Health Organization for Pudendal Education

So yes, after 8 years of pain, and 7 years of hesitation, I took the plunge and had surgery.
My symptoms evolved but essentially it is genital pain, tension in the adductor and perineum, and numbness in the toes. All of it one sided. I was told by David Wise to never have the surgery and that I would be impacted negatively for the rest of my life. I was also strongly discouraged by the PT staff at Dr.Weiss' office back in 2004. I had approximately 100 sessions of PT in 18 months. That did not make a difference.
From the time I realized PT was not going to cure me until early this year I was quite undecided as the pain would change quite a bit and I always had the hope It may eventually go away. At times it was terrible and during one of those periods I quit my full time job back in 2008.
I did try all kinds of bizarre alternative treatments but I won't bore you with that...
In January of this year I had life threatening blood clots (DVT) on the same side as my pudendal pain because my muscles were spasming and constantly squeezing some veins. The pudendal pain increased tremendously and while my mornings were tolerable, I was virtually unable to function later in the day. I had to completely stop my part time consulting work. I finally made an appointment with Dr.Aaron Filler in Santa Monica and I had the MRN.
The MRN showed an inflammed pudendal nerve at the level of the alcock canal. Dr.Filler showed me the MRN and even I, a layperson, could tell how asymmetric my pelvis looked. It also showed a flattened piriformis muscle on the affected side. Interestingly enough, I had a MRI with and without contrast shortly after and their study found the same muscular and alcock abnormality.
I had the nerve blocks in June that gave me some pain relief for about 30 minutes but then my piriformis started acting and spasming. This gave Dr.Filler a hint that there was piriformis involvement.
So I had surgery 4 weeks ago. The surgery lasted 3 hours. It was a TG surgery. The ligaments were left intact (but Dr.Filler has no hesitation cutting them if necessary).
Dr.Filler very nicely waited for me to wake up after surgery to give me an update late at night and also came on Saturday afternoon to visit and see how I was doing. He took time to answer all my questions.
The bottom like is that I was very much entrapped at the alcock canal. Dr.Filler says that he has never seen as much fibrosis or connective tissue around the pudendal nerve. He also noticed a congenital abnormality where a bundle of blood vessels were squeezing the pudendal nerve. He also carved the piriformis and checked the obturator nerve.
internus nerve. The next day I had about 20 hours of complete pain relief (except for the incision evidently). It was very unreal. Then the pudendal nerve started screaming. My toes are not numb anymore and I do not feel the perineum pain. The genital pain is very strong at the moment.
The fibrosis and bundle around the nerve also explain why PT is absolutely unable to address situations like mine. There is no way you can manually break the fibrosis and that without even considering the bundle of blood vessels. The extremely dense fibrosis may explain why nerve blocks were never very successful.

The surgery was not as expensive as expected. If you let Dr.Filler's staff know that you are paying yourself, they will give you a reasonable price break and book your surgery in a much cheaper hospital (mine was at the Olympia medical center which was great and a fraction of the cost some of the hospitals charge).

I am in recovery mode. taking short walks and swimming. I am completely functional at this point. The muscular problems seem to have completely resolved. The only problem is very severe nerve pain (the pain is constant now and is not dependent on position as in the past even if I sit). I am told it is to be expected as the nerve was scraped and freed from the fibrosis.

Thanks for this giant update, Ezer! I wish you every kind of healing there is; you've been in it for the long haul, and you've been through so much. I hope today is a really good one for you!

HI Ezer!
Thanks so much for sharing your story with us! I sincerely wish a full recovery for you. It seems that Dr. Filler was very involved and supportive with your care. I'm so glad that you've finally been treated appropriately. I'm hoping the nerve pain will calm down for you within the next few weeks. Does Dr. Filler wrap the nerves?
Warmest regards,
Karyn

Thanks for the update ezer & I hope your pain starts to reduce soon. Were you given any kind of an expected / average time frame, for the nerve to recover from the scraping?
Any idea what caused this? Was the root cause the original congenital abnormality involving the blood vessels? Of course many people never figure out a root cause but it always intrigues me to hear about what pathology was found an trace it back to its source.
Everybody is so different; I hate to hear the kind of absolutes you got from David Wise & Dr. Weiss. To me, when they tell everybody not to get surgery, or any other kind of absolute, right there it shows them out for what they really are. I can't imagine how much cash you must have dropped on them. I think of Dr. Filler as pricey but for you it sounds like a drop in the bucket.
Feel better!

Thanks for the well wishes. Good questions.
Yes, Dr.Filler uses nervewrap. He feels that he has made significant progress in the last 3 years as he is taking care of the obturator nerve and carving the piriformis if necessary. It is a laparoscopic procedure but he uses a TG approach. He says that he can see the nerve from the ischial spine to the alcock canal and he slowly decompresses the nerve in its integrality. The incision is on my back but I can feel 3 holes.
Like Dr.Bautrant he has an assistant that constantly measures nerve conduction. I was covered with electrodes.

The MRN showed that I am mildly entrapped on the asymptomatic side also but I do not feel any pain. I probably have the same bundle of blood vessels around my P nerve too and who knows it may become painful one day also.

I was told to expect the nerve to stop screaming after 2-3 months. The nerve is not transposed but it is scraped and a good chunk of the myelin sheath has been affected and needs to regenerate.
There was no single incident that triggered this PN problem. In the military I was in a mountain troop (In Europe) that did a lot of skying with inadequate equipment and with very heavy loads on my back. I fell a lot. I also enjoyed biking in the alps.
Then in 2000, I fell on a wet marble floor. I had mild perineal pain after that. In 2002, I was in an over chlorinated hot tube that burnt my skin. My nerves went is some sort of tetanization (probably an allergic reaction) and when that stopped I was left with strong PN pain on one side.
Probably the last incident was the last straw that pushed it over the edge.
I know some people found Dr.Filler cold but he was very attentive. He is passionate by his field and will gladly inform you. Just don't expect small talk about the weather! I am okay with that.

Hi Ezer!
Gee, it sounds as though you may be correct about the cause(s) of your entrapment.

ezer wrote:There was no single incident that triggered this PN problem. In the military I was in a mountain troop (In Europe) that did a lot of skying with inadequate equipment and with very heavy loads on my back. I fell a lot. I also enjoyed biking in the alps.

It's kind of funny (well, not really, but ...) when we take these falls or are carrying heavy loads, the average person just doesn't think "traumatic injury". Most, myself included, are thinking, "oh, it'll go away".

ezer wrote:Then in 2000, I fell on a wet marble floor.

OK, that one had me cringing.
And I'm so sorry about the burn event! What does "tetanization" mean?
So, what's up with your follow-up care? Is Dr. Filler providing it for you? Does he also prescribe a pain pump?
I'm hoping today is a little better than yesterday, for you.
Warm regards,
Karyn

I mean by tetanization (and it is probably not the correct word in this context) a convulsion of my nervous system.
I burned from head to toes from the over chlorinated tub and interestingly enough I had bilateral pudendal pain briefly while that lasted. Dr.Filler and Dr.Weiss believe that an inflamed nerve gets thicker and shorter and gets more easily stuck if a predisposition exists.
In terms of care, I got opoids, Lyrica, and a steroid pack to reduce the inflammation.
I am advised to not stay in bed or stay still too long but instead to slowly resume my life.

I did not find Dr. Filler to be cold either, but of course I have come to think the world of any Doctor who does not look at me like I am some kind of crazy hypochondriac drug seeker.
The falls / trauma I understand - The overly chlorinated hot tub is intriguing because I also have heard people on the interstitial cystitis board say their troubles started in the same way. I had always assumed this was some kind of direct insult to the bladder mucosa (which in retrospect does not make sense, since when you sit in a liquid, not much ascends even as far as the lower urethra). Your experience with this as a precipitating factor for other pelvic symptoms, has me totally fascinated about the possible mechanism of action...OK I sound like a total nerd, but I like this stuff and am having trouble figuring out how external chemical exposure is causing people to have pathology within the pelvis. Would love to hear theories.

HerMajesty wrote:I did not find Dr. Filler to be cold either, but of course I have come to think the world of any Doctor who does not look at me like I am some kind of crazy hypochondriac drug seeker.

Well said! And there is that great smile when they are done with you and start walking to the door.

HerMajesty wrote:The falls / trauma I understand - The overly chlorinated hot tub is intriguing because I also have heard people on the interstitial cystitis board say their troubles started in the same way. I had always assumed this was some kind of direct insult to the bladder mucosa (which in retrospect does not make sense, since when you sit in a liquid, not much ascends even as far as the lower urethra). Your experience with this as a precipitating factor for other pelvic symptoms, has me totally fascinated about the possible mechanism of action...OK I sound like a total nerd, but I like this stuff and am having trouble figuring out how external chemical exposure is causing people to have pathology within the pelvis. Would love to hear theories.

Yes. Weird isn't it? The chemical burning pain was mostly located on the genitals during that tub incident. It burned my entire body but the genitals were on fire.
Of course I went to a clinic downtown. They looked like I was some sort of freak and told me to go buy some Tylenol. I always thought that if they had taken me seriously and prescribed oral steroids and adequate pain medication it would have prevented this nightmare.

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!