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Old 12-28-2012, 12:05 PM #1
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Default Small Fiber Neuropathy from Epidural?

I'm currently trying to figure out the exact cause of my SFN so it can be treated better. I was burned about a year ago, much of the damage was directly on my tailbone, it was mostly a 2nd degree burn, but I think there were a few small 3rd spots. I have a melty scar over the area right now. The burn was caused during a Leep procedure (they cut out piece of precancerous cells from my cervix when I was knocked out getting endometriosis cut out). Because the pain was so bad, and my meds weren't working, they gave me a 3 day epidural. I had been assuming for a while the SFN was caused by the burn, but after talking to my GP, I'm now guessing it was caused by the epidural. My neurologist refuses to put blame on anything. Obviously I'm suing the hospital, and my lawyer wants to settle, but I need to know what's going on with my nerves first.

So I was burned 13 months ago, the SFN started in June/July. It creeped up my legs within a few weeks to where it was unbearable. I immediately started taking Gabapentin, which helped at the time. I got a blood test done, my B12 was a little low, I know it could be better, but it wasn't horrible (and yes, I know the new guidelines). My thyroid was low, but I've been on meds for a while now and fairly stable. My Endo confirmed my thyroid got worse because of the trauma, not that the SFN was caused by the hypothyroidism. I took both labs and charted my own blood tests to make sure I didn't have diabetes, my Endo says she wishes she had my blood sugar, it's perfect. I rarely drink, so it's not that either. This past year has been the worst in my life, and I know the stress has contributed to this.

Everything I can find on Neuropathy regarding Epidurals is based on people who've had them during childbirth. Yes, I had one 10 years ago when I had my daughter, but it was in only for a couple hours (3 hr labor thankfully). When I was burned the epidural was in me for 3 days, and it was off to the right just a smidge as one leg was totally dead, the other I could use a little and move myself enough to get comfortable.

The Gabapentin kind of petered out, so now I'm taking Oxcarbazepine. It seems to be working better, but it's not perfect. The cold is really taking more of a toll on my feet, if they're not warm then that's the worst.

The pain is on the bottom of my feet mostly, it kind of feels like I'm standing on pop rocks and soda, or a tens machine. Based on the nerve map, it's my S1, L4 and L5 (and maybe not so much S1).

I've asked my Neuro if the pain will get better, get worse, ever go away, etc and he says he doesn't know. That's one of the big issues I have right now, knowing if this is permanent or not. I've been checking out the PN forum for months, but wanted to ask anybody who has had to deal with an epidural or specific spine damage what their experiences have been.
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Old 12-28-2012, 05:29 PM #2
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Hi ~ I'm sorry you're dealing with this. It IS very painful and nasty. I sure wish you didn't have it.

I have nerve damage from surgery, and it's permanent unfortunately. I've had it for 27 years now - ugh - and I've tried lots of medications. I also was on Gabapentin and I HATED it. It made me gain 20 lbs of water, made me feel "loopy" and foggy all the time. I told my doc about it, and he put me on Topamax. I've been on that ever since. I don't have any side effects from it at all !! And I also don't have any PAIN or burning/tingling/zaps/etc. It works GREAT for me. I'm not saying that someone else wouldn't have any side effects. It's possible that they might. But if they can get rid of the burning, tingling and zaps, maybe its worth it, huh?

My feet ARE numb tho. That's just cause of the damage done during surgery. In the shower, I can't tell if the water is hot or cold. I get alot of cramps in my feet too. Plus I have severe sciatica. Usually the pain medication I'm on takes care of that -- I'm on Opana ER and Lyrica along with the Topamax, plus Cymbalta.

Anyway -- sometimes neuropathy is permanent and sometimes it's not. So if you've had it for about 1 1/2 yrs ago, I'd say it's probably permanent, but I'm NO DOCTOR so I can't say for sure. it could very easily heal itself, and go away. Only time will tell. Nerves heal themselves at the AVERAGE rate of one inch per month -- and when they heal it's not very comfortable, so some of what you feel COULD be healing !! The Lord only knows.

I wish you the very best. God bless and please take care. Hugs, Lee
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recovering alcoholic, sober since 7-29-93;severe depression; 2 open spinal surgeries; severe sciatica since 1986; epidurals; trigger points; myelograms; Rhizotomy; Racz procedure; spinal cord stimulator implant (and later removal); morphine pump trial (didn't work);now inoperable; lumpectomy; radiation; breast cancer survivor; heart attack; fibromyalgia; on disability.



Often the test of courage is not to die, but to live..
.................................................. ...............Orestes
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