Why aren't more PNE docs evolving their approach?

[A's Mommy]

The subject says it all: why aren't more docs (other than Dr. Hibner, who is very innovative and always searching for better ways to help the patient) evolving their approach to PNE surgery?

Surgeons are always trying to find better mesh for their hernia repairs so they don't reoccur, laparoscopic surgeons always want to make a smaller hole/incision, all surgeons try to prevent adhesions in some way (at least I'd hope so), transplant docs are constantly searching for ways to keep transplanted organs alive longer and work in different ways and in different patients at all ages...

so why not PNE?

I agree with Pianogal's other post: we have to somehow as a community find a way to make PNE a big deal in the pelvic pain world.

For example... what really IS vulvodynia? What's prostatodynia? What helps that? Maybe I'm ignorant, maybe I'm naive, but these things (syndromes) all have NERVES behind them.

What's IC? How can it just develop out of the blue???? Why are so many misdiagnosed with that... like I was, and could've been helped so much sooner? I mean I went to the GREAT Dr. C. Lowell Parsons, (who invented Elmiron) and after a 5 minute consult was CONVINCED I had IC and needed Elmiron and bladder instillations via self cath of marcaine or lidocaine/sodium bicarb/and heparin!!! I drink three cups of coffee a day and my bladder holds a TON of urine. That's not IC. Does "IC" develop over time and is really masked PNE?? I have a friend that used to be able to drink coffee, eat acidic foods, but now has been through PNE surgery and lives in bladder agony, and my heart breaks for her!!!

Maybe I'm getting off my main subject here... but for example... POTTER'S MRI is AMAZING and should become part of protocol or new "criteria". Sure we need more patients cross checked like me and RJR who have been to her and have had our surgical findings match exactly... only time will tell... my eternal thanks to Pelvis Stressly for putting her info back on the old board.

Why do some people get unilateral PNE and some bilateral? How can a cyclist develop compression on ONE side of their Alcock's canal and not the other? What gives?

WE need a webcast or open chat or something with the PNE docs and the patients like they do periodically on the IC Network and ICN. I know nothing about how to get this started but maybe I'll look into it.

My best to you all tonight.... for now, I'm signing off with my percocet and valium in one hand, and faith and hope in the other...

A's Mommy

[Celeste]

why aren't more docs evolving their approach to PNE surgery?

The obvious answer is, if it ain't broke, don't fix it. When you look at how many people do improve and/or get cured from surgery (2/3), that doesn't really make the case that something is "wrong" with the surgery.

I feel certain that they would all like to know why some don't get well from surgery, but the simple truth is that no research is being done on that population. It would be great if we had a way to predict who might not respond to surgery, so that those people don't have to go through it for nothing. To me, this is the missing link.

[AliPasha1]

Athena's mom,
The PNE surgery needs to be drastically evolved because there is so much to be learnt about this disease.But not every surgeon is cut out to be a leader like Dr. Hibner or Dr. Bautrant(because he came up with the TIR aproach).
This surgery at best is 1/3rd cure with another 1/3rd with some improvements.The improvements vary and that is a grey area.The 2/3rd population needs to be still cured.

Warmest Regards,
Ali

[WishIwereNumb]

I agree with Celeste. If past research and practices have done enough to help the majority of people, then any further alterations aren't highly necessary. However, I find it hard to believe that no sort of further research is being done to find better ways of helping PNE patients. I was under the impression that most conditions had, at least, a few teams doing research and conducting experiments. Of course, I could completely wrong. If someone could provide a citation, it would be greatly appreciated. In the meantime, I'll look it up myself. If research, for the most part, has stopped -- then I'll feel a little abandoned.

[AliPasha1]

Wish I were numb,
Dr. Hibner and team are working really hard to evolve PNE surgery at the moment and people are benefitting from his innovative ideas.i.e Sacrotuberous ligamnet repair,Q-Pump,Platelets and the neurowrap.
He told me that there is still a lot to be learnt about this disease.

With Dr. Potter 3 Tesla MRI we are able to visualize other trouble spots like the dorsal nerve entrapment and sadly none of the PNE surgeons were paying any attention to the dorsal nerve entrapment.

Take care,
Ali

[Celeste]

Numb, I do wish I knew of any formal, scientific research being done, but there isn't anything from what my searches of the literature have turned up. I don't believe that superficial tinkering with existing surgical technique from month to month, is the same as a clinical research. In any case, the work that surgeons do doesn't investigate why the unimproved patients didn't get well. All surgeons have patients who don't get relief, but at this time pain management is the only thing that can be offered to them.

In any case, I hope you find some answers.

[Emily B]

I agree. If more patients were diagnosed with PN instead of the generalized vulvodynia, ic, prostate problems, etc, then our condition would gain more attention. I think it's all about the numbers.

More patients = more $ making opportunities for pharmaceutical companies and doctors = more research = new treatment options.

Maybe as time goes on, more and more patients with a generalized diagnosis will be diagnosed with PN and we'll gain more attention. This is what happened with fibromyalgia. I remember the day when most doctors didn't even know what it was. Once pharmaceutical companies discovered the huge numbers of patients suffering from fibromyaliga, they pumped $$ into research. Now we see TV and magazine ads about drugs to treat fibro. Here's hoping the same thing might happen with awareness of PN.

Emily B.

[Karyn]

Another reason why more PNE docs aren't evolving their approach may be that they simply don't have the time. Look how long we have to wait just for a consultation. And then more waiting for a surgical date. From what I understand, there is NO doctor that "specializes" in PN(E) and PN(E) alone. The docs who are performing this decompression surgery are OB/GYNs and Urologists with established practices and do PN(E) surgery on the side. I think it's wonderful of Dr. H to make an effort to "evolve" his surgical technique, but by the same token, I can't fault the other surgeons for not evolving whatever technique they're utilizing. Again, it's a SUB-specialty. I'd like to add a second half to this topic question: Why aren't there MORE docs out there who are aware of and treating PN(E)? Off board comments I've gotten in response to that question basically boiled down to lack of interest. I know next to nothing about Dr. Antalok but I do admire him for teaching others how to perform the surgery. Hopefully, the precious few PN docs we have will find someone who's interested enough to learn.
Warm regards,
Karyn

[Karyn]

I agree with Emily:

Once pharmaceutical companies discovered the huge numbers of patients suffering from fibromyaliga, they pumped $$ into research. Now we see TV and magazine ads about drugs to treat fibro. Here's hoping the same thing might happen with awareness of PN.

It really is all about the money! Maybe we should be appealing to pharmaceutical companies instead of PCP's and PA's?!?!??

[Celeste]

Another reason why more PNE docs aren't evolving their approach may be that they simply don't have the time. Look how long we have to wait just for a consultation. And then more waiting for a surgical date. From what I understand, there is NO doctor that "specializes" in PN(E) and PN(E) alone. The docs who are performing this decompression surgery are OB/GYNs and Urologists with established practices and do PN(E) surgery on the side. I think it's wonderful of Dr. H to make an effort to "evolve" his surgical technique, but by the same token, I can't fault the other surgeons for not evolving whatever technique they're utilizing. Again, it's a SUB-specialty. I'd like to add a second half to this topic question: Why aren't there MORE docs out there who are aware of and treating PN(E)? Off board comments I've gotten in response to that question basically boiled down to lack of interest.

Don't forget the neurosurgeons, Ansell, Filler, Dellon...with them, it comes down to do they only do the spine, or are they interested in peripheral nerves as well? This is the divide in their specialty.

As far as the lack of interest goes, I think that many of them don't want to be "the butt doctor" and others don't want to take on travelers or deal with the chronic pain aspect of this problem. Most surgeons tackle whatever is on their list that's a one-time procedure. I do know for certain that you can't just ask a doctor to take it on; he has to want to do it (and yes, he--so far we have no female surgeons to treat us).

I used to think it was going to take somebody famous coming down with PNE to get this recognized, but let's face it, it's doubtful that a celebrity really wants to add buttock/rectal/genital pain to their lineup of what they'll talk about in an interview. Paula Abdul talked about her CRPS and was treated like an outcast. I can't blame them, they have their golden ticket and who wants to throw that away?

I'm on the fence about whether the pharma companies see this as a market, simply because neuropathic pain is fiendishly difficult to medicate. I do think the neurostim manufacturers would be the logical choice, though.