Ali's post above is simply another opportunity to combine my last name and my screen name so as to play around with my identity.
Violet, I do believe this is strike 3 for Ali.
Also, Ali learned from my PT (we went to the same PT) after he asked her if I limped when I walked that I did limp. So, when he states above to me "thanks for telling me that you limp", all he's really doing is now for the 5th time, trying to link the fact that I limp with my having my ligaments cut. Note that he does not mention "I'm sorry that I tried to act as though you limped because of the TG surgery", or "I'm sorry for trying to trick and scare others away from the trad'l TG surgery by giving the indication that you limped only because you had your ligaments cut. I'm sorry that I continue not to at least mention the fact that it is because you were born with muscular dystrophy."
But, let's all forgive Ali because he ends his posts with a nice and warm well wish. Let's omit the fact that he habitually lies.
For example, he stated in an earlier post that "I'm glad that I no longer participate on tipna", but now he reveals that it is because he has, indeed, been banned from tipna because of basically lying to the people of this forum and on the tipna forum, by using personal information of mine over and over on a forum where he knew that I didn't participate. Imagine the disgust when I came here a month or so ago only to see my full name in print and only days later to see my personal email address.
For those of you who are crying about how this thread has become a fight thread, you might want to try and put yourself into my position. When people have been nice and agreeable to Ali, he's nice back. But, when they disagree with him, notice the way he acts. Now imagine that your personal information has been included in many posts on a public forum only for the purpose of intimidation, only showing reckless care for others' personal information. Karyn, this is what I'd call "taunting" someone. Now, imagine that this same person is feeding you all medical information, information which many of you are all gulping down much like those with Jim Jones did.
Now again, Violet, why do you think that Ali posted my surgical report above? Was it because he believes there is valuable information in it? Of course not. He's doing it only to mention my full last name as many times as possible. Please do us all a favor and put this boy in time-out.
Greg
Surgery in Houston
Re: Surgery in Houston
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.
Re: Surgery in Houston
I am very grateful to both forums and like most people use both. I don't have an issue with either forum.
I think some disagreement on a forum is healthy and it certainly does not bother me. PNE is a terrible condition and we should be supportive to people once they have chosen a surgeon.
In regard to the ligaments there is no evidence which can prove causation between severing the ligaments and pelvic instability.
What I do find slightly perplexing is that the people who warn of the supposed dangers of cutting the ligaments then insist you should see Hibner. Well Hibner still cuts the ligaments. In fact he severs one and does not repair it.
There seems to be this assumption that the ST ligament repair is a proven technique. It is not. Ligament repair is not simple and certainly does not have a 100% success rate.
I am sure Hibner is a great Dr and everyone I know that has seen him rates him highly. However I think we need to reserve judgement on the success of his ligament repair.
I think some disagreement on a forum is healthy and it certainly does not bother me. PNE is a terrible condition and we should be supportive to people once they have chosen a surgeon.
In regard to the ligaments there is no evidence which can prove causation between severing the ligaments and pelvic instability.
What I do find slightly perplexing is that the people who warn of the supposed dangers of cutting the ligaments then insist you should see Hibner. Well Hibner still cuts the ligaments. In fact he severs one and does not repair it.
There seems to be this assumption that the ST ligament repair is a proven technique. It is not. Ligament repair is not simple and certainly does not have a 100% success rate.
http://www.wisegeek.com/how-do-doctors- ... aments.htmRepairing torn ligaments have posed a significant challenge for physicians in the past. Previous repairs, including grafting tissue, or placing artificial prostheses to replace ligaments, were relatively unsuccessful. Often patients would have to undergo multiple surgeries to maintain a repair, or would have to have prostheses replaced.
I am sure Hibner is a great Dr and everyone I know that has seen him rates him highly. However I think we need to reserve judgement on the success of his ligament repair.
Tried numerous medications as well as a long period of myofascial physical therapy combined with meditation/relaxation. My pelvic floor muscles are now normal and relaxed on exam ( confirmed by many Pelvic floor PTs) yet my pain remains the same. Also have intense leg pain. Deciding on next treatment.
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Re: Surgery in Houston
Hi Charlie,
Great to see you here as always...I assume that you saw at the end of the controversial locked ligament thread, that Dr's Antolak and Conway are repairing the ligaments with a methodology different from Dr. Hibner's? It is intriguing in that it does not involve grafting. It's always nice to have options.
Great to see you here as always...I assume that you saw at the end of the controversial locked ligament thread, that Dr's Antolak and Conway are repairing the ligaments with a methodology different from Dr. Hibner's? It is intriguing in that it does not involve grafting. It's always nice to have options.
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.
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.
Re: Surgery in Houston
And the enabling continues...............GregT wrote:Ali's post above is simply another opportunity to combine my last name and my screen name so as to play around with my identity.
Violet, I do believe this is strike 3 for Ali.
Also, Ali learned from my PT (we went to the same PT) after he asked her if I limped when I walked that I did limp. So, when he states above to me "thanks for telling me that you limp", all he's really doing is now for the 5th time, trying to link the fact that I limp with my having my ligaments cut. Note that he does not mention "I'm sorry that I tried to act as though you limped because of the TG surgery", or "I'm sorry for trying to trick and scare others away from the trad'l TG surgery by giving the indication that you limped only because you had your ligaments cut. I'm sorry that I continue not to at least mention the fact that it is because you were born with muscular dystrophy."
But, let's all forgive Ali because he ends his posts with a nice and warm well wish. Let's omit the fact that he habitually lies.
For example, he stated in an earlier post that "I'm glad that I no longer participate on tipna", but now he reveals that it is because he has, indeed, been banned from tipna because of basically lying to the people of this forum and on the tipna forum, by using personal information of mine over and over on a forum where he knew that I didn't participate. Imagine the disgust when I came here a month or so ago only to see my full name in print and only days later to see my personal email address.
For those of you who are crying about how this thread has become a fight thread, you might want to try and put yourself into my position. When people have been nice and agreeable to Ali, he's nice back. But, when they disagree with him, notice the way he acts. Now imagine that your personal information has been included in many posts on a public forum only for the purpose of intimidation, only showing reckless care for others' personal information. Karyn, this is what I'd call "taunting" someone. Now, imagine that this same person is feeding you all medical information, information which many of you are all gulping down much like those with Jim Jones did.
Now again, Violet, why do you think that Ali posted my surgical report above? Was it because he believes there is valuable information in it? Of course not. He's doing it only to mention my full last name as many times as possible. Please do us all a favor and put this boy in time-out.
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.
Re: Surgery in Houston
I did not notice this before your post. I agree it is good to have options. I just went back and read Karyns post regarding that technique. I have re posted it belowHerMajesty wrote:Hi Charlie,
Great to see you here as always...I assume that you saw at the end of the controversial locked ligament thread, that Dr's Antolak and Conway are repairing the ligaments with a methodology different from Dr. Hibner's? It is intriguing in that it does not involve grafting. It's always nice to have options.
To be honest I don't really understand how they are doing this. If the nerve is compressed by the ligaments how is it possible to free them without cutting them completely and just making a small slice in the ligaments? I am not saying they are doing anything wrong I just don't understand how they are doing it.I wanted to share something I learned yesterday about Dr. Antolaks & Dr. Conways TG approach in regards to the ST ligaments. They make a verticle, center slice to gain access. Dr. Conway informed me that by the time they're ready to sew you back up, the ligaments are already rejoining themselves. For extra insurance, they do stitch the incision, using dissolvable stitches. Is this right? Is this wrong? I don't know. I'm merely passing on information that was presented to me. Something else to ponder in the world of ligaments!
What I will say if you do have an entrapment at the ligament you have to do something to the ligaments to relieve the compression on the nerve.
Lets presume that severing the ligaments does cause instability. You still have the problem of these completely new, unproven techniques to repair the ST ligament. Hibner's statement on his own website does not suggest he is certain about this ligament repair.
Tried numerous medications as well as a long period of myofascial physical therapy combined with meditation/relaxation. My pelvic floor muscles are now normal and relaxed on exam ( confirmed by many Pelvic floor PTs) yet my pain remains the same. Also have intense leg pain. Deciding on next treatment.
Re: Surgery in Houston
I think what you're saying here, Charlie, is that by doing the decompression through the ST ligament in order to preserve it entirely, the nerve is decompressed from any tethering or fibrotic/scar tissue that may be around the nerve. But, if the compression was due to the mechanical action of one or both ligaments physically pressing down on them, they'll still remain. Correct? If transposition of the nerve is still done, then you're hoping that this plus the surgical decompressing was enough.Charlie wrote:To be honest I don't really understand how they are doing this. If the nerve is compressed by the ligaments how is it possible to free them without cutting them completely and just making a small slice in the ligaments? I am not saying they are doing anything wrong I just don't understand how they are doing it.I wanted to share something I learned yesterday about Dr. Antolaks & Dr. Conways TG approach in regards to the ST ligaments. They make a verticle, center slice to gain access. Dr. Conway informed me that by the time they're ready to sew you back up, the ligaments are already rejoining themselves. For extra insurance, they do stitch the incision, using dissolvable stitches. Is this right? Is this wrong? I don't know. I'm merely passing on information that was presented to me. Something else to ponder in the world of ligaments!
What I will say if you do have an entrapment at the ligament you have to do something to the ligaments to relieve the compression on the nerve.
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
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
Re: Surgery in Houston
Yes if the compression is caused by the ligaments pressing down on the nerve then I don't see how the pressure can be alleviated if the ligaments are not cut.Celeste wrote:
I think what you're saying here, Charlie, is that by doing the decompression through the ST ligament in order to preserve it entirely, the nerve is decompressed from any tethering or fibrotic/scar tissue that may be around the nerve. But, if the compression was due to the mechanical action of one or both ligaments physically pressing down on them, they'll still remain. Correct?
Last edited by Charlie on Mon Mar 07, 2011 2:14 am, edited 1 time in total.
Tried numerous medications as well as a long period of myofascial physical therapy combined with meditation/relaxation. My pelvic floor muscles are now normal and relaxed on exam ( confirmed by many Pelvic floor PTs) yet my pain remains the same. Also have intense leg pain. Deciding on next treatment.
Re: Surgery in Houston
Violet or any other moderator who'll listen,
Please delete the part of Ali's post which lists my surgical report (a page or so ago). As I mentioned in my PM to you, this is simply another way of Ali attempting to intimidate me by posting my personal information. As you stated, yes, my surgical report is available for people to read, but nowhere is it printed out as it is here. It never was intended to be displayed in public as it is here.
It has now been up about 16 hours after I last asked you about it. Obviously you aren't going to do anything ever about Ali's behavior, so would you please go and clean up behind him again and delete this post of his?
Thanks.
Greg (notice no last name used??????)
Please delete the part of Ali's post which lists my surgical report (a page or so ago). As I mentioned in my PM to you, this is simply another way of Ali attempting to intimidate me by posting my personal information. As you stated, yes, my surgical report is available for people to read, but nowhere is it printed out as it is here. It never was intended to be displayed in public as it is here.
It has now been up about 16 hours after I last asked you about it. Obviously you aren't going to do anything ever about Ali's behavior, so would you please go and clean up behind him again and delete this post of his?
Thanks.
Greg (notice no last name used??????)
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.
Re: Surgery in Houston
Greg, I did not realize anyone was playing around with your identity. You have signed your full name in the "welcome newbies" section on tipna where you are asking for donations. http://www.tipna.org/forum/viewtopic.php?f=15&t=411
You have posted your surgery report publicly on your website with your name on it. I fail to see how Ali has disclosed your identity but rather he was explaining that you disclosed your identity yourself. Nevertheless, if you do not wish to have your surgery report on this forum I will remove it.
Violet
You have posted your surgery report publicly on your website with your name on it. I fail to see how Ali has disclosed your identity but rather he was explaining that you disclosed your identity yourself. Nevertheless, if you do not wish to have your surgery report on this forum I will remove it.
Violet
Last edited by Violet M on Mon Mar 07, 2011 3:30 pm, edited 1 time in total.
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.
Re: Surgery in Houston
Honestly, the interaction between Greg and Ali could have taken place in a PM. Greg's surgical report has nothing to do with the thread's inital topic, surgery in Houston, so it's not really germane to the discussion. Obviously Ali made his point that he could find this information online, and obviously Greg is upset by it remaining. Is there any way to remove it so we can all just go forward?
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
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