Neuropathy

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Neuropathy

Postby bee40 » Fri Aug 19, 2011 1:24 pm

Hello, Does anyone have neuropathy from SM and or Chiari and have used anything for it like Neurotin?
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Re: Neuropathy

Postby dkg56 » Fri Aug 19, 2011 8:51 pm

I have neuropathy - presumably from CM (don't have SM) although the NL won't comfirm that, everything else has been ruled out (except so biopsy for small fiber neuropathy done). Dr. Heffez thinks due to CM. I am not taking anything. My Primary gave me an Rx for cymbalta for it, though I haven't taken it, too many side effects. the NL said she would prescribe Lyrica. For now, I am just dealing with it. It isn't getting better but I am getting more used to it. I can pretty much tolerate without too much thought the leg tingling now. My feet only burn off and on, and that is what really drives me crazy but I just don't want to start on the meds yet. I guess you know when you can't tolerate it anymore then you can try something. Sorry you are dealing with this, it is horrible, much worse that acute pain, this nerve pain is awful.
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Re: Neuropathy

Postby Kate456 » Fri Aug 19, 2011 9:06 pm

Same for me! I have constant burning in my feet and oftentimes hands and some other parts. I was decompressed last year and have a collapsed syrinx so we are all assuming I have permanent nerve damage in my spine. I have scripts for both Neurontin and Lyrica but haven't filled either one. I am also worried about side effects and long term use so I won't use them until I am desperate. I wish I could get a break from it-it is a miserable kind of pain. Nothing seems to help me but a lot of distraction!!!!! I am hopeful that the fall weather might bring a calmer period. I'm so sorry you have this also.
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Re: Neuropathy

Postby pseudotumor » Sun Aug 21, 2011 12:50 pm

I have neuropathy from my pfd surgery. He cut through my left occipital nerve and now the whole left side of my head is numb and painful like when your arm falls asleep from laying on it. If I turn my head right if feels like someones scalping me. I take 1200 mg of neurontin 3 x a day and am having a nerve block preformed on tuesday which will hopefully help.
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Re: Neuropathy

Postby lady 59 » Sun Aug 21, 2011 4:46 pm

Yes I've used nerotin and other stuff for relief from this pain. It (neurotin) helped for a while and then seems like I was on it so long it became ineffective. I tried lyrica but was allergic to that and now I'm taking zanaflex, which sorta helps but not enough. I just asked my nl if there was something else but he wants me to increase it for now and see how I do. There are side effects from everything they give you these days,so you can only try and see how it works for you!
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Re: Neuropathy

Postby Kate456 » Sun Aug 21, 2011 8:15 pm

Pseudotumor,

How long ago was your surgery? I have the same damage from the occipital nerve from PDF surgery. It caused awful head tenderness, total numbness, and pain. But, it is much, much better months later without any intervention.
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Re: Neuropathy

Postby jjames » Fri Aug 26, 2011 12:35 pm

Yes, I suffer from some neruopathy, and I am currently on neurontin. I am still trying to figure out the correct dose (have had to increase it a couple times) but it has helped with some of the burning/numbness.
~Everything is always ok in the end. If it's not, then it isn't the end.~

JJames
ACM/SM
1998 Decompression; 2007 PFR @ TCI
Syrinx C1-T10
Mild Scoliosis
Mom to two wonderful sons!
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Re: Neuropathy

Postby tennesseewalker » Fri Aug 26, 2011 3:17 pm

Hi bee40. I've been struggling with neuropathic pain for 5 years. Neurontin 3600mg/day was no help. After trying every med my NL could think of without success, I got a spinal cord stimulator. Finally, something that helps!

I hope you and your doctor can find that magic combination that works for you.
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: Neuropathy

Postby bee40 » Mon Aug 29, 2011 11:20 pm

Thanx everybody for all your comments, I know I am learning one thing and that is that doctors cant feel our pain and they arn't miracles workers.I guess I just have to keep finding ways to cope , so far in the last 3 months Ive seen a new family doctor, counseler who is teaching acupuncture without needles therapy called eft. She says I dont have to belive it for it to work?And tommorrow I'm seeing a psychiatrist , just saw my neurologist two days ago and he ordered brain and spine ct . I have a little girl and I want to be a Mom that isn't always stressed and worried if you know what I mean.Thank You everybody, God Bless....Debbie..Bee40
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Re: Neuropathy

Postby pseudotumor » Sat Sep 03, 2011 4:45 am

Kate,

Surgery was almost a month ago. Nerve block didn't work very much, and the neurontin def keeps the pain at bay a tiny bit because if I miss a dose, I certainly notice the difference. I'm glad yours went away after a few months so maybe I have that to look forward to. :P
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