Health Organization for Pudendal Education

Hey there gang, my name is gregg and i am from philly, i have been suffering with this for over 18 months...i had an mri with dr potter in early feb 2011, it showed scarring in the perineal branches of the pudendal nerve as well as scarring on the inferior branches of alcocks canal...and the scarring on the perineal branches goes to the dorsal nerve of the penis bilaterally. I have read many of the posts on this thread, my take is that, first, pn is quite complex, and it is true that we may have all different reasons for it, celeste had ligamentous reasons, i have scarring, and not ligamentous reasons, etc...from what i have heard, and ali pasha has been a big help, he has never said to me to not go to houston or france, he just told me that hibner is learning how to save the ligament with repair, secure the nerve so that further scarring does not take place, and eliminate the scar tissue present. It sounds logical to me to have those things occur along with the dorsal release, because i have that as well as dr potter found on my mri.

Everyone can have there opinion, but here is the deal with ligaments, i have played hockey for almost a decade, and football for 7 years, i have fallen many times, and have labral tears in both hips, i have tried a procedure called prolotherapy, which stengthens ligamentous structures, ali is correct that the ligaments are extremely important, as i played with someone who had the prolo into his low back, and avoided a microdiscectomy because the prolo strengthened the ligaments. Ligaments connect bone to bone, tendons, bone to muscle. In my opinion, we all have weak connective tissue, hence the entrappment or scarring. Without connective tissue we would fall to pieces so it is incorrect to say that cutting the ST ligament is fine, it is not fine, it may be ok for some, but you eventually could pay a price down the road in the future. Case in point, i had suffered a concussion, and had a subdural hematoma, the doctor said, you can either have it surgically removed or wait to see if it gets absorbed back in 1998. I did the surgery and they severed the tendon which connects the TMJ to the jaw from my head in order to get to the skull. The tendon is now full of scar tissue, hardened, and i get horrible migraines as a result, plus its a weak region now for me....so my point is that we can use certain approaches to end this god-awful pne which we all suffer, but i must agree with alipasha that we need to save the ligaments regardless of how many people may claim that they are ok after the ST ligament was cut and never repaired...ligaments provide stability....if you have it severed, you may not feel it now, like i did not feel the migraines in 1998, but i sure felt them in 2002, and ever since. So for the greatest good, we need to save ligaments...to cure headaches, we do not cut off the head:) Also, we need surgeons to use the collagen wrap to prevent more scar tissue....scarred down nerves will cause pain, if a doctor has learned how to prevent that from happening, it is a huge help. I am from philly, and dr meyers (he operated on donovan mcnabb) said to me that he had done everything he could to leave ligaments intact as well as using certain knives to lessen scar tissue so that mcnabb could play and finish his career. I think we all need to be on the same page, and recognize our commonalities, because only together, unified, will we win this war vs. PNE, we are not fighting for doctors, we are united fighting for us against a silent enemy which robs us of our lives and vitality, usually in the greatest years of our lives, i am 37. I am sure all of the doctors are great for whoever they help, celeste can enjoy the houston team, greg t can like the french team and ali can like hibner, i personally, as a former athlete know i need a surgeon who does not help one area and weaken another.....if a doctor is able to save my ligaments, limit scar tissue reforming, i am all in for that....never loose sight of who we all are fighting...PNE, not each other. Stay unified, share information, and i disagree with celeste, the forum provides great information, and with that, the hope for a cure.. if it was not for ali, i would not have gotten my mri protocol from potter....this forum gives hope, which will lead to a cure without sacrificing other bodily functions now or in the distant future. I pray for everyone...i want my life back, i am facing two hip surgeries, and possible pne surgery....if anyone out there can help me, please share it, and i will do the same, our enemy is PNE, together, we can't lose!

Greg, in answer to your question about what gets edited out and what is offensive, you can read our code of conduct. http://www.pudendalhope.info/forum/view ... p?f=3&t=24

The only items edited out were some statements made about another person (a forum member) and I'm not going to repeat them here.

You can also read this previous announcement about moderators moving posts. http://www.pudendalhope.info/forum/view ... ?f=3&t=961

GregT wrote: I have...heard this from some tipna members, that you dare not mention anything positive about the traditional TG surgery on "hope" or you'll somehow be dogged or the post will be modified. Not having spent a lot of time on hope myself, I can't point them out to you. But, I have no reason not to trust the members of tipna who also participate on hope.

Are you saying that we have not allowed Celeste or anyone else to say anything positive about the Houston team or that we have not allowed Charlie to say anything positive about the traditional TG surgery? Who are these members who are being dogged? Is there anyone who can confirm that what Greg is saying is true -- that we "dog" people who say anything positive about the TG approach or that we modify posts about the traditional TG surgery?

If you are going to make these kinds of statements, Greg, don't you think you back them up with some evidence?

Violet, I have felt dogged by you. After I have posted about my experiences, there have been times here where you have posted to say that my experience is not typical or that my problem was different from that of others. I sometimes feel that you are asking people not to believe me by putting out a disclaimer of sorts.

Celeste wrote:there have been times here where you have posted to say that my experience is not typical or that my problem was different from that of others. I sometimes feel that you are asking people not to believe me by putting out a disclaimer of sorts.

Hi Celeste,
I understand what you're saying and I don't think Violet's the only one who may have said your experience isn't typical. I can't speak for anyone else but I never thought of it negative terms or that you shouldn't be believed. I took it more like you were a miracle! From what I've observed, your recovery was quicker and went a little more smoothly than most others. Additionally, it's not typical to have someone who was literally CURED stick around on the forums. You are an exception to the norm and I mean that in the most positive way. Besides myself, I know other members have expressed their sincere gratitude to you for sharing your experience, knowledge and time. You've selflessly stuck with us! "Not credible" just isn't something I would think to attach to you. I think the animosity between you and Ali is very sad and I wish it weren't the case. You're both valued, major contributors to this community and greatly respected. You're "untypical" situation is an inspiration that cures really can happen and lengthy, dibilitating recoveries aren't in the cards for everyone.
Warmest of regards,
Karyn

This is the last post from TIPNA started by Greg T called "What's going on Pudendal.Hope."

Celeste
Joined: Tue Mar 23, 2004 4:13 pm
Posts: 2701
Re: What's going on on pudendalhope.com
GregT wrote:
Ali has used my wife's name (where he even got that from I don't know) on a thread where using her name had nothing whatsoever to do with the thread.


It's surprising what you can find with some light internet stalking. I googled your name and address (which you've posted here) just now, and your wife's name came up.

It's actually quite hostile and intimidating to try to show that you think you know private information about somebody. Threatening you was terrorism. You have to wonder how messed up in the head somebody is to behave like that.

_________________
PNE from childbirth, 5/2002. Left side PNLMT 5.2, left side TG surgery 6/30/04, Houston.
Thickened SS and ST ligaments were grown together, encasing the nerve.

I'm cured. I hope you will be, too.

Wed Mar 02, 2011 12:28 pm

Celeste,
Since you are well ware that I am a Muslim from Facebook and you know my true name,you deliberately used the word "terrorism" to associate with that post.This is indeed a grave crime and that depicts your cheap,uneducated,low-class tactics.Your tactics won't intimidate me at all and never even try to use such analogies in the future.Anybody who has talked to me or met me in real life will laugh at your face if you are going to call me "mentally disturbed". Consider it a warning from me because I will take legal action against you.

Like Greg (above posted) not Greg T,I am a strong believer of ligament preservation of the Sacrotuberous ligament or repairing it with Cadavers like Dr. Bautrant,Dr. Hibner,Dr. Mark Conway,Dr. Antalok,Dr. Beco,Dr. Shafik and Dr. Marvel do. I have heard too many sad stories about people loosing their ligaments and I will not shy away to say again that "ligaments especially the Sacrotuberous ligament" is very important for Pelvic stability and poses a high risk of Pelvic instability if they are severed.It's not my opinion but the opinion of the above mentioned PNE experts as well as many other doctors.

Thank God I left posting on TIPNA because of you and Greg T and I am a proud member of HOPE, and my religious beliefs have nothing to do with the ligaments which is point of contention between you, Greg T and I.Infact, it a point of contention between the Houston team,Nantes(Professor Robert) vs Dr. Bautrant,Dr. Hibner,Dr. Antalok,Dr. Conway,Dr. Beco,Dr. Shafik,Dr. Jerome Wise,Dr. Marvel as well as a many patients themselves.I did take a huge part in that Sacrotuberous ligament debate but that doesn't mean that it's my Personal belief only which wass driving the debate.I am just a patient who needs a cure to lead my normal life again and who has suffered enough.


As far as Greg T information is concerned,he told me himself and all his life story and his wife's name.He also told me before going to Aix En Provence that at least you don't have to worry about developing SIJD issues because Dr. Bautrant won't sever your Sacrotuberous ligament.
However,it wasn't wise of me to take his wife's name in public and I publically apologise to Greg T for that.
I guess it was the spur of the moment in the heated debate about ligaments.

As the wise Gregg said above that we aren't the enemy of each other,but the real enemy is PNE which has destroyed the lives
of so many of us.

All the best ,
Ali

Hi Grerichm,
I just wanted to acknowledge your insightful, thoughtful post. I agree with you that there should be no enemies here. Our enemy is PNE.
So, you've got a lot going on. Is your first course of action going to be the hips?
I wish you the very best for complete healing!
Warm regards,
Karyn

Ali, stop trying to terrorize people with the private and personal things you have very blatantly posted on the forums in the intent to intimidate others, and no one can ever think ill of you. It's just that simple. Apologizing after the fact is not the same as having the high moral character to never do it in the first place. The hammer forgets; the nail remembers.

Considering that you posted some absolute lies about me and my recovery when you didn't have anything truthful to make your case that I should not be believed, I could just as easily bring a lawsuit against you. So try to improve your behavior and get along. That's all that anyone asks of you. The sad part is that you must be asked continually.

I have stated what needs to be stated.

I have stated what needs to be stated, too. If you emotionally abuse people like you do, no one is going to think you are great.

I am not looking for greatness .I am looking to get well and get cured and lead a normal life again like everybody else on the forum.