• Patty Patty
    June 28, 2009
    Has anyone had strange/severe side effects from their spinal cord stimulator (scs)? Let me know pls.
    Patty Patty
    June 28, 2009

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

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  • becky July 03, 2009
    becky
    July 03, 2009
    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? READ MORE
    • njm
      njm
      June 11, 2012
      njm
      njm
      June 11, 2012
      Becky, would you send me an update on your post from 2009.  I am considering the stimulator implant. njmcdarmont@cox.net READ MORE
    • Lynette
      August 18, 2012
      Lynette
      August 18, 2012

      Becky,

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

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

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

      Lynette from Ohio

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    • WM
      WM
      November 07, 2012
      WM
      WM
      November 07, 2012
      My husband had a Medtronics stimulator implanted in July 2012 he also is experiencing uncontrollable shaking.  It occurs when the stim is off and can last up to 3 hours then stops as fast as it started.  We were at a PCP visit and they started at her office she immediately sent him to the ER to be checked by a neurologist by the time he came to the room the shaking subsided.  He couldnt find anything wrong with the tests that were ordered we are now seeing specialists at another hospital trying to find out why this is happening.  To date we don't have any answers Medtronic reps state they never heard of such a thing.  The physicians act as though its no big deal but once these attacks happen he says his body is exhausted and sore. Have you had any luck with any answers?   READ MORE
    • Lynette
      November 07, 2012
      Lynette
      November 07, 2012
      No we haven't. He has (since this post) had a CT and an EEG, there is nothing in the CT and we haven't heard the results of the EEG. Seeing a Neurologist in my area is like pulling teeth. They have him on so many drugs that he can't hardly function. Xanax, Klondipin, and the likes. He has had 2 car accidents (actually it was 2 in one day) and no one seems concerned about it at all. Funny Medtronic says they have never heard of this considering there are now two of us posting here huh? Please let me know what the specialist says...and don't hesitate to contact me anytime @ chippewabrat@yahoo.com Good luck!   READ MORE
    • Patty
      November 09, 2012
      Patty
      November 09, 2012
      Sorry to hear this about ur hubby. I am not familiar with this uncontrollable shaking but I do believe you when you say it's related to the spinal cord stim implant(SCS). If this has been goi g on since July and they still can't figure it out, get it removed ASAP before it causes irreversible damage. Obviously his body is rejecting the implant, as mine did too although in a different way. We are all different and that is why we all experience different symptoms when our bodies are fighting and revolting against something unnatural in our system. Unless the implant is truly giving him incredible pain relief, I would get it removed ASAP. Let me know what happens. If you live in south Florida, I can perhaps give you a name of a helpful doc. Good luck and be well. -Patty READ MORE
    • WM
      WM
      November 11, 2012
      WM
      WM
      November 11, 2012

      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.

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    • WM
      WM
      November 11, 2012
      WM
      WM
      November 11, 2012

      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.

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    • Patty
      November 12, 2012
      Patty
      November 12, 2012
      No one doctor ever truly figured out exactly what happened to me, and the pain management docs as well as ANS reps who supplied the SCS implant all said that Issa the only one to have all these symptoms, but they did believe I was having them and I forced them to send me around to diff docs to see if they could figure out what was happening to me. I went to infectious disease doc that ran dozens of tests to make sure I didn't have an encapsualted infection from the surgery causing all of this as well as 3 diff rheumatologist and finally the last one diagnosed me with fibromyalgia, arthritis all from what he explains is a triggered response from a trauma....in my case the trauma was the actual SCS implant. But I have other symptoms that docs still don't know why I'm having nor what to do to help me. As far as ur hubby's shaking, I don't know what to say excepT to keep going to diff docs....neurologists, rheumatologists, infectious disease docs, etc....keep going until someone has something to offer b.c. Believe in yourself, your gut, your hubby that this is all from the SCS implant.....and get it removed ASAP. If its not working and causing all these probs from the beginning, don't think it's going to go away, because it's not. Hang in there. Btw, my rheumatologists name is dr. Adam barron in Jupiter, fl. You can look up his info on the web. But I am sure you can find a helpful doc in your neck of the woods...it just takes time to find one who believes you and will try different things to help. READ MORE
    • Worried Relative
      November 22, 2012
      Worried Relative
      November 22, 2012

      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?

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    • Patty
      March 19, 2013
      Patty
      March 19, 2013
      ******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm READ MORE
    • Patty
      March 19, 2013
      Patty
      March 19, 2013
      ******Attention******Very Important Info for SCS Sufferers!!!***** First, I am a SCS patient, like you, who has many various horrid side effects from the SCS. I am NOT a lawyer, rep, nor making any money by requesting SCS patients like yourself to report your side effects to the FDA. Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is listed below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years, (just read my posts on this message board) http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm READ MORE
    • Bonnie
      March 22, 2013
      Bonnie
      March 22, 2013

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

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    • Julie
      June 21, 2013
      Julie
      June 21, 2013
      Patty.... I live in south Florida also and I am wondering if you can refer me to some good pain management drs. I am on the trial CSS now and I HATE it! I am miserable and am DEFINATELY getting it removed ASAP and I am now considering the morphine pump instead. Please email me at julielovesreptiles@gmail.com because I do check my email everyday and I most likely will not be able to read responses on this site as fast as I can thru email. If anyone else on this blog knows of pain management doctors, orthopedic drs, or anyone in Florida who can help me, please feel free to email me at.... Julielovesreptiles@gmail.com as well. Julie READ MORE
    • Patty
      June 24, 2013
      Patty
      June 24, 2013
      Hi Julie I can only recommend what I know and that's Jupiter Pain Management in Jupiter, FL. They're located inside the Jupiter hospital and have excellent docs and nurses. Definitely get rid of that darn SCS quickly if its not working for you, and if I were you, talk/ chat to a lot of people with the morphine pain pump b/c that's not an easy road either, from my friend's experience. Unfortunately, there are not a lot of ideal long term chronic pain solutions out there. I wish I had more info for you..... Best of luck to you!!!! -Patty READ MORE
    • Kelly Clark
      June 10, 2014
      Kelly Clark
      June 10, 2014

      Hi,

       

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


      Thanks!
      Kelly  

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    • Pskomp64
      May 29, 2015
      Pskomp64
      May 29, 2015
      I too have extremely bad cramps in my leg and foot ( left only) and never did before. I've had my stimulator for 2 1/2 years and the cramps just started about 3 months ago. I am also now experienced Unbearable left hip pain, a very bad burning sensation. The only way to make it feel better is to lay on my left side with an ice pack on it. My stimulator is implemented on my left upper buttocks and I'm kinda thin so you can see it very well. READ MORE
    • fourcrazyboysa
      July 16, 2015
      fourcrazyboysa
      July 16, 2015
      I just had a stimulator implanted may 15th of this year and it's been an incredible relief, but I have began to get terrible cramps from my buttocks down my legs as well! The cramps are very uncomfortable and at times painful and the episodes last quite s long time sometimes. The pain from the cramps are in no way comparable to the excruciating pain I had prior to getting the stimulator though! These cramps do have me a little freightened though which is how I ended up on this forum! Good luck to all of you and hoping everybody finds their answer! READ MORE
    • lynnlynn068
      December 06, 2015
      lynnlynn068
      December 06, 2015
      Yes,I have severe spasms as well,arms legs arches of feet ect.... READ MORE
    • bgagnon910
      January 18, 2016
      bgagnon910
      January 18, 2016
      i to had one implanted on the 9th... then removed on the 10th.. never should have done this, the doctor never explained the complications. he said sign here,here,here,and here.. and then said (before removing it. ( you know this is a 70k piece of equipment right !!!! and now i have 5x more pain ,cramps, and headaches than before !!!!! the unit was faulty.. i could not get it to turn off. every 2 minutes the pain would start out mild and reach sharp ungodly pain... now the doc ignores me when i tell him all my symptoms !! READ MORE
    • NeuroStim Scared
      March 14, 2016
      NeuroStim Scared
      March 14, 2016
      I found your website tonight, as I am beginning to get nervous about the physc exam before the implant. My pain dr said that by way of one or another implant he will have me off my oral meds by next Jan. So I am being forced to have either a neuro stim or morphine pump. I have had very bad luck in past with Drs "miracle cures" i.e: pelvic mesh. If I refuse the devices I will be terminated as a patient which means I will not be able to get into another pain dr ever. I don't want to be on pain meds forever, but the pain is unbearable. (Abusive ex hit me with a car while pregnant) my question is: how can a dr force you to have one of these devices (no option for changing Drs, very ). I've had way too bad experiences and have read way too many people having bad response I am scared. Any suggestions? Please help! READ MORE
    • penny
      March 15, 2016
      penny
      March 15, 2016
      It's not only you Becky,iv'e had my neurostimulator for 4 years now,,my right butt cheek gets spasamed all the time and that's where my machine is located right above my right butt cheek i also get spasmend in both my feet and my toes..tinkling down to my feet..i feel this is not working worth a damn..i have gone so many times to have it reprogramed for 4 years now and nothing seems to get better only worse..having mine removed READ MORE
    • Diver 1
      April 15, 2016
      Diver 1
      April 15, 2016
      I have had my Medtronic SCS for 2 1/2 years and had mine reprogrammed more times than I can count. Also as many of you have stated I've been told the same thing at every visit that everything is working fine and the Medtronic reps as well as my surgeon cannot explain why I'm having such horrible pain from just above my stimulator all through my right buttocks and all the way down my right leg. I have CRPS in my left leg with my leads running up to my # 10 lumber. This past weekend I had been in my car for maybe 10 mins with my stimulator off of course and after arriving home I turned it back on and received an error code telling me to contact my physician immediately. I called and reported this to my doctor's answering service and NEVER GOT A RETURN CALL. I also text my Medtronic reps and was told not to worry that they would see me at my next appointment. I called my surgeons office again on Monday and assumed I would be told to come in immediately but actually was told my regular appointment for this month would have to be a day later because my doctor was going to be out of office ? I went in on Thursday and didn't even see my doctor just the PA and Medtronic rep who told me I must have pushed 2 buttons at the same time to get this code and let him know if it happened again. My pain meds were doubled and I was prescribed a lidocaine patch and given a prescription to follow up with a urologist. If anyone can offer any advice or information please contact me at divedeeper@live.com. I'm scared to death and don't know what to do. READ MORE
  • randy100 July 02, 2009
    randy100
    July 02, 2009
    While I have not personally used a spinal cord stimulator myself, I have done quite a bit of research on them and have read journal articles as well as what the manufacturer and governmental agencies state about them.   My pain managment specialist suggested to me that it "might" be helpful for me however he did say "I have to tell you they do have risks involved with them and you need to know that".    After doing all of my research, I made the decision that it was too risky for me at this time though I always keep an open mind, things do change as does technology.    I felt that the manufacturer did an excellent job in telling all about the possible benefits as well as the risks involved in using spinal cord stimulation and based on that, I made my decison of "not right now".   From what others have written in answer to this question today it seems as though some like them and find them helpful, others don't like them and don't find them helpful and others are in the middle.    I think if you weigh everything and know all of the facts and information then you can make an informed decision along with your pain management specialist based on that.   With intractable pain (chronic pain) I think that if you can get 70% success in keeping your pain down and under control, you are doing good.   Good luck to you and I hope this was somewhat helpful in answering your question.   Randy. READ MORE
    • amanda
      July 18, 2009
      amanda
      July 18, 2009

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

       

      Amanda

       

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    • randy100
      July 18, 2009
      randy100
      July 18, 2009

      Amanda,

       

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

       

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

       

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

       

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

       

      Randy.

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    • Nicoletti
      September 04, 2009
      Nicoletti
      September 04, 2009
      I too  have had problems with my unit. I don't get nearly the coverage I used to. I have had it adjusted so many times. I had a recent hip replacement surgery last Dec. I have had it adjusted several times,and my pain doc just says hang in there , it will get better.I can barely have it on or too long ,and my neuropathic pain became much worse in the extremeties. Doc says to leave it ,in case of some breakthrough pain that appears.Thank you for your input! Nicoletti. READ MORE
    • Patty
      March 11, 2011
      Patty
      March 11, 2011
      hi sorry about ur husband. i hope he is doing better and that he got the scs removed before any more harm was done. thanks for your post regarding the spinal cord stimulator from awhile ago.  i just got it.....go figure. anyway, i would be interested in emailing u more and find out more about ur situation and u can learn more about mine. sounds like we both got a raw deal when it came to this scs. if u get this and are interested, respond back to me here, and then i will give u my email ok. i hope u are doing well or at least better than me. =) -patty READ MORE
    • ginniG
      March 09, 2012
      ginniG
      March 09, 2012

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

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    • Patty
      March 19, 2013
      Patty
      March 19, 2013
      ******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm READ MORE
    • Dawn G
      March 26, 2013
      Dawn G
      March 26, 2013
      Thanks for your post Patty.........my report has been completed and is now online in the FDA MedWatch data base and is being investigated. Have you filed? I have found others on WedMD I am working with to report..........Dawn G READ MORE
    • Bonnie
      April 08, 2013
      Bonnie
      April 08, 2013

      Hi Dawn,

       

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

       

      Bonnie

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    • Dawn G
      April 08, 2013
      Dawn G
      April 08, 2013
      Hi Bonnie........I am so glad you filed a report. The devastating consequences of the SCS must be made know to the FDA so the medical community will pay attention and not push us aside. You will be notified by mail in about a month. You will be given an access number so you can go online to the MedWatch site and see the report......the letter will give detailed information for email contacts, if you have any questions. I sent an email because I had a question and a real person actually called me back with details. thanks Bonnie and all of the rest of you that a suffering that have filed. And anyone out there with problems caused by the SCS, please file a report with MedWatch on the FDA web site. I am so so sorry about your husbands death. I don't know the details, but I do know that some people have such serious and even deadly or life altering consequences. Go ahead Bonnie and tell us your story. NeuroTalk and WebMD have people there also going through what we are going through. Those web sites are easier to navigate and the posts show up as last written first. tose 2 sites have some great people that have been dealing with SCS issues for years and are online daily. Great support. DAWN READ MORE
    • Dawn G
      April 08, 2013
      Dawn G
      April 08, 2013
      Hi Bonnie........I am so glad you filed a report. The devastating consequences of the SCS must be made know to the FDA so the medical community will pay attention and not push us aside. You will be notified by mail in about a month. You will be given an access number so you can go online to the MedWatch site and see the report......the letter will give detailed information for email contacts, if you have any questions. I sent an email because I had a question and a real person actually called me back with details. thanks Bonnie and all of the rest of you that a suffering that have filed. And anyone out there with problems caused by the SCS, please file a report with MedWatch on the FDA web site. I am so so sorry about your husbands death. I read the story you posted, and there doesn't seem to be any doubt that the scs was the root cause of your husbands downward spiral. I would definitely file a lawsuit. Just pass the word alone to those that have issues to file. Patty is great on this web site. NeuroTalk and WebMD have people there also going through what we are going through. Those web sites are easier to navigate and the posts show up as last written first. Those 2 sites have some great people like Patty that have been dealing with SCS issues for years and are online daily. Great support. DAWN READ MORE
    • alarmro
      June 21, 2013
      alarmro
      June 21, 2013

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

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    • Patty
      June 24, 2013
      Patty
      June 24, 2013
      I am soooooooo sorry to hear about your pain and suffering from this SCS. If things don't improve soon, listen to what your gut is telling you, and get it taken out. Hopefully, it will solve these issues you are having, but not your pain. For that, all I can say is keep taking it one day at a time, keep trying new things, but do some research before jumping into surgery.....nothing is as wonderful and miraculous as they say it is. Then when the SCS doesn't work, they all want say they don't know what's going on and no one else other than you has ever ever had any problems with it before. Well, don't believe it..... Have you ever tried water therapy in a heated pool, and when I mean heated I mean around 85-88 degrees? It does a world of good, even if it keeps the pain away for a few hours. Hang in there. Keep us posted. Be well. READ MORE
    • Dawn G
      August 23, 2013
      Dawn G
      August 23, 2013
      LAW FIRMS TAKING ACTION........for all of us that have been suffering from the life altering adverse effects of the SCS. After months of giving up on finding a law firm, I believe we must have done a good job filling Adverse Events with the FDA. I googled SCS law suits. The page opens with two firms. The first is Meyerson Law Firm, which I have filled out the necessary info and the other was a Texas Firm. Get going people, FINALLY, we may get some compensation. Fellow SCS Sufferer.........Dawn READ MORE
    • kimme
      October 16, 2013
      kimme
      October 16, 2013
      Ihave problems with the stimulator as well, I was shocked by the unit and I now have very little use of the left side of my body. I was not told that this could happen. Had I known i wouldn't have had it put in.  Has anyone else had this problem. I also have 2 leads in my back and I am not sure if this is the problem. I cannot turn it on because I am terrified of it happening again.  READ MORE
    • jayne isaacs
      December 06, 2013
      jayne isaacs
      December 06, 2013

      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

      READ MORE
    • Heidi
      December 12, 2013
      Heidi
      December 12, 2013

      Dawn,

       

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

      READ MORE
    • jonmur60
      December 18, 2013
      jonmur60
      December 18, 2013
      Hi Dawn , My name is John Murray and I had the SCS inplant in 2010, I reside in a Skilled Nursing Facility and recently, for some reason , my inplant which is in the left hip area has began hurting very bad, scaling 1-10, I would put it at an 8-9 sitting still and 10 trying to stand or walk. I have told the staff here and they made me an appointment with the pain Dr. next week, but this doesn't releive me right now and it looks like I get to endure this for at least another week before anything will be done. It's crazy!  I'm in horrible pain and just being ignored. I don't know what to do, but I can say I would rather just be dead than continue this torture. I have no idea what's going on, or why this battery has began this. It may have just shifted into some nerves or it may be leaking. All I know is I want the pain to stop and this Nusing Home is not doing anything at all to help. READ MORE
    • Marry
      January 07, 2014
      Marry
      January 07, 2014
      I have had a lot of problems after the placement of the Nevro stimulator. After 10 days I got dizzy spells, headaches and the worst squeaky ears After half a year to be misunderstood by the starting and I let him remove representativeI know now 7 persons with grievous complaints also ears neck and head pain and shock in the back.Along with a neurobiologist, I am trying to figure out if the high frequency is the cause, it seems to me no coincidenc november, I let him delete, have no more neck and head pain but rather the sound in me head and ears terriblWhat is so did not know and not told is that he is relatively new and has not been approved in Americpeople recognize my story I never say!! do it has destroyed me lifBut I fight there for to find out the trutIs there anyone who also has experience with the Nevro?Gr READ MORE
    • Marry
      January 07, 2014
      Marry
      January 07, 2014

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

      READ MORE
    • Peanut
      January 13, 2014
      Peanut
      January 13, 2014

      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..

      READ MORE
    • Patty
      January 13, 2014
      Patty
      January 13, 2014
      Exactly Where was it implanted in your spine? Do not let them tell you that it cannot be removed or that it is too difficult to remove...that's b.s. If its been over a year and you are worse off than before, than get it out. (Same happened to me). If your original doc refuses to remove it, keep looking for one that will, or also contact the representative from the stimulator company (and, medtronics, etc...) and ask them who else locally they can remove it. Sorry n good luck. READ MORE
    • di
      di
      February 04, 2014
      di
      di
      February 04, 2014

      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.

      READ MORE
    • Trina
      February 05, 2014
      Trina
      February 05, 2014
      Praying for you and your dad IN JESUS NAME  I ask that healing come. Pain go now.      READ MORE
    • stevensback
      March 15, 2014
      stevensback
      March 15, 2014

      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:)

      READ MORE
    • stevensback
      March 15, 2014
      stevensback
      March 15, 2014
      If it were only that simple. READ MORE
    • Shado
      April 30, 2014
      Shado
      April 30, 2014
      Sorry to here about all the problems with the SCS.  I have had an implant since 2000, but not the same one.  The first lasted 3 years, the second 1 year, the third 6 months, the fourth 5 years, and the fifth is getting replaced May 9th.  The only complications I have had have been with the leads failing.  The fourth implant, they used the paddle lead because "they last forever, never need to replaced, and provide excellent coverage."  Well, the leads went bad!  Then I found out the hazards involved in removal of the paddle leads.  Hazards that were never told to me, even when asked over and over.  Now, the leads have to be removed because of the problems, complications, and pain they are creating in my back, legs, etc.  BEWARE OF THE PADDLE LEADS!!!!   READ MORE
    • Barb
      May 01, 2014
      Barb
      May 01, 2014

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

      B

       

      READ MORE
    • Iamatwittsend
      May 03, 2014
      Iamatwittsend
      May 03, 2014
      Can you give me the law firms  that you have used. I just received my 3rd attorneys refusal to take the case.   HELP please     READ MORE
    • Dawn G
      May 03, 2014
      Dawn G
      May 03, 2014
      I spoke with 2 attorneys, both refused the case. They said we need a law firm that will file a class action suit. But to do that, more people need to speak out. ...............the first step is filing an Adverse Event for a medical device with the FDA. The FDA MUST know first.......... See my previous posts on filing, it is easy and so very important. Without the FDA being made aware of all the problems, no lawyers will take on a suit. Dawn READ MORE
    • steph
      May 26, 2014
      steph
      May 26, 2014

      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? ?

      READ MORE
    • steph
      May 26, 2014
      steph
      May 26, 2014

      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. 

      READ MORE
    • Terri M
      June 16, 2014
      Terri M
      June 16, 2014

      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!!! :(

      READ MORE
    • jwing
      November 08, 2014
      jwing
      November 08, 2014

      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.   

      READ MORE
    • kellieoswalt82
      May 16, 2015
      kellieoswalt82
      May 16, 2015
      Hello, I just had a Spinal Stimulator Trial done on April 3rd it was removed on the 7th. Since then I've had what I can only decibe as charlie horses that start in my buttock and radiate all the way down my right leg I'm having 20-25 a day on a pain scale they hit over a 10. I can't imagine living with the rest of my life on top of all my other problems. They have ran test to find out what causing them but there only one answer . I'm in so much pain already this is unbearable. Does anyone know if this company has been sued? Thanks READ MORE
    • 6bucks
      October 13, 2015
      6bucks
      October 13, 2015
      I had the trial a little over a month ago and after two days of procedure pain i woke up the 3rd without hardly any lower back pain. So September 30th I had the implant surgery done. Two days later I got what felt like a charlie horse in my right calve and everytime i lay down my right foot goes numb. So yesterday i went to my regular doctor and they freaked my wife and I out saying I had classic symptoms of DVT, deep vein thrombosis and said I should go to ER immediately. Fortunately they were able to get me in to the radiology center down the street to do an ultrasound. Absolutely fine. The tech said there was no blood clot or even vericous veins and she could see nothing that could be causing it. So now I'm scheduled for a CT scan on both legs and some bloodwork tomorrow. Meanwhile I haven't slept a full night in over a week and still can't lay down for over 5 minutes without my right foot going numb. READ MORE
    • Lbentley
      October 17, 2015
      Lbentley
      October 17, 2015
      I have had my Nevro SCS for 5 years now. The first 3 years I saw an improvement. Now. My coverage is almost nil and I do rely on pain meds to get through the day. 3 days ago we noticed like a pimple in the lumbar region. Thinking that was it. I rubbed it and blood poured out. Now I have some hard and thin sticking out of it. I'm afraid to charge thinking a wire came lose from the battery. Have an appt. tomorrow but scared of outcome. I'm allergic to morphine and codeine so not a lot he can change me to and I know he wants me off the meds I rely on. If he takes me off I might as well suck it up with nothing. It takes both to manage my pain, my body READ MORE
  • Maureen July 02, 2009
    Maureen
    July 02, 2009
    I have had my SCS for 4 years nowsand I love it.  I have CRPS in my right hand, wrist and arm.  The SCS is absolutely wonderful, it has worked miracles for my chronic pain. The lead is in my upper back, it did move once and had to be replaced, but that is it for concerns.  Good luck to you. READ MORE
    • Bill Robertson
      May 31, 2015
      Bill Robertson
      May 31, 2015
      I had a Medtronic Neuorstimulator for lower Back Problem, initially my problem was in my left hip and upper left quad muscle, but after having it in for about 6 Months the pair started to radiate down my left leg from my knee (I must add instead of just putting one lead for my left leg they decided to do both legs) anyway the problem soon became to severe the the sensation I was having in my feet was like walking on gravel in my bare feet and thousands of pins and needles from my knees down. After much complaining about my problem they decided to do another MRI and discovered that I had more problems in my upper lumbar spine. (this MRI was done after taking the leads from my spine but they left the Battery pack in my abdomen, they thinking they were going to try again. I finally convinced the Dr to remove they Battery Pack and my symptom started to improve somewhat. But the problem I'm having now is I have very startling Dreams that wake me up and cause be a lot of stress. I have since read on the Mayo Clinic Site that because of the Trauma from the Stimulator they suspect that I could Have PTSD, I would appreciate any feed back from anyone that has had any of the same symptoms. Thanks Bill READ MORE
  • amanda July 18, 2009
    amanda
    July 18, 2009

    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 !!! 

    READ MORE
    • Carol
      November 08, 2009
      Carol
      November 08, 2009

      Hi -

       

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

      READ MORE
    • Patty
      March 11, 2011
      Patty
      March 11, 2011

      hi

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

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

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

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

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

      -patty

      READ MORE
    • mamboleo
      December 16, 2015
      mamboleo
      December 16, 2015
      I had my scs implanted in June 2015 and right away had problems of inflammation and infection, pain at the sight of the implant. Five months later the implant slowly popped out!! READ MORE
  • big H May 11, 2014
    big H
    May 11, 2014
    Hi there, I have a Nevro stimulator installed, I am very happy, it was the best thing the doctors did for me, the team who installed it were very professional, and the after care is perfect, I am sorry there are people suffering out there but I would be confident in saying there would be a lot more success story's out there. I unit has been installed for over a year now, and it is the high frequency type so I feel nothing at all and it runs 24/7, the only time I notice it is when I forget to charge it and the pain creeps in and reminds me real quick. Highly recommended it's changed my life for the better. I don't want to disrespect people and all the horror story's but the is always the other side of the fence to consider it could change your life for the better too. All the best READ MORE
  • becky July 03, 2009
    becky
    July 03, 2009

    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?

    READ MORE
  • 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.

    READ MORE
    • Patty
      March 11, 2011
      Patty
      March 11, 2011

      hi

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

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

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

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

      -patty

      READ MORE
    • roxie
      November 12, 2012
      roxie
      November 12, 2012

      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

      READ MORE
    • Patty
      November 12, 2012
      Patty
      November 12, 2012
      Yes, I agree with you 100%. Whatever happened to the doctor's Hippocratic oath....above all, do no harm!!! READ MORE
    • zyna
      November 16, 2012
      zyna
      November 16, 2012

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

      READ MORE
    • Patty
      November 19, 2012
      Patty
      November 19, 2012
      Hi Roxie! Just wanted to say hi, check up on you and see how your SCS removal went. I hope it went smoothly and that your are starting to feel better each and every day. KIT, Patty READ MORE
    • Still hurt'n
      November 27, 2012
      Still hurt'n
      November 27, 2012

      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.

      READ MORE
    • Dawn G
      January 03, 2013
      Dawn G
      January 03, 2013
      Dear Still Hurt'n............you have one of the more recent posts I have found. This web site is crazy, it places old and new threads together. Anyway, I was wondering if you had your SCS removed? I certainly hope so. I had the severe muscle spasms, encompassing the whole chest, down the buttocks to the legs. Some times they are exactly like shaking shills, and SO painful. Getting into a hot bath will really help. My other symptoms are complex and a combination of what all the others have stated they have. The trial stimulation made me very nauseous also. Thus I always had it on low. But the permanent actually caused vomiting immediately post op. I also have an electrical feeling that runs across my skin, feels like bugs crawling on me. Plus a temperature intolerance. And my feet feel like I am walking on glass or they are being smacked with a paddle. The pre-op neuropathic pain is worse now than before the implant. Now I have fibromyalgia. Many have developed that also. My trial was fabulous, so what happened???? None of the docs know. Needless to say, all that have had any of the serious problems, that have had the SCS removed, are still dealing with those issues. It seems there is some type of damage done that will be worse and more likely to remain , the longer it is implanted and may be irreversible. The sooner it is removed the better. Let me know how you are, and any one else out there. Learning from each other will only help when we are speaking with our docs, because we know we are not only in this fight. Dawn READ MORE
    • denkat
      January 10, 2013
      denkat
      January 10, 2013

      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!!!!!

      READ MORE
    • denkat
      January 11, 2013
      denkat
      January 11, 2013

      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!!!!!

      READ MORE
    • mary
      January 12, 2013
      mary
      January 12, 2013

      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... 

      READ MORE
    • verysick
      January 22, 2013
      verysick
      January 22, 2013

      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. 

       

      READ MORE
    • mary
      January 23, 2013
      mary
      January 23, 2013

      very sick

       

      Im so sorry  I do know what your going thru.

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

      he is with florida othopedic. 

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

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

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

      talk my email is marynfloyd@aol.com

       

      READ MORE
    • Aderouen
      February 18, 2013
      Aderouen
      February 18, 2013

      Patty,

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

      READ MORE
    • Patty
      February 18, 2013
      Patty
      February 18, 2013
      Hi Thanks for writing....you can read anyone of my many posts on this site, and unfortunately due to the horrible experience I have had, along with countless others, I can no way in good faith, endorse or recommend the spinal cord stimulator to anyone. There are simply too many problems with it, so many known and unknown devasting side effects that make your health even worse. I know it's hard when u feel like u don't have an other choice in the world to help alleviate the pain, but this stimulator is not the answer. Good luck to you. Lt me know if u find another viable option. Patty READ MORE
    • Patty
      February 18, 2013
      Patty
      February 18, 2013
      Hi Thanks for writing....you can read anyone of my many posts on this site, and unfortunately due to the horrible experience I have had, along with countless others, I can no way in good faith, endorse or recommend the spinal cord stimulator to anyone. There are simply too many problems with it, so many known and unknown devasting side effects that make your health even worse. I know it's hard when u feel like u don't have an other choice in the world to help alleviate the pain, but this stimulator is not the answer. Good luck to you. Lt me know if u find another viable option. Patty READ MORE
    • Patty
      February 18, 2013
      Patty
      February 18, 2013
      Hi Thanks for writing....you can read anyone of my many posts on this site, and unfortunately due to the horrible experience I have had, along with countless others, I can no way in good faith, endorse or recommend the spinal cord stimulator to anyone. There are simply too many problems with it, so many known and unknown devasting side effects that make your health even worse. I know it's hard when u feel like u don't have an other choice in the world to help alleviate the pain, but this stimulator is not the answer. Good luck to you. Lt me know if u find another viable option. Patty READ MORE
    • Patty
      February 18, 2013
      Patty
      February 18, 2013
      Hi Thanks for writing....you can read anyone of my many posts on this site, and unfortunately due to the horrible experience I have had, along with countless others, I can no way in good faith, endorse or recommend the spinal cord stimulator to anyone. There are simply too many problems with it, so many known and unknown devasting side effects that make your health even worse. I know it's hard when u feel like u don't have an other choice in the world to help alleviate the pain, but this stimulator is not the answer. Good luck to you. Lt me know if u find another viable option. Patty READ MORE
    • Marc Jean
      February 19, 2013
      Marc Jean
      February 19, 2013

       

      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.

       

      READ MORE
    • Patty
      February 20, 2013
      Patty
      February 20, 2013
      Hi Mark Jean. I am soooo very sorry to hear your nightmares and pain with the SCS, too. I hate that more people have to undergo such a dangerous procedure which winds up crippling more people than it helps. I am glad that you feel safe enough here on this forum to speak your truth and story about your situation with the SCS and hope you can relay any and all info and experiences you have had with us and others, too. If I can save just one person from going thru this SCS procedure, I would be thrilled. I hate hearing of more people with more problems than they already started with. Please feel free to continue sharing your issues here with me anytime. Thanks so much and good luck! Hang in there as tomorrow is a new day filled with possibilities. -Patty READ MORE
    • Dawn G
      February 20, 2013
      Dawn G
      February 20, 2013
      Patty.........I am not sure if I wrote you before about the FDA. I sent a report of an Adverse Event on the SCS to the FDA.......have you thought of doing this? Today I saw my physiatrist who told me he has seen so many patients suffering from the stimulators. ...........still Suffering........Dawn READ MORE
    • roxie
      February 21, 2013
      roxie
      February 21, 2013
      Hi, I had my stimulator removed for the same reason, I have auto immune, following in plant, I had mine in two years, it did help my leg pain but after a car accident stop working, I had it removed in November hoping the joint swelling would go away, it did not, I also have muscle jerks all day long, that did not change yet, I have failed laminectomy syndrome , my whole back goes into spams when I lay down for more then two hours, I have to sleep sitting up, my surgeon said it was from scar tissue, no one told me that could happen, I wish everyone good luck, this does not happen to everyone , but this did happen to me. Roxie READ MORE
    • roxie
      February 21, 2013
      roxie
      February 21, 2013
      Hi, I had my stimulator removed for the same reason, I have auto immune, following in plant, I had mine in two years, it did help my leg pain but after a car accident stop working, I had it removed in November hoping the joint swelling would go away, it did not, I also have muscle jerks all day long, that did not change yet, I have failed laminectomy syndrome , my whole back goes into spams when I lay down for more then two hours, I have to sleep sitting up, my surgeon said it was from scar tissue, no one told me that could happen, I wish everyone good luck, this does not happen to everyone , but this did happen to me. Roxie READ MORE
    • Patty
      February 22, 2013
      Patty
      February 22, 2013
      Dawn, Thanks for the info....how do I go about writing a report to FDA regarding adverse reactions to SCS? If there's a web link u can share, I'd appreciate it as I am sure many others would too. Thanks a lot. I at least we can make the FDA of the severe problems with this machine and get it taken off the market so others don't have to suffer, that would be a start. Thanks Patty READ MORE
    • Patty
      February 22, 2013
      Patty
      February 22, 2013
      Dawn, Thanks for the info....how do I go about writing a report to FDA regarding adverse reactions to SCS? If there's a web link u can share, I'd appreciate it as I am sure many others would too. Thanks a lot. I at least we can make the FDA of the severe problems with this machine and get it taken off the market so others don't have to suffer, that would be a start. Thanks Patty READ MORE
    • Patty
      February 22, 2013
      Patty
      February 22, 2013
      Hi Roxie! I was waiting to hear from you to see how you are doing post SCS removal. I am sorry to hear things still aren't better. It was the same with me.....all the side effects did not go away once the stim was removed, as it unfortunately triggered an auto immune type response in my body. So regardless if the stim was kept in or not, my side effects/problems would continue. I will say that after 7 yrs of having the SCS removed, a couple side effects have gotten a bit better....either that or I'm just used to it and just tolerate it more. Either way, in my case, the SCS had to come out, and I regret the day my doc even suggested this darn device in the first place. Good luck to u Roxie and keep me posted on how u r doing from time to time. Hang in there....u r not alone. Patty READ MORE
    • Dawn G
      February 22, 2013
      Dawn G
      February 22, 2013

      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.

      READ MORE
    • Dawn G
      February 22, 2013
      Dawn G
      February 22, 2013

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

        dawngriswold@snet.net

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

      READ MORE
    • Dawn G
      February 22, 2013
      Dawn G
      February 22, 2013

      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 !!!!!!!

      READ MORE
    • Patty
      February 23, 2013
      Patty
      February 23, 2013
      Thanx Dawn!, I will definitely do this. Patty READ MORE
    • Dawn G
      February 23, 2013
      Dawn G
      February 23, 2013
      Patty.......what a coincidence,.......today in the mail I received a letter from the FDA... They ARE investigating and gave me an access number to follow the case online. ...........Get the word out, you are very good with connections here. I don't know if you visit other web sites, but my report is going forward!!!!!!!!! DAWN READ MORE
    • Patty
      February 24, 2013
      Patty
      February 24, 2013
      Dawn, Awesome.....i will file with the fda next week after my family from overseas returns home. All I was ever told by my lawyers was that a class action had to be active, but they never told be how to get one started or how to go about any of it. I will pass along to anybody here who emails me to do this too.....and you can do the same too. Just place a few additional posts with all the info and web link/site so that others may begin their own complaint process thru FDA. I truly appreciate this info. Keep me updated and be well! -Patty READ MORE
    • Dawn G
      February 25, 2013
      Dawn G
      February 25, 2013
      Patty, I started a new post with the information. I am unable to post the link. For all my fellow Spinal Cord stimulator sufferers............Reporting an Adverse Event with the FDA, is the first step in getting an investigation going. ....we are suffering because of the SCS, the doctors do not know why and can not help us.....for some it has been a life saver, but for many it has caused great injury..........leaving us with unbearable pain, and debilitating symptoms, a life of misery. If people start reporting what has happened to them to the FDA the lawyers will get involved and possibly start a class action law suit..........the medical community and the highly paid manufacturers will have to research why the SCS can cause such damage and how to avoid it and help to correct the damage. Google FDA MedWatch Form 3500. The first link on the page should take you directly to the reporting page. It is a voluntary form.... Lets start helping ourselves........we have suffered enough....... DAWN READ MORE
    • Patty
      March 19, 2013
      Patty
      March 19, 2013
      ******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! Patty, former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm READ MORE
    • Patty
      March 19, 2013
      Patty
      March 19, 2013
      ******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! Patty, former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm READ MORE
    • Patty
      March 19, 2013
      Patty
      March 19, 2013
      ******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! Patty, former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm READ MORE
    • Patty
      March 19, 2013
      Patty
      March 19, 2013
      ******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! Patty, former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm READ MORE
    • Patty
      March 19, 2013
      Patty
      March 19, 2013
      ******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm READ MORE
    • Patty
      March 19, 2013
      Patty
      March 19, 2013
      ******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm READ MORE
    • Patty
      March 19, 2013
      Patty
      March 19, 2013
      ******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm READ MORE
    • Patty
      March 19, 2013
      Patty
      March 19, 2013
      ******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm READ MORE
    • Bonnie
      March 22, 2013
      Bonnie
      March 22, 2013

      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

      READ MORE
    • jccrosses
      April 08, 2013
      jccrosses
      April 08, 2013

      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.

       

       

       

       

      READ MORE
    • Bonnie
      April 08, 2013
      Bonnie
      April 08, 2013

      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.

      READ MORE
    • jayne isaacs
      December 06, 2013
      jayne isaacs
      December 06, 2013

      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!

      READ MORE
    • Trina
      February 05, 2014
      Trina
      February 05, 2014

      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 

       

      READ MORE
    • jeff
      May 05, 2014
      jeff
      May 05, 2014

      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

      READ MORE
    • Darrell
      October 13, 2014
      Darrell
      October 13, 2014

      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.

      READ MORE
  • Nicoletti June 29, 2009
    Nicoletti
    June 29, 2009

    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.

    READ MORE
    • cklip76
      January 03, 2012
      cklip76
      January 03, 2012

      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!

      READ MORE
  • Marilyn October 15, 2013
    Marilyn
    October 15, 2013

    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.

    READ MORE
  • LaughSing July 02, 2009
    LaughSing
    July 02, 2009

    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. :(

    READ MORE
  • becky July 04, 2009
    becky
    July 04, 2009

    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!

    READ MORE
  • becky July 03, 2009
    becky
    July 03, 2009

    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!

    READ MORE
  • janet March 21, 2013
    janet
    March 21, 2013

    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.

    READ MORE
    • Patty
      March 22, 2013
      Patty
      March 22, 2013
      Hi Janet! I am so very sorry about your problems with the SCS and all that it has taken away from you. I appreciate you sharing your story here and also filling out the FDA form,too. The more of us who speak up and share, the better. Again, I'm very sorry about all your pain....hang in there, that's all we can do. Patty READ MORE
    • janet
      March 23, 2013
      janet
      March 23, 2013

      Hi Patty,

      Thank you so much.  Janet

      READ MORE
    • Bonnie
      March 26, 2013
      Bonnie
      March 26, 2013

      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.

      READ MORE
    • Bonnie
      April 29, 2013
      Bonnie
      April 29, 2013

      Hi Patty,

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

      READ MORE
    • Bonnie
      April 29, 2013
      Bonnie
      April 29, 2013

      Hi Janet,

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

       

       

      READ MORE
    • Patty
      April 30, 2013
      Patty
      April 30, 2013
      Bonnie, Thank you for your posts and the info regarding the law firm interested in SCS patients. As soon as I have a moment, I too will look into it and let u know what I find out. Again, thanks so much for any and all info you find and for sharing it with the rest of us. Take care and be well. Patty READ MORE
    • Dawn G
      June 08, 2013
      Dawn G
      June 08, 2013
      Hi Patty and all my fellow SCS sufferers. I have been off the site for a while...... I have reached out to a law firm here in Ct and they read my synapsis about my SCS story. They DO want to speak with me. Unfortunately I was not home FRiday and did not receive the message until late. I will be speaking with the law firm rep on Monday. Hopefully this WILL be a start.......... I see the info here on the Meyerson law firm. Has anyone actually spoken with them yet???????. I have been back to work on an as needed basis, because that is all I can do. Working is so very painful and takes all my energy. I have not been able to see another neuro surgeon. None of them will see me because they did not do the surgery, same with an anesthesiologist. So the only doctor I have now is my rehab doc. And he says I must be healed by now, and that my muscle spasms and the other problems that started are all due to an anxiety problem!!!!!!!!!!! Yet he has never taken care of someone that has such an injury. Unbelievable!!!!!!!, He wants to decrease my meds....................am I not suffering enough......? Hopefully I will be back here with good news from the lawyers.......will keep you informed. Dawn READ MORE
  • Mary October 12, 2010
    Mary
    October 12, 2010

    Patty,

     

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

    READ MORE
    • Patty
      March 11, 2011
      Patty
      March 11, 2011

      hi mary

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

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

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

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

      -patty

      READ MORE
    • Tara
      April 20, 2012
      Tara
      April 20, 2012

      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

      READ MORE
    • Patty
      May 02, 2012
      Patty
      May 02, 2012
      It has been awhile since my last post. Just to catch you all up, I had ANS SCS implanted back in fall of 2005 but then had to have it removed due to many factors...the stimulator was malfunctioning, shocking the wrong areas like ribs & chest & not my lower back as needed, doctors couldn't get the stimulator to capture the right areas like they did in the 3 day trial, immediately started having side effects from this implantation surgery such as: constant fever & chills, extreme fatigue, joint pain, joint swelling, swelling in hands, feet, head, arms,legs,etc, joint stiffness, joints all over my body that never bothered me before were now acting up, numbness in extremeties from all the swelling, inability to regulate my own temperature (I'm sweating in cool a.c. Indoors and freezing outside in 80 temps), fibromyalgia, inability to concentrate, can't cool my body down like I used to....I stay overheated for no reason, hot flashes, face feels like its on fire, and of course depression from all of these countless lovely side effects I did not have before the spinal cord stim surgery. I wish I never had it done and I do not recommend it on anyone. It has made my situation exponentially worse, and I regret the day I ever did it. I had the SCS removed in spring 2006 after trying many times to get the darn thing to work properly and to give it a chance, but enough torture was enou for me. Out it came, but all my problems still exist to this day, 6 years later. You would think that would be plenty of time for a body to get that junk out of its system and return to normal, but my primary care doc says the SCS triggered a severe inflammatory response in my body and the symptoms may never go away. So thanks to greedy ANS and their malfunctioning SCS, they have left me in more pain and more disabled with less quality of life than before their surgery. I thought docs took vows to do no harm to patients. Be very careful as ANS new about some of these side effects but hid them from me as well as countless other patients just so they could get a pay day. They lied about the side effects I was having, telling me that I was the only one and no one else had ever had problems like me. Unfortunately, I found out all of this after the fact. So, please, please,please let this be a warning to those who are considering a stimulator implanted in your spinal column....don't do it. I wish someone was there for me giving me this info 7 years ago when I was just 31yrs old. I now just celebrated my 38 bday yet I feel like I am 88 from all the problems &side effects from the SCS, and I am not exaggerating!!! Best wishes to you all on your journey to recovery and to a new normal. -Patty READ MORE
    • Patty
      May 02, 2012
      Patty
      May 02, 2012
      All I can tell you is what has happened to me, and then you can make your own decisions from there. I had ANS SCS implanted back in fall of 2005 but then had to have it removed due to many factors...the stimulator was malfunctioning, shocking the wrong areas like ribs & chest & not my lower back as needed, doctors couldn't get the stimulator to capture the right areas like they did in the 3 day trial, immediately started having side effects from this implantation surgery such as: constant fever & chills, extreme fatigue, joint pain, joint swelling, swelling in hands, feet, head, arms,legs,etc, joint stiffness, joints all over my body that never bothered me before were now acting up, numbness in extremeties from all the swelling, inability to regulate my own temperature (I'm sweating in cool a.c. Indoors and freezing outside in 80 temps), fibromyalgia, inability to concentrate, can't cool my body down like I used to....I stay overheated for no reason, hot flashes, face feels like its on fire, and of course depression from all of these countless lovely side effects I did not have before the spinal cord stim surgery. I wish I never had it done and I do not recommend it on anyone. It has made my situation exponentially worse, and I regret the day I ever did it. I had the SCS removed in spring 2006 after trying many times to get the darn thing to work properly and to give it a chance, but enough torture was enou for me. Out it came, but all my problems still exist to this day, 6 years later. You would think that would be plenty of time for a body to get that junk out of its system and return to normal, but my primary care doc says the SCS triggered a severe inflammatory response in my body and the symptoms may never go away. So thanks to greedy ANS and their malfunctioning SCS, they have left me in more pain and more disabled with less quality of life than before their surgery. I thought docs took vows to do no harm to patients. Be very careful as ANS new about some of these side effects but hid them from me as well as countless other patients just so they could get a pay day. They lied about the side effects I was having, telling me that I was the only one and no one else had ever had problems like me. Unfortunately, I found out all of this after the fact. So, please, please,please let this be a warning to those who are considering a stimulator implanted in your spinal column....don't do it. I wish someone was there for me giving me this info 7 years ago when I was just 31yrs old. I now just celebrated my 38 bday yet I feel like I am 88 from all the problems &side effects from the SCS, and I am not exaggerating!!! Best wishes to you on your journey to recovery and to a new normal. Take care!! -Patty READ MORE
    • Patty
      May 02, 2012
      Patty
      May 02, 2012
      All I can tell you is what has happened to me, and then you can make your own decisions from there. I had ANS SCS implanted back in fall of 2005 but then had to have it removed due to many factors...the stimulator was malfunctioning, shocking the wrong areas like ribs & chest & not my lower back as needed, doctors couldn't get the stimulator to capture the right areas like they did in the 3 day trial, immediately started having side effects from this implantation surgery such as: constant fever & chills, extreme fatigue, joint pain, joint swelling, swelling in hands, feet, head, arms,legs,etc, joint stiffness, joints all over my body that never bothered me before were now acting up, numbness in extremeties from all the swelling, inability to regulate my own temperature (I'm sweating in cool a.c. Indoors and freezing outside in 80 temps), fibromyalgia, inability to concentrate, can't cool my body down like I used to....I stay overheated for no reason, hot flashes, face feels like its on fire, and of course depression from all of these countless lovely side effects I did not have before the spinal cord stim surgery. I wish I never had it done and I do not recommend it on anyone. It has made my situation exponentially worse, and I regret the day I ever did it. I had the SCS removed in spring 2006 after trying many times to get the darn thing to work properly and to give it a chance, but enough torture was enou for me. Out it came, but all my problems still exist to this day, 6 years later. You would think that would be plenty of time for a body to get that junk out of its system and return to normal, but my primary care doc says the SCS triggered a severe inflammatory response in my body and the symptoms may never go away. So thanks to greedy ANS and their malfunctioning SCS, they have left me in more pain and more disabled with less quality of life than before their surgery. I thought docs took vows to do no harm to patients. Be very careful as ANS new about some of these side effects but hid them from me as well as countless other patients just so they could get a pay day. They lied about the side effects I was having, telling me that I was the only one and no one else had ever had problems like me. Unfortunately, I found out all of this after the fact. So, please, please,please let this be a warning to those who are considering a stimulator implanted in your spinal column....don't do it. I wish someone was there for me giving me this info 7 years ago when I was just 31yrs old. I now just celebrated my 38 bday yet I feel like I am 88 from all the problems &side effects from the SCS, and I am not exaggerating!!! Best wishes to you on your journey to recovery and to a new normal. Take care!! -Patty READ MORE
    • Judi
      July 02, 2012
      Judi
      July 02, 2012

      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 

      READ MORE
    • roxie
      November 09, 2012
      roxie
      November 09, 2012

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

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    • Patty
      November 09, 2012
      Patty
      November 09, 2012
      Good luck Roxie with the removal. I truly hope your symptoms start to subside once it is out. Don't be surprised or disappointed if they don't right away....I've had mine out for over 6 yrs and some symptoms are gone but some are still with me for life it seems.hang in there.....it gets better once it's out....can't get worse, right!! -patty READ MORE
    • roxie
      November 12, 2012
      roxie
      November 12, 2012

      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, 

      READ MORE
    • Patty
      November 12, 2012
      Patty
      November 12, 2012
      Hi Roxie. You are not going crazy by any means....medtronics, like ANS, is just as deceptive when they lie about all the symptoms and side effects the SCS implant causes. Hang I there....hopefully your ordeal ends tomorrow with the removal of the darn thing. Best of luck and KIT( keep in touch). -Patty READ MORE
    • Grace2U2
      November 17, 2012
      Grace2U2
      November 17, 2012
      Hi Roxie and Patty...I feel so badly for each if you. One thing I remind myself of is that when one is living with severe pain, we are hopeful that interventions like the SCS will afford us a better quality of life. With that said....Include me as another who highly suspects the SCS as being detrimental to the well being of many. I continue to have declining health which I believe stems from the Cervical SCS I had implanted 7/2010 and removed 12/2011. I was at a restaurant when suddenly the Medtronic System malfunctioned. I felt as though I was being internally fried throughout my body. I now have severe headaches, various facial/eye/head pain, chronic neck and back of the head pain, and fibromyalgia. In addition to recurring episodes of chronic fatigue and an array of symptoms which seem autoimmune in nature....(have not yet met with rheumatologist)...there's the challenge of depression. If ANYONE IS CONSIDERING A CERVICAL SCS...... Please do your homework before moving forward. I Praise The Lord for this opportunity to connect with others.... READ MORE
    • Patty
      November 19, 2012
      Patty
      November 19, 2012
      Hi! I just joined this website in the hopes of learning from others and sharing experiences. I really could use some help right now. I am 36 yrs old and am living with chronic acute pain in my lower back, legs, groin, and now neck. I was injured at age 24 in an accident, leaving my spine in a complete mess...you name it, I've got it in my lowerback from L1 to S1 and in my neck crom C1 to C7. I've tried several surgeries, therapies, injections, accupuncture, reiki, massage, pool therapy, countless pain meds, and even a spinal cord stimulator. Nothing has helped. Some made it worse, specifically the spinal cord stimulator. I had to stop working altogether at a job i love at age 27 due to the pain. I have been unable to return to work since then.  I am so lost now as I feel like I do not have a direction, a goal, have some kind of meaning to my life.  This has been going on for almost 10yrs now and I am more than frustrated with not being able to get better. All the docs offer me now is pain management.  I am homebound/shut-in as I am unable to drive 90% of the time.I am missing out on the prime of my life. All my old dreams and goals are gone now as they are not feasible with my pain/condition. My old self is dead, and I can't seem to stop from mourning who I was and what I was going to accomplish in life.  I can't seem to find anything new that I can do to make me happy and get me going again. I want to LIVE & THRIVE, and not just be in survival mode anymore. Is there anyone out there who knows what I am going thru? I sure could use some advice, some help, someone to talk to. Please. Thank you for taking the time to read. I appreciate it a lot. READ MORE
    • Maxpower429
      December 09, 2012
      Maxpower429
      December 09, 2012

      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.

      READ MORE
    • Maxpower429
      December 09, 2012
      Maxpower429
      December 09, 2012

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

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

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

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    • Patty
      January 11, 2013
      Patty
      January 11, 2013
      Hi Rainman! Thank u for ur email and sharing ur story, too. I am sorry to hear about all you have gone thru, and do hope that by talking amd sharing with others like ourselves that we can help each other out. On a birighter note, kudos to u for losing all that weight despite being in tremendous pain. How did u do it? That's most impressive and you should be very proud of yourself for doing that. The fact that u committed ur self to get better is wonderful and says a lot about yourself....that u indeed want to make life better for and u are willing to work at it regardless of the obstacles. I understand as I went thru a similar weight loss yrs ago, hoping that it would help my chronic pain (which it did not unfortunately)....and unfortunately I gained all the weight back despite trying and wanting desperately to keep it off just for other health reasons. it's just much harder to maintain weight loss when u can't be as physically active as you'd like or need to be. Anyway, please feel free to continue to write here so we can all and share....and vent our frustrations. Maybe if there's enough interest, I will open up a more personalized message board/ website for chronic pain sufferers like ourselves who just want to talk to others in similar situations. Please don't give up as there is still a lot of life left in u....I can tell, plus u are still young in ur 50's!! and even though on our worst days, when we want to throw the towel in completely, we still find the courage to soldier on. And that's b.c. we all want to be better, get better and feel better. Take care Rainman! Ttyl READ MORE
    • Patty
      March 19, 2013
      Patty
      March 19, 2013
      ******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm READ MORE
    • Patty
      March 19, 2013
      Patty
      March 19, 2013
      ******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm READ MORE
    • Patty
      March 19, 2013
      Patty
      March 19, 2013
      ******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm READ MORE
    • Patty
      March 19, 2013
      Patty
      March 19, 2013
      ******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm READ MORE
    • ctcgirl28
      April 25, 2013
      ctcgirl28
      April 25, 2013

      Patty,

       

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

       

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

       

      Julie

      READ MORE
    • Bonnie
      April 29, 2013
      Bonnie
      April 29, 2013

       Hi Julie,

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

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

       

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

       

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

       

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

       

      Bonnie

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  • Jan July 02, 2009
    Jan
    July 02, 2009

    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.

    READ MORE
    • Patty
      March 19, 2013
      Patty
      March 19, 2013
      ******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm READ MORE
    • mjtammany2
      December 28, 2014
      mjtammany2
      December 28, 2014
      they lied told me same thing. they knew it wouldnt work just were hoping i wouldnt have the same thing you reported! READ MORE
    • Chrissy71
      January 29, 2016
      Chrissy71
      January 29, 2016
      They lied to me to! READ MORE
  • anickstairs July 22, 2015
    anickstairs
    July 22, 2015
    trial, good, Had permanent, BAD...shoulda stayed on drugs READ MORE
  • les
    les
    December 29, 2011
    les
    les
    December 29, 2011

    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

    READ MORE
    • Patty
      March 19, 2013
      Patty
      March 19, 2013
      ******Attention******Very Important Info for SCS Sufferers!!!***** Please report all you SCS side effects to the FDA, medwatch program, form 3500A, ASAP. The web link is below. The more of us who report the horrible side effects of the SCS, the better. Please take a couple minutes to do this, not only to help yourself, but also others like you who are suffering even worse than before they had the SCS implanted. All the scs manufacturers, scs reps, surgeons, nurses, etc, who have lied to us and did not disclose all these horrid side effects to us before scs implantation. And now we are the ones who are suffering, sometimes even worse than before we had the scs implanted. We need to be heard, we need to band together so that we can get help and prevent others going through all this unnecessary pain and suffering. Please report to FDA ASAP. Thank you very much!! -Patty, a former SCS patient and sufferer for over 7 years http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm READ MORE
  • Mrs curious December 11, 2014
    Mrs curious
    December 11, 2014
    I have had fevers,and chills, anf numbness also.but most of all.when it's time to charge my stimulator and i go beyond the time frame.my back tends to hurts very badly.until i put the charger on my back and after s few minutes of charging it goes away..it Also tends to itch really bad at the incision site..but the doctors always say none of this has anything to do with my stimulator....yea right..... READ MORE
  • Peter October 19, 2010
    Peter
    October 19, 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.

    READ MORE
    • Patty
      May 02, 2012
      Patty
      May 02, 2012
      It has been awhile since my last post. Just to catch you all up, I had ANS SCS implanted back in fall of 2005 but then had to have it removed due to many factors...the stimulator was malfunctioning, shocking the wrong areas like ribs & chest & not my lower back as needed, doctors couldn't get the stimulator to capture the right areas like they did in the 3 day trial, immediately started having side effects from this implantation surgery such as: constant fever & chills, extreme fatigue, joint pain, joint swelling, swelling in hands, feet, head, arms,legs,etc, joint stiffness, joints all over my body that never bothered me before were now acting up, numbness in extremeties from all the swelling, inability to regulate my own temperature (I'm sweating in cool a.c. Indoors and freezing outside in 80 temps), fibromyalgia, inability to concentrate, can't cool my body down like I used to....I stay overheated for no reason, hot flashes, face feels like its on fire, and of course depression from all of these countless lovely side effects I did not have before the spinal cord stim surgery. I wish I never had it done and I do not recommend it on anyone. It has made my situation exponentially worse, and I regret the day I ever did it. I had the SCS removed in spring 2006 after trying many times to get the darn thing to work properly and to give it a chance, but enough torture was enou for me. Out it came, but all my problems still exist to this day, 6 years later. You would think that would be plenty of time for a body to get that junk out of its system and return to normal, but my primary care doc says the SCS triggered a severe inflammatory response in my body and the symptoms may never go away. So thanks to greedy ANS and their malfunctioning SCS, they have left me in more pain and more disabled with less quality of life than before their surgery. I thought docs took vows to do no harm to patients. Be very careful as ANS new about some of these side effects but hid them from me as well as countless other patients just so they could get a pay day. They lied about the side effects I was having, telling me that I was the only one and no one else had ever had problems like me. Unfortunately, I found out all of this after the fact. So, please, please,please let this be a warning to those who are considering a stimulator implanted in your spinal column....don't do it. I wish someone was there for me giving me this info 7 years ago when I was just 31yrs old. I now just celebrated my 38 bday yet I feel like I am 88 from all the problems &side effects from the SCS, and I am not exaggerating!!! Best wishes to you all on your journey to recovery and to a new normal. Take care of yourself! READ MORE
    • mjtammany2
      December 28, 2014
      mjtammany2
      December 28, 2014
      Patty we should talk!! READ MORE
  • Jenifer.kianna September 16, 2015
    Jenifer.kianna
    September 16, 2015
    I have 2 stimulators in my back lately . I've been having a lot of pain in my back it gets worse when I stain and walk around. Today 9 15 15 I had a facet injection in my back and the xray showed both leads are out of place. I'm very scared to have them removed . I don't do well with antesicia have a hard time waken up. I don't know what I'm going to do any suggestions READ MORE
    • Belle
      September 16, 2015
      Belle
      September 16, 2015
      The male and female connectors came apart in my Cervical SCS and I've never experienced such electric-like pain throughout my body. My neurologist was instrumental in seeing that the system was removed 18 months later. The removal of the system was easier than the initial implant, but my health continues to decline. My "gut" tells me the SCS malfunction is responsible......but no doctor is going to suggest such :( If I remember correctly, any MRI procedure is very limited as long as the system remains inside your body. I hope you experience better health in the future. READ MORE
  • Jenifer.kianna September 16, 2015
    Jenifer.kianna
    September 16, 2015
    Yes I also had the burning and tingling in my foot and pain around my neck and head with slur speech never had this problem before. READ MORE
  • Jen
    Jen
    July 17, 2015
    Jen
    Jen
    July 17, 2015
    Hi. While my husband has not experienced the horrific side effects mentioned here, he has gone through a lot. I don't think it helps that his doctor prides himself on rushing through the surgery. In my husband's case, he has a very hard time healing, and he has issues with his entire body. The "outpatient" surgery cost him 6 days of incredible pain in the hospital, followed by more of the same at home. He is now 8 weeks out. While he is able to move around now, he still has a lot of pain around the battery site, and at least for now, it is not touching his feet unless he turns it up so far up that it shocks his body, like he's being electrocuted. From the very beginning, he made it known that the goal was pain relief for his feet. If he knew back then what he knows now, he said that he would not have had the surgery. Hopefully 8 more weeks will make a difference. I just want people to know that if it takes much longer than expected to recover, they are not alone. Sadly, he was made to feel that way. From all I've read here, all of you went through the same thing, thinking that you were the only one complaining of your symptoms. Thank goodness for the Internet! What did we ever do without it! READ MORE
    • Belle
      September 16, 2015
      Belle
      September 16, 2015
      So true about internet Jen. After reading about the magnitude of problems resulting from these SCSs, makes me wonder why this information is not more readily available to those considering the implant. I was told of any risks in July 2010. I was #11 Cervical SCS for my surgeon..... Declining health ever since. June 2015 testing revealed I have Severe Autonomic Dysfunction now! I spend 85+ % of my life horizontal. Crazy these things continue to be implanted....$$$ READ MORE
  • swift May 28, 2015
    swift
    May 28, 2015
    I'm having the same problems :( It was good for the first little while (I even suggested it to many others) but then things just went downhill. I was working before but then its like I was in a car accident. Every time I walk sit or stand I'm in excruciating pain. I no longer do any household chores (no cooking no cleaning no shopping nothing) I can last about 15 minutes and its a painful 15 minutes. I'm back on pain medication (stronger than the meds I took when I injured myself to begin with) its awful. I want my life back to the way it was before. I haven't turned it on in probably a year as it hurts to use it and its always been painful to charge the stupid thing. Anyways, message me if u have any questions. Oh and I met another man in my town with exact same problems who did get his removed due to same stuff and now he's talking about getting a lawyer. READ MORE
    • Belle
      September 16, 2015
      Belle
      September 16, 2015
      Ditto Ditto "swift"...... My health has declined rapidly since the implant and removal of a Cervical SCS in 2010. I spend 85% of my life horizontally because of Autonomic Dysfunction. Just add that to a list of repercussions from these devices :( I haven't looked into litigation....maybe that's a thought. At least to prevent others from experiencing the same :( I hope you have better days ahead. READ MORE
  • pain101 June 02, 2014
    pain101
    June 02, 2014

    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.

    READ MORE
  • UsMarine December 18, 2015
    UsMarine
    December 18, 2015
    I find it very odd that people comment here as to their "experiences" with a SCS, when they haven't had one implanted, but have only read about or done research on it. Like any medication, or medical help to a debilitating aliment that you may suffer from, there are risks associated. I signed the paper work understanding these risks with, as did anyone that has had one implanted, stating that I understand the risks involved. Looking at many of the comments on this post, they are from some years ago.... Fast forward up to date, there has been many more implants approved by the FDA for use in the US. One would think that any medical issues you would acquire while undergoing treatment of any kind, would be looked into and fixed before begining rumors on a public forum like this. If in fact it was because of the SCS, that issues have occurred, my sincerest thoughts of getting well go out to you as would anyone.... But I for one am pleased with the treatment I received from my SMS, and at one point in the future know it will have to be removed in order to fix the issues with my back. But in no way would I blame the company/doctors/FDA/ anyone that would try to help medically to ensure a better quality of life for us. Each persons body is different and in return will react differently to something foreign. I hope that for the sake of this item (SCS) that those of us that chose to have it, helped the quality of life... And to those it did not work for, I wish you well in your search to find comfort with your pain. READ MORE
  • armymom8487 November 22, 2015
    armymom8487
    November 22, 2015
    I've had and am still experiencing severe stinging on my battery pack area and I've done had it moved once, so now what is my option because it has gotten so bad I'm to the point of considering having it removed and I don't want to do that because it has helped me tremendously, but it's getting very uncomfortable READ MORE
  • MsRobinson November 20, 2015
    MsRobinson
    November 20, 2015
    If i could go back in time and NOT have the SCS placed i would. Since i had the device placed about 3 years ago i've had horrible back spasms and burning at the battery site. for one thing when i woke from surgery i was informed the dr decided to put the battery somewhere other than where originally planned and its currently in my left butt cheek which has lead to constant rubbing and accidental hits to it. in the beginning i kept ending up in the ER because the battery would start to heat up and burn from the inside. I've been told by several drs that at this point if i have the device removed it will only lead to phantom pains. so for the last 2 years i just stopped turning the device on all together. i am in more pain now then i was before i had the surgery BECAUSE of the surgery. so you are not alone. READ MORE
  • clewett123 November 19, 2015
    clewett123
    November 19, 2015
    I have had the spinal cord stimulator September this year and I hate it. I know I haven't had it that long but I am in more pain than I was before. I can feel the top of the leads and I have a giant lump from the anchor protruding from my back. I have stopped using it because I felt worse with it on than I do with it off. When I used it my body would spasm, at night I would sweat to the point that my clothes would be soaked (but I would be freezing), and I wasn't having pain relief. I am going to have it removed (by a different doc).. I just can't believe I let the doctor talk me into getting this without even doing any imaging of my back to see if there was anything else to be done. I honestly think he did this surgery on me because he wanted to get paid for it and that's it. READ MORE
    • Kah2016
      January 07, 2016
      Kah2016
      January 07, 2016
      I have the Neurostimulator implanted in the back of my head for occipital headaches. My doctor used the paddle lead with me and I can feel it protruding through my skin, he told me not to worry about it...it might break the skin or it might not!?! This was just 4 days post-op! That was almost 3 months ago, I can now feel the entire paddle which now burns my skull and all wires in my skull. I also have the sweating problem. I wake up soaking wet. I never thought it had anything to do with this stimulator but since you mentioned it, I will tell my doctor about it! READ MORE
  • carolynaskew12 November 07, 2015
    carolynaskew12
    November 07, 2015
    I have had the nerve stimulator for 1 week. I have had muscle spasms so bad I couldn't walk. The rep for my devices tells me that the nerve stimulator is not causing the spasms. I'm pretty scared now. I am not sure what I should do now. READ MORE
  • Macca November 04, 2015
    Macca
    November 04, 2015
    Hi, I got my implant around 1 year ago then after 6 months or so I had to have it replaced (the first one was the non rechargeable)I now I have the rechargeable one in and having to recharge it weekly as it is on (number 7.5 from 10 setting) 24/7. I have found it getting harder and harder to find a good rechargeable connection every time I go to recharge it. I have found a number of things happening since having it fitted i.e. pains in my kidney (as if it has been given a beating) numbness in my buttocks, i've also had shocks that make me twitch at random times, cramp down my legs, constantly feeling tired and weak. Sometimes I feel weepy, short tempered, angry for no reason also gone off food a few times. There are a few other things which have escaped my memory at the moment, but feel free to contact me if you need more info on the stuff I've mentioned. mclmichael@gmail.com READ MORE
  • eggman November 03, 2015
    eggman
    November 03, 2015
    had 4 level spinal fusion in 2011 had many promblems after alot of pain meds e in 2015 had a stim trial, right after trial my right leg is what they call drop foot and both feet are numb. Have to walk with a cane going to neursurgeon next week. this really pisses me off reply to bweishapl@yahoo.com see how you are doing? READ MORE
  • phyllis687 October 24, 2015
    phyllis687
    October 24, 2015
    My stimulator goes off and on for different times when it is shut off. READ MORE
  • Mg2121 October 18, 2015
    Mg2121
    October 18, 2015
    Hi everyone, I'm so glad I found this forum. I just began the medtronic neurostimulation trial last Tuesday and it's due to cone out this Monday. I've had a really hard time getting used to this feeling, however the leg pain has decreased with this. Yet I'm so conflicted. I'm only 37 years old, have already had 2 surgeries on my lower back, last one in march of this year and now developed scar tissue so I'm deemed as a failed back surgery patient. My neurosurgeon sent me to pain management and they talked me into trying this. I was all for anything that will get me off the narcotics but honestly I have taken more over the last week because of the incision from this trial, so in reality I am so unsure of how well this is working. This us a workman's comp case so retrieving another surgeons opinion is next to impossible but I'm not sure if i can live with the scs. I hear more and more negative reviews on this, and the doctors and Healthcare professionals tell me to ignore it all and that the majority of reviews will be negative online because happy patients don't complain. Of course, they are all biased. In my opinion, at 37 having a permanent implant that is not a life or death situation is so premature. Has anyone had scar tissue removed and had any success? Would that be a waste of time to fight for a second opinion regarding that? I'm so frustrated and so conflicted. And why is my incision from this trial so painful, they made this seem like it's a piece of cake, stating that people take Tylenol after the implantation. I really need advice I feel like it's me againstthe world and I have to live with it. Whatever my decision may be! Thanks READ MORE
  • eveangel October 16, 2015
    eveangel
    October 16, 2015
    Approximately five months ago, I had a Medtronics MyStim stimulator installed in my lower back for the mail for the L4-L5 region of my low back. The stimulator itself has seem to function pretty much as I was told, the reason I saw that the site is because approximately a week and a half ago I began to have pain just in front of my left kidney corresponding to the area in which the stimulator when turned up to maximum sings to hurt. I was yet do not know if the stimulator has any effect in this area other than the F are mentioned pain when the stimulator is too high. If anyone has had pain in this area, that does not go all way, and is excruciating please let me know, as yet they have found no explanation, I am seeing my pain management physician on Tuesday. I will try to update this after that READ MORE
  • Peggy April 25, 2012
    Peggy
    April 25, 2012

    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.

    READ MORE
    • Patty
      May 02, 2012
      Patty
      May 02, 2012
      All I can tell you is what has happened to me, and then you can make your own decisions from there. I had ANS SCS implanted back in fall of 2005 but then had to have it removed due to many factors...the stimulator was malfunctioning, shocking the wrong areas like ribs & chest & not my lower back as needed, doctors couldn't get the stimulator to capture the right areas like they did in the 3 day trial, immediately started having side effects from this implantation surgery such as: constant fever & chills, extreme fatigue, joint pain, joint swelling, swelling in hands, feet, head, arms,legs,etc, joint stiffness, joints all over my body that never bothered me before were now acting up, numbness in extremeties from all the swelling, inability to regulate my own temperature (I'm sweating in cool a.c. Indoors and freezing outside in 80 temps), fibromyalgia, inability to concentrate, can't cool my body down like I used to....I stay overheated for no reason, hot flashes, face feels like its on fire, and of course depression from all of these countless lovely side effects I did not have before the spinal cord stim surgery. I wish I never had it done and I do not recommend it on anyone. It has made my situation exponentially worse, and I regret the day I ever did it. I had the SCS removed in spring 2006 after trying many times to get the darn thing to work properly and to give it a chance, but enough torture was enou for me. Out it came, but all my problems still exist to this day, 6 years later. You would think that would be plenty of time for a body to get that junk out of its system and return to normal, but my primary care doc says the SCS triggered a severe inflammatory response in my body and the symptoms may never go away. So thanks to greedy ANS and their malfunctioning SCS, they have left me in more pain and more disabled with less quality of life than before their surgery. I thought docs took vows to do no harm to patients. Be very careful as ANS new about some of these side effects but hid them from me as well as countless other patients just so they could get a pay day. They lied about the side effects I was having, telling me that I was the only one and no one else had ever had problems like me. Unfortunately, I found out all of this after the fact. So, please, please,please let this be a warning to those who are considering a stimulator implanted in your spinal column....don't do it. I wish someone was there for me giving me this info 7 years ago when I was just 31yrs old. I now just celebrated my 38 bday yet I feel like I am 88 from all the problems &side effects from the SCS, and I am not exaggerating!!! Best wishes to you on your journey to recovery and to a new normal. Take care!! -Patty READ MORE
    • steve
      June 30, 2012
      steve
      June 30, 2012

      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

      READ MORE
  • forerunner_jb April 21, 2016
    forerunner_jb
    April 21, 2016
    Are you taking Gabapentin? Your side effects sound like those of Gabapentin. I have had a SCS for 2 months now and on short wave I had the side effect of the area that was being stimulated heating up. But on the long wave this does not occur. For a rare few of us the short wave setting turns us into a microwave oven. I'm glad that I figured it out before I burst into flames. Over all the SCS helps alot with my pain. I have recomended it to a friend. READ MORE
  • Diver 1 April 15, 2016
    Diver 1
    April 15, 2016
    I was diagnosed with CRPS in 2012 and had a permanent back stimalator implanted in my right hip in November of 2013. In December of 2015 I started having lower back pain around my battery. At first I thought maybe I had hit it without realizing or possibly turned or twisted wrong. I reported this to my surgeon in January of 2016 and was told to follow up with my primary care physicians to see if I had a bladder or kidney infection which I did. I was on antibiotics for 2 weeks and it did nothing for the pain. The pain continued to worsen and finally I had a CAT SCAN to see if my stimulator implant was broken or leaking. It came back negative. The pain has worsened to the point that I can barely stand to sit in a car or chair. I cannot lay on my right side or back. Any physical activity makes it worse and this has now been going on for four months. My surgeon now wants me to see a urologist to rule out any bladder or kidney failure or disease before exploratory surgery and possibly moving my stimulator implant to my left side. The pain has been so severe at times I've considered going to the ER. I'M scared to death and don't know what to do. Without my stimulator I would be completely dependent on opiates and neurotin medications for the rest of my life. I'm sorry I can't answer your questions but I have not had arthritic issues. I'm at a loss for words and have no idea how to proceed. READ MORE
  • jmcdabrat April 11, 2016
    jmcdabrat
    April 11, 2016
    I'm getting one this Wednesday for CRPS in my left hand and I'm a bit scared.I'm sorry you are having so many problems I pray it helps me READ MORE
  • estephes April 06, 2016
    estephes
    April 06, 2016
    I have een experiencing similar snsations however, have not had stimulator implanted but, did have a failed fusion at C6-7. The thing that gets me is the increased pain in neck at that level and increased amt. Headaches. There is evidence that what I am experiencing is affecting both sympathetic and parasymathetic systems. Well documented. There are specfic times of the day and night that show either a marked increase and a marked dcrease in stimulation. I have been searching nowfor 18 months each time I refine my query. This is what lead me here. I have used a tens unit since 1993 but, haven't for more than a decade now. I hope to hear from you. STEPHANIE READ MORE
  • jehansen1 March 30, 2016
    jehansen1
    March 30, 2016
    I am dealing with extremely painful legs and hips, really bad at the calves..it is extreme cramping & I am nervous about it. I have had several back surgeries with hardware that was removed but this is so bothersome my feet hurt when I walk, I can't get comfortable and I can't focus or think cuz it's painful & worrisome. I had the Medtronic Spine Stimulator Implanted in 2013. Tomorrow I go to where I had it implanted. I firmly believe it is from the Stimulater (this new pain) but I want them to remove it..I am worried they won't. READ MORE
  • sherwin123 March 17, 2016
    sherwin123
    March 17, 2016
    i will have surgery next week to remove nerve and it make my back horrible pain but it help other people but not me and it is depend on patients tolerate i felt bad device make my back worse sad ! READ MORE
  • SJL
    SJL
    March 15, 2016
    SJL
    SJL
    March 15, 2016
    My husband had a Nevro Senza SCS trial in early December 2015 and implanted late December 2015. He has developed severe headaches, neck pain and eye pain 7 days after the implant. ( Trial was great for lower back pain.) Turned off the SCS and pain still persists. Spent 7 days in the hospital under a neurologist trying to stop the headaches but nothing worked. Had several falls one resulted in ER. No one can explain or stop the pain. SCS is still implanted. Thinking of removing but don't know if pain will subside with removal. Does anyone have experiences like this and did removal of SCS stop problem. READ MORE
  • Brenda February 27, 2016
    Brenda
    February 27, 2016
    I had Spinal Cord Stimulator put in 2013 since having it done I have pain in my feet and legs my toes also turn blue sometimes I never got any relief but developed restless leg syndrome READ MORE
  • mosley1951 February 22, 2016
    mosley1951
    February 22, 2016
    I had the perment stimulator placed and seem to have a problem. I feel the tingling in my legs but the pain doesn't change. It just goes straight to my brain as pain. The only time that helps is to turn very low and it keeps the knots out of my legs. What can I do as my doc will cut my meds and I will be bed ridden most of the? Time. Out 10 hours at the most I will not be in bed. Any help would be greatly appreciated. Doc goes by book and no symphony for the patient READ MORE
  • lvfire February 12, 2016
    lvfire
    February 12, 2016
    I have a severe pain where the battery pack is digging into my hip bone my dr said he ddidnt install it i was waiting to replace it with the new ones that will be out soon. I chose the larger battery pack. A big mistake espescially where it is in stalled right above my left buttox. I wanted it near my stomach but it is digging in so bad and causing nerve pain i can feel from the slight pressure from sleeping on my back or sitting in a chair ect. The doc said no its just pushing aginst the bone but if that was all explain why i have nerve pain when i press on the unit. I was afraid to get the smallr battery pack because i thought it would run out too soon but now i wish i got the smaller battery. The pharmacys give me so much duff on my medicine but i dont think them or even most of the doctors know what a real back ache is like. I am hurting now because of the unit as well. The trial wasnt supposed to work as well as my permenate one but, i think that worked better. My neurostimulater is St. Judes I really dont think there is much different. I wanted to wait for the new units that dont have to be charged for 5 years or so until i realized. The battery is the same size as the large St. Judes model the one I have now. I have an advanced hereditary degenritive spine condition now because of all the people who take meds who flat don't need wh mess that up. The whole point i got a Neuro Stimm was to stop taking meds. No i have pressure from the pharmacy to hurry up and get better like that issnt my main gole READ MORE
  • Bill Robertson February 02, 2016
    Bill Robertson
    February 02, 2016
    I had a Medtronics Spinal Neurostimulator (2 Leads) placed into my Narrow Spinal Canal in 2012 and removed in 2015 because it created more pain then I originally started out with, it created pins and needles from my knee down to the soles of my feet. When it was put in origially it was supposed to have helped the pain I had in my lower spine and left hip. I would not have another put into anyone if I had my way. READ MORE
  • Chrissy71 January 29, 2016
    Chrissy71
    January 29, 2016
    I'm having all the same symptoms, right now I am having burning sensation in between my shoulder blades, also my fingers and palms of my hands are numb but I've been told that the SCS is not causing this and they are sending me to a neurologist to have some kind of tests done to see if I have carpal tunnel syndrome. Which I know I don't!!!! They are wasting my insurance company money!!! READ MORE
  • cheryl.barcomb January 28, 2016
    cheryl.barcomb
    January 28, 2016
    Like everyone else, I'm also having problems with my SCS. Trial was May 2015 and it worked pretty good... Perm. was implanted Sept. 10, 2015 and the biggest problem I'm having is the major nerve pain. The branch from the back and curves around the right side of your ribs. If I have the Stim set more than 5.0, I'm almost in tears. I still can't walk that far, lift anything over 5 pounds, forget bending to put dishes away or put in the dishwasher... I have to sit cause of the pain. I've brought this up to my surgeon and he just says the nerves will heal real soon... his PA just tells me I'm still healing... I just had to go in yesterday for a nerve block due to the pain the SCS is NOT helping with.. which it's suppose to be.. This doctor asked if I've ever thought of having it removed.. I told him when I see the PA and my Pain Management Doctor in March, I'll be asking to have it removed. It's bad when you're in more pain now than before the surgery. READ MORE
  • Feeling helpless January 16, 2016
    Feeling helpless
    January 16, 2016
    I attempted to have a secs trial done. When placed my calf, ankle and toes in my right spammed so severe they curled up. They could not get it to wprk on the left side due to bulging nag disc. All this time I was told to lay still while the spams continued and ne screaming in pain. They were going to take the left out and leave the right lead. In the end I had the remove everything. Today is 5 days later, still having minor spasms (which I never had before). But getting better. The suggested a paddle nerve stimulator my response no way! READ MORE
  • d10567 January 15, 2016
    d10567
    January 15, 2016
    Sorry! I also forgot to tell you that because of one of the leads being out of place. when im on a certain program I get a low to high electrical stimulation in my right side of my abdomen then it radiates up toward my right side of my chest this is very scary. I immediately changed program to lessen it. READ MORE
  • d10567 January 15, 2016
    d10567
    January 15, 2016
    I have definitely been suffering from severe fatigue syndrome. I have to take an energy drink and a vitamin that helps with energy as well. I also breakout in severe sweats then I get chills. I also suffer from some weakness in my right arm and leg. I dont know what to do im presently trying to find an attorney to help me with this case because this is the second time I had a simulator put in by a doctor incorrectly. the first one , the leads were put in too high now with this doctor I just had X-rays done come to find out one of the leads are way out of place. I need someone to help me. in addition to this, my doctor and I agreed that if during surgery for the second stimulator he was going to just change the ancor and the batteries and just pull down the leads. well he told me that if he had any trouble like with too much scar tissue where he would not be able to pull down the leads that he was going to take everything out . let it heal for a month then do the trail and if that worked he would put it in permanently.Well he did have trouble with my leads but decided to go ahead anyway without my consent and bypass the trial and put it in permanently. I was so upset when I woke up from surgery. I just went home and cried I felt as if I didnt have a voice. When I questioned him why did he go ahead and bypass the trial like he said his answer was" "well since I was already in there I decided to go ahead and do it." Someone PLEASE HELP ME! I feel so alone with this issue. READ MORE
  • mjtwo2 January 09, 2016
    mjtwo2
    January 09, 2016
    I have had the permit one in for a month at this date. I have experience emptiness near the spinal cord incision. Which I've noticed that a couple of other people have noticed that too. I have also been experienced this strange side effect which I brought it up to the doctors and then looking at each other like I'm crazy. But I get this dizziness issue and I lose my balance like I'm going to fall over. I have kind of almost fallen over a few times and I ran into things. My friends and my father have noticed it and are quite concerned. Has anybody experienced anything in that sense. READ MORE
  • Jimmy Williams January 07, 2016
    Jimmy Williams
    January 07, 2016
    My husband is experiencing uncontrolled arm & leg movements! Jerking , loss of bodily functions , & so much more ! He has a spinal cord simulator! Has seen Neurologist ,& ENT! They do not have answers! Our son found this about Simulators ! READ MORE
  • Dale December 18, 2015
    Dale
    December 18, 2015
    I realize this was in '09 when you posted this, but I had mine implanted March of this year and am having the same symptoms you experienced. What did you do about it? I'm trying to have mine taken out. Thank you READ MORE
  • BevGil December 18, 2015
    BevGil
    December 18, 2015
    Indeed! After about 5 days, I began to itch all over. Tiny bumps that look like measles. The only place that isn't broken out or itching is my face. I pray that isn't next. Mine is Boston Scientific. My pain Mgmt is precious and was/is concerned. He immediately sent me to the surgeon who said, "hmmmm I've never had this before". I felt like he blew me off and doesn't believe it's the SCS. I'm 100% positive it is. Now what? It's a nightmare. Benadryl had become my crack and keeps me from sleeping! READ MORE
  • Cathy December 09, 2015
    Cathy
    December 09, 2015
    I have developed rashes that look like blisters. They've developed in different places. READ MORE
  • Jenifer.kianna October 10, 2015
    Jenifer.kianna
    October 10, 2015
    I have 2 stimulators implanted in my low back. I have croinic back pain. I was sitting outside with my sister in law. I felt something on my right side it felt like the stimulator shorted out. Stated to have pain and weakness in my back down my leg 2 days later my speech was impaired. I went to turn the stimulator on it didn't work. So my sister in law called my rep ad explain what happened he said it was impossible it wouldn't short out that way haven't had it removed yet. Still having the same problems. I'm making appointment to have it remove hopefully my speech will come back after I have it removed READ MORE
  • mlwh389 October 08, 2015
    mlwh389
    October 08, 2015
    I had spinalcord stimulator put in Sept 1 2015 after the temp was removed about a week or so later I started having constant rt leg pain down my leg all the way to my foot and increasEd numbness in my toes and down lateral side of my leg the leg pain I had before I could at least get some relief if I laid flat on my back. This is not the case now there is no potion that relieves this pain. I had a deep tissue massage thinking it would helo. It did not. I want to know if this is something I will have indefinitely. Please help READ MORE
  • Carol September 28, 2015
    Carol
    September 28, 2015
    Hi Patty, I am about 6 yrs late on your question but maybe it will get to you or others. I am on my 2nd SCS and have had problems with both. My trial helped reduce my pain between 20-40%, it depended on the whim of my back or the way the wind blew lol. But both times with the permanent SCS I have had little relief, with both they caused my feet to swell and they could never get the stimulation out of my feet. It feels like bees are constantly stinging my feet when I do turn it on and this second time (I have the new wide paddle) one of the leads are on an area which hits my sternum/diaphragm area and I can't take a breath or even breath shallowly due to the electrical current. I am still in Chronic pain, numbness in various spots in my legs, and numbness and/or tingling in my right hand & left fingers are "normal". I am constantly tired, spasms in all parts of my back (SCS on or off) which cause my legs to twitch or go out from under me, headaches, painful neck stiffness and sleeping on anything other then my recliner in the (almost upright position) with my feet up, will cause my back to cramp up, spasm and I am in extreme pain the next day. At the incision spot it is a painful numbness-if that makes sense. It is difficult to wear a back hook bra due to the incision area pain. The neurosurgeon told me he nor his team did not have any responsibility for this or any of my new problems. I researched beforehand and he is one of the top in the North East United States. Though I force myself to walk with my cane or rollator, my left knee started to feel stiff then went to painful , now my right has started the same way. The docs - primary care, DO, or Orthopaedist cannot find anything wrong with my knees (a new mystery pain). No, I am not obese- I did gain close to 75lbs steadily and quickly, but managed through diet and as much exercise I could tolerate pain-wise to lose (& so far keep off) 56lbs, With about 20lbs more to get back to my 'desirable range'. I lost the 56lbs about 7 months before my knee problem even started. But they did find out I have hypothyroidism (no one seemed to believe me when I said my diet hadn't changed but my weight was quickly & steadily climbing). I am tired & feel just worn out all the time but have a hard time sleeping. I have arthritis but am not sure if it has worsened due to the SCS. I didn't know Fibromyalgia could be a side effect of SCS. Something new for me to research. I hope this helps someone out there and finds it's way to you Patty. BUT don't let this scare you if you are talking with your doctor about the SCS or the PNS. I know some who have benefited from these, just not me so much (I tend to fall into every 2-3% of "it rarely happens" group. Good luck to everyone and have a wonderful day!! READ MORE
    • karen
      October 07, 2015
      karen
      October 07, 2015
      I received my first implant in July of 2011. The wires slipped and I had a revision. The Dr. could not get the wires in place and he closed he incision. I started to have severe muscle spasms in my side. It felt like someone was grabbing my muscle on my right side and was twisting it. I was sent to another Neurosurgeon. He implanted another stimulator in my back May 2015. thee was some change in the muscle contractions. they were not gone, but dimminished some. as the time has passed this has continually gotten worse. I cannot do anything without crying out in pain from the spasms. I got the stimulator for severe Sciatic pain. The stimulator does work or that. I cannot increase he charge any higher then 3 or the spasms are too severe. Since reading all these reviews I think I will have to have it removed. No one could tell me why I was having the muscle spasms. Thank you for giving me an indication of what my problem is. READ MORE
  • Belle September 16, 2015
    Belle
    September 16, 2015
    Your post was so long ago I don't know if my response is of any relevance. I have had nothing but health issues following my Cervical SCS implant in July of 2010. The latest diagnosis has been Severe Autonomic Dysfunction. :( I wish I had researched the effectiveness (or lack of), and complications of this surgery prior to agreeing to it. The recipients of these SCS are usually experiencing such relentless pain that we are willing to try about anything. If you received my response please reply as I would like to know how you are fairing. READ MORE
  • justinusarmy1 September 07, 2015
    justinusarmy1
    September 07, 2015
    I just had a stimulator put in two weeks ago and now im getting cramps in my legs there like Charlie horses all the way from the top to my feet. does anyone have this issue? READ MORE
    • Belle
      September 16, 2015
      Belle
      September 16, 2015
      Have experienced an array of health issues since my Cervical SCS went awry :( Just don't trust 'em. READ MORE
    • lynnlynn068
      December 06, 2015
      lynnlynn068
      December 06, 2015
      Yes,cramps all over once arch of feet .scs in for 2years .great at first but now severe cramps READ MORE
    • Chrissy71
      January 29, 2016
      Chrissy71
      January 29, 2016
      I had mine put in July 2015. I have severe cramps in my legs and feet, just like you explained Charlie Horse cramps. I also have the numbness in my pinky finger, my ring finger, my middle finger, and the palm of my hands. They are sending me to a neurologist now to have tests. READ MORE
  • marciedoats36 August 24, 2015
    marciedoats36
    August 24, 2015
    I had my Medtronics unit in last May. Sometimes I have muscle spasms around the battery pack itself. I forgot to charge it twice and this last time I've had muscle spasms since it died. I also don't feel well at all. READ MORE
  • ijustsold June 15, 2015
    ijustsold
    June 15, 2015
    Yes big-time. I have had it for 3 years now and my who attitude has changed for the worse. I now have big problems with anxiety, chronic fatigue, memory , weakness, and I'm sick all the time now. My wife says since I got this I have never been the same...Has anyone had this happen to them?? , READ MORE
    • Belle
      September 16, 2015
      Belle
      September 16, 2015
      ME....... You, "ijustsold", describe me to a tee. Except now I've been diagnosed with Severe Autonomic Dysfunction also. I'd hate to think the different doctors I've gone to know something about the effects of these SCSs that they are not commenting on. It will be five years soon (12/23/11) since the Medtronic Cervical SCS went awry in me.....horrible electric-like shocking through my body. I'll never forget that day. I have since had the SCS totally removed, but my health continues to decline :( I hope you have better health in the future. READ MORE
    • lynnlynn068
      December 06, 2015
      lynnlynn068
      December 06, 2015
      Yes,severe pain and spasms. READ MORE
  • swift May 28, 2015
    swift
    May 28, 2015
    Hi i was wondering where i go on webmd Dawn g???? I would love to hear about others experiences and to share my full story and hopefully find out some answers on where to go from here as I refuse to go see the doctors who put it in. (I also heard that my doctor no longer works with our pain clinic anymore and I've heard rumors that its because of he was not trained properly on putting the device's in! Who knows if its true or not.) Thanks in advanced. Swift girl :) READ MORE
  • mykcarey37 May 23, 2015
    mykcarey37
    May 23, 2015
    I have a medtronic stims installed 6 mons now, Im not only not getting relief from it it makes my right side feel like a very uncomfortable electrocution on the lowest setting. Ive been getting chills a lot, migraines, and i put a cap on a babies bottle in the kitchen and my back locked up for 3 day's in sever pain. It was put in for my left leg, but my right side, leg, arm, and back. Ive had a lammy 2 years earlier same spot. After 3 surgeries I cant imagine going in for another Im lost I dont know what to do about this but Im in chronic pain here in upstate ny near Binghamton. Im a big strong truck driver , but Ill be honest with you it feels like they did everything on the wrong side, and I'm afraid to see or talk to a doctor at this point I cant bear the thought of being cut up again, with wrong results. Monday (its Saturday) I'm going to a lawyer Monday to get advice, for a doctor for all I know Id go to one of his students and they'd hurt me more. I don't know what to do. To make matter's worse I take primary care of my 2 year old granddaughter who is blind. This sux but I feel your pain. READ MORE
  • taylordoz88 March 14, 2015
    taylordoz88
    March 14, 2015
    I have. I had one installed in September. Its march and the perkataous leads broke. So they placed a paddle lead in. Im having alot of problems. Please contact me. READ MORE
  • mjtammany2 December 28, 2014
    mjtammany2
    December 28, 2014
    K since mine was implanted ive had severe stomach issues, not being able to keep food either way, severe spasms in my rib and back area and literally feel like I'm being stabbed when I breathe, they removed the scs/ tazer that could literally freeze me in place and poop myself ! It was obvious to us all that the scs had shifted to motor nerves and sensory nerves!! I'm not brave enough to try it again, felt like I was in a horribvle scary movie and just pray that rib searing chest splitting pain will stop! My feet used to seize but stop when I use marijuana for medicinal purposes, they took out scs that i miss and lovingly call a tazer, (any woman would for vibrations)... but i would never be brave enough to try it again, i'm still hoping to get potty trained before my child :) READ MORE
  • suska12226 December 15, 2014
    suska12226
    December 15, 2014
    Yes had many of your systems too. Fibromyalgia, arthritis, weakness and numbness in extremities, headaches READ MORE
  • abbyinokc November 11, 2014
    abbyinokc
    November 11, 2014

    It made me extremely sick to my stomach.  

    READ MORE
  • Spirit Girl June 05, 2014
    Spirit Girl
    June 05, 2014

    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. 

    READ MORE
  • terrie B June 01, 2014
    terrie B
    June 01, 2014

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

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  • terrie B June 01, 2014
    terrie B
    June 01, 2014

    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!

    READ MORE
  • 3cat mom May 18, 2014
    3cat mom
    May 18, 2014

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

     

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  • Iamatwittsend May 03, 2014
    Iamatwittsend
    May 03, 2014

    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???

     

     

    READ MORE
  • Susan February 27, 2014
    Susan
    February 27, 2014

    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

    READ MORE
  • bobbi January 27, 2014
    bobbi
    January 27, 2014

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

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  • rogover January 14, 2014
    rogover
    January 14, 2014

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

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    • Susan
      February 28, 2014
      Susan
      February 28, 2014

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

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  • Tina January 12, 2014
    Tina
    January 12, 2014

    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. 

    READ MORE
    • Patty
      January 13, 2014
      Patty
      January 13, 2014
      I'm not sure, but it wouldn't surprise me at all. If this pain is new since the implantation, keep track of it, and go see other docs for second opinions. READ MORE
  • Mat
    Mat
    December 25, 2013
    Mat
    Mat
    December 25, 2013

    Hi Patty:

     

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

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    • Patty
      December 29, 2013
      Patty
      December 29, 2013
      Firstly, thank u so much for sharing your extensive story and issues relating to the SCS. You are a trooper for undergoing so many revisions and new implants to keep trying the CSS again and again. I'm very sorry to hear about all your pain and problems, as unfortunately I relate all too well, being in a similar predicament as you age and work wise. I would get the ads out if I were you and just move on bc it's not doing you any good sitting there in your body doing nothing, plus it might cause more problems down the road if anything else should leak, migrate, who knows with these darn thing....right?! Anyway, I wish you the best with your studies and think you will be wonderful at counseling chronic pain sufferers since you have first hand knowledge. READ MORE
    • lynnlynn068
      December 06, 2015
      lynnlynn068
      December 06, 2015
      Patty,good luck on your career,I'll seek you when you are a practitioner.god bless READ MORE
  • jayne isaacs December 06, 2013
    jayne isaacs
    December 06, 2013

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

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  • cas24 December 04, 2013
    cas24
    December 04, 2013

    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

    READ MORE
    • Patty
      December 05, 2013
      Patty
      December 05, 2013
      Hi Casey! Sorry to hear about your pain and issues. First, never listen to the medical reps...they only make money when they make a sale. They'Re just salespeople trying to reach quotas and make commissions. You're just another number and statistic to them. Sorry to be so blunt but its true. Secondly, if during your trial, you don't have more relief from your pain than pain being caused from the stimulator, than don't bother getting it permanently implanted. That's why it's a trial....to see how it works for you. How many days is your trial supposed to last? Mine was 3 days while some others can be up to a week. Let me know how you progress and what you decide. Good luck,hang in there. I know ALL too well what you are going through and what it feels like not to have any other options. But just because this seems like the only option, doesn't mean it's the one you have to take or should take. Good luck! READ MORE
    • jayne isaacs
      December 06, 2013
      jayne isaacs
      December 06, 2013

      Hey Kasey,

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

      good luck

      jayne in ohio

      READ MORE
  • coco feliciano November 16, 2013
    coco feliciano
    November 16, 2013

    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

    READ MORE
    • Patty
      November 18, 2013
      Patty
      November 18, 2013
      Hi Cocco, I'm sorry to hear about your suffering, your ordeal and your situation. I know too well how you feel and how frustrating it is. If you are in that much pain where you can't stand up in the shower, had 4 surgeries in 6 weeks, and have problems breathing, go to the hospital....a different hospital than where you had the stimulator put in and where that doctor does not have privileges to practice. Please take care of yourself first and get some relief from your pain first, even if that means going to a differentain management facility....go to one associated with a major hospital if possible, not a pain clinic. Get seen and treated by a different pain doctor. Then when you are better, decide what you want to do, if there is anything legally to be done. See a lawyer and get their advice...usually consultations are free and they will tell you if you have a case, but you need to bring all your medical files, reports, everything. And it's very hard to prove malpractice or negligence, so just a warning... I've been down this road, and even though what the doctors did was ethically and morally wrong, there was no legal case. But the fact that you've had 4 surgeries in 6 weeks, were implanted with a bigger device when u were shown a smaller device (but doctors can explain that away at the last minute while in surgery saying that this bigger device was better for you....even though it wasn't), you may have some proof, but I am NOT A LAWYER, so I cannot advise you. So, my opinion, just get better, use all your anger and frustrations in getting and feeling better first, ok. I wish u the best. Let me know how you're doing, ok. Take care and feel free to write here anytime. Patty READ MORE
  • Tonya October 16, 2013
    Tonya
    October 16, 2013

    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.

    READ MORE
  • Dawn G August 23, 2013
    Dawn G
    August 23, 2013
    LAW FIRMS TAKING ACTION..... This is for all of us that have had our lives ripped apart from the SCS. We must have done a good job filling adverse events with the FDA. Because today, after months after giving up, I googled SCS law suits and there are two firms online looking for people to participate that have had problems with the SCS. The first one that shows up is the Meyerson Law Firm, this one I have sent my information. The page opens with all you need to do. The other is a Texas firm. We must have done a good job. So get your voice heard. Fellow sufferer Dawn READ MORE
  • Jess August 15, 2013
    Jess
    August 15, 2013

    Hi Patty,

     

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

    READ MORE
    • Patty
      August 17, 2013
      Patty
      August 17, 2013
      Hi Thanks for writing in with your experience and symptoms with the SCS. I have heard about others having pain where there battery packs are located, but not to the point where it radiates down to your toes and prevents you from sleeping...plus you can no longer charge it. Sounds like some serious issues going on there. You need to decide if the pain relief you have been getting thus far is worth the pain and issues you have now and may potentially have in the future. If you're not sure, read some more of these posts to give you an idea of what could happen to you if you leave it in, or get a new battery pack put in. But at the same time, its your body, your pain, totally up to you. If this SCS seems to be doing more good than harm for you, than go for it, but from my experience, and others on here , the SCC tends to do much much more harm than any kind of good so we may lean towards getting it removed. But again, that's your choice. Do some more research, read some more posts here, on other message boards, face books, etc.... Good luck to you. Let us know what you decide and I truly hope you do feel better!!!! Please keep in touch and keep us updated, ok. Thanks and feel free to message here anytime with questions, concerns or if you just need to vent frustrations, we've all been there. :) Take care! Patty READ MORE
  • DaleC May 31, 2013
    DaleC
    May 31, 2013

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

     

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

     

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

     

     

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  • Frances May 18, 2013
    Frances
    May 18, 2013

    Patty,

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

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

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

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

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

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

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  • Kay08 March 19, 2013