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Spinal Cord Stimulator FAILED

I had horrific experience with my Medtronic Spinal Cord Stimulator. Initially, when it was implanted, my "doctor" placed the generator on my right side. He placed it in an area where the skin was weak due to stretch marks. Following the surgery (sorry, it might be TMI, but I have to be honest and warn people), it was 10 days before I had a bowel movement, as well as the "urge feeling". I had taken HALF a pack of chocolate Ex-Lax because I was in so much pain. At the same time, the generator had moved and it was at the point where it was protruding from my side at least 1/2". I also lost the ability to communicate with the generator. At one of many appointments, my doctor tried to "manually" pop the generator in place. Meanwhile, I still was having bowel problems, to which he claimed it was the narcotics and advised me to add more fiber to my diet. I also started making a strange noise - it was like a gasp and hiccup, to which he had no idea but said there was no connection. When he was unable to pop the generator into place, the Medtronic Rep said told him it would need to be moved. At that time, another doctor in his practice came in and it was decided that the generator would be moved and that instead of just implanting the wires that they would do a laminectomey and implant a paddle, which I was told would end the "cross migration" of the sensations. The surgery to change the position of the generator and install a paddle took place about a year later.

Immediately following the laminectomey, I lost the feeling in my fingers, hands and arms. I also started jerking - the feeling you get sometimes when you are falling asleep and you "feel like you are falling". I was also still having problems with keeping the sensation in the area I needed it to be in. The jerking and gasping/hiccups increased to where it was a constant thing and my urge for bowel movement was still gone.

After a year, I had enough and insisted everything be removed. I was hoping that the jerks and the gasps/hiccups would stop, but they didn't it got worse. The jerking started to keep me up almost all night. My urge to have a bowel movement was gone. I was also starting to have a problem of vomiting in my sleep and would wake up choking. My primary care doctor finally sent me in for an upper and lower g.i. That was a separate nightmare, but immediately after drinking the nasty stuff, I lost approximately 20 pounds!! The doctor couldn't find any "physical" reason, told me it might be due to the narcotics and said drink more water and eat more fiber. Joy....

In between the pain management doctors and my primary care, I started to see an acupuncturist who was also a pain management doctor. She is an incredible and amazing doctor. She paid attention to me, she witnessed the jerks, she saw ME - I wasn't just a dollar sign. She even noticed a problem that started with my eye lids - one was getting droopy. Based strictly upon my symptoms and my drooping eyelid, she had a heavy metal blood test and referred me to a neurologist. The blood test revealed a high presence of copper. The neurologist did several tests to rule out M.S. and Wilson's Disease.

With negative results for MS and Wilson's Disease, my neurologist did his own research into what could be causing the jerks, the gasps/hiccups and the problems with my bowels. After a few visits, he was able to finally diagnosis me - I had Propriospinal Myoclonus caused by the implantation of the spinal cord stimulator. He also was able to help control the jerks somewhat (they still happen, just not as frequent or severe) and to help with gasps/hiccups. We are still working on my symptoms and trying to get it all under control.

Research is showing that there is a link to the spinal cord stimulators and myoclonic jerks. The gasping/hiccups is from my bowels pushing up on my diaphragm. Knowing what I know now, I would NEVER recommend a spinal cord stimulator to anyone!! These are the complications that they never tell you about. I am now in worse shape than I started in.
Patti Christmas
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Comments

  • LizLiz Posts: 7,904
    http://www.spine-health.com/treatment/back-surgery/spinal-cord-stimulation-advantages-and-risks

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    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • kia155kkia155 Hedgesville, , WVPosts: 8
    Thak you for your post.  I  have been getting the runaround for a month with the "it is not related" bull.  Finally I went to the ER and told them I had no doctor and having problems. The ER doc made calls and got someone on the ball.  Now I have gotton several mri's and going for chest Xray.  I know they are gonna say drink water and I must have something else wrong to give me breathing problem.  But it all started soon after implant trial. I also have problem with bowell and swell up like 9 months pregnant and sore stomach.  I hope I find someone to help me too.God Bless.
  • Was it a Medtronic SCS trial? I had a bad experience with it that caused a 2 week long spinal headache. I'm hoping the Boston Scientific will be better. It's really scary and I hope nobody goes through complications like these. I hope you find someone to help you soon. Have they removed the leads yet?
    Ol' Spiney..Micro-D L4-L5, TLIF L4-S1 -post op central HNP L4-S1,stenosis, retrolisthesis, EF, facet arthropathy, lumbar& cervical DDD. FBSS- Medtronic pain pump & SCS
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