MYELIN SHEATH REGENERATION

[A's Mommy]

I had posted this on TIPNA as well, but thought I could get a response here too.

Dear friends,

I hope everyone had a warm and loving Thanksgiving.

I have read so many contradicting things about myelin sheath regeneration. I am assuming that if my nerve was compressed and entrapped (which it was; in scar tissue) that the nerve's myelin sheath was damaged as well.

I am experiencing electric shocks and jolts; sometimes stronger than pre-op. I know this is to be expected, as the nerve had tissue cut off it, was moved, transposed, wrapped, etc. I have read that the shocks and jolts could be part of the myelin sheath regenerating. I know I'm just barely a month out. I just have questions.

For those of you who've gone through the surgery (regardless of who the operating physician was) please tell me any info you might know about myelin sheath regeneration and electric shocks/jolts/tingles post op.

My best to you,

AM

[Karyn]

Hi AM!
I have no answer to your question, but it certainly does make sense. After all, aren't the nerves scraped to some degree to remove the scar tissue?
Maybe that's where the term "raw nerves" comes from?
Hugs,
Karyn

[ezer]

A's mommy,
I experience continuous burning pain. Pretty much the same as before surgery.

[catherine a]

Hi AM,

I did experience lots of shocks and tingles along with all the other weird and painful sensations that come with PNE. It's like an electrical cord with interruptions. I experienced these types of shocks for a very long time after surgery. Hard to say for how long as it seemed to settle with time.(probably a good 2 years.) 3 years after surgery I still get the odd firing shock through the vagina or rectum but they are very few and far between nowadays. Don't judge your recovery by the month, I ended up judging by the year.
Dr. Bautrant told me not to expect healing to really begin for about 12 months. In my case, he was correct. I didn't feel much change in pain levels for almost 18 months. I've come a long way since then. Take each day as it comes as no two days will be the same. I found that no two months were the same either. Do what you can to get you through the day and no more. This recovery cannot be rushed. I believe as the nerve recovers the myelin sheath surrounding the nerve will recover too. It is scary when these shocks hit and I do know that I experienced this type of shock years ago long before PN set in. I used to laugh along with my work colleagues whenever I jumped out of my seat. I didn't have a clue that it would be so serious later on. One nurse at the hospital told me she herself has these shocks in her rectum quite regularly and now that she's learning of PN she is more aware of what's causing it.
AM, I don't think you should worry about this too much as it will become less as time goes by.

Catherine

[acw]

Hi AM,

I have not had the pudendal decompression surgery, but do have some experience with nerve damage and regeneration, so thought I'd share some of my insight.

First of all, I believe that the myelin sheath is kind of like the insulation around the nerve fibre. It doesn't actually carry the signals, although degradation of it can cause problems with how the nerve conducts the signals. When the nerve is damaged, the myelin sheath provides the correct path for the nerve to follow as it regenerates.

I had nerve damage to my ilioinguinal nerve, to the point I was experiencing pain and the "electrical shock" feelings. Skipping the long story of lots of trials and errors, my eventual treatment was cryoablation of the nerve. This freezes and destroys the part of the nerve that conveys the signals, but actually leaves the outer sheath intact. I received about 7 months of complete relief. Then I started to experience some of the same symptoms again, most likely from the nerve regenerating and being able to send those signals again. Nine months after the first cryoablation, I had that procedure repeated. I think that's been almost 3 years ago now. By saving the myelin sheath, it may have spared me some complications that can arise from the whole thing being severed and not being able to regrow along the correct path. Hopefully the pain is a thing of the past for me, but I wouldn't hesitate to have the cryoablation repeated in the future if any symptoms come back. (And for the record, cryo is NOT an option for the pudendal nerve since it also controls motor function.)

In your case, I'm guessing that the myelin sheath may be okay (at least not too badly damaged) and what you are feeling is from the nerve fibre itself being being aggravated. Between being entrapped, then handled during the surgery, I'm not surprised that it's "acting up". Hopefully the decompression will allow the nerve to heal and regenerate as necessary, and that your symptoms will diminsh over time.

Take care,
Anita

[Violet M]

AM, after reading the PN forums for 6 years I can tell you it's very common to have shocks in the early months after surgery as the nerve regenerates. I experienced this, especially months 3 and 4 so hang in there and don't be too alarmed yet. I rarely get shocks anymore -- maybe once or twice a month I'll get a small one.