body....you know there is something wrong, and it probably is the SCS.....If you read the posts here you will see all the horrible side effects we have from the stimulator......your tremors are muscle spasms and they are horrible, I know......I had begun having difficulty with my legs also.....having the stim removed helped with the loss of control with my legs but not with the others symptoms....I am on muscle relaxers, anti inflammatories and the pain meds. ........all the doctors tell us they have never seen these issues before.......this I find hard to believe because of all the people here having the same problems.....some are worse than others, but the issues only started with the SCS........if I had done more research and looked for problems related to the SCS I would not have done it.........and of course the docs won't tell you about these problems........I would get it removed....my problems began the day I came home from the hospital....no coincidence here, it is obvious....... Good Luck Phil.......post what happens with you..... Many people follow along for the info.... Reply
Patty, Community Member
3/19/13 1:26pm
******Attention******Very Important Info for SCS Sufferers!!!***** First, I am a SCS patient, like you, who has many various horrid side effects from the SCS. I am NOT a lawyer, rep, nor making any money by requesting SCS patients like yourself to report your side effects to the FDA. Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is listed below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years, (just read my posts on this message board) http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Hope4today, Community Member
1/28/13 10:28pm
I have had terrible spasms,fatigue. And flat out pain in my shoulders every day for 2years now Reply
Patty, Community Member
3/19/13 12:51pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
kimme, Community Member
2/ 6/13 1:22pm

I am also having problems with my implant. It worked for a while now I'm having swelling and numbness in the left side of my body. I have no sensations that over rides the pain anymore.it's very discouraging and very depressing. My doctor wants to wait for to months. In the mean time I'm suffering. Any suggestions? For those of you who pray. Please pray for me and I  will pray for you. Thanks and God bless.

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Dawn G, Community Member
2/ 7/13 8:50pm
Kimme........have you called the rep? If your unit isn't working properly the rep needs to know and they can see what's happening and making changes with the settings. But the swelling is not good, and waiting is never the right answer....call the rep.... Dawn Reply
kimme, Community Member
2/11/13 12:48pm

I took your advice and called my rep. With xrays it appears that the leads have moved as well as the battery. I am going to.have another surgery to have the battery moved and the leads replaced. I am not looking forward to it. The swelling is because the leads are causing inflamation in the area it moved to. I was wondering if this is common.

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Dawn G, Community Member
2/11/13 2:54pm
Hi Kimme.......Glad you didn't wait. Swelling like that is always a bad sign. The reps will speak up and ask the doctor for the X-ray, even if the doc doesn't think it's necessary.......................... I hope all goes well with the surgery.........why the battery and the wires moved is not a good sign.......especially when you are getting zapped where you shouldn't be...........very dangerous and can lead to permanent injury like mine did..............I take it you were behaving yourself during recovery?? Not supposed to raise your arms at all, no physical activity, which is extremely hard to do..................Good Luck........Dawn Reply
walking tall, Community Member
3/ 4/13 5:36pm

Hi Dawn......my stimulator locked up on me as well.....I had to unplug it and stop the continual zapping.....it left me paralized for two weeks in the hospital.....I had to learn to walk all over again and left me with many complication for the rest of my life

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walking tall, Community Member
3/ 4/13 3:03pm

YES.......it caused me to develop a hematoma inside my vertibrate...they had to remove it the next day and it left me paralized from the waist down for two weeks.....I can walk now....but left me with many complications.

rhoward45807@yahoo.com

 

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Dawn G, Community Member
3/ 4/13 8:19pm
Hi Walking Tall..........I am so sorry for what the SCS has done to you. ...they are so dangerous... When I began losing control of my legs, then the doc realized it had to come out. It never did anything positive for me, only negative. .....I am glad I had it for only 45 days......... I have made a report to the FDA. It is a MedWatch Form 3500.... This is a report called an Adverse Event of a medical device........ W T, I am so glad you are able to walk. I am hoping I will improve with time, you and the rest of us. If you go online you can fill out the form, it is quick and easy......the more people that report the problems due to the SCS, the better our chances of having the medical community find out what is happening and stop it. Plus find a way to heal those of us in need. Good Luck to you And I hope you stay Walking Tall. Dawn Reply
walking tall, Community Member
3/ 5/13 7:46am

Dear Dawn......Thank you soooooo much for your kind words ....your ideas were very helpful as a way to help educate this SCS community.....but I think the other way to well stop this insanity is by getting into the pockets of these SCS manufactures.  I am looking for a class action law suit to join.   Have you heard of any.....??????

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Dawn G, Community Member
3/ 5/13 5:42pm
hi Walking Tall.............there are many people at other web sites I visit, with the horrible issues we face because of the SCS............There are NO class action suits going at the moment. The Lawyers will not get involved unless there are more reports............ ......Thus I am trying to spread the word with the report to the FDA....That is the first step. I have posted on other sites also.........so you too can help by posting after you file and spread the word.................. I do NOT want to live with the agony caused by the SCS. It has helped many and those people I am so happy for. But for the hundreds of others that have posted, like you and myself...we need to have the doctors find out why it causes debilitationg side effects and try to find a solution. Right now all the doctors tell their patients that they have never seen this happen before, and don't know what to do.............. Thanks for helping ........Feel Better.....LOL.............DAWN Go to the FDA site for MedWatch Form 3500........file a voluntary adverse event due to a medical device .............................. Reply
Patty, Community Member
3/19/13 12:50pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Kay08, Community Member
3/19/13 12:05pm

Hello all, was wondering if anyone else had issues such as my fiances. At the end of 2012, he had a SCS implanted. The trial went well, and the first few weeks, the SCS seemed to be working great, and he was able to get off all of his pain medications. About a month later, thinks went drastically down hill. He started getting headaches, and constant diarrhea. At first, we thought he was sick and went to our family doctor who gave us antibiotic, but it didn't help or get rid of his symptoms. He resorted to buying immodium at the grocery store, and I can't tell you how many bottles he has gone through of it, and STILL has diarrhea! He also noticed that if he turned the SCS off, the diarrhea would subside and his bowel movements went back to normal, if he turned it back on, the diarrhea would come back shortly after. We went back to the person who did the SCS implant, and met with our rep from Medtronics to discuss these alarming symptoms!  But sadly, that didn't help at all. They told us they NEVER heard of anyone having diarrhea from a SCS, and that it is completely impossible. They tried reprogramming his stimulator, as he did note that it felt like the stimulation was going into his stomache. After they successfully removed the sensations from his stomache, we went home. Upon arriving home, with the SCS on, his diarrhea came back. After a few days of this, he got another symptom. His left buttcheck has a TON of pain, which he did not have before being implanted (Mind you, the battery is in his RIGHT buttcheck!). Accompanying the horrible left buttock pain, he also had numbness feeling by his "area". Alarmed, we went back to the person who did his SCS and met with the Medtronics rep again. As like before, they continued to deny that his SCS could be doing this. We went home with absolutely no resolve. The next day, I took him to the hospital as the pain in his buttocks was radiating and becoming completely intolerable for him. They did cat scans, and thought his disc was ruptured. They transferred us to another hospital, where they injected his spine with contrast for a clearer image on the cat scan. The specialst told us, upon reviewing the new scan, absolutely NOTHING has changed in his back, and wouldn't be causing his symptoms. He told us the only thing he could think of that he had done that changed recently, was the stimulator! And he believes that is the culprit. While in the hospital, the person who did the SCS was suppose to see us, and never did. He was discharged with pain meds, and told to see his doctor to get more until this was resolved. Several messages was left with this person, who never called back. Our Medtronics rep now is on our side, and believes the best thing to do is take it out and see if it clears up the symptoms. We are so upset by all this. He was so happy to be off pain meds and live life, only to go back to it and have no resolution. I wouldn't reccommend this to anyone after what we have been through.

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Patty, Community Member
3/19/13 12:31pm
Hi Thanx for sharing your story and I am very sorry to learn about your fiance's problems with this SCS. From my own horrid experience and learning of others, absolutely 100%, do not pass go, do not collect $100..... Go immediately and get that darn SCS removed ASAP!! And let me add that the fact that your doctor never heard of any problems from the SCS is also a big fat lie! If you want to make sure this doesn't happen to anyone else, and also to hopefully to get some resolve to these issues, please go to the FDA website below and fill out a form explaining all the adverse side effects from the SCS. The more they know from all of us SCS sufferers,the more reason they will have to get doctors and manufacturers of the SCS to FULLY disclose ALL the side effects before implanting the SCS, which believe me, they don't ever do. Plus if FDA has enough complaints, then we can hopefully put in a class action lawsuit against these SCS manufacturers and those lying about the problems the SCS cause. The more people that talk about their experiences with the SCS, the better. I just wish people would read this message board before ever getting the SCS implanted in the first place. Good luck and please keep in touch here to keep us updated on your fiancées health. Wish him well. -Patty http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Kay08, Community Member
3/19/13 1:18pm

Thanks for the support! I knew he was lieing! There is just no way it isn't from the SCS. I will let you know what happens here, and thanks again for the wishes! Like you said, they only mention what I deem as 'minor' side effect, not any of what is going on with him. I will have him fill out the form you provided! This can't go on anymore. Also, if his doctor continues to deny, I found, luckily for us, a website that does detail gastrointestinal issues related directly to SCS, which I'll post here if anyone else is having gastrointestinal issues from a SCS. Here's the link: http://www.livestrong.com/article/251830-adverse-effects-of-spinal-cord-stimulation/

 

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Patty, Community Member
3/22/13 12:04pm
Thank you,Kay, for sharing your story and please keep us updated on your fiance's health and any other info you may come across that other SCS sufferers can benefit from. Thank you also for filling out the fda form and please know that you are not alone in all of this. Patty Reply
Patty, Community Member
3/19/13 12:49pm
******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Bonnie, Community Member
3/21/13 9:02pm

Hi Patty,

I'm posting this a second time in hopes of having it post at the bottom where it seems the most current posts are.

 

Mark Jean's post about leg swelling caught my eye and I had to respond.  My husband had a Boston Scientific stimulator implanted in 2010.  Two hours out of surgery his right foot began to swell.  The swelling worsened over the next couple months to include his entire leg.  During this time he also had problems getting the stim to work in the right places, pain when lying on his side where the battery was implanted, sharp "needle pokes" to his eyes and face (his doctors assured him it had nothing to do with the stim since it was implanted in his mid back), numbness in his hands, bladder and bowel problems.  He begged for a year for them to remove it.  They finally did almost a year to the day of implant.  After removal his symptoms got progressively worse.  His swelling progressed to his left foot and leg and eventually up into his torso.  His skin on his feet, hands, and lips started splitting and bleeding.

 

He passed away on Feb. 13, 2013.  He went in his sleep after over 2 years of agony that started when the stimulator was put in.  By the time he died the swelling had progressed to his face, to the point that he could hardly open his eyes.  He was only 42.

 

This product is dangerous and should be taken off the market.  I'm curious who gets the kickback for selling this thing and then do they get paid by how long it's left in?  They sure don't bother to mention all these side effects.  Please, please, please let me know if a class action suit is started.  I don't know how to give contact info without giving it to everyone on here but I will watch the posts.  Thanks.  Bonnie

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Bonnie, Community Member
3/21/13 9:09pm

I just posted a long rundown for Patty about my husband's problems with the spinal stimulator.  One of the symptoms I forgot to list is muscle spasms and the feeling of his toes being pulled under.  He also started getting muscle twitches in his arms (I had to duck a few times) and towards the end started getting "parkinson's like" spasms in his hands

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Patty, Community Member
3/22/13 11:46am
Hi Bonnie! First of all, my deepest and most sincerest condolences to you and your family with the sudden loss of your husband. Your husband is the first person I've heard about that has passed away from SCS complications and side effects. Now, I am not a specialist, merely a former patient of the SCS and a chronic pain patient who started this thread over 4 years ago, to simply learn and share from others about all the horrible side effects of the SCS and so we know that we are not alone in our pain, suffering and struggle. Even though our docs have told us time and time again that they've never heard of our side effects, we know otherwise, and being lied to is not acceptable when it comes to our health and our lives. Bonnie, I thank you very much for sharing your husband's story. I have heard of extreme swelling as a side effect from the SCS, in fact I had it in my arms, hands, legs, feet, and face as well. The swelling would be so bad and cause so much pain from the skin stretching to its breaking point. At the same time, the swelling also caused numbness as all the swelling would compress nerves as there was simply no more room. My swelling started the day I woke up from the SCS surgery and has continued well after I had the SCS removed 9 months after implantation. Your husbands ordeal is much worse than what I experienced, but please know that I understand what you and he were going thru everyday for those 2 years. All I can say is that I am sooooo sorry. I wish that I could have warned you and your husband before getting the SCS in the first place...that is one reason I started this post in the first place, to warn others of all the side effects first so that the same thing wouldn't happen to them. Bonnie, again thank you for sharing your story. All I ask of you is to keep sharing your husband's story as to hopefully save someone else's life....please fill out the FDA form ASAP so that they can hopefully start some actions against the SCS manufacturers to get it off the market. All of us who suffered from the SCS need to band together and complete the form as this is necessary before a class action can ever begin. We need proof, and we need patients whose lives have been turned upside down from this SCS to speak up. Please, Bonnie, please fill out the FDA form not only for you and your husband but also for the rest of us who are still suffering and to prevent others from getting harmed from the SCS in the future. Thank you!!!!!! Patty http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm ******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm Reply
Bonnie, Community Member
4/14/13 3:29pm

hi patty,

 

I filed the fda form 3500 report on March 25.  This past week I got a letter from them with a case number.  It only took them two weeks to respond.  I don't know if this was quicker than normal because my report involved the death of my husband?  I went fishing on the fda website and was finally able to access the reports that have been filed.  It can be filtered by injury, death, etc.  It is unbelievable how many are listed under "death" and every one states that it was not caused by the SCS!  Mine wasn't listed there yet though.  Apparently, it's only updated once a month.

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Dawn G, Community Member
3/31/13 8:15am
Thank you Patty for keeping up with the FDA Adverse Event requests. I can't get online often enough. Some info to share.... Once the online report has been made, about a month later, you will receive a letter stating that the report is in progress and you will be given an access number. ............at that point the file in online for you to access. She there are plenty of reports, between you, myself and others we will be ably to get a lawyer involved. Thank you for your online, ongoing support in this endeavor..............Dawn Reply
Patty, Community Member
4/ 1/13 12:32am
Thanx dawn for all the info u have shared and continue 2share about this. :) Will keep u updated. patty Reply
Bonnie, Community Member
4/ 3/13 12:34am

Hi Patty,

 

Just wanted to let you know I went to the FDA website and filed a complaint on my husband's behalf.  I also have a friend with a SCS who is having problems and I gave her the website to go to also.  Is there a way to see any/all complaints that have been filed?  It seems like it should be public knowledge.

 

Bonnie

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Cheryle, Community Member
1/27/14 3:16pm

I am writing because I had a Spinal Simulator Implant Surgery on Oct 5th, 2013 Now Jan 27th, 2014.

I had two leads from my middle back to my shoulder blades and two leads from the middle of my back to the bottom of my spine.

I was told it was a smail insistion, but I have a 4-5" scar in the middle of my spine and another on my right side.

I can hardly walk or do anything like laundry and doing dishes.  I thought I was in a lot of pain before? a 8 on average.  There is no scale for how I feel now.  The pain is horribe.  I generally keep the bottom setting at a 30 just to try and cope.  The above one is not used, becuase thet have not been able to adjusted properly.  Mine is from Boston Scienfic.

I feel as though I was lied to for an expensive procedure that I was told was would change my life.  I just didn't know it would be for the worse.

I did ask questions before hand.  I was told I would be feel much better in two weeks, I asked if I could still use a heating pad.  The doctor said he was not sure, but didn't see it as a problem.  So basically he nodded to indicate yes.  What uspet me the most this week at an appointment was when he asked to see the scars and said it looked good and..."your scar looks good and not all lumpy and disfigurted from using a hot heating pad like I've seen others do??????   Why would he not have said anything.  I uses one every night and a lot during the day.

I have never imaged my life could be so ruined by somethig that was supposed to be so great.

I'm general an outgoing person and very friendly.   All I do is stay at home and try and do small things.  I was disabled before but could work a small amount of the time.  Now I can not.  I do not do crafts or art project anymore either.

I have never been a depressed person.  I used to listen to audio books and used art therapy as a form of getting my mind of of pain.

Im lost, I dont know what to do.

I feel I am stuck with no life and no help

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janet, Community Member
3/21/13 4:06pm

Hi,  I had my SCS surgery 10/11/2012.  The day after the surgery the representative came in to turn the stimulator on when she did I had what felt like a jolt of electricity shooting into my rib.  She cut the machine way down and I still felt the uncomfortable feeling.  She stated that my nerve had probably been aggravated during the surgery and that the nerve should calm down.  More adjustments were made in the weeks to follow along with stronger meds.  The stimulator helped with the original problem in my lower back but the pain on the right side outweighed the relief that I was getting.  I stopped going back to the surgeon, he just kept saying hmmmm that nerve should have calmed down by now I don't understand.  Xrays showed no problem.  I went back to the pain dr after several pain injections with no results, CT scans showed no problems.  But like many of you I know something is wrong.  I am now being forced into retirement, the loss of my home and moving in with the family.  I am on so much pain med, now I am falling because of balance issues.  Along with so many other issues.  Final word from the pain dr nothing can be done, stay on pain meds and hope that the nerve heals soon.  The stimulator has not been used in months.  I am now going to the recommended FDA website to voice my concern there.  I wish everyone the best.  Thanks for listening.  I am so sorry that we all had such high hopes in a device that we all felt would make our lives so much better and instead we got nightmares.

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Patty, Community Member
3/22/13 11:24am
Hi Janet! I am so very sorry about your problems with the SCS and all that it has taken away from you. I appreciate you sharing your story here and also filling out the FDA form,too. The more of us who speak up and share, the better. Again, I'm very sorry about all your pain....hang in there, that's all we can do. Patty Reply
janet, Community Member
3/23/13 11:10am

Hi Patty,

Thank you so much.  Janet

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Bonnie, Community Member
3/25/13 9:50pm

Janet mentions how everyone who has gotten a SCS had such high hopes for pain relief.  I think the companies and doctors depend and prey on that.  A person who is in debilitating pain will jump at the chance to have relief.  I think it really helps the doctor and the company push it through without the patient really questioning the information given them.  They just want relief at any price.

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Bonnie, Community Member
4/29/13 3:41am

Hi Patty,

I went to the webmd website to try to chat with others with these horrible side effects but couldn't figure out how to get to the chat part.  I did, however, find an advertisement for a law firm representing people with problems from SCS's.  Meyerson Law Firm.  512-330-9001.   Ever hear of them?  I'm going to call them tomorrow.

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Bonnie, Community Member
4/29/13 3:43am

Hi Janet,

I went to the webmd website to try to chat with others with these horrible side effects but couldn't figure out how to get to the chat part.  I did, however, find an advertisement for a law firm representing people with problems from SCS's.  Meyerson Law Firm.  512-330-9001.   Ever hear of them?  I'm going to call them tomorrow

 

 

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Patty, Community Member
4/29/13 11:31pm
Bonnie, Thank you for your posts and the info regarding the law firm interested in SCS patients. As soon as I have a moment, I too will look into it and let u know what I find out. Again, thanks so much for any and all info you find and for sharing it with the rest of us. Take care and be well. Patty Reply
Dawn G, Community Member
6/ 8/13 11:26am
Hi Patty and all my fellow SCS sufferers. I have been off the site for a while...... I have reached out to a law firm here in Ct and they read my synapsis about my SCS story. They DO want to speak with me. Unfortunately I was not home FRiday and did not receive the message until late. I will be speaking with the law firm rep on Monday. Hopefully this WILL be a start.......... I see the info here on the Meyerson law firm. Has anyone actually spoken with them yet???????. I have been back to work on an as needed basis, because that is all I can do. Working is so very painful and takes all my energy. I have not been able to see another neuro surgeon. None of them will see me because they did not do the surgery, same with an anesthesiologist. So the only doctor I have now is my rehab doc. And he says I must be healed by now, and that my muscle spasms and the other problems that started are all due to an anxiety problem!!!!!!!!!!! Yet he has never taken care of someone that has such an injury. Unbelievable!!!!!!!, He wants to decrease my meds....................am I not suffering enough......? Hopefully I will be back here with good news from the lawyers.......will keep you informed. Dawn Reply
Frances, Community Member
5/18/13 11:10am

Patty,

I could cry. Your reaching out caught my eye.  I am 67 and had the stimulator put into my lower back., about two years ago.  I began to have a very serious pain in my left thigh.  It felt like a hot iron (one you iron with)

put on top of my leg.  As the pain grew, I noticed it begining on my right thigh.  I have a high pain tolerance but this was rediculous.  I finally stopped recharging it.  The pain didn't get any better for a long time.  I had pain shooting thru my leg like it was a razor blade going down to my knee.

After turning it off, I began to have more pain than I had to start with.  Now I am living on pain pills, and dojn't have anywhere to turn.  I am having the stimulator  removed sometime this next.  

When I saw your question  on the list of thos who are suing St. Judes.  I feel they have ruined the rest of my life.  I didn't know where all this pain was coming from.  My shoulders, my neck, I have to sleep on my back all nite.  I keep a pain pill beside my bed, because to get out of bed when I need one, is excrutiating.  I could go on, but it makes me sick to know that the information was known before they put the stimulator in.  

Believe I have your back.  Have you thought about going on line and putting your name in for the class action suit.?

What has blown me away is I have no place to go to understand my pain, now I do.  I'm not crazy.Laughing Your explanation of side effects explains why my R. Arthritis has come back, and why I now have such painful hands and nodules have begun to form.  I've had it since I was 21.  I only had the pain and fatigue, and now it's starting to cripple me. I could go on explaing all the issues I haven't understood,but maybe you have questions.  And daisies are my favorite flower.   FrancesSmile

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DaleC, Community Member
5/31/13 3:20pm

First off I don't want to come off as rude, but I would like to know how many of you having problems workout and exercise and are "in shape" and otherwise healthy. I too am looking at having the SCS done, in fact I just had my psyc eval and am waiting on a date to install the trial.

 

I have had 2 spinal fusions on my lower back, one in 05 and the level above done in 2012. I am very active and participate in multiple endurance races and activities. I am looking for something that will end any need for drugs. I am wondering if your level of fitness directly impacts the results you have from the SCS.

 

Any input from other "athletes" would be welcome, I am also Active Duty military (21 year USAF) and don't want to risk my career and the job I love just to get me off ULTRAM and Neurotin everyday.  Thanks

 

 

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Jess, Community Member
8/15/13 11:02am

Hi Patty,

 

I am 22 years old and have had the Stim for about 18 months now. 6 years ago it was determined I needed surgery for degenerative disc disease, after that surgery, I developed chronic low back pain. I was introduced to SCS by a pain management doctor and then given then implant. Immediately after the implant, there was a decrease in the original point of pain that I had been having for several years. However, in the past several months, I have noticed an intense pain around the battery location, my right buttock area, and the pain is 100x worse than my original lower back pain. This pain seems to go all the way down to my toes and at times I cant even move my leg because of the pain. This has been keeping me awake at night as it happens regardless of which side I lay on and laying on my back is impossible. A few weeks ago, I could not connect to my charger to recharge. Since I had just returned from vacation, I thought that my battery must be dead and needed a “power-charge” from my reps programmer. When I called him, his programmer would not connect either. He sent me for xrays to see if the battery possibly moved. He said if that is the case, I may require another surgery…I am just starting to wonder if it is even worth it to “fix” the stimulator. Has anyone else had pain around the battery that is so obviously from the stimulator?

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Patty, Community Member
8/16/13 10:23pm
Hi Thanks for writing in with your experience and symptoms with the SCS. I have heard about others having pain where there battery packs are located, but not to the point where it radiates down to your toes and prevents you from sleeping...plus you can no longer charge it. Sounds like some serious issues going on there. You need to decide if the pain relief you have been getting thus far is worth the pain and issues you have now and may potentially have in the future. If you're not sure, read some more of these posts to give you an idea of what could happen to you if you leave it in, or get a new battery pack put in. But at the same time, its your body, your pain, totally up to you. If this SCS seems to be doing more good than harm for you, than go for it, but from my experience, and others on here , the SCC tends to do much much more harm than any kind of good so we may lean towards getting it removed. But again, that's your choice. Do some more research, read some more posts here, on other message boards, face books, etc.... Good luck to you. Let us know what you decide and I truly hope you do feel better!!!! Please keep in touch and keep us updated, ok. Thanks and feel free to message here anytime with questions, concerns or if you just need to vent frustrations, we've all been there. :) Take care! Patty Reply
Dawn G, Community Member
8/23/13 6:05pm
LAW FIRMS TAKING ACTION..... This is for all of us that have had our lives ripped apart from the SCS. We must have done a good job filling adverse events with the FDA. Because today, after months after giving up, I googled SCS law suits and there are two firms online looking for people to participate that have had problems with the SCS. The first one that shows up is the Meyerson Law Firm, this one I have sent my information. The page opens with all you need to do. The other is a Texas firm. We must have done a good job. So get your voice heard. Fellow sufferer Dawn Reply
Marilyn, Community Member
10/15/13 4:50pm

I had a Boston Scientific SCS implanted on 6-24-2013 and I couldn't be more pleased. It ias been almost100 % improvement. It has been tweeked just in the past month, and that was a breath of fresh air. It saddends me to know that others have had bad experiences. I still say that a LOT has to do with the knowledge of the implant and also the one doing the programming. Best of luck to everyone.

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Tonya, Community Member
10/16/13 1:42am

I don't currently have the SCS but my pain management Doctor is highly recomending that I have that I have it he first said let's try a tens unit then he said let me refer you for the SCS It may help you sleep at night. I had failed back surgery in April 2012 followed by a car accident in May 2013.  I suffer chronic pain in my lower back legs feet also since May my Neck right arm and hand and left hand I take 12 medication every 4-8 hours. Something has to give I hurt I don't sleep but 1-2 hours a day if I'm lucky.

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Brooke, Community Member
11/ 8/13 11:04am

Hello everyone!! I came across this site while researching spinal cord stimulators..I've had 2 back surgeries, including a spinal fusion because of a fracture..My pain increased after each surgery..I have stenosis, and herniated discs above and below the fusion--pretty much my whole spine hurts..My doctor who was prescribing my pain medication retired, and I was sent to a new pain management doctor..At my first appointment, the doctor told me that I was NOT a canidate for a SPS or pain pump because of my age..(I'm 33)..The doctor told me that since my pain is at a 4 or 5 with pain medication, that it was best to wait, and continue with pain medications at this point..(Sure there are times that my pain is at an 8 or 9, but for the most part it is at a 5)..At my second appointment with the new pain management doctor (only 2 weeks later), he told me that I WAS a canidate for a SCS, and that we spoke extensively about implanting the device according to his records..We DID NOT!! (Which is why you should always have another person at your appointments with you or record your visit!!)..At the first appointment, this doctor told me that he wanted to schedule me for facet joint injections, and even scheduled an appointment for the procedure..I'm not sure I trust this new doctor at all, considering his notes were inaccurate..The thought of having a SCS implanted scares me..I can't shake the horrible feeling..I am also seeing a rheumatologist for an autoimmune disease that causes joint pain, low grade fevers, swollen lymph nodes, rashes, etc..I can't imagine that implanting a foreign object into my body would be the best decision, considering my autoimmune disease..I'm not sure what to do at this point..I'm not completely opposed to a SCS, later in life..I feel that there are more conservative options, along with pain medications, to help alleviate my pain..Any information regarding negative effects of this device would be appreciated..Also, any information in reference to the SCS and autoimmune diseases would be helpful..I'm sorry this post is so long..Thank you in advance!! Hope all of you are doing well :)

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coco feliciano, Community Member
11/15/13 10:39pm

a happend to me am going thru alots pain right now i took tha scs four months ago it got infected i had four seguries in 6 weeks , right the pain is worse still burn from inside i cant bend i have to take a shower on a shair . the doctor never told me any side effects from this scs am suffering right now . the doctor lie to me he show me a small divece and the doctor put in body the bigges stimulator with out my approvel . what can i do my right leg is week and my lungs am having problems . i need help plz

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Patty, Community Member
11/18/13 12:19pm
Hi Cocco, I'm sorry to hear about your suffering, your ordeal and your situation. I know too well how you feel and how frustrating it is. If you are in that much pain where you can't stand up in the shower, had 4 surgeries in 6 weeks, and have problems breathing, go to the hospital....a different hospital than where you had the stimulator put in and where that doctor does not have privileges to practice. Please take care of yourself first and get some relief from your pain first, even if that means going to a differentain management facility....go to one associated with a major hospital if possible, not a pain clinic. Get seen and treated by a different pain doctor. Then when you are better, decide what you want to do, if there is anything legally to be done. See a lawyer and get their advice...usually consultations are free and they will tell you if you have a case, but you need to bring all your medical files, reports, everything. And it's very hard to prove malpractice or negligence, so just a warning... I've been down this road, and even though what the doctors did was ethically and morally wrong, there was no legal case. But the fact that you've had 4 surgeries in 6 weeks, were implanted with a bigger device when u were shown a smaller device (but doctors can explain that away at the last minute while in surgery saying that this bigger device was better for you....even though it wasn't), you may have some proof, but I am NOT A LAWYER, so I cannot advise you. So, my opinion, just get better, use all your anger and frustrations in getting and feeling better first, ok. I wish u the best. Let me know how you're doing, ok. Take care and feel free to write here anytime. Patty Reply
cas24, Community Member
12/ 4/13 4:22pm

Hi,my name is Kasey I am in the second day of my trial, I am havimg severe cramping and implant site is hurting very bad. I have injury to neck in racing accident,.4 surgeries in cervical  and 1 in my lumbar. I am so cunfused , what should I do. The rep.is tell me the medtonics is lifes bread, cadilac of all?????????

I live in severe pain and on meds oxy and morphine

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Patty, Community Member
12/ 4/13 7:17pm
Hi Casey! Sorry to hear about your pain and issues. First, never listen to the medical reps...they only make money when they make a sale. They'Re just salespeople trying to reach quotas and make commissions. You're just another number and statistic to them. Sorry to be so blunt but its true. Secondly, if during your trial, you don't have more relief from your pain than pain being caused from the stimulator, than don't bother getting it permanently implanted. That's why it's a trial....to see how it works for you. How many days is your trial supposed to last? Mine was 3 days while some others can be up to a week. Let me know how you progress and what you decide. Good luck,hang in there. I know ALL too well what you are going through and what it feels like not to have any other options. But just because this seems like the only option, doesn't mean it's the one you have to take or should take. Good luck! Reply
jayne isaacs, Community Member
12/ 6/13 11:18am

Hey Kasey,

So sorry to hear u r having the same symptons as i am having. I was scheduled for surgery 12/09/13 to have a revision on the battery pack located in my belly after being up all night reading the horror stories I called the drs. office and told them I want it removed! I have loss of sexual sensation and pleasure,I cringe when hubby wants sex. cramping so severe in belly i cant stand up straight, menopause symptons nausea,constipation,severe cramps when charging unit. Yes mine is coming out, I also am on lyrica 100 mg.3x's a day oxy morphine 60 mg 3x's a day perkocets 325/10 mg 3 x's a day, zana flex 4mg 2 3x's a day ambien 10 mg to try to get some sleep. i have become immune to the oxy morphine so dr. is gonna have to up mgs when unit is removed. We just have to take it day by day my friend as hard as it is. anyone who has not had a back injury (my injury was in 2002) will say i kno what your going thru!? No the hell u dont cuz you have never expierenced it. It is soooo painful it does take a big part of your life away! It is a judgement call honey if u feel it needs to be removed listen to your gut instincts and weigh your cons

good luck

jayne in ohio

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jayne isaacs, Community Member
12/ 6/13 1:41am

I have had the implant for about 6 months and have had severe period like cramps in my belly! I had a visit to the e.r. and they couldnt explain the pain i was having even after the ct scan came back normal. I cherge the unit and I get cramps like crazy,i disconnect it and the cramps go away. I am going in monday 12/9 to have a revision done on the battery. I chose the lower belly for the implant over the butt. When I wear my seat belt it aggravated the battery pack. when i felt the battery pack after implant it didnt feel any bigger than a tealight candle now it is 5 x's bigger around. the revision is to b planting the battery pack deeper in my stomach. Dr, said there is no way that the battery pack flattened out because of what it is made of. I am seriously thinking of telling him to remove it perm.

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Mat, Community Member
12/25/13 7:55am

Hi Patty:

 

  Boy, the good old SCS implant! I have had NOTHING BUT TROUBLE with my implants, yes plural, implants. The first was put in back in December 2002, it malfunctioned and could not be reprogrammed in June 2003. That one was replaced in September 2003. Again, within 6 months, if was failing and could not be reprogrammed and was yet again replaced in April 2005. By August of '05 it was again broken. I tried one more time, at the encouragement of my doctor, and had it replaced yet again in November of '05 and that one has now been sitting in me completely useless since March 2006. When they worked, they were FANTASTIC, of course my trouble is that they never seem to make it more than 6 months max. My doctor has been pushing me to get a "newer version" implanted but the operations are so AWFUL that I just have not done anything but let it sit there idle. My wife pushes me to get it out but I also worry about the possible consequences of even doing that now. I originally had a 1 in 1 billion side effect to a vasectomy that led to two operations and extensive nerve damage in my groin, lower back, and thighs. The implant was supposed to give me some coverage so that I could continue to work my 80+ hour weeks and be a productive member of society. Today, at 41, I sit on SSDI and HATE that I am stuck in this situation. Sure, I have and always will have the nerve damage pain but that would be nothing compared to the damage these SCS implants have caused me over the last 11 years now. In the last year or so I am experiencing different pains, from my upper back, shoulders, legs, arms, etc. that I am certain are due to this implant. Interstingly, EVERY single time they replaced the unit the doctor said it was all "twisted and mangled, and had to be cut out". Now everyone around me knows not to hit my back or the battery sight that is right above my right butt cheek and I have never had an incidence with either area. I do not know if my body simply rejects the device or if it was just a case of a pain mamagement doctor not truly grasping how to do the implants. I am going to see a neurologist next month, he is supposed to be a "top" physician for the SCS implants. I am leaning towards having it removed and just hoping that the long-term damage it has caused is not all that severe in nature. Due to HATING sitting around and not working, I am finishing my Masters and Ph.D. in psychology and will focus my Ph.D. on a concentration in counseling for chronic pain sufferers. My hope......to help others that have to deal with chronic pain and try to focus in on individuals who have an increase of this due to SCS implants. At this point in my experiences with the SCS, I would strongly urge those who are considering one to not get it and I would probably also urge those who have had problems to simply have it removed. However, I fully understand any hesitation of having it removed as those of us who have been through the SCS surgery or surgeries know they are probably one of the absolute worst to recover from. The human central nervous system is amazing and ANY implanted device can have very different affects on the CNS for any given individual. What may be perfect for one may have horrible side effects and consequences for another when you start messing with the spine and related nerves. Best of luck to EVERYONE on here that has had issues with an SCS, I feel your pain my friends.....literally!! 

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Patty, Community Member
12/29/13 4:59pm
Firstly, thank u so much for sharing your extensive story and issues relating to the SCS. You are a trooper for undergoing so many revisions and new implants to keep trying the CSS again and again. I'm very sorry to hear about all your pain and problems, as unfortunately I relate all too well, being in a similar predicament as you age and work wise. I would get the ads out if I were you and just move on bc it's not doing you any good sitting there in your body doing nothing, plus it might cause more problems down the road if anything else should leak, migrate, who knows with these darn thing....right?! Anyway, I wish you the best with your studies and think you will be wonderful at counseling chronic pain sufferers since you have first hand knowledge. Reply
Tina, Community Member
1/12/14 10:15am

I had my Boston Scientific SCS implanted 12/9/13. Since then I have noticed severe pain in both knees and both hips. Some days it is very hard to walk. I had it placed for back and sciatic pain. I know it has only been a month since I had it implanted, but was wondering if it could be causing my knee and hip problems. 

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Patty, Community Member
1/13/14 3:36pm
I'm not sure, but it wouldn't surprise me at all. If this pain is new since the implantation, keep track of it, and go see other docs for second opinions. Reply
rogover, Community Member
1/14/14 10:29am

I had the SCS from St Judes installed in 2009 and it was very large and implanted against me lowest rib on my right side and it stuck out about an inch or more where you could see it threw my shirt and on my fallow up doctors visit the doc. told me the reason it stuck out so far was that I had no fat on my ribs and he had never seen another person in hundreds he had inplanted the SCS in that had no fat on the ribs to hide the box in and pulled out a new box that was 1/3 the size of the one that was in my chest and said we should have waited a week for the new smaller one to come out (my doctor was involved in designing them and got money for every one that was sold under St Judes name) so after a few months he removed the huge one and put the smaller one in its place but after a year of healing the box against my ribs could be moved about 2 inches in all directions under my skin and he had to cut me again and make the pocket smaller (and here's where my major problems begin) after a few days of healing I told him it felt like my ribs were broke it was hard to breath and I could not sit up from laying down and had to get onto my belly and slide off the bed and fight back the pain to stand this went on for about 6 months and the doctor said it was just normal healing and there could not be a broken rib (with out any tests).  After a year of sitting still so the pain wasent so bad it started to feel better but I couldn't twist at far at the waist or I would get what I can only describe as a really bad cramp at the rib were the box is that could last between a min to 15 mins before it subsides (that I still get 1 to 3 times a day still to this day) was told again it was just healing, 3 days from my next appointment I got a call saying the doctor closed his practice because of medical issues and was given 3 numbers for pain doctors to call and pick one I liked and to call the office back give them the name of the doctor I chose and they would send me records over to them and none of the doctors would even talk to me until they had me records so I called the doctors back to get my records and the number was disconnected went there and the building was empty no one I called could find any records or the doctor and after a few months of no luck getting my records I goggled his name and found out the  doctor I trusted to help me and I let install the SCS was addicted to pain meds and was arrested a week before my appointment for stealing morphine and fentanyl from a hospital where he was installing a SCS in someone else and that the doctor had passed away a month after that, I went a year with out anyone looking after my pain needs or checking the SCS (because no one would see me with out records even after hearing about my dilemma). Now I found a new pain doctor who wanted to replace the SCS because it wasent working (within 1 month he had me in the hospital and replaced  the SCS). Ever since I had this thing installed -chronic fatigue - loss of energy - headaches - and the severe cramping in my side around the aria of the SCS box.

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Susan, Community Member
2/28/14 12:15pm

oh my god I am so sorrry for what you are going though, I have made an appointment to see my pain doctor to tell him I want this thing out, this was the worse mistake I ever made, us in pain so much all the time just want some relief even just a little so when the doctors tell us about this new thing that will help with the pain, they know we will jump at it, I told my doctor before that I was in pain and that I didn't do this to tride one pain for another, this time I am not going to listen to anything just get it out of me, I hope things are better for you Susan

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bobbi, Community Member
1/27/14 12:40am

i have had my stimulator for 2 years a year ago i was diagnosed with ulcertive colitis been on meds but they don't work so i am beginning to think that i don't have ulcertive colitis that it has something to do with my stim. my battery box was in my butt but it hurt to sit or walk so they moved it to my stomach but left the wires in my butt and about 3 months after they moved it i was diagnosed  has anyone had something like that happen to them anymore we have to diagnose ourselves becuse they just tell you it is all in your mind.

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Susan, Community Member
2/27/14 6:39pm

Hey I am hoping someone could help me I have the stimulator implant I had got it done in Jan 2013 and in july 2013 they had to move the box from my butt and put it into my side because it felt like it was going to pop out and it was really painful when setting down, so now its in my side and it is really painful there, my doctor said its because I am thin, well I just had a shoulder replacement 5 weeks ago and I just got back from my shoulder doctor cause I am in so much pain from the back of my left ear down behind the left side of my ribs, he said it had to be my neck cause that is killing me also, nothing is helping with the pain and the stimulator hadn't really helped from the beginning and when he moved the box it really doesn't help me, I am in so much pain more pain then when I began this stimulator stuff, any way my doctor toke xrays and confumed its not my shoulder that it is doing good, that it is the stimulator that I need to get it out please help someone has anyone been though this, with the pain, Thanks everyone Susan

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Iamatwittsend, Community Member
5/ 3/14 7:03pm

Yes, Chronic site pain for 2 years post implant removal.

Passing out without warning

Has anyone been able to find a lawer willing to persue this matter in court???

 

 

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big H, Community Member
5/11/14 8:00am
Hi there, I have a Nevro stimulator installed, I am very happy, it was the best thing the doctors did for me, the team who installed it were very professional, and the after care is perfect, I am sorry there are people suffering out there but I would be confident in saying there would be a lot more success story's out there. I unit has been installed for over a year now, and it is the high frequency type so I feel nothing at all and it runs 24/7, the only time I notice it is when I forget to charge it and the pain creeps in and reminds me real quick. Highly recommended it's changed my life for the better. I don't want to disrespect people and all the horror story's but the is always the other side of the fence to consider it could change your life for the better too. All the best Reply
3cat mom, Community Member
5/18/14 10:46am

i am three and half months post implants-two- and the chrger. after about 5 weeks i noticed when i shut it off-hours later i developed the most severe pain at both knee sites and lower leg edema. pain strong enough that i need help getting out of a chair.... i have follwed the pattern now and it is consistent. told my pain doc and they had nebr heard of this. so i am now nrevousr about using it. works like a miracle for my back. never had knee issues until this and?????? am trying acupuncture this week fo rthe first time.

 

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terrie B, Community Member
6/ 1/14 2:15am

I am in the process if having my SCS surgically removed after 5yrs of no help whatsoever.  Im experiencing every one of the symptoms mentioned at this very moment. My active lufe has come to a halt. Im very disappointed about the time ive wasted & the pain I experience daily. This SCS has got to go!

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terrie B, Community Member
6/ 1/14 2:22am

Ive experienced all those symptoms & I'm done with this SCS. 5yrs of nothing but aggrevation. Numbness, arthritis,  feet cold, etc. $90,000 for this? Medicare got gipped big time!  The doctors benefitted & all I got was a remote control & a recalled battery. Hows that for a tee shirt? Seriously im more than disappointed in my St. Judes SCS.

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pain101, Community Member
6/ 2/14 6:08pm

Hey Patty, before I answer the pain question please note and be aware of the following:

On cumadin there is no test phase so had to decide blind. So took out medtronic which didn't need charging for ten years and replaced it with nevro. One failed insertion with 6 weeks bleeding finally got a new one. Doubled difficulty if in a wheelchair because you're not supposed to sit for periods. Nobody told me wheelchair bad and no crutching from wound pain. If you are wheelchair user please note because they don't tell you the consequences of this operation. 2 months later still can't crutch and getting very worried.

 

I now use the machine on full power every day. You need to charge the battery charger for 2 hours every 36 hours and the body machine for a further 2.5 hours afterwards. Bit of a shock after medtronic no hassle. Too much said so far will answer pain question later. Bye for now.

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Spirit Girl, Community Member
6/ 4/14 9:04pm

I had the SCS implanted 03/10/2014.  We did the trial it helped alot but I seem to have had an issue.  At the time the trial was placed I had a major pain happen on the table the doc had not seen before.  We gave it about 2 min and it was gone so he continued.  After that that pain did not come back but anytime I turned the unit on it felts like a balloon was instantly blown up in my rib cage and the only way to get the feeling to go away I had to lean over into hunchback posistion. I then began to have pain in the thoracic area of my back.  I went in and had the trial removed and felt the difference without it and thought I need this unit.  I did discuss with doc what had happened in the trial and he really wasnt sure might have been your body needs to adjust.  We did the permament placing on 03-10-2014.  A 2 week time off work has become much longer.  Still not able to work.  Again anytime I use the unit I had the pain in thoracic area and gets worse the longer on.  I am able to use it at night without the pain but when I wake in the morning my entire thoracic area is soar.  He is stumped.  He has never heard of this.  He suggested that I go to see a Nuero-Surgeon and have the ends to the SCS changed to the paddle ends.  He sends this keeps the unit from stimulating the skin only inwards.  The way he implants they stumulating all around nerve.  This is set for 06-10-2014.  The Nuero as well has never heard of this type of pain.  They do not know if this will help or not.  If it does then once I have my hip replacement done then I can maybe return to work.  If not I am being placed on permanent disability as I am in so much pain from failed back syndrome and the osteonecrosis in my hip, I know longer am able to.  I want my life back but unfortunately the Lord has something else planned.  19 yrs on the job.  I really do miss work. 

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By Patty, Community Member— Last Modified: 10/13/14, First Published: 06/28/09