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. =)
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 !!!
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.
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
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.
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.
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
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.
I would like to say that I come from Netherlands sorry for the language errors
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..
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.
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:)
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.
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? ?
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.
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!!! :(
My husband went in for the trial implant 20 minutes went to 2 hours. Never got the unit installed the Dr, said there was to much scar tissue. They damaged a nerve and he is in extreme pain, they gave him fentanyl and toradol for his unbearable pain in his right calf and foot, then the nurse and Dr got him dressed and put him in a wheelchair and someone pushed him to the vehicle. The Dr said the pain would go away in a few days. This is the 4th day and the pain is so acute he cannot stand to have anything touch his leg or foot. He can only get up with a walker and his right foot is very swollen. The surgeon is also his pain Dr. and he doesn"t have an appointment until next week. His blood pressure is running very high I feel this is because of the pain. Has anyone had this happen with the trial surgery.
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
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.
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.
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?
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.
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!
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.
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. =)
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
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 firstname.lastname@example.org 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.
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.
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!!!!!
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...
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.
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 email@example.com
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
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.
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.
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
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.
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 !!!!!!!
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
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.
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.
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!
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
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
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.
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.
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!
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 !!!
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.
i am so sorry to hear about ur mom and all that she is going thru with the scs.
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?
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. :(
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.
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!
No problem,I did it myself when I first started posting! Nicoletti.
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!
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.
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
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.
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.
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.
Thank you so much. Janet
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.
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.
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
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.
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
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.
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.
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
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
thank you i now dont feel crazy, i have most of the same systoms. mine comes out this tuesday. Roxies
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,
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.
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 firstname.lastname@example.org I realise that if I acheive my degree no company is going to hire me due to the pain meds............
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 .
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!
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.
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.
It made me extremely sick to my stomach.
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.
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.
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!
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.
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???
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
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.
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.
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
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.
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!!
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.
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
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
jayne in ohio
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
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.
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?
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
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. 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. Frances
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.
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/
I'm posting this a second time in hopes of having it post at the bottom where it seems the most current posts are.
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
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.
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.
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
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.
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.....??????
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.
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.
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
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.
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.
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???
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....
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 email@example.com.
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.
i am have the same issue - what happened with yours????
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....
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.
Thank u Patty... ╮(╯_╰)╭
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....
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.
anyone find a lawyer yet to sue these jerks for lying to us just so they make more money off us, has to stop.
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
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.
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?
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
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.
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.