Since this is my first post,, I;d like to share what they tried to slow the progression of my Neuropathy (sensory),, lets see,, Neurotin, Ultram,, actually those were for teh symptoms of it,, the actual cures tried were IVIG,, didnt help,, and the killer,, 3000mg of steroids over three days,, I had to drive myself to Pittsburgh for three days, after day three I had no clue who I was,, how I got there, or even how to go get home,, I made it home only to remember we had to drive to Philly to move my oldest son home,, I dont recall much of that weekend,, did it work?,, no, I think it came close to killing me
Then the Chiari operation,, there was some thought that the arm pain might be from teh Chiari I had,,, (8mm) descent,, so like a fool, I had the operation in Aug of 09,, sliced up the back of my neck,, part of my skull taken out,, dura opened and a patch put in,, recovery went welll until 2 weeks later when my sister came over to visit and found me laying on the floor screaming in pain,
They got me to Pittsburgh,, yep Menigitis,, back in the hospital,, wound infected,, chemical reaction to the patch,, treated with IV antibiotics,, told the nurse something was leaking from my neck,, she said it was sweat,, LOL,, I kept jamming that call button,, screaming,, something is coming out of my neck,, I knew what it was,, spinal fluid,,, back in the OR,, debride the infected wound,,, and of course it was MRSA,, replace the patch on my dura, and go home with a PICC line,, did any of this do any good,, ah,, no,,
so now i;m left with burning in the legs,, they kind of wobble,, have to wear PJ bottoms under my jeans,, cant tolerate the cold,, arms that burn 24/7,, hands that lost feeling,, drop things, cant stand even the slightest breeze blowing on me,,

Oh my, you have been thru the mill.

Sometimes I wonder if PN starts with a trauma to the nervous system. I had a high speed head on, and then Lyme...10 years later, I had PN. 2 fibers/mm left in the tibs. Then the wonderful autonomic neuropathy...ah yes.

On the bright side, I could kick some one in the butt and not feel it.

yes I have cycle shop LOL

speaking of trauma,, I dont know if it can cause it or not,, but there are days I want to do a header into a bridge abutment,, bet that would stop it,,

Oh, Wow.... that sounds like a nightmare.

Feel free to read here at your leisure, when you feel like it.

It really bothers me to read your experience. I attended a pain conference this Spring for medical professionals given by a
tertiary headache/neurology group and they were mentioning that the Chiari surgery should not be done unless extreme symptoms warrant it. They were seeing many patients at their special practice with increased head pain/headache.

So I sure do hope you get better. I'll be reading your posts!

My best wishes to you.

LOL.........SEEE I told ya they were smart folks!!!

I wonder if they do a dis-service with some of the medical shows. They had a segment on Chiari a few years ago.

Chiari can cause dysautonomia, which can be sooo disabling, no wonder people with dysautonomia try to fix it. I know with me, it is the source of most of my misery...the autonomic neuropathy that is. I feel like I live on Jupiter. Moving is a chore. I prefer to park myself and sit. That is so unlike me. I was never a tuffet sitter.

Wow, you have been through a lot, and although the folks here on this board are rather stoic, I would imagine they have been through a lot as well.

I am new here and have learned quite a lot about PN and AN from the members of this Board. I suffer from both PN and AN and have just been diagnosed after close to 20 years of not feeling good. I also suffer from some sort of autoimmune illness with arthritis, etc., and fibromyalgia.

I tend to agree with Cyclelops about PN being caused by some trauma to the system. With her it was a terrible auto accident. I can attribute my symptoms to a pneumonia illness. The pattern has changed a bit and that is what led to my diagnosis.

Hope you get some relief soon...

Mere

When a Incidential finding on a brain MRI said I had a Chiari, I thought for sure this was the source of my arm pain,, I knew then I had PN in the legs from the biopsy,, I never had teh headaches like a true Chiari,, but again,, I prayed this was the source of my problems, so off I went to the Neuros,, and they told me after a CINE MRI,, that I did have reduced flow , and they recommended that I have surgery but also said that it might not get rid of the arm pain,, they were right,, and now I;m left with a pretty good scar,, and worse for wear,, and your right,, unless your eyeballs are coming out of your head,, then never get the Chiari surgery,, I have seen people on other boards BEG for it,,

hit the post button,,, anyway,, cant tell temperature ,, have burnt myself in teh shower,, cant touch anything even remotely chilled,, my family thinks I;m nuts for wearing gloves in the house when I go to turn on the water on the kitchen faucet,, and they cant find the cause,, oh they toss out Sjygrons,, I dont think its that,,, Lupus,, Hmm,, I have no clue,, and systemic sclerois,, (scleroderma,),, now that makes some sense,, getting some nodules under my skin,, some weird rashes that a well known dermatolgist saw and said I have no clue,, heres some spray,, try that,, I might as well use clorox on the rash,, just about done driving,, cant feel pedals,, cant work,, no money coming in except for wifes paycheck,,I have no idea what the future holds,, its pretty scarry,,