Surgery in Houston

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Celeste
Posts: 574
Joined: Sat Sep 18, 2010 2:24 am
Location: central Ohio

Re: Surgery in Houston

Post by Celeste »

I hope you get well, too. I have always said that to everyone no matter what disagreement I have had with them, on Tipna, on Facebook, and here too.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.

I am cured. I hope you will be, too.

There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.

http://www.tipna.org
AliPasha1
Posts: 739
Joined: Fri Sep 17, 2010 2:35 pm
Location: New Orleans,Louisiana

Re: Surgery in Houston

Post by AliPasha1 »

Well maybe,I can say that I am cured too like you. :D But I doubt that it will ever happen.
Diagnosed for PNE by Dr. Jerome Weiss in June 2007.Started PT with Amy Stein in NYC.
PT for almost 3 years now without any results.
Pudendal Nerve blocks in August,2007 by Dr. Quesda left me with sitting pain.
Unilateral TIR approach with Dr. Bautrant on 18 Febuary,2010 with no major improvements and sitting is much worse.
MRI By Dr. Potter reveals nerve entrapment in the ST,AC and DN.
Dorsal Nerve Decompression surgery on April 8,2011
Redo surgery by Dr. Hibner on July 18,2011
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Celeste
Posts: 574
Joined: Sat Sep 18, 2010 2:24 am
Location: central Ohio

Re: Surgery in Houston

Post by Celeste »

AliPasha1 wrote:Well maybe,I can say that I am cured too like you. :D But I doubt that it will ever happen.
Maybe sometimes you doubt it, but because you're pursuing treatment I think you still have some hope. It's always too soon to give up.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.

I am cured. I hope you will be, too.

There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.

http://www.tipna.org
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Surgery in Houston

Post by Karyn »

AliPasha1 wrote:I am looking to get well and get cured and lead a normal life again like everybody else on the forum.
Celeste wrote:I hope you get well, too. I have always said that to everyone no matter what disagreement I have had with them, on Tipna, on Facebook, and here too.
AliPasha1 wrote:Well maybe,I can say that I am cured too like you. But I doubt that it will ever happen.
Celeste wrote:Maybe sometimes you doubt it, but because you're pursuing treatment I think you still have some hope. It's always too soon to give up.
:D I AM SO FREAKIN' PROUD OF BOTH OF YOU!!!! :D :cry: :D
It really does sound like you have the same goals at heart. Truce?!?!?!?
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: Surgery in Houston

Post by donstore »

I can feel the love. Fight the real enemy.
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
grerichm
Posts: 44
Joined: Sat Dec 11, 2010 5:41 am

Re: Surgery in Houston

Post by grerichm »

Hey karyn, it is my pleasure, we all suffer, everyone of us suffers, no one needs to be reminded of how we hurt, we've all been hurting, so its time to put our energy against the real enemy...PNE. My first course of action is the hips and we will see what that brings. thank you for your kind wishes,

i wish you the best for healing, and i will pray for all of us
Gregg

Karyn wrote: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
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GregT
Posts: 135
Joined: Mon Sep 20, 2010 6:51 am

Re: Surgery in Houston

Post by GregT »

Ali's post:
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.
Just wondering, Violet. Does Ali's post above fall within the Code of Conduct rules? Pay particular attention to the parts in bold. This, to me, is just another example of "hope" allowing Ali to get away with whatever he wants to say until someone has to point it out to you all.

Thus far, in my short dealings with "hope", he has typed my full name (for absolutely no reason whatsoever) in a post, my email address (for no reason other than to intimidate by exposing personal information), my wife's first name (for no reason other than to let me know that there are no boundaries he won't cross), he's said that "he could expose me" but he won't" (how I could be exposed is beyond me). This is yet another mode of cyber-stalking and very close to terrorizing someone simply because they oppose his viewpoints.

Let's see what else. He has openly lied 3-4 times about me, trying to connect my limp, which began when I was a teenager due to me having muscular dystrophy, to the fact that I had my ligaments cut and, God forbid, not reattached. To me, this is the behavior of someone who's simply not in his right mind. I know how bad it is for Ali given that he is alone, disabled, in pain, etc. I'm not as bad off as he is, surely, but I still don't divulge personal information about others who I disagree with, and I know more personal information about people with PN than probably anyone except the doctors. The idea to use this information against others simply has not and never will enter my mind. Perhaps because he has been coddled by this website as he has, this is what has allowed him to go so far beyond the normal boundaries. Has anyone ever committed such infractions as he has? Perhaps he needs a stern signal sent to him other than for all of you to continue to clean up after him? What exactly have you all ever done to him for all of the violations of your Code of Conduct rules that he has so blatantly violated?

I firmly realize that Ali's scare tactics related to the ligament issue along with his anointing Dr. Hibner as King of the PN doctors has done a bang-up job in winning over many people. It's not that hard to do this when you stretch the truth at every opportunity to better serve your agenda. But, I don't believe this is the way to sway people. In fact, I don't think that others should try and sway people with anything other than what you know as absolute truths. I believe that honesty, personal testimonials and real facts should be relied on rather than vague statements about "what could happen to you if you.............".

What Ali did to me was to basically try to shut me up by revealing a whole lot of personal information about me. Some words that come to mind might be "blackmailing" or "intimidation". And what a wonderful venue he was allowed to use, http://www.pudendalhope.info.

Greg
Had surgery in Nantes, France in 2001 with Professor Robert. I advocate physical therapy with PTs who specialize in the pelvic floor. I also advocate injections to help diagnose PN and I am in favor of having PN surgery to release the nerve when the diagnoses points to an entrapped nerve.
AliPasha1
Posts: 739
Joined: Fri Sep 17, 2010 2:35 pm
Location: New Orleans,Louisiana

Re: Surgery in Houston

Post by AliPasha1 »

Dear Greg,
I would have said the same thing on TIPNA if you hadn’t disabled my account there. That’s why I had to use the hope platform.However,it should be noted I had no intention of returning to TIPNA after my last post there several months ago in which I had indicated that it would be my last post on TIPNA because of all the bigotry on it.Only recently,It was brought to my attention by one of my friends what was being said about me and the HOPE moderators and naturally I felt inclined to reply but my account had already been disabled.
As far as your public information and your full name is concerned it is all over the board because you are the surgical co-coordinator of Professor Robert for North America and part of his organization and have been sending people there for ages. I only posted your information on hope because scaredgal wanted information regarding her inferior rectal nerve issue which Nantes has experience with. I am surprised that you didn’t take any notice of it because it had been there for months.
I am just attaching two proofs from TIPNA itself in which your full name is stated in your public Medical Report from Professor Robert and the second evidence also confirms that you work as a surgical co-coordinator for the Nantes team and hence part of their organization.And your information was already public for many years.There is no cyber-stalking per your claim.It also sheds light that you have worked in the interest of the Nantes team for many years since you are a part of his organizaton and that's why TIPNA is always skeptical to any new innovative modifications by any doctor or a different surgical approach like TIR approach.

1) Evidence#1
http://www.tipna.org/info/documents/Sur ... ibeaux.pdf

(Copy of Greg's surgery report has been removed by Moderator 3 per Greg's request)

2)Evidence#2
http://www.tipna.org/info/documents/ind ... cForLayman

Surgery Coordinators - GregT and JudyB
GregT is the coordinator for the Nantes surgery groups for North Americans. He has forged many important contacts in the PN community in the United-States as well.
JudyB is the coordinator for the Nantes surgery groups for Europeans. She is also very involved in issues related to PN primarily in Europe.

Is it the reason that you get so angry when his surgical approach is criticized, because you work for Professor Robert’s organization and that is your bread and butter?

As far as the "exposing statement"is concerned, I was just warning you that you were being a hypocrite when you yourself told me on the phone before I left for Aix En Provence that “ at least I don’t have to worry about SIJD with Dr. Bautrant’s TIR approach because he won’t sever your Sacrotuberous ligament”.

I had no idea that you limped and thank you once again for sharing it with the forum members.

I have already apologized to you in my previous email for taking your wife’s name because it was out of line.

As Karyn correctly pointed out that you come on Hope to create mischief and that is your only objective.

My enemy is still PNE and my objective is to become pain free and lead a normal life again. I have nothing to do with you and this is my last reply to you because it will go on and on in circles without any end.

I hope that you do find relief and your suffering ends.
All the best,
Ali
Last edited by AliPasha1 on Tue Mar 08, 2011 5:51 pm, edited 12 times in total.
Diagnosed for PNE by Dr. Jerome Weiss in June 2007.Started PT with Amy Stein in NYC.
PT for almost 3 years now without any results.
Pudendal Nerve blocks in August,2007 by Dr. Quesda left me with sitting pain.
Unilateral TIR approach with Dr. Bautrant on 18 Febuary,2010 with no major improvements and sitting is much worse.
MRI By Dr. Potter reveals nerve entrapment in the ST,AC and DN.
Dorsal Nerve Decompression surgery on April 8,2011
Redo surgery by Dr. Hibner on July 18,2011
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Violet M
Posts: 6778
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Surgery in Houston

Post by Violet M »

Celeste wrote: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.
I'm sorry, Celeste, I had no intentions of making you feel that way.

Actually, I am sorry everyone, that I have been distracted by this discussion. My real mission is to help people with PN, not to defend myself or the HOPE moderators from criticism.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Surgery in Houston

Post by HerMajesty »

I think this whole discussion distracts from the mission of helping people with PN. Many new people coming across this would be too intimidated to post on this forum, not by any particular individual but just because of the idea that this is a place where they might make some enemies and be publicly slammed or humiliated.
I think the moderators have been put on the defensive where maybe they feel like they have to appear "fair" by not deleting this thread. Greg has already stated clearly in the "USA" section that the Houston team has the most surgical cures, so that information is available to people browsing for PN Doctors. There is nothing else useful or factual in this thread as far as I can tell. It is a fight thread, as it was designed to be from the first post.
This forum and this website (I include its predecessor in this statement), have saved my butt (literally, I suppose, haha). Every success I have had so far in improving, have come at least indirectly from info I found on the old site. My plan of future care as it stands now, is based on information I found on this forum and its predecessor. So I would really like new people to feel welcome here.
I would also hate to see anyone "banned", I think you are all valuable members of this forum and would hate to lose any. It seems like those of you who do not get along are baiting each other, hoping to tease out an innapropriate comment. Please to each of you, just don't take the bait and avoid participating in the same threads together. So somebody makes a statement you don't like? The less you say, the sooner it will get buried under other posts til it is off the 1st page.
I admit this thread has been morbidly entertaining but it really does detract from the mission of this forum.
As my hippie mother has recorded on her %^$#@*&%! cell phone voicemail greeting, "Peace and Love to each of you" :?
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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