I'm back :(

[Gary]

what happened in this case? why didn't I know about these complications?

[GregT]

Gary,

If you'll notice, no one except for Ali mentioned anything so negative and confidently conclusive about how damaging cutting the ligaments were. The reason is because it seems to be Ali's mission to scare any and every one regarding the TG surgery that Professor Robert performs. 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. If anyone was going to suffer from pelvic weakness and increased pain, it would be me who suffers with muscular dystrophy. The number of people who've had successful surgery via the TG route and then their pain came back is very, very small. If it wasn't small, then maybe Ali can give you some actual names of people who've had this occur.

I wouldn't let Ali's words affect you at all. Ali has called Professor Robert a "butcher" because he cuts the ligaments. He called the wonderful doctor who saved your life (speaking to Gary here) and the lives of many others "a butcher". You don't need to know much more about Ali than that. He wants to believe this so much that he basically just makes things up. I hope that his posts haven't gotten you down, Gary. Just toss what he said to the side and wait for me to get an answer from Professor Robert.

Greg

[HerMajesty]

Greg, Ali's assessment of the situation is no more one-sided than is your own. SIJD is a possible, although not inevitable, result of increased activity after the ligaments stabilizing the pelvis are severed. SIJD is a manageable condition, and management is fortunately noninvasive. There is no reason in the world why a post op patient with return of symptoms should not be evaluated for SIJD; hence I think Ali's comment should not be "tossed to the side" just because you don't like his tone. Personally I have had some issues with recurring SIJD since increasing my activity post tarlov cyst surgery. I am not sure by what mechanism, if any, this particular surgery could cause SIJD. I am inclined to not directly implicate the surgery, but instead I favor the idea that during my pre-op period of sedentary disability I developed very weak core muscles and gained weight, resulting in easier injury to the SIJ when I became active again. Regardless of the mechanism of injury, I am thankful it is only SIJD because it means I can easily be brought out of pain flares with noninvasive manual therapy. It's always a good idea to check the simple stuff first.

[bma]

Ali is right: Cut the ligaments is a very bad idea. Dr. Hibner cuts, but restores. Instability is certain in physical activity: Other nerves can be compromised, including the sciatic.

[GregT]

Ali is right: Cut the ligaments is a very bad idea. Dr. Hibner cuts, but restores. Instability is certain in physical activity: Other nerves can be compromised, including the sciatic.

Well how do you (bma) know that cutting the ligaments is a very bad idea? I know of tons of people who've had their ligaments cut (including myself) and they don't have any problems from this. Just because something goes wrong does not mean "oh, it's the cutting of the ligaments that must have done it".

And to hermajesty, you mention that SIJD is something that can happen after the TG surgery and I do realize that this is true. But, SIJD is not what this person (Alex_Storm) is feeling. It's a totally different pain.

Ali says "I don't know how many patients will continue to suffer because of the severed ligaments", but the truth of the matter is that he doesn't KNOW ANY patients who have suffered because of the severed ligaments. He only surmises and guesses and greatly exaggerates in order to spread negative propaganda about the TG surgery, a surgery that he has never had yet is an expert on. I would more so listen to someone who has more experience with something than someone who really has no actual experience with it.

Ali wanted so badly to spread lies about the TG surgery that he asked my PT if I walked with a limp. My PT (who treated us both with manual PT) told him that I did walk with a limp, and my guess is that she also told him that it was because I was born with muscular dystrophy (Limb Girdle), a form of MD where pretty much everyone who has it produces one leg weaker than the other and, therefore, a limp. This was enough for Ali to then proclaim "see, Greg's TG surgery which cut his ligaments produced pelvic instability and a weakened pelvic floor". Nevermind that well before I ever had PN surgery my limp had already begun. Ali takes situations like mine and twists the facts so that they fit his agenda, which is a terribly thing to do to PN patients.

This is not to argue that Ali doesn't have many PN friends, that Ali hasn't been a friend to many people with PN, or that Ali lies and distorts the truth about everything when he makes posts. But, it is to say that he definitely does do these things when it comes to Professor Robert and his TG surgery which cuts one of the ligaments and windows the other. This much I can say with complete confidence and all honesty.

[Violet M]

Unfortunately we don't have tipna to refer back to but I remember a thread on that forum where there were a surprising number of people who reported complications from having their ligaments cut from TG surgery. I can't prove that the complications were actually due to severed ligaments but neither can someone else prove they weren't. There are plenty of physicians who have concerns about pelvic instability resulting from TG surgery so that now we have surgeons who are finding ways to spare the ligament. I don't think this argument can be proven one way or the other, really. If you look at a picture of the pelvis and the ST ligament, common sense tells me it could play a roll in pelvic stability but maybe this is true for some people more than others, depending on genetics.

Violet

[GregT]

Unfortunately we don't have tipna to refer back to but I remember a thread on that forum where there were a surprising number of people who reported complications from having their ligaments cut from TG surgery.

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. Getting rid of PN pain is the key. Any complications that may come from surgery are considered easier to overcome when compared to PN pain.

Also, you use the wording "who reported complications from having their ligaments cut from the TG surgery". I recall people reporting problems after surgery, but it was many times other people claiming that it was because they had TG surgery.....people like Ali.

I can't prove that the complications were actually due to severed ligaments but neither can someone else prove they weren't.

That's right, Violet. So, if you or Ali can't prove that the severed ligament is what brought on any complications, than what right does Ali have to say so conclusively that cutting the ligament (remember, only one of the ligaments is actually "cut") WILL CAUSE PELVIC INSTABILITY, WEAKNESS and CAUSES MORE SCAR TISSUE SO THAT THE NERVE BECOMES RE-ENTRAPPED?

That's like me coming on here and saying that the TG surgery which cuts the ligament(s) NEVER CAUSES ANY COMPLICATIONS WHATSOEVER, something that I've never said because don't have an agenda to push one doctor or to castigate other doctors.

Greg

[Positivepoppy]

Having undergone bilateral TG surgery 12 weeks ago I feel very frightened by these recent posts suggesting surgery may have caused further damage. I made the very difficult decision to have nerve decompression surgery only 5 months after a full hysterectomy. My pain was so chronic and deibilating that I felt surgery was the only option. My surgery was performed in the UK and the surgeon Mr Wong trained with the prof in france. I am now managing to swim several times a week and the pain seems less angry . This forum has to date offered so much hope, positivity and vital help and information but now I feel sick with worry that TG surgery has caused me unnecessary damage.
If negative comments are going to be made could evidence be provided as my nerves have gone into overdrive and I feel very anxious

[Positivepoppy]

Having undergone bilateral TG surgery 12 weeks ago I feel very frightened by these recent posts suggesting surgery may have caused further damage. I made the very difficult decision to have nerve decompression surgery only 5 months after a full hysterectomy. My pain was so chronic and deibilating that I felt surgery was the only option. My surgery was performed in the UK and the surgeon Mr Wong trained with the prof in france. I am now managing to swim several times a week and the pain seems less angry . This forum has to date offered so much hope, positivity and vital help and information but now I feel sick with worry that TG surgery has caused me unnecessary damage.
If negative comments are going to be made could evidence be provided as my nerves have gone into overdrive and I feel very anxious

[Karyn]

Dear PP,
I'm very happy to hear you're doing so well with your recovery!
This site is divided into two sections:
1. Our HOME PAGE - where you can access reference materials for educational purposes.
2. Our FORUM - where community members share their symptoms, thoughts, concerns, opinions, resources, support and personal experience.

As Violet and Greg have stated, there really isn't any empirical evidence one way or the other about complications developing after severing STL/SSL ligaments.
Please don't take these comments to heart and allow them to impede on your recovery. As with almost any topic, people will have their own, personal, strong opinions about certain subject matter, and this forum allows folks to express themselves in a respectful manner. That's all this is, hon.

Just one more point with the hope of providing you with a little comfort: IF the ligament issue was a common factor of MOST surgical patients; I think it's possible we'd have more threads involving more people, and maybe some scientific correlation.

Kind regards,
Karyn