Health Organization for Pudendal Education

Greg, there were definitely more than 2 people on your forum who posted that they developed hypermobility or SI joint dysfunction/pain after TG surgery. I know people who have told me personally that they developed SI problems post TG surgery. I don't think people make these things up.

Violet, below is my quote where I used the number "2",

My quote:

Two things: A "surprising" number of people is a pretty ambiguous way to phrase it. Was it surprising that "two" people reported complications? How about 7 people? And, this is out of how many people who've had the TG surgery? You also have to measure this against how many people have been cured from the TG surgery.

My main point was that the phrase "a surprising number of people" is "a pretty ambiguous was to phrase it". And, I also used, for example, the number 7. My point was not that only 2 people complained about problems that may have been done to the ligaments, nor was 7 the number. It was simply that the phrase "a surprising number of people" was vague. And, while we're at it, "Surprising" to who? To Ali, the percentage of people he'd say that have experienced problems after having the traditional TG surgery might be 95%, but of course we know he'd be lying. In short, if you're going to give your estimate here, try using something other than "a surprising number", because it is simply vague. For someone who strongly believes in Professor Robert's surgery, 1 patient who has any post-surgery problems might be "surprising". I wasn't talking about the accuracy of YOUR numbers, because you gave no numbers or percentages. Again, I was simply talking about how non-quantitative your statement was.

If it wasn't a concern, why would 3 of the major TG surgeons in the US have developed and opted for a modified approach that spares the ST ligaments -- including Dr. Hibner, Dr. Conway, and Dr. Antolak? It's a fact that these three surgeons offer a modified TG approach to spare the ST ligament from being completely severed. It's not being negative to point out facts.

It is a fact that these 3 surgeons offer a modified TG surgical approach, but it is also a fact that by far the most surgeries in the U.S. by any one surgeon had been done by Dr. Ansell. If a surgeon wants to separate himself from Ansell and get people to come to him or her, he has to have a reason why they should come to them. They can't say that they have more successes than Dr. Ansell, nor can they say that they've done more surgeries than he has done. So, they can think of some changes that sound like they would make them a better choice than Ansell. This is not to say that they don't believe in these changes (or some of them), but I could surely see Antolak coming up with something different in order to attract patients to him solely for that reason. Back to Hibner, of his many changes (or innovations as he called them), Dr. Ansell, an accomplished Neurosurgeon (versus Hibner, an OB doctor) said that none of these innovations would have any positive effects on the surgery. I'm guessing that you remember the list of 4-5 of Hibner's changes. The only one that makes any sense would be the ligament issue. All of the other things are things that a neurosurgeon would know if they produce better results.

I don't believe in hiding information from people. Especially before surgery, I think most people want to know the facts. The fact is -- some people have said they developed hypermobility after having the ST ligaments severed during TG surgery.

Violet, you should know that more than anyone else, I don't believe in hiding information from people either. And, again, you've used a very vague term, this time "some people". I just think that people who think they are giving "facts" would try better to be factual. For example, "of the 1200 patients that Robert and Ansell have done the traditional TG surgery on, we know of 15 who have complained about pelvic weakness or instability or SIJD post-surgery". Now, I'm not saying that every one of these patients has come to any of the PN websites and spoken about this issue, but this statement is based on percentages based on some estimated number of people who've had problems from the TG surgery (non-modified) and it lists the total number (an estimate) of these surgeries that have been done. It's certainly better than bringing up such a potentially negative statement (Ali's comments earlier) yet not attempting at all to give some sort of accurate and honest percentages that someone has to experience these negative side effects.

You know, Ali would commonly use the term "high percentage" when talking about people having Robert's surgery and what percent would develop problems. It is because of this type of negative propaganda that I have to speak out so strongly. Just because something is called "new and improved" doesn't make it so, and just because someone says that a "high percentage of PN surgeries done using the traditional TG surgery develop pelvic instability or weakness, and/or hypermobility" also does not make it so.

It's not my opinion that people said that.

You're right, it is not your opinion. It is factual. But, of the few people you've heard from, how many people have had this surgery who have not complained about any of these problems? It's like not taking a medicine that can greatly help you because 2% of people experience some bad side effects. These "facts" have to be taken into context, don't you think?

It's not Ali's opinion.

Ali doesn't say things like "some people have complained about pelvic problems following PN surgery where the ligaments are cut". He says "a high percentage of patients who've had Professor Robert's (who he calls "the butcher") surgery have developed pelvic instability problems after surgery", so it's neither fact nor his opinion............it's a lie and one that I'm pretty sure you know is a lie.

I don't know if the TG surgery caused their hypermobility. People can conclude what they think makes sense and some patients concluded it was from their ligament being severed because they didn't have hypermobility or SI joint pain prior to that.

I realize it makes some people sad to read negative things on the forum but if we only allow success stories on this forum, we aren't going to have a realistic picture of what PN is like.

Of course I agree with you, Violet. I'm just stating that some level accuracy would be helpful, and that trying to instill fear into people because you (not YOU, but people in general) have an agenda is worse than pretty much anything someone can do.

If you are struggling with pain when you come on the forum and you are the only one who is still struggling when everyone else is doing great, that could make you feel pretty hopeless and alone. The great thing about this forum is the stories of people who have gone through a lot of pain but have continued to fight until they found what worked for them. People like Amanda, nyt, Lottanerve, Karyn, Catherine, Ezer, RJR, Hermajesty, and many, many more. There are some truly inspiring people on this forum.

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And, of course, I didn't say that there were no inspiring people on this forum. Chronicling everyone's ups and downs for a period of years is something that pretty much all of the PN websites/forums have done since the very first one back in 2001.

Positive Puppy,

I noticed that you had no comment for me regarding my post to you where I gave some context to Ali's irresponsible comments and I also encouraged you on your recovery. I don't hold that against you. You probably have no idea of who I am, I'm guessing. I don't post much here. I put in my 10 years of helping others. But, if you'd like to talk on the phone with a lady from Cincinnati who had a 100% cure from Dr. Ansell's traditional TG surgery (the one you had too) about 3-3.5 years ago, send me a PM and I'll get in touch with her on your behalf. You can ask her about her recovery, her lack of any side effects and her opinion of what surgery she thinks you should have had.

Greg

Hey, I'm loving this breath of fresh air! For the record, I had no problems during, or after, TG surgery. (I remain in pain because my nerve was severely compromised.)

Stephanie P wrote:Hey, I'm loving this breath of fresh air! For the record, I had no problems during, or after, TG surgery. (I remain in pain because my nerve was severely compromised.)

I think that you're in the minority, Stephanie. And, I think it's sad that my post is actually "a breath of fresh air" on this forum. Most of the people on here are so new, in the scheme of things, that I fear that they lack historical context.

Hi Greg
Firstly can I apologise for my lack of response I misread the post and didn't see PP above it and assumed it was not meant for me.Thank you for taking the time and trouble to help demystify TG surgery. I will confess reading the posts last week when I was in such pain really frightened me and made me feel that I'd made the wrong decision and it was inevitable I would develop further delibilating conditions. My surgery was performed in the UK Jan2014 under the care of Mr Wong who trained in nante under the guidance of the prof. I had been in such chronic pain since my hysterectomy June 2013 and after seeing numerous specialists who were clueless as to my condition I started to lose hope. I discovered by chance this forum and similar ones and PNE systems were my systems and the relief was overwhelming. I managed to get a quick diagnosis then surgery happened almost immediately leaving me little time to catch my breathe.
Thank you for your knowledge on this subject and putting things in perspective for me and others that have recently had TG surgery.
Like everyone I take one day at a time and record pain levels 1/10, still mainly on 8,9 and 10 but managing to swim and go for a walk! Not back disco dancing yet but remain very positive I will learn to adapt to this condition and have quality of life.
Are you recovered and pain free after 10 years, you must have helped loads of people over that period.
Again apologies for my silence I shall blame the tramadol for not reading post accurately.
Thank you for the kind offer of putting me in touch with the lady you mentioned I may take you up on that.
Kind regards

Hi Greg
You said on your last post to me that I didn't realise who you were? I don't know who anyone is I've just assumed we have all been effected by this condition? Are you in the medical profession as you really seem to know your stuff?

PP,

By "who I am", I just meant that you didn't know me from any other forum member. Yes, I did have surgery in Nantes, 2001, and yes, I've had some improvement, but combined with having muscular dystrophy and its effects, my health hasn't gotten well enough for me to be normal.

I went to physical therapy for several years after surgery. I really believe that it helped me a lot, but I also think that the surgery helped me too. Things just took time for me to experience improvements such as sitting much more comfortably than before surgery.

The debilitating effects of MD are now having a much greater effect on my life and health overall. Since my pain level from PN is not too high (I max out at about a 3-4 on the pain level from PN), it's MD that is going to effect me much more from here on.

Yes, I was sort of "somebody" on the old forums partly because I was there at the beginning and partly because I have a natural desire to help others. I helped organize many trips for people to have surgery with Professor Robert in Nantes for a few years. I still help a few people who want to have surgery with Robert. When I was sending groups of people over there, it was before Dr. Ansell and Hibner were doing surgeries for very long. Until they had a good number of surgeries under their belt, people still wanted to see Robert.

Anyway, I'll check out your PM (if that was you) and get back to you.

Greg

Awww, come on Greg, it seems to me you are the one who is pushing propaganda. When you come on pudendalhope and make the following statement, I think someone has to point out that it's just not true.

GregT wrote: If you'll note, there aren't any actual patients who claim that they suffered pelvic weakness and instability after having the TG surgery where the ligaments are cut.

Maybe you just forgot about that survey poll that was taken on tipna?

The number of patients who claimed to have pelvic stability or SI joint problems after traditional TG surgery on your former tipna forum survey poll was surprising to me personally. I can't tell you an exact number but it was about 50% of the patients who answered the survey poll that was on your forum. I remember the percentage because I added it up once and I was surprised by it. As I recall there were about 20 people who answered the survey but maybe someone else who saw the survey can weigh in on it. The point is, some people believe that pelvic instability is a possible complication of TG surgery. There aren't any studies one way or the other, so as with many things on these forums, these are just people posting their experiences. I don't have any axe to grind and I'm not trying to sway anyone towards any particular surgical approach. I just want the truth out.

If you search PierreQC's posts on this forum you will see that he posted he had problems. (He was one of the moderators on tipna.) Here's what Pierre said.

PierreQC wrote:Yes absolutely, in my case i would say that it does matter if you want to do sports after your surgery.

Look at the situation and use your logic. Try to figure out the pelvis without these ligaments.
Any shocks (like walking downhill) or rotation will eventually put too much stress on the remaining sacroilliac ligaments resulting in an anterior/posterior rotation of the pelvis. Living with a lax sacroilliac ligament can be as problematic as PNE. Your pain is in the anus and back of the buttock, lower back and feets instead of more forward and deep in the perineum. Exchanging one problem for another is not better.

P.S.: First post in 4 years. 60% better form PNE but SI pain increasing and causing me more and more trouble. Prolotherapy helped a bit but anyway none of the remaining ligmanets are in a position to replace the lost one even if they would be much stronger.

Christopher also posted that he had problems.

Christopher wrote: I have already had pudendal nerve release surgery and 8 years later have developed a horrific case of SI joint dysfunction. It is so bad I am bedridden with it. 

I don't know what to do.  I believe that the instability may be bad enough that it cannot be conservatively corrected. 

I have already had 3 sessions of prolotherapy that did nothing. 

Should I consider SI fixation/fusion?  I certainly don't WANT that surgery.  But u also don't want to be bedridden for the rest of my life either. 

I still have PN, too. In the form of bad rectal pain. 

Christopher 

Two other people have told me personally that they have had SI problems since TG surgery.

I hardly think Dr. Hibner has to come up with a modified TG approach to attract patients. Last I heard it takes months to get an appointment with him and it's been that way for years. It's inappropriate for you to attribute motives to physicians when you don't know why they modified the TG approach.

Despite some people posting that they have had SI problems post TG surgery, I would still consider having the TG approach if I were going to have PNE surgery. There are advantages and disadvantages to each approach. All I am asking is that people be told the truth. Whether it's 2% or whatever %, if it happens to you it's 100% for you.

BTW, it might surprise some of you to know that Greg and I are on friendly terms off the forum. Hi, Greg. Nice to hear you are doing OK.

Violet

I think I will book an app to see my surgeon and GP and catch this through with them and see what I can do to hopefully prevent further complications as I'm 12 weeks post TG surgery bit concerned. Like I say the surgeon categorically stated that the removal of both ligaments would not cause any problems with my core stability as this was one of the first questions I asked prior to surgery.
Greg without meaning to be sycophantic you sound like a lovely man and I'm sure the way you've helped and supported people in the past has had a real impact on their lives. I'm glad that over time the pain from PN has slowly improved though MD must be difficult to live with. I really hope you have a good support network around you.
Violet thanks for giving both sides, like you say this forum can't be all hearts and flowers but at least I have evidence to cite when I see surgeon. You and Greg are great sparing partners, most excitement I've had in months!!! Take care to you both.

Hear, hear, Positive Poppy!

Stephanie P wrote:Hear, hear, Positive Poppy!

I second, that!

Just wanted to do a shout out to Greg .. Hi there! It's nice to hear from you, again! I hope things are going well with you and that you drop in more often.

Kindest of regards,
Karyn