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Arachnoiditis Sufferers User Group
arachnoiditis vs. nerve stimulator implant
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Arachnoiditis is a rare chronic neuropathic disease that has no cure. If you are looking for others who have this disease, you have found the right place. Take a moment to tell your story. Together we can help each other in our journey with Arachnoiditis.

Founded by mummy3too on July 30, 2010
27 members
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arachnoiditis vs. nerve stimulator implant

Have any of you fellow sufferers of this crazy disease had, or had a dr. recommend a stimulator implant for arachnoiditis?
My dr. has not given me any clue as to percentage of success with this treatment, I think he is only interested in padding his already fat wallet!  Hate being so skeptical, I just don't trust these people anymore.  Had L5-S1 fusion in '04 and now he also wants to extend that rod to up one level.  Trust me that's not gonna happen.  It was done at Centennial Med Ctr.  in Nashville, Tn.  and I never expected to be allowed to hurt that much.  They gave me soma and lortab post-surg in the hospital, unbelievable.  One compassionate nurse did see me and gave me a morphine hip-shot, but that was it.
Anyway, I'm dazed and confuzed and have to keep working, I'm only 59, divorced and trying to keep my home, but it's a ridiculously miserable way to live.  There's multiple bone spurs, fractures, bulging disks, and neurofibromas evident as well, so I just don't trust this implant to do s.... considering I've been in pain off and on since 1978.
Any thoughts?
Ron
3 Comments
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1322157_tn?1279660281
Ron,

My Dr and I discussed this - he told me I was not a candidate for one since I have so much scar tissue. The scar tissue is also affecting the arachnoid lining. He said if I had one implanted, he would bet his practice I would end up having it removed in 4 months. Has any Dr talked to you about scar tissue in your back? Granulation is sometimes a term used on a MRI report...to identify scar tissue.

I hope someone else can contribute to this question. It would be great to hear from someone who has one to see if it has helped them.

Mum
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Avatar_m_tn
I had one implanted in 2005.It worked for 5 years faithfully,and then it started burning so bad I wanted out so bad. The Dr. kept saying, have it adjusted. I had it adjusted at least ten times. Then I demanded it removed June of 2010. I immediately felt better. This disease is so unpredictable.It moves around until it drives you bonkers! Mental attitude depends on how much pain I can handle. Thanks.
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Avatar_f_tn
Hi, Sorry you're having such a bad time. I was offered one many years ago, soon after diagnosis, but I turned it down because it seemed so permanent. You don't say what meds you're on. I take amitriptyline 50mg at night, which not only helps me to sleep, it also is very good for the burning pain in legs and feet. I take baclofen which stops my leg muscles going into spasm and twisting my legs round. I'm also on fentanyl patches, 50 microg, which make a really big difference. I'm 61 now, so maybe they think I'm old enough to have the final answer in painkillers! I also take green-lipped mussel supplement which really helps with the stiffness. I can't take much in the way of non-steroidal anti-inflammatory drugs because I've also got Crohn's. Lastly, I have chiropractic treatment which keeps my vertebrae aligned and really helps with pain. I hope you find something good soon, and in the meantime, try distraction - music, reading, writing, whatever floats your boat. Good luck!
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