Please welcome Bill Wallace of California. Bill has Arachnoiditis due to trauma. He welcomes your emails at bwallace_2000@yahoo.com.
Bill says:
"Suffered severe ski accident 1/1/09. Lucky I can walk but have significant arachnoiditis with brutal pain numbness and tightness. 2 questions; Does the severity of arachnoiditis change over time? Has anybody in your group rcvd pain relief from a spinal chord stimulator?"
Bill,
ReplyDeleteI'm Vada. I think I may be one of a very lucky few with this, but to answer your question, my L5/S1 disk ruptured in 11/1994, got not one but two idiot doctors who did not recognize the red flags of ruptured disk that needed immediate surgery because of Cauda Equina Syndrome. Anyway, been living with AA since then. The first 5 years were hell on earth. Then, I went on 2400mg/day Neurontin for the pain. On that for 4 years and it did relieve about 80% of the pain. Thought I'd gone from Hell to Heaven. After realizing (slow process) what the horrible, very scary side affects of this medicine were having on me, I decided I would no longer take it. I was so scared to go off the medicine because I didn't want the excruciating pain back. I have been relieved to find that MOST of the pain did not return; until I fell 2 years ago and re-injured the nerve root. In bed for 6 weeks with excruciating pain, had to use a walker and stool for shower because my legs didn't function well at all and the pain down my left leg had now an additional "glass shards" feeling around my knee -- in addition to all the other stuff. Pain meds I got didn't touch it. Told my doctor to prescribe the Neurontin again for only six months. That pretty much took care of the problem again and I was back to pre-fall mostly. In the last year the pain is increasing again, so now I'm investigating hypnosis/spinal neurotransmitter options. If I don't do anything at all, I'm in pretty good shape. But, if I do anything (clean house, cook a family meal, try to walk for more than a block or two, sit too long, stand too long), the pain is horrible and I'm hunched over with weak legs. I hope that you can take some comfort from the fact that my pain HAS gotten better -- because of the Neurontin. But, if you take it, be very careful of the side affects. I will no longer take this "class" of medicine (anti-seizure). However, my mother has taken just 1 a day for diabetic neuropathy and has not suffered the same affects. Good luck. Hope this gives you some hope.