Knowing more about Dr's in France

[desperate]

Hello all,

I'm curious to know everything and anything there is to know about the various doctors in France that have success in treating PN/PNE!

If anyone can please share their stories with me - PM me or write it here!

Wondering about the process to getting there
Procedure
Tests they may want done/they do
Surgical procedure
Treatment options they offer

Please and thank you!

[Violet M]

The only doc in France I've had experience with is Bautrant and I'm doing great now but for a male, I'm not sure he would be the best choice. Just saying that because I counted up results once and my conclusion just from what people posted on the PNE forums was that men did better after the TG approach than the TIR approach although granted, there haven't been very any men who posted after surgery with Dr. Bautrant and obviously my count was totally non-scientific. If your fiance has pelvic instability then it might be worth it to consider Dr. Bautrant's approach but otherwise he might be ahead to go with the TG approach which has better visualization of the nerves during surgery. If you want to know more about Bautrant's surgery let me know and I will elaborate.

I heard Prof Robert who does the TG approach is retiring so I'm not sure if he is still performing PNE surgery. If you go to Judy Birch's website http://www.pelvicpain.org.uk/ she should be able to tell you.

Violet

[Positivepoppy]

Not sure where you are based but there is a surgeon in the UK that has trained with prof Robert and performs the identical TG surgery. I had this surgery 13 weeks ago and happy to answer any questions.
Take care

[desperate]

Violet,

Yes i would like to know more about this surgery. Also, do you know of where i would be able to find information about Dr.Roberts procedure on the TG approach? Do you or anyone know how i would be able to contact Dr.Roberts if i was to inquire about the TG surgery? It says he is only available through mail. Does anyone know a better way i can reach him? Email, phone? etc

[stephanies]

There are doctors in the U.S. who perform TG surgery learned from Dr. Robert.

Dr. Michael Hibner in Arizona, Dr. Richard Marvel in Maryland, and Dr. Mark Conway in New Hampshire

There are other doctors who perform PN surgery and, if I am correct, these three use approaches based on Robert's surgery.

Dr. Aaron Filler and Dr. Lee Dellon also perform surgery, but I think they mostly designed their own procedures and were not in contact with Dr. Robert or anyone he trained.

You can search the forum for information on any of these doctors as well as Dr. Robert.

Please do not rush into surgery (or any other invasive treatment), give conservative therapies time and make sure you consider all your options.

[desperate]

If your fiance has pelvic instability then it might be worth it to consider Dr. Bautrant's approach but otherwise he might be ahead to go with the TG approach which has better visualization of the nerves during surgery. If you want to know more about Bautrant's surgery let me know and I will elaborate.

Violet, how would we know if there is a pelvic instability? Does this mean hips are higher than another, pelvic floor muscles are tense etc.?

Just another general question to all - Stephanies had said not to go right into treatment - as everyone else on this forum has been saying, including other PTs we've spoken with. Is there any certain reason as to why? I assume perhaps its because you're dealing with a small area and tricky parts of the body and also because the healing process is a dragg and painful....

I honestly wonder however, if you go into surgery right away what would the results be? Is there any one person that has gone into surgery right away?

[Positivepoppy]

I went into surgery 5 weeks after a diagnosis, I had a full hysterectomy June 2013 and been in chronic p pain since then. Saw numerous specialists until finally Nov 2013 had diagnosis of bilateral PNE and had surgery 5 weeks later. Too early to say if it's been successful but live in hope. You need to make your own decisions but thankfully forums can help with different information and experiences. Good luck

[Violet M]

Violet, how would we know if there is a pelvic instability? Does this mean hips are higher than another, pelvic floor muscles are tense etc.?

Pelvic misalignment might suggest pelvic instability. One leg might be longer than the other or one hip higher. Low back pain in the area of the sacroiliac ligaments and joint could suggest pelvic instability. A good physical therapist or manual therapist should be able to evaluate you for pelvic stability. I was diagnosed with it by a physical therapist and by a chiropractor. The chiro tried to adjust my pelvis into alignment but it wouldn't hold for more than 5 minutes. When the physical therapist evaluated me I think she had me lie on the edge of the table and pressed down on my pelvis, my hip essentially just fell off one side of the table and she gasped saying that my pelvis was very unstable. BTW, if you have pain in the hips, you might want to have labral tears ruled out.

Just another general question to all - Stephanies had said not to go right into treatment - as everyone else on this forum has been saying, including other PTs we've spoken with. Is there any certain reason as to why?

My guess is the reason people say not to rush into surgery is because there's no guarantee of success and sometimes people get worse. Once you have the ligaments cut there is no putting them back and also scar tissue can form after surgery. So it's really considered a last resort.

I honestly wonder however, if you go into surgery right away what would the results be? Is there any one person that has gone into surgery right away?

Some of the PNE docs say that if you have a nerve entrapment, the sooner you get it released the better your chances of recovery. I don't know if that is true, and sometimes it's hard to determine if you have a nerve entrapment. I wish there were easy definite answers but it's not that way with PN. Sometimes you have to follow your own instincts but the decision can be agonizing.

I was told by a patient who spoke with Dr. Wise, the guy who does the paradoxical relaxation classes, that you should know after 6 sessions whether it's going to help you or not. Initially when my symptoms were mild, I did some sessions of external PT with ultrasound, biofeedback, and stretching. I got somewhat better but as I continued the stretches I suddenly developed PGAD and a short time later full-blown severe PN pain. I really think the hip opener stretches pushed me over the edge because if the nerve is compressed between two ligaments it can't glide when you stretch. Later I did about 12 sessions of PT to try to stabilize the pelvis and relax the pelvic floor but I wasn't getting better. I don't know how long you should try conservative treatments before moving on. Some people say it took them a year to get better. As you can see, it's not an exact science.

The best way I know of to contact Prof. Robert is through Judy Birch on her website at http://www.pelvicpain.org.uk/

Violet