Surgery after 8 years

[ezer]

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.

That's a tough call. If a 3T MRI or MRN could diagnose an entrapment for sure, I would run away from Botox. I think my post Botox experience was actually much more severe than my current recovery from surgery. It was truly horrible for 3 months and then it slowly vanished.
Is Botox part of Dr.Hibner's protocol?

[A's Mommy]

That's a tough call. If a 3T MRI or MRN could diagnose an entrapment for sure, I would run away from Botox. I think my post Botox experience was actually much more severe than my current recovery from surgery. It was truly horrible for 3 months and then it slowly vanished.
Is Botox part of Dr.Hibner's protocol?

It is true that many people are reacting differently to the Botox. I do know that Dr. Hibner wanted me to try it before going to more nerve blocks and surgery. The reason behind this is because he explained to me that the symptoms of pudendal neuralgia and pelvic floor muscle spasm can be almost identical. Thus, with no "gold standard" for diagnosing an entrapment, he felt it was best to try this on me before pursuing more invasive routes. I did have the 3Tesla with Dr. Potter that showed scarring in various places around the pudendal nerves, and while Dr. Hibner and his radiologist, Dr. Kalinkin, were quite impressed with the results that she found, he still wanted me to try the Botox. But, I preface this by saying THIS WAS JUST ME. I know of a Hibner patient that just went out there for the first time and Loretta examined her. Her muscles were NOT hypertonic (in spasm) yet she still had pudendal pain. Dr. Hibner is not recommending Botox for her. So, I think I can say with confidence that I do not believe he is requiring Botox for everyone. I believe in this doctor. He truly looks at the patient from the "whole" standpoint. Every patient has a different history and has tried different things. He even told me himself that the clinical exam is much more important than any tests thus far in diagnosis a true pudendal neuralgia. What I mean by this is the patient's history and things they've tried. So, for patients that are considering Dr. Hibner, I would say rest assured that he will develop a unique plan of treatment specific to your history and symptoms. The most important part to remember is, that unless you are his patient, he can't really give out medical advice, can he? I know because I tried this before he ever first saw me and his staff said that I have to be a patient before he could review my case. I have heard the same things about Dr. Potter; many have inquired about getting at 3Tesla done by someone else and then having Dr. Potter read them. I simply do not know the rules of HIPAA or how those things operate, but I would assume that the case load of these physicians is such that they can only take care of patients that they personally have either examined or have performed tests on.

Hope this helps

[pianogal]

just to add on to why people can't get Dr. Potter to read other 3tesla mri's... I have the answer to that. They said she has a unique protocol of how to take the images.... like they are following the nerve, whereas someone else with the same machine won't be taking the images in the correct spots for PNE focus, they'll be imaging the pelvis, but in different locations along the pelvis. So... it was worth it to go there and have her do the imaging taking pictures in the right spots and then analyzing it.

[ezer]

Hey jimf11 (alias superuse, alias jm8911)
You copied and posted on the for profit and for pay male pelvic pain forum sections of my post reporting my surgery with Dr.Filler above. Then you commented by mocking Dr.Filler, mocking my choice of having surgery, and mocking my choice of words to describe what was done to me during the surgery.

In any event, if charles is "batman" it seems "robin" has done the logical thing after all else fails and gone out for PNE surgery with a certain Dr. in CA. (rhymes with "schiller"). Why in the world he would go with the one of the surgeons with what seems the worst rep on the forums and the reported bedside manner of an asphalt shingle is beyond me. Whether robin is a clever sockpuppet or a member of this forum influenced by "charlie" is open to question. If the latter he seemed to be someone truly trying to get up the gumption for the surgery. Some before and after recent surgery excerpts:

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.X a hint that there was piriformis involvement.


(dr X always seems to find piriformis involvement --jjf)

The bottom like is that I was very much entrapped at the alcock canal. Dr.X 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


"Carved???" ... well at least he is in the right frame of mind for what is going on. Anyway this fellow who was carved presumably left 15000 words of a 30000 word manifesto against Wise, involving amazon.com conspiracies, etc.... I guess Wise will have to start "carving" in order to get some respect from some.

One of the more recent patients of Dr X was bedridden, saw dr x's spiel on his MRN and imaging abilities and got the same piriformis etc etc stuff. 3 weeks after surgery the individual declared his surgery a failure, was actively looking for other surgeons , and after six or eight months (no improvement) was told by Dr. X to "get a job" (well after the $20000 check cleared I presume).

Oh joy
--jjf

First of all, I am sorry if my written English is inadequate. English is not my mother tongue. I learned English in High School (Ich spreche Deutsch, je parle Francais, Yeh Kami Farsi Baladam).
Secondly, I think that your post is deeply hurtful. You clearly derive great joy from surgery failure.

jimf11, I never mocked you on pudendal.info. I only wanted to start a polite debate with you. You so much promoted Wise that I started being a bit suspicious. I never understood your passion for the Stanford protocol and why you never told us about yourself. I looked into it as I had done the Stanford class and I found some rather unsavory details that I reported on the old forum. I stand by what I wrote but let's not reopen the subject.
I spent more than $20K on PT and the Stanford class. I did that protocol from 2004 to 2006. None of my Stanford classmates I stayed in touch with
got better. It is the truth. From 2006 on I was very undecided. it is only this year when the PN pain became intolerable that I decided to move ahead.

What did you want me to do? Isn't surgery a natural progression? Why are you mocking me and my decision on that close forum?
Why don't you come on this open forum to discuss your position instead of displaying your wit and literary talent over there?

[HerMajesty]

Sorry that happened to you ezer, the serious sicko's have been out in force lately

[LottaNerve]

Wow Ezer, I am sorry you are being singled out, and I just don't understand it.

We are all so different in our physiology and what works and doesn't work for each of us.

What we have in common is that we are all suffering.

If something is not working for us, and we decide to move in a different direction, why would that be any reason for another person to attack? We need to stand together in a spirit of compassion and helpfulness, not pick each other apart. Likewise we each have the right to express our opinion of OUR OWN EXPERIENCE. Why should that invite contempt or bullying?

I also attended the Headache in the Pelvis Clinic and was so hopeful that would be the answer. But it was another thing that did not help me, just as acupuncture and Eastern medicine did not help me - but nobody is attacking me for saying that and I hope that I am not opening myself up by saying it here. I also have stayed in touch with many in my group through email, and we have all reported a range of experiences. While no one says they are "cured," one attendee says he is helped by the relaxations quite a bit. Most, however, are pursuing other directions, such as further testing and discovery of back problems or digestive problems to pursuing PNE surgery.

I enjoyed that week at the Headache clinic, and the comraderie of being with others suffering with pelvic pain as I was. I learned a lot about breathing and relaxation meditation which is helpful for pain reduction.

The part that I find distressing in retrospect is that David Wise warned our group against ever having Pudendal Entrapment Surgery, and told us it made people worse. He called it "butchery" and said that people who have the surgery end up with instability of the pelvis so they can never walk correctly. He said people who have the surgery regret it for the rest of their lives.

I believed him, and felt that he had my best interests at heart. So for three years after the clinic I would not even read about the surgery. But my physical health continued to decline along with my emotional health. I became dangerously depressed, and asked my family for help. They supported me, taking me to more intensive physical therapy treatment, which involved botox and nerve blocks. I worked with some of the best PN specialists and physical therapists out there, but finally my doctor met with me and told me she thought it was my pudendal nerve causing the pain, not muscle tension or trigger points, and that further PT would not help.

At this point I was disabled and barely able to walk from the bedroom to the kitchen -- I was losing function in my left leg. I started reading in the pudendal nerve forums, especially the success stories. I communicated with a couple of people who said they were much improved after surgery, or even "cured." Was it possible? Did I have a chance? At this point I had nothing to lose, as I was already in bed, depressed, isolated and wondering why any human being had to live in such pain and despair.

Wow. I didn't mean to go on and on like this. I guess my purpose in writing this is just to say that we are ALL DIFFERENT, and none of us deserve the suffering that comes with this condition. It is stressful enough without being criticized, belittled, or attacked on a public forum. We need support and caring -- the kind of support which I have only found comes from one PNE'er to another. No matter how much my family loves me, they haven't been where we have been.

I resolve, even if I am made fun of or attacked for something I write about my treatment decisions, that I will refrain from any like-minded response and I will not let it scare me away from participating. I don't want to be afraid to post here -- I need you. I will do whatever I can do to preserve the harmony and caring that attracted me to this forum and the TIPNA forum in the first place. We need to keep our forums safe.
We need to BE HERE for the next suffering person who comes along.
With all my heart and sincerity,
Sharon

[Violet M]

Well said, Sharon. I couldn't agree with you more.

Ezer, sounds like Jim is not a member of a "support" group. It took some courage for you to report your surgery knowing that lurkers from another group might comment. I think the fact that you posted about your surgery proves that you are truly here to inform people, not to support a certain agenda or to hide anything. That takes courage and I commend you for it.

[ezer]

LottaNerve,
Beautiful post. Very well said and inspirational. It seems that we are on parallel paths. Ex-Wise, Ex-Weiss, and post-op now. Hopefully we will have good news to report in the near future. Meantime it is a tough ride I must say.

Violet,
Thanks for the support. I'll make sure to report accurately whether the outcome is positive or negative.

[KRISG]

Hi All,

In the end ...we all decide ourselves what to do ...and we should .
Every case is different as every pain is different . So it all comes down to :

How bad am I really ? What have I lost , and what do I still have ..And what do I have to loose if I do or on the other hand don't do this or that treatment .Only one person can answer this questions .Yourself .. Because ...in the end ... NOT doing a treatment is also choosing. Not choosing is also a choice . A choice from which you don't know if it is the best one .. and you never will !!!.

I can understand why people choose something or not . What I don't understand is why certain people want to force their opinions on something to others . I think if anyone want to try something, their choices should be respected by everyone else .
And that is exactly what this forum should do ...support people if they want to know some options they want to try , be very happy for them if it works , comfort them if it doesn't ...and do as much as possible to get more knowledge about the problem .

And I think posts like this only underline this ..

Thanks you all to report here .. ; yes even if it doesn't work !

Kris

[ezer]

Thanks Kris for your positive message. Absolutely we all need to make some tough decisions. This forum and Tipna also have been wonderful for their openness and the genuine kindness of their members.
I am overdue for an update. I am 6 weeks post op. The pain has increased but it is 100% nerve pain at this point. I do not feel the pelvic floor tension anymore.
To recap, I had almost 20 hours of pain relief after surgery (besides the incision that hurt of course) and then the nerve pain came suddenly.
For the next 2 weeks the pain was lower than pre-surgery. Now it is more intense, and I just have to be patient. The interesting part is that none of my "old tricks" work (handheld ultrasound, warm tub, ice, swimming etc...). I suffer from constant 24/7 pudendal nerve pain which is consistent with what Filler's RN told me to expect (the myelin sheath regenerating is extremely painful). On the plus side, my mild sciatica is gone and I can feel my toes again.
I take Lyrica and Percocet. I would say that the Lyrica is useless even at the maximum dosage. I was also prescribed Prednisolone to reduce the inflammation post surgery.
Apart from the persistent nerve pain, I am fully functional and I am back to doing the regular pick ups and drop offs like any parent.