Getting a diagnosis

[Celeste]

There are 900 ligaments in our body and God created them for a purpose.

Sometimes everything in our bodies starts out perfect, and sometimes it's deformed and we never know about it until it causes problems. Sometimes things change within our bodies and need correction, due to injury or just the wear and tear of living.

We shouldn't pass up medical treatment just because it means a change to the original body we had.

I guess a lot depends on whether a person thinks we are meant to live in pain simply because we are capable of feeling pain. Some people won't want to address their issues out of fear of changing their bodies. That is certainly their choice...but I think it's great that options for pain relief exist. Maybe a better perspective is, why did God make doctors if he didn't want them to make us well?

[scaredgal]

Hi Ali,

I would imagine if Dr. Hibner has already had conversations with Dr. Aszmann even if the weather should hold him up for this trip, the trip would be re-scheduled. I have not had the chance to meet Dr. Hibner yet, but from the people on this board that have, he does really seem to have an interest in progressing the treatment of PN/PNE. But sooner is better than later for all of us, right???

[Pelvis Stressly]

I guess which brings up my other question - if doctors such as Filler, Dellon and Aszmann can decompress the very, very small distal nerves, and they are possibly thread thin - then surgery by it's very nature causes additional scar tissue to form in response to the damage. How can you neurowrap such small distal nerves? Is there something else that can be used to prevent re-formation of scar tissue in these very small nerves?

My PT had the following to say on that subect re. Dellon specifically, after seeing his presentation in Chicago...

"Because he is a plastic surgeon, this fine, micro-surgery is his strength, and ongoing scar tissue is minimized. I was VERY impressed!!"

[AliPasha1]

Hi PS,
Aren't Dellon and Aszmann experts on "Cadavers" since they are both "plastic surgeons".


Hi scaredgal,

You are absolutely right the sooner the better for all of us because if the referred pain is coming from these distal branches instead of the main trunk and if indeed the dorsal distal branch is the bottleneck of PN,then we don't need those invasive surgeries.

Regards,
Ali

[Celeste]

All surgery is invasive.

[Pelvis Stressly]

Why Ali, are plastic surgeons required to log more practice time on cadavers than other surgeons?

[IRIS]

Hi Athena's mom

I am a new member living in France, with this decease since 2005. I have had an operation with Dr Bautrant in France in 2008 but with just slight improvements. I continue suffering so much that I take morphin everyday. I have read that you have had a 3T MRI done which could vizualise the PN. This equipment does not seem to exist in France. It's why I am looking for information about it. Is it really reliable ? How do you feel after your recent operation. Which method dId Dr Hibner use for your operation ? I would like to be informed as much as possible since if it is a reliable equipment which really vizualise the PN route I would be ready to fly to NYC. But all costs would be at my charge. And for me it represents a lot of money I would have to borrow
Thanks very much for your help. I am a bit desesparate.
Looking forward to reading you.
Sincerely
Iris, 55 years'old french woman

[Pelvis Stressly]

Welcome to the board IRIS.

Dr. Potter (the radiologist in NY who AM, myself, and others have been to) is having some success visualizing the PN nerve along its entire course. But some of us feel that it may be premature to conclude that her findings can provide an indisputable diagnosis for this condition.

For one thing, scar tissue seems to turn up in the images of just about everyone who goes to see her...but it's hard to know if the mere presence of scarring automatically means it's problematic.

And secondly, I don't recall her ever mentioning the nerve being entrapped/compressed by either the Sacrotuberous or Sacrospinous ligaments (which are often a key part of this condition) in anybody's report. Not sure if that's just because she hasn't seen it yet in anybody, or if she's not equipped to visualize that sort of ligamental entrapment.

For what it's worth though, so far there have been 2 cases (AM being one) where surgery has confirmed her MRI findings. And she's also a very nice lady!
Hope that helps somewhat, PS.

[AliPasha1]

PS and IRIS,
It says in my MRI report that I am entrapped in the scar tissue in the Sacrotuberous ligament and Dr. Potter personally told me that my left ligament was really messed up.Same is the case with "Graceunderfire" that she is indeed entrapped in the Sacrotuberous ligament which TIR surgery cannot access.Please read my report in the MRI section.

Regards,
Ali

PS
If Dellon and Aszmann are Cadaver experts than they can be really helpful as regards to repairing both the ligaments.That's why I brought up that point.

[Pelvis Stressly]

It says in my MRI report trhat I am entrapped in the scar tissue in the Sacrotuberous ligament

This still refers to scar tissue specifically though Ali (just at the site of the ST lig.).

Leads to the bigger question of, how exactly does one become entrapped at the level of the ligaments? Is it by the ligament itself, or just via scar tissue that's formed there for some reason? And if it's the former, can Potter also visualize that? (I can't seem to find GraceUnderFire's MRI post to confirm that)

And I see what you're saying re. Dellon and Aszmann now. May be a moot point anyway, as they don't fully sever any ligaments during their procedure.