Health Organization for Pudendal Education

Thanks Dan,That's what most of the patients are getting the feeling when they talk to Dr. Dellon or write to him.As far as the imaging goes,he has no idea about Dr.Potter's 3 Tesla MRI or Dr. Olga Kalinkin's/Michael Hibner 1,5 Tesla with the contrast.I sent Dr. Aszmann both the MRI CD's and he was very impressed by both the images.

As far as him talking about severing the Sacro-Spinous ligament,he probably heard about Dr. Bautrant's TIR approach or Beco's Transperenial approach from Dr. Marvel who works at John Hopkins with him.

Dr. Hibner remains your best bet and as well as mine.I will see if the dorsal nerve decompression surgery helps me or not.If not then I will proceed with Modified TG approach with Dr. Hibner on the 25th of April,2011.



Thank You and Regards,
Ali

Kit, Dr. Hibner's first male patient was operated on without neurowrap, and although he felt better for a short time, he rescarred and was in pain. So, Dr. Hibner re-operated on him with his new protocol of using Neurowrap (to avoid scarring) and platelet rich plasma to assist in nerve healing. Voila, the patient has been pain free. I think perhaps you rescarred in your previous surgeries, and that gives hope that your PN pain will heal with a Hibner redo, especially since your penile pain only came into existence after your first PN surgery, and not before.

AliPasha, I believe it was the suspensory ligament that Dellon was mentioning severing in Dan's case. Definitely not a very thoughtful response. Apparently Dellon is good at inventing surgeries, but not in applying them.... or else I am ignorant.

rick wrote:I am hearing a lot of what I will call squabbling on this forum...Please don't let the noise get in the way of the information.

I do agree w. Rick's statement above. But that said, there are a lot of what I feel are inaccuracies in this thread, that I don't think should be left unchallenged. So here goes...

AliPasha1 wrote:Dr. Hibner has confirmed with Pionogal that the decompression of the dorsal Nerve of the Penis/Clitoris is indeed a reality.

Was this ever even in question though? Drs. Aszmann, Dellon, Hruby, et al. already published their papers confirming this new site of entrapment (w. accompanying decompression procedure) years ago. I think it's admirable that Dr. Hibner went to Austria to learn their technique, as it gives patients suffering from this particular entrapment an extra option re. who to go to, but I don't think the original data collected was ever in question.

AliPasha1 wrote:PS Dr. Dellon can also operate but he doesn't take insurance.

Not saying the above is false, but here's a more detailed account from nyt, who saw Dellon recently...

"Since he does not participate in insurance he said he will write up everything I need to submit to the insurance company to see if I can get them to pay it as an in-network benefit hopefully, leaving me with a smaller out-of-pocket payment."

AliPasha1 wrote:That's what most of the patients are getting the feeling when they talk to Dr. Dellon or write to him.

Who are you referring to here Ali? Dellon's responded thoroughly to almost all of my questions over the last few months, and nyt also seemed very impressed w. him based on her recent visit (in terms of thoroughness + knowledge of the relevant anatomy & conditions).

AliPasha1 wrote:As far as the imaging goes,he has no idea about Dr.Potter's 3 Tesla MRI

That goes for most PNE docs at this point though, given that her scans are a relatively new development (and, I'll continue to add, still essentially unproven...as popular as they may be around here).

pianogal wrote:Definitely not a very thoughtful response. Apparently Dellon is good at inventing surgeries, but not in applying them

I sympathize w. Dan's frustration, but we'd need hear Dellon's side of the story to really know if his decision not to operate in his case was truly 'off the cuff', or if there was some clear indication in his mind that Dan simply wasn't a suitable candidate for that particular procedure. Personally though, I'm impressed by a surgeon who acts conservatively & won't automatically operate on anyone who walks into his/her office. And I don't think, based on that caution exhibited, that we can in any way jump to the conclusion that Dr. Dellon's 'not good at applying' the surgery that he helped develop!

Hi PS,
The same PNE doctors that we are talking about discarded the theory all together.It needed to be valided by Dr. Hibner and it was most generous of him to fly to Vienna,Austria.

Nobody ever doubted Dr. Dellons capabilities as a surgeon.The only problem is insurance.Since a lot of us Americans who are single or have families are on disability or out of work due to PNE or other neuropathies,it does make a difference if a doctor takes insurance or not.It is a quite a headache for the patients to fight with the insurance companies on their own.If Dr. Hibner takes insurance for the dorsal nerve decompression why can't Dr. Dellon.Plus,Health Care reforms is a big debate in the US as you are well aware.
Since you are Canadian,it won't make a difference to you because your government will pay for it.

Dr Hibner,Dr Aszmann both recognize of the importance of Dr. Potter's MRI.It is a great step forward,but it needs to be perfected.

Regards,
Ali

Pelvis Stressly wrote:["That goes for most PNE docs at this point though, given that her scans are a relatively new development (and, I'll continue to add, still essentially unproven...as popular as they may be around here).

Quite right, and I heartily agree with your intelligent observation. The software itself has never been validated by any other practitioner examining how it works, since the software is the key element. We also have yet to know if highly reported scar tissue can in fact be benign.

Because the software is Hospital's For Special Surgery's copyright and it was developed by them.I believe that they have a price for that if it needs to be shared.Although,We have two confirnations from Dr. Hiner so far.And it is also Dr. Potter's experience,expertise and interest to be considered as well.

Surgical confirmations are a false sense of security compared to scientific validation by software experts. Patients need to understand this scientific reality.

If that's the case, then PNE surgerical outcomes have no scientific basis with such a poor success rate.Even they validate PNE,but then 2/3rd of the patient never improve or slightly improve and in some cases even become worse.

Not to mention the extra syndromes, or pains that people develop with the original TG approach.

AliPasha1 wrote:The same PNE doctors that we are talking about discarded the theory all together.

Which PNE docs are you referring to Ali? All the ones I've spoken with about it (Drs. Gordon, Antolak, and Beco) said they were aware of the research of Dellon, Aszmann, et al., but that they wanted to see more data come in, given that they've only operated on a few patients so far. Personally, I think that's a reasonable (& accurate) position & is far removed from 'discarding the theory altogether'.

We've already discussed Dellon's position on insurance and I've explained numerous times that I'm not here to defend his practices. I just think it's important to present the facts as they are, and according to nyt he did at least seem willing to facilitate the patients' dealings w. the insurance companies.

We've also discussed the value of Potter's MRI ad nauseam, and the fact remains, as promising as it does seem, it's still simply not yet a proven diagnostic tool for this condition. Two surgical confirmations does not proof make! I think people should continue going to see her, but they need to do so w. a grain of salt, until more data's been collected (& not yet base any major treatment decisions...particularly surgery...solely on the MRI).

Pelvis Stressly wrote:We've also discussed the value of Potter's MRI ad nauseam, and the fact remains, as promising as it does seem, it's still simply not yet a proven diagnostic tool for this condition. Two surgical confirmations does not proof make! I think people should continue going to see her, but they need to do so w. a grain of salt, until more data's been collected (& not yet base any major treatment decisions...particularly surgery...solely on the MRI).

Intelligent advice from a rock-solid and analytical mind. I commend you, PS, and I'm glad you participate in the forums. I mean that.