Health Organization for Pudendal Education

pianogal wrote:I am so glad you had a positive experience with Dr. Filler and I hope your constant nerve pain truly goes away as the nerve heals. Hoping very good things for you!

Thank you pianogal! I am a bit puzzled by his published success rate. I did promise Celeste to report truthfully and accurately my experience so stay tuned! To be honest today was particularly miserable.

Hi Ezer,

It makes you cringe a bit to think of the nerve being scraped and it's no wonder you are having some miserable times. I think it is harder for the guys because it's a bit more difficult to get ice to the screaming areas. The swimming sounds like a great idea -- if you can stay in the cold water for a bit.

I love your mountain picture. Wouldn't it be nice if you could just go sit in a snowbank in the mountains for a while and freeze the bum? Seriously, I wish you all the best on your recovery.

Violet

what are dr fillers pubished success rates as mentioned in a post above?
Hilary

Ezer,

I am wondering if you have heard of taking alpha lipoic acid for regeneration of the myelin sheath or what Dr Filler thinks about it. I am also in early recovery and have added this to my supplements as a neurologist told a friend of mine to take it as she has nerve damage from hip replacement surgery. It does not actually say this on the bottle, it says "supports sugar metabolism". I did find one reference to it helping nerve regeneration online though.

Wishing you well in your recovery,
Jeanie

Jeanie,
Interesting that you mention ALA. A few years ago I read a German study about patients with peripheral neuropathy that were helped by ALA. I therefore took ALA for months and never experienced any improvement. I read more recently a study that ALA helps diabetic neuropathy but not any other types of peripheral neuropathies. So who knows.
I asked Filler's RN about taking vitamin B or ALA. The short answer is that they don't prevent you to take supplements but they don't encourage you either. They just say there are not enough well designed controlled studies showing benefits.
I was put on Lyrica and also got a Methylprednisolone pack to reduce inflammation.
I digress but I am now very suspicious of scientific studies. There is a tremendous [financial] pressure to always find "something" positive. You rarely see a paper saying that a treatment or medication does not work at all. Those studies are silently discarded.

I also wish you a prompt recovery. Let us know if ALA is helping.

hilary
If you look at the following link, it says 85-90% improved:
http://www.nervemed.com/pudendal-nerve- ... t-syndrome
In all fairness, they do follow you and I just sent my 2nd report. You do talk to Dr.Filler after 1 month, 6months, and 1 year.

Ezer, what form did the severe negative reaction from botox take? I developed severe fatigue after botox (said to be a 1:1000 event). I was housebound for two years and am still significantly restricted, although improving, at the three year mark. All the best with your recovery from surgery. Stephanie



Intermittent pudendal neuralgia, diagnosed as ischial bursitis, since 1985. Symptoms relentless following fall onto wet marble floor in 2003. Bi-lateral TG surgery in Nantes 2004 (PNMLT 5.7 and 8). No improvement.

Stephanie,
I am still not sure.
I was seeing Laura Fraser MPT over and over and it was groundhog day. Each time she would find the same trigger points. They would release and reappear a week later. So I discussed with her Botox (as Karen Wiesner was having great success with it and the (in)famous Dr.Ava was also positive about it) and she was somehow open to it, the goal being to go see her after the injections.
I made an appointment with Dr.Jordan. I had the injections at the clinic (adductor, obturator internus, levator ani, 200MU total) and when I walked back to the hotel I was feeling really great. That lasted 2 hours. Suddenly the pudendal pain came back with a rare intensity. I nearly passed out. I had to stay in the hotel until I was well enough to drive back to northern California.
I immediately went to see laura and she found out that while the muscles that had been injected had released very nicely, another set of muscles that were previously fine were taking the slack. My hamstring and piriformis for example were pulling hard.
So in all probability it was not an adverse reaction to the Botox (I think?) but those muscles were probably having a negative effect on my entrapped pudendal nerve at the alcock canal.
Four years ago, Botox was a little bit the cure all and since I have seen identical reports from pre-op patients. I really would advise pre-op patients to stay away from it.

Your reaction seem to have been horrible. I am just so sorry to hear about it. Can you tell us more? Who did the injections? Did it trigger CFS or Fibromyalgia?
Dr.Filler told me about reactions like yours and he is a bit hesitant to do those injections while it seems that 4 years ago every pain doctor was jumping on the bandwagon.

Your botox experience must have been ghastly, Ezer. For my part, I started experiencing feelings of extreme depletion (battery flat, plug pulled, totally out of juice, etc) about 24 hours after 100 iu into the pelvic floor. The symptoms intensified and I was readmitted to hospital 10 days later with query adrenal tumour. (This was in Australia: I'd traveled over from NZ). I felt ghastly, the worst I've felt in my life (BP sky high, sense of impending collapse). After 5 days I was discharged (provisional diagnosis 'deconditioning') feeling terrible and with no clear idea of the problem apart from some minor, and what proved to to be temporary, adrenal abnormalities of unknown origin. To cut a long story short, I lived as if on the edge of a physical cliff (i.e. collapse) for about 3 months, then settled into a state of profound depletion/fatigue. Some days I couldn't walk to the front door. I was told by a specialist that the 'fatigue' was akin to that of CFS, but the rest of the picture was not typical. The question of botox as the trigger arose - i.e. of the toxin leaving the site of injection - as rare cases of extreme long lasting and permanent fatigue/debility had been reported in admininstrations of 100 iu or more of botox. Last May I was interested to see the FDA issue a Black Box warning for botox. I can't help thinking there is yet more of the botox genie to come out of the bottle. You say that Dr Filler knows of reactions similar to mine?

I recently had Botox done intra-vaginally by Dr. Michael Hibner in Phoenix. While I was initially sore and flared for about 10 days, the flares subsided and now I am back at baseline. I was checked by his PT and she said the muscles did relax (left side injections only) but I still had the pudendal nerve pain. My right side (good side... if you could call it that) now feels significantly tighter than the left. I wonder if it's picking up the slack of the pelvic floor now? I notice this because I still use vaginal valium and when inserting it, the muscles on the right feel extremely tight like they are a board almost. Before the Botox, it was oppposite (left was like a board, right was fairly normal). I'm going to talk to Dr. H's office or Loretta about this and see if this is a common reaction when only one side of the pelvic floor is injected.

I initially (days 2-5 post botox) felt increased malaise and more druggy, but this also subsided. I am so sorry that you have had horrible experiences with Botox. However, I honestly have to say I am in agreement with Dr. H. If one does not truly have an entrapped nerve, I believe Botox could be of GREAT benefit, not only to reduce the pain and spasm, but "reset" the muscle memory of the pelvic floor. So, for those that are considering Botox before another operation, I say go for it.

Hi ezer,

Very intresting post !
I wish you all the best in your recovery .
Hold on ... This is the hardest part

Keep us informed ... please !!

Kris