Health Organization for Pudendal Education

I’m a veteran and I’ve had PN since 2009. I’ve been to see Dr Hibner three times, once for eval and twice for Botox that didn’t work. I was scheduled for surgery in 2014 but I chickened out. Now I’m in incredible pain but the VA will not send me back to see Dr Hibner, they will only send me to a “regional” doctor. I live in Pittsburgh PA and there are no specialists here. There is a doctor about 60 miles from me but I’ve never heard of him. Does anyone know Dr Steven Wiley from Wheeling, WV??? If not, who is the best in the NY, MD or other eastern US states?

Sorry, I have heard of Dr. Wiley but I don't know much about him and I don't recall that any of his patients have posted here. Who to go to would depend on what type of treatment you want to pursue. Do you have some kind of treatment in mind or are you looking for opinions from MD's on what treatment to pursue?

Violet

I have had every treatment so I’m looking for a doctor that can successfully do the transgluteal or transperineal approach. The rectal branch of my PN was crushed by a fecal impaction.

I have not heard of that doctor. Have you appealed the decision with the VA? Once you establish that there is only a handful of doctors in the U.S. who do this surgery and even fewer who do it with insurance, they may change their position. Perhaps you could cite the information on this site (i.e., the list of doctors with handful who (regularly) do decompression surgery highlighted). I think it's just Hibner, Conway, Marvel, and Dellon. (Shobeiri is listed on the site as doing it, but he doesn't do it anymore). And Dellon (and maybe Marvel) do not take insurance. Given that (you could argue), there is no other option than to see a non-local doctor and will likely have to be Hibner or Conway. Good luck, and keep us posted.

April

Thank you so much. I will be appealing that decision. Time to get nasty.

Mary

April wrote:I have not heard of that doctor. Have you appealed the decision with the VA? Once you establish that there is only a handful of doctors in the U.S. who do this surgery and even fewer who do it with insurance, they may change their position. Perhaps you could cite the information on this site (i.e., the list of doctors with handful who (regularly) do decompression surgery highlighted). I think it's just Hibner, Conway, Marvel, and Dellon. (Shobeiri is listed on the site as doing it, but he doesn't do it anymore). And Dellon (and maybe Marvel) do not take insurance. Given that (you could argue), there is no other option than to see a non-local doctor and will likely have to be Hibner or Conway. Good luck, and keep us posted.

April

The VA is using this site for their decision to send me to Dr Wiley. He’s posted that he specializes in Pudendal Neuralgia on this site so that’s all they seem to care about. They did call Dellon and Marvel and found out they care cash only. They also mentioned a doctor in Rochester NY but they didn’t give me his name.

I’ve been through the VA appeal claims before. In 2014 I wanted to go back to see Dr Hibner for another round of Botox and they turned me e down. I won the appeal.

Thanks for the advice.

Mary

That is frustrating. I don't remember reading about any patients who had decompression surgery with Dr. Wiley. I just reviewed his summary on our site, and it says he is a surgeon and that his clinic treats pn, but it doesn't say that he does decompression surgery (he could do other types of pelvic surgeries but not decompression surgery). I would call his clinic to see if he actually does the decompression surgery. If he doesn't, you could tell the VA what you learned and even ask them to call his office to confirm it.

April