Health Organization for Pudendal Education

I just completed reading Dr. Dellon's chapter 12 on pudendal pain. His writing makes a lot of sense, as he varies his surgical approach dependent upon symptoms and where the symptoms are occurring. For example, in my instance, I am fairly certain I damaged my pudendal nerve while riding an exercise bike that had a hard seat. It put undo pressure on my pubic bone, and Dr. Dellon describes a specific surgery to correct this condition - called Pubic ramus canal syndrome. To to a typical transgluteal approach would involve unnecessary and traumatizing surgery on tissues that are not even involved in the area of entrapment.

Has anyone here consulted with Dr. Dellon or had surgery under him? I understand he does not accept health insurance? Is this true? With this in mind, what does a typical surgery cost, and unless one is independently wealthy, how can anyone afford the surgery? It seems to me a classic "Catch-22" situation. You need the surgery, but if you have it, you will be broke the rest of your life! So how do people deal with this that cannot afford out-of-pocket surgical cost? Any suggestions, ideas?

kone

Kone, several guys have reported back on their surgeries from Dr. Dellon - Ezer, Biker George, and Pelvis Stressly. Ali also had a similar surgery from Dr. Aszmann. Unfortunately, so far it hasn't proven successful for any of them. I only know of one women who had successful surgery from him and she does not post on the forum. I think Matt (Flyer) mentioned he knew someone doing well after surgery from Dr. Azsmann.

You could try submitting the insurance claim yourself if you had surgery from Dr. Dellon but you would probably want to get something in writing prior so you would know exactly how much they would cover, if anything.

Violet M

Dear Violet,

Thanks for the post. I was not aware of the surgical record of Dr. Dellon.

It is so frustrating to have this condition, a rare condition that most urologists have little knowledge of, and then to have to try to find a competent doctor to diagnose and then, if needed, a competent surgeon. As I read various posts, it seems that there are just as many failures to PN surgery as there are successes. I called the Mayo Clinic in Rochester, MN, and they referred me to Dr Antolak. He has given me about 6 steroid injections now, with little lasting benefit.

Does any surgeon come highly recommended based on positive outcomes?

kone

Kone, there's a thread about Dr. Dellon in the surgery section of the forum -- might be on page 2 of that section.

I'm not sure it's the surgeon so much as it is that the dorsal nerve approach is new and unproven at this point. I don't believe there is any published literature on the success rates. On the TG approach which is the most commonly used approach, the published success rates are between 65 and 70% -- which is not great but is better that 50/50. There are advantages and disadvantages to the different variations of TG surgery. Dr. Ansell is the most experienced TG surgeon in the US but some people have developed SI joint dysfunction after having the sacrotuberous ligament cut. Some surgeons try to spare that ligament during surgery but others believe that unless the ligament is cut the visualization of the nerve during surgery is compromised. It's difficult because that nerve is deep in the pelvis in areas that can be difficult to access. I think it's wise to do some research on the different techniques and talk to a few people who have gone through surgery from a particular doctor before making your decision.

Violet

Dear Violet,

I am doing just what you advise. I have contacted several people on this site to ask them about their surgical experience. To be frank, I have not talked to anyone who is cured! They may be a bit better, but certainly not cured, and still have significant limitations. It is all quite disheartening to learn that there is no definitive treatment for this disabling condition. Each surgical approach carries with it its own set of adverse complications. One literally picks his/her poison.

I am sorry to sound so negative, but this is what I have found in reading this site and conversing to others on this site. The list of those cured is quite small. By all means, if I am wrong in writing this, please set me straight.

kone

Yes, I understand what you mean Kone. Cured is a word that's a bit elusive around here and if your pain levels are quite manageable surgery may not be the right route for you. For many people, including myself, just being able to live a functional life where I'm not pretty much glued to my couch is a huge improvement and being able to get a good night's sleep and be off drugs are all things I am extremely grateful for. I guess you learn to count your blessings when you've come back from the brink of hell, so to speak. But I do wish there was a guaranteed cure for this illness.

Violet

Kone,
I hate to say it but some of us have identified ourselves as case studies in that chapter 12 ebook and we are not cured.

Dr. Dellon appears to be a dead end. Thanks everyone.

kone

I went to see Dellon August 2012. He runs an hour late and you pay your $600 before you go in to tiny windowless exam room. Actually he now charges $750. He takes no insurance otherwise he would not be getting rich enough, fast enough. He has no understanding of how devastating PN is, you can see it on his face. He feels no pain. PN sufferers will not appreciate any sidebars about his hand surgery expertise or time as a crack ENT. We go there because we are desperate and want someone, anyone, to tell us they can help. Otherwise why would we shell out a weeks pay for an hour of time. I had already seen 12 other specialists, ruled out everything but PN and had multiple nerve blocks, T3 MRI's. You will find no help at Dellon's. His only tool is risky wildly expensive surgery. He will write no prescriptions for your pain. These "psychotropic" drugs should be prescribed by psychiatrists only according to Dellon. I read a book of testimonial letters from patients he has helped in lobby. I see no letters from PN suffers though. I went there out of desperation. It was a long painful ride and I left with nothing but a lighter wallet. So the question remains, has someone, ANYONE gotten better because of this doctor?

I appreciate your comments about Dr. Dellon. I can also understand your desperation for seeking him out. We all know what that is like. So little is actually know about PN. If the surgeons who treat PN are the experts in the field, why then are only 30% of their surgeries considered successes? Unfortunately, we share a rare disorder that does not attract the attention of the medical field because of the fact that is it so rare. I am totally frustrated as you are, and am also going though multiple consults only to be told there is nothing wrong that shows on their MRI's, CAt Scans, etc. They give up and move on, yet we live with this condition and its astounding limitations daily.

kone