Health Organization for Pudendal Education

I am old-school (read: old)...I was a Biology major before I ran out of money and went into nursing instead, and we were taught to go to an actual library and search the Abstracts, which are put out yearly and list all Biology-related Journal articles by subject, author name, etc.
I am pretty sure that the link you sent was to a subscription service that lets you pay to search the same thing online instead of heaven forbid going to a library and perhaps being exposed on the way to dangerous levels of Vitamin D If the links you sent work the same way, you would specify a year and look up "Hibner" and see whatever he published that year. I tend to think of internet info as incompletely catalogued and as an actual on-paper Abstract as the gold standard, but that probably has something to do with my age
I probably won't be digging for anything on Dr. Hibner because he doesn't figure into my future plan of care, but if I run across anything I'll let you know.

Charlie wrote: There is a a hypothesis been put out that :

Severing the ligaments leads to pelvic instability.

So I have said okay prove it and I am questioning the arguments for it. I am not saying I am right about anything. I don't have an advocacy position to take here....

The burden of proof lays with the person making the claim.

Hi Charlie.....it's me again.

So, who made this hypothesis? Severing the ligaments leads to pelvic instability. I certainly never did.

That would be similar to saying, "riding a bike leads to PNE" or "hysterectomies lead to PNE" or "lifting weights leads to PNE". But we all know not everyone who cycles, weight lifts, or has a hysterectomy gets PNE. So it's an incorrect hypothesis.

I think maybe a better hypothesis would be severing the ligaments may lead to pelvic instability in some people. That was my hypothesis. So, next I expect you will say, "prove it".

That's like asking someone who has a hysterectomy who wakes up with permanent PN pain to prove that the surgery caused her PN. She can't prove it, but to her it is very obvious.

Do you know what percent of people who smoke get lung cancer? It's less than 50%. Yet it is an accepted fact that smoking causes lung cancer. You don't have to have 100% of people develop SI problems after severing the ligament to support the hypothesis that severing the ligament may lead to pelvic instability in some people.

So, I think it's great that you are being a skeptic. It makes us all stop and think.

Violet M wrote:


Do you know what percent of people who smoke get lung cancer? It's less than 50%. Yet it is an accepted fact that smoking causes lung cancer. You don't have to have 100% of people develop SI problems after severing the ligament to support the hypothesis that severing the ligament may lead to pelvic instability in some people.

Yes but direct causation between smoking and cancer has been proven. Whereas the argument that the severing of the ligaments causes pelvic instability even in some people is still speculative.

Also with smoking the risk of cancer is not immediate. You don't smoke a cigarette and instantly start to get cancer, it can take years and years to develop and within that time people can die of other things. If a smoker lived till a 100 we might find the incidence of cancer was higher.

Whereas with the sacro tuberous ligament if it really is critical to function as has been claimed in this thread (not by yourself) patients should start to notice a change extremely soon after the operation. However the majority of people it would seem are not. Houston and France combined must have operated on well over a thousand people by now. I think if this operation led to a 50% incidence of pelvic instability forums such as this would be flooded with warnings. We could go by the small example on tipna but it is not a serious study and there is a problem with the sample as most people that recover will not check back into a forum. Even if we do go by that there is still a large percentage of people who do not get instability and no causation can be shown from it. There could be other factors at play here. As the science mantra goes - correlation does not imply causation.

For instance the Houston team have claimed that once they screened for pelvic instability issues before surgery no one has reported instability issues. Even before that only 2 patients apparently reported instability. I guess the counter to that is the Houston team are lying.

So I think we still have to say that even the argument that severing the ligaments leads to pelvic instability in some people is still speculative. Pointing to a 50% incidence from a very small sample on tipna is not enough. Even the scientists that found lots of people were developing cancer accepted that pointing to a correlation would not be enough. The cigarette companies turned around and said prove it.

That's like asking someone who has a hysterectomy who wakes up with permanent PN pain to prove that the surgery caused her PN. She can't prove it, but to her it is very obvious.

I accept that with the above example your right and often the simplest explanation can often be the right one , occams razor as I have seen it referred to on CSI, but there is still the annoying burden of proof to deal with and it cannot be ignored.

I have said repeatedly that I am no expert. Your better and made a good choice with your surgery and I respect that. I have also said a few times now that there have been some great arguments put forward and I am grateful. I share your concerns about the ligaments. However even after reading these arguments I think it is still speculation, not proof. As I have said Houston , Nantes and now the UK government must agree with that. I guess I am just incredulous at the possibility that these surgeons are performing such an irresponsible procedure.

I think we can say that there is a valid cause for concern that the severing of the ligaments creates instability but I don't think we can say that severing the ligaments creates pelvic instability in some people.

I want to stress that I really don't want to be seen as the person that is saying it is okay to sever the ligaments. In this thread I am playing devils advocate. I know you all know what devils advocate means but I did find the definition on wikipedia to be a perfect summary of what I am trying to do.

The purpose of such process is typically to test the quality of the original argument and identify weaknesses in its structure, and to use such information to either improve or abandon the original, opposing position.

The reason I am doing this is that I want to make the right decision for myself. I realize I am probably not exactly making new friends on this thread! However I just want to recover and find out as much as I can. I am genuinely worried about the ligaments as I realize that once they are gone, they are gone for good.

I don't know what to believe anymore with this condition as I have heard so many different theories on it over the years. I do often wonder why I not only had to get ill but also why I got such a controversial condition.

Charlie wrote:For instance the Houston team have claimed that once they screened for pelvic instability issues before surgery no one has reported instability issues. Even before that only 2 patients apparently reported instability. I guess the counter to that is the Houston team are lying.

So if you have pelvic instability issues the Houston team won't operate on you? It could be possible that the PNE is the source of your instability. Nerve pain causes muscle guarding and spasms which can cause poor body mechanics and compensation and result in pelvic instabilty. Once you fix the nerve (pain sourse) the pelvic instability could get better.

What's your background Charlie. Since you don't have a "signature" and I don't know you well, would you mind telling what you've tried and how you think you got PN?

Charlie wrote:I think we can say that there is a valid cause for concern that the severing of the ligaments creates instability but I don't think we can say that severing the ligaments creates pelvic instability in some people.

This comment is confusing to me. If we can say that there is a valid cause for concern that the severing of the ligaments creates instability then how can we not say the severing of the ligaments creates pelvic instability in some people? If it didn't cause instability in some people, would there be any valid cause for concern that the severing of the ligaments creates instability? If there had never been a post-op case of SIJD or other pelvic joint dysfunction where the ligaments were severed then why would there even be a cause for concern? Why would PNE doctors have different approaches to the ligament issue? Why would the Houston team screen for joint dysfunction? And why would we be having this debate on this thread? Maybe I am just misunderstanding what you are saying or am not thinking clearly.

I think it's good to weigh all pros and cons before haveing a MAJOR surgery like PNE decompression. I wish it was possible to personally visit all the PNE experts before making my decision, but unfortuantely I am not a millionaire. I do think in debating we all should watch the "tone" of our posts. I mean, we all have chronic pain here and really don't we want each other to be healed from this debilitating condition? By the way I am not aiming this at you, Charlie, but rather to everyone (myself included) who has posted on this thread. It's something we should remember before we post, no matter how mad we are. And believe me I am one who can get upset when the matter is something I am very passionate about, although I am not proud of it. I also think it's good that you have brought up the need to verify Dr. Hibner's practices. A lot of people on here think extremely highly of him (which is great) and I like what I've read about him and by him as well, but there are other surgeons out there who are doing good things for PNE as well. Dr. Hibner is I think just more vocal in the US pelvic pain/PN world right now. But we have to remember Dr. Hibner is just a man afterall. And if we put all our trust in him we will only be disappointed.

Charlie wrote:I guess the counter to that is the Houston team are lying.

Yes it's possible, just like it's possible any PNE doctor is lying. We are all people and unforunately are not perfect. That's why we can't put our only hope in these doctors or surgery or a certain method of surgery, unfortunately. All we can do is reserach and ask questions to the best of our ability.

I say all that to say, debate on but let's do it with compassion! The purpose of debate should be mutual help and concern for others suffering like ourselves...not to prove ourselves right and other's wrong.

Faith wrote:

What's your background Charlie. Since you don't have a "signature" and I don't know you well, would you mind telling what you've tried and how you think you got PN?

Hi Faith. You can read a bit more about what I have tried if you read the 9th post down on the page below.

http://www.pudendalhope.info/forum/view ... 4&start=30

I don't tend to say too much about myself as I have spoken out about the David Wise clinic. It seems if you do this you are subject to very public harrasment by the person who runs his website. That all sounds a bit dramatic but it has happend to other people. One person found that out when they used their real name to review David Wise's book on amazon.

Charlie wrote:I think we can say that there is a valid cause for concern that the severing of the ligaments creates instability but I don't think we can say that severing the ligaments creates pelvic instability in some people.

This comment is confusing to me. If we can say that there is a valid cause for concern that the severing of the ligaments creates instability then how can we not say the severing of the ligaments creates pelvic instability in some people? If it didn't cause instability in some people, would there be any valid cause for concern that the severing of the ligaments creates instability? If there had never been a post-op case of SIJD or other pelvic joint dysfunction where the ligaments were severed then why would there even be a cause for concern? Why would PNE doctors have different approaches to the ligament issue? Why would the Houston team screen for joint dysfunction? And why would we be having this debate on this thread? Maybe I am just misunderstanding what you are saying or am not thinking clearly.

I think we need to be careful assuming that correlation equals causation which is a common fallacy of bad science. Just because some people are reporting instability after surgery does not prove the surgery caused it. We need to remember that All phenomena that are causal are correlated but not all phenomena that are correlated are causal. http://en.wikipedia.org/wiki/Correlatio ... _causation

Now I am not saying people are wrong. I have stressed that throughout. However you yourself Faith have proposed a theory that would argue against the idea that surgery causes instability when you suggested that some people may have instability issues before surgery. The Houston screening would suggest this may be be true.

I think we also need to take a step back and consider how controversial the statement is when we say there is enough evidence to prove that some people develop instability as a result of surgery. If this case has been indeed been proven as some suggest then the Dr's who are performing surgery and not informing patients of the risk that it causes instability are effectively withholding information from them which has an impact on the rest of that patients life. I am all for speaking up and I have been pretty vocal myself but it is a big statement.

That is not meant as a criticism of anyone at all. People like Ali who have been extremely vocal about this may be doing patients a great service by exposing this. Never once have I said I am right. Personally I don't think there is enough evidence to prove that it does causes instability. There may be evidence to suggest it does but not enough to prove it.

I think it's good to weigh all pros and cons before haveing a MAJOR surgery like PNE decompression. I wish it was possible to personally visit all the PNE experts before making my decision, but unfortuantely I am not a millionaire. I do think in debating we all should watch the "tone" of our posts. I mean, we all have chronic pain here and really don't we want each other to be healed from this debilitating condition? By the way I am not aiming this at you, Charlie, but rather to everyone (myself included) who has posted on this thread. It's something we should remember before we post, no matter how mad we are. And believe me I am one who can get upset when the matter is something I am very passionate about, although I am not proud of it. I also think it's good that you have brought up the need to verify Dr. Hibner's practices. A lot of people on here think extremely highly of him (which is great) and I like what I've read about him and by him as well, but there are other surgeons out there who are doing good things for PNE as well. Dr. Hibner is I think just more vocal in the US pelvic pain/PN world right now. But we have to remember Dr. Hibner is just a man afterall. And if we put all our trust in him we will only be disappointed.

I say all that to say, debate on but let's do it with compassion! The purpose of debate should be mutual help and concern for others suffering like ourselves...not to prove ourselves right and other's wrong.

Well said, I agree with every word you say here Faith.

We are all in the same boat suffering from an awful condition. We need to help each other and discuss this in a friendly manner. It is so hard to convey tone in an internet post but I really do argue with the best of intentions. I have repeatedly said that the arguments to suggest that it can cause instability are good. I am not dismissive of any of them. I just don't think they prove it. Also let me say I don't care about being right ( to be fair I have always said I am on the fence when it comes to this). When you are arguing on a forum it is difficult to not let it become an emotive argument but I really just want to get better. In fact as I said before I am really just playing devils advocate here.

I am concerned as everyone else about the ligaments. I mean I have not at all put forward a compelling argument that it is safe to cut the ligaments rather I have just questioned the arguments that the ligament procedure causes instability. I don't really have a great deal more to say on the subject. My way of getting better is trying to approach decisions in a skeptical manner which I believe is a scientific approach. I have made the mistake of simply being a believer before and it has not got me very far and only drained away money ( I am not accusing others of doing that when I say this)

We all have something to contribute here. I am not going away from my laptop thinking Ali , Violet and HM are all talking rubbish. I am genuinely taking on board their arguments . Just as I am challenging them I want to be challenged as well and I am grateful that they have done that.

Charlie wrote: I don't think we can say that severing the ligaments creates pelvic instability in some people.

Agreed Charlie. But that wasn't my hypothesis either. You took the word "may" out of my hypothesis (may lead to pelvic instability). But to move on from just discussing words to the real issue..... wouldn't it be really great if someone were to set out to test this hypothesis? Any ideas on how that could best be achieved?

Violet M wrote:

Charlie wrote: I don't think we can say that severing the ligaments creates pelvic instability in some people.

Agreed Charlie. But that wasn't my hypothesis either. You took the word "may" out of my hypothesis (may lead to pelvic instability). But to move on from just discussing words to the real issue..... wouldn't it be really great if someone were to set out to test this hypothesis? Any ideas on how that could best be achieved?

You mean I wrote that long post out for nothing?! Okay I take your point you did include 'may. In terms of how it can be tested HM suggested how a study could be set up a few posts back. This is a long thread now so I need to find it. This study could take years though so even if it did go ahead is a long way off.

Ali

Hibner is not only the only Dr who is adding to the surgery. Yes he probably is a great Doctor but lets remember lots of other Drs are being innovative. For example the UK and Nantes team are addressing the obturater internus muscle. To me this makes sense as it will greatly help people who are entrapped at the Alcocks canal.

I detect no egotism in Greg at all. He runs his website for no profit and the costs are made up by donations. He has been honest about his surgery, he said it did not work for him but it has worked for others. Seems fair enough to me. He allows people to have their say and is brave enough to stand up to treatment providers who in my opinion really do exploit people with pelvic pain. I should add that I am not really 'friends' with Greg. I have exchanged PMs but never even spoken to him.

His story is relevant to the discussion as you claim he is suffering from pelvic instability. Therefore his limp is relevant as he is making it clear that this is not caused by instability.

This post has been edited by Mod 4

I just want to make clear that "severing the ligaments" especially the Sacrotuberous ligament in the Pelvis isn't my idea or this isn't the first time that it is being discussed.This is shared by most of the PNE doctors now which includes Dr. Hibner,Dr. Bautrant,Dr. Antalok,Dr. Shoeberi,Dr. Conway,Dr. Beco,Dr. De Bishopp,Dr. Aszmann and Dr. Dellon or any other sensible doctor.I have learnt this from them by means of discussion and their input.

The only people who deny that severing the ligaments leads to any kind of Pelvic instability is the Houston team and Professor Robert of Nantes.

Regards,
Ali

AliPasha1 wrote:I just want to make clear that "severing the ligaments" especially the Sacrotuberous ligament in the Pelvis isn't my idea or this isn't the first time that it is being discussed.This is shared by most of the PNE doctors now which includes Dr. Hibner,Dr. Bautrant,Dr. Antalok,Dr. Shoeberi,Dr. Conway,Dr. Beco,Dr. De Bishopp,Dr. Aszmann and Dr. Dellon or any other sensible doctor.I have learnt this from them by means of discussion and their input.

The only people who deny that severing the ligaments leads to any kind of Pelvic instability is the Houston team and Professor Robert of Nantes.

As I have said before you need to add the UK team to that list.

Also I am not too sure that all other surgeons are concerned that severing the ligaments leads to instability . For instance Filler claims to be able to decompress the nerve without severing the ligaments. He does not do this though because severing the ligaments leads to instability, he just does n't think it is necessary to cut them. We should be skeptical of all claims and I am not suggesting he is right in this approach. He did tell me though that severing the ligaments would not causes instabilty. I appreciate you did not include Filler in your list.

Also who is to say that Hibners repair of the ligament even works? As I understand it is is an allograph ligament repair. After the ligament has been repaired does it have the same strength as it did before? I admit to not knowing a lot about ligaments but what I would point out is that even standard ligament repair does not have a 100% success rate. ( I make these point with respect to Dr Hibner but if you say that other surgeons should be subject to scrutiny then these questions should be asked)

This post has been edited by Mod 4.

Hi Athena's mom and Ezer,
I talked to Dr. Hibner today and here is what he had to say about his Modified TG approach.

1)He does transpose the Pudendal Nerve at the ischial pine level i.e about 1 cm like Professor Robert does and Athena's mom was right about it.
2)He cuts 50% of the Sacrotuberous ligament perpendicular to the axis to visualize the Pudendal Nerve and then repairs the 50% of the severed ligament with Cadavers.
3)The Cadavers theory is a proven theory and it is almost as strong as the original Sacrotuberous ligament.When he re-operated on one of his patients,he found that the cadaver was quite strong.None of his patients have developed SIJD issues so far.
4)Sacrotuberous ligament is very important for Pelvic Stability.
5)It is a high risk for both male and females to participate in any kind of vigorous sports like football,soccer,running jogging etc even with the repaired Cadaver because the Nerve can get damaged again.Walking and swimming are fine sports for PNE patients.
6)He is going to publish his surgical results pretty soon.

Regards,
Ali