Health Organization for Pudendal Education

Hi Karyn,
I totally agree with you.That's why I emailed Dr. Potter today and she replied that she is ready to discuss all PNE MRI results with the PNE surgeons as well as their radiologists.If the proof is right in front of you,why put the patient through further misery.I believe it is a break through in PNE diagnoses and all PNE doctors should take it seriously.
However,Botox isn't a bad idea.I felt worse for maybe a week and then I was back to normal.However,it is also being used by Dr. Bautrant in Aix En Provence,France as well and is a good weapon against muscle spasms.It's a safe procedure.

The worst is the PN block which gives people terrible pain flares and makes them worse.

Best Regards,
Ali

Karyn wrote:Hi,
I'm hoping someone can clarify something for me. I recently heard that when one has surgery via the TIR approach, that your internal organs are moved (bowels, specifically) to gain access to the nerve. Is this true? Is the bladder moved to the side as well? Are your internal organs moved around via the TG approach?
Best regards,
Karyn

Karyn,

With TIR the rectum is moved and the the levator muscle is retracted so there is potential risk to the levator and rectum. Never heard of it happening with any of Bautrant's patients. I had no problems with painful BM's after surgery.

TG -- no organs are moved. The glutes and ligaments are what take the hit in that approach. The risk is instability of the pelvis and SI joint dysfunction afterward. Haven't heard of this being a problem in Hibner's patients since he uses cadaver tissue to replace the ST ligament but some TG patients have complained of this problem after surgery when the ST ligament is not repaired.

Unfortunately, there is no perfect approach.

Thank you all for your replies!

AliPasha1 wrote:I emailed Dr. Potter today and she replied that she is ready to discuss all PNE MRI results with the PNE surgeons as well as their radiologists.If the proof is right in front of you,why put the patient through further misery.I believe it is a break through in PNE diagnoses and all PNE doctors should take it seriously.

Yes, I agree with you, Ali - but whether PNE doctors take it seriously or not, isn't up to you or me. They're the ones making the rules. I want to thank you for all you've done with bringing Dr. Potter into our circle. I think it's admirable that she would offer to extend herself in such a manner, especially if she's agreed to consult on behalf of patients she's never met (like me!). I also realize her intent is to stand by her work and I have to give her credit for that, too. Now, the big question is: will these surgeons take the time to speak with her? It's one thing for her to offer her availability, but quite another if your surgeon doesn't deem a consultation with her as necessary. I'm sincerely hoping all the tireless effort you've put forth is the beginning of a new diagnostic protocol for the PNE community. Thank you, Ali!!!
Warm regards,
Karyn

Yes,

Thank you Ali for all the headway you've done contacting Potter, etc. This is important. We have to work together in this.

Sincerely,

A's Mommy

@Ali, you are right about my MRI

I hear what you are saying regarding Dr. Hibner's "protocol." I, too, have had enough "torture" and my insurance company will not cover botox which entirely rules it out for me. I am also not in a financial position to make multiple Phoenix flights back and forth from Philadelphia. We shall see . . .

Grace

Grace,
Is the trip you're making in December for your initial consult, only? Or will this be your 2nd trip?
I hate to sound like a broken record, but, oh how I wish we had access to those old posts!
I thought I had read that Dr. Hibner wanted you to undergo the Botox treatments, too? Is this accurate?
Warm regards,
Karyn

This would have been my first visit with Dr. Hibner. Botox is totally out of the question for me because my insurance won't touch it and we are barely making it having to borrow money from my mom for the Arizona trip. But I got hit with a curve ball yesterday. Called to ask about the Loretta piece as no one in Dr. Hibner's office told me about needing to see her . . . they then informed me that my appointment was cancelled!!!! I am absolutely furious! No one even called me! Thank goodness I called before we spent all that money and went through that cross country flight for nothing!! Anyway, I am now waiting to hear back on when they will reschedule me. So we shall see . . . LOL, I am so angry I don't even remember if I answered your questions, please forgive me

Grace

ZOMG Grace, I would be so LIVID to be treated like that after all this time waiting!

There is no excuse.

You are right, Celeste. I am normally able to maintain my "professional calm" in the worst of circumstances, but I was so angry, I think I scared my family After all of that, they called and said that they convinced Dr. Hibner to come in that day (apparently, they did not notify any of their 12/15 patients) so my original appointment on 12/15 stands. I have an appointment to see Loretta in the morning before seeing Dr. Hibner. So we are going to fly in the day before, go to Loretta and Hibner and then fly out the next day. My "normal" travel style would be to take the crack of dawn flight in the morning and then ride the red eye home, but my husband thinks it will be too much on me with all that sitting and he is probably right. So, I plan on calling them every week just to make sure there are no more screw ups. Sometimes I don't think doctors realize how important it is to have a top notch office staff as well.

Keeping my fingers crossed,
Grace

I think it might help if those of us who have had the 3T MRI request our docs to talk to Potter now that we know she is willing (thanks for that Ali ). I am supposed to talk to Dr. Conway between now and Monday specifically about my 3T MRI and I am going to talk to him about it. Ali, I think you will be seeing Dr. Hibner soon and perhaps you could speak to him about connecting with Dr. Potter. I am still cautiously optimistic that this test can be another weapon in our arsenal. I just had another thought . . . perhaps it would also be helpful for those trying to get their disability approved?


Grace