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

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.

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

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

I had 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.

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.

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.

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.

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?

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?

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!

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!

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 !!!