Dr. Michael Hibner

Violet: Hello Dr. Hibner, this is Violet Matthews from Pudendalhope.org. Thank you for letting us interview you today. We are at the Pudendal Neuralgia Conference in Boston Massachusetts and my question to you is, what is the most important thing you would say to someone with pudendal neuralgia?

Dr. Hibner: The most important thing I would say to someone with pudendal neuralgia is go get help quickly and to find a provider who is knowledgeable about pudendal neuralgia. The sooner you get help from a practice that is trained in seeing patients with pudendal neuralgia, the better results you will have.

Violet: Thank you. I know a lot of people have gone to you and come out with fabulous results. What piqued your interest in treating patients with pudendal neuralgia in the first place?

Dr. Hibner: In 2003 I finished a fellowship in gynecological surgery and at that time I decided to concentrate on seeing patients with chronic pelvic pain only. And as I was seeing patients with chronic pelvic pain, I noticed that there were some patients who came to me who had a condition that I could not diagnose what it was. It was not endometriosis, it was not interstitial cystitis, it was not any of the diseases that I had ever been trained to treat. So, I googled their symptoms and then pudendal neuralgia came up, and once I knew the name of the condition then I took it further and then I went on medline and on medline I searched the articles about pudendal neuralgia and I found very few articles, but what was interesting is that most of those articles were written by one person who was Roger Robert, a neurosurgeon in Nantes, France.

I was able to get his email and I emailed him whether I could come to France and visit and learn from him and he was very nice to me and he invited me to come to France literally a few weeks after that initial email. I spent two weeks in France and I did 15 surgeries with Roger Robert and came back to the United States to Phoenix and started treating patients for pudendal neuralgia.

Violet: I really just appreciate the fact that you are a physician who took the time and the effort to actually research what was going on with your patients. That is just really rare in today’s world, so we really appreciate that you did that.

Dr. Hibner: Thank you. I have to say that I was in a comfortable situation and I have to give kudos to my institutions in St Joseph’s Hospital in Phoenix who was very open to me going to France and they allowed me to do that and they allowed me to spend time there. And even more importantly was when I came back to the United States, they allowed me to perform those procedures that I have learned in France.

Violet: Have you encountered any resistance in the medical world for treating people with pudendal neuralgia, and what challenges do you face?

Dr. Hibner: Initially I encountered huge resistance. People…physicians did not believe that pudendal neuralgia is real, physicians did not believe that the pain is real. They thought that we are making up a disease that doesn’t exist. However, when I search all medical books, the first time that “pudendal neuralgia” was used was in 1800 in one of the books from the United Kingdom. What I have seen happening over the years that the resistance is less and less and less. In fact, I lectured about pudendal neuralgia yesterday morning, I am here in Boston today, and Monday I am flying to Lima, Peru, giving 3 lectures about pudendal neuralgia, coming back to Chicago and lecturing about pudendal neuralgia, so as the times are changing, more and more providers and patients want to get that knowledge about pudendal neuralgia, so the resistance is pretty much gone now.

Violet: So, Dr. Hibner, could you please tell us more about the decision by the American Board of Gynecology to limit practice in treating men, and are you still treating men?

Dr. Hibner: So in the Fall of 2013, the American Board of Obstetrics and Gynecology, ABOG, came up with the decision limiting the practice of gynecology for the procedures and genders of patients they can see. And one of the items on that list was gynecologists treating male patients. This wasn’t really ABOG’s goal to limit us seeing male patients, they really were trying to go after physicians that do procedures that are not related to gynecology and should not probably be done by gynecologists and they just added that one category, male patients, to the group, thinking that it won’t really make any difference.

What happened then is that because the wording in ABOG’s letter was very strict, my situation decided that we have to let all existing, new, previous male patients go and tell them…advise them to find different providers. This sparked a huge outrage, in the community….and….to the point that I was actually asked to give an interview in December 12, 2013 at New York Times, discussing that very problem of seeing male patients. When the interview came out, and a few other things happened, eventually ABOG reversed their decision and we at that point decided that we were going to see all of the existing male patients and the patients that were ever scheduled to see me and were never seen yet. So anyone that has ever been on the schedule, or anyone that was seen…had surgery….we basically sent another group of letters to those patients saying that now we can see those patients. Because of some other things that were happening at Amercan Board of ObGyn at that time, the legal department at my hospital decided that for now we are not going to be seeing new male patients…..those that were never seen or never scheduled to be seen. This decision at some point may be reversed, however, I know that the legal department, compliance department, and I guess every other department of the hospital is trying to review that decision and see if we can reverse it, maybe this Fall.

Violet: So what would you say to male patients? I know from the forum members, some of them are having trouble figuring out what they are going to do because they were sort of counting on seeing you. So what would you recommend to them?

Dr. Hibner: So, I hope that our hospital is going to reverse that decision, but again, this may be a few months from now. Me and my partners, we’ve been bugging the administration to review it. Without their change….the administration’s change of decision we of course can’t do it because we are employed by the institution. I think in the meantime, there are other providers that see patients for pudendal neuralgia. I would just choose carefully who to see and I guess patients could contact me and I could give them some advice on who I would and would not recommend seeing.

Violet: Thank you. So what would you say to patients who have intractable pain and nothing seems to be working.

Dr. Hibner: So it depends how many things they have tried and what are the things they have done. We pretty much every few months, we add something new to our treatment options. So, traditionally our patients had….traditionally years ago our patients they were examined, they had some physical therapy, if that did not work, they had pudendal nerve blocks, and if that did not work, they would go to surgery. So in patients that have tried what we call “everything,” they have tried nerve blocks, they have tried physical therapy, they have had surgery that failed, there are still many other are still many other things that can be done. Number one, not every provider does Botox injections. I am a great, great believer in doing Botox injections into the pelvic floor muscles, because the majority of the pain in pudendal neuralgia patients is actually pain from muscle spasms. It’s hard to quantify how much comes from the nerve but it’s really treating the muscles that’s the key, and Botox…we have found in our practice that Botox is extremely effective in relieving that muscle spasm pain. Other things that we are doing, currently, some of the new things in our practice, we do amniotic fluid injections around the nerve for stem cell regeneration of the nerve. It’s a promising treatment. We’ve tried it on a few patients. It did not work as well as I was hoping to, but those patients were the patients who had the worst of the worst of the worst pain, so of course when you are evaluating a new treatment you want to try it on patients that are maybe not as severe to see if this is an option. Amniotic fluid was found to be very anti-inflammatory and also does contain stem cells that may aid in regeneration of the nerve. The other procedure that we are doing quite often these days is pulsed radiofrequency ablation of the pudendal nerve. Those results are very promising and our department of radiology right now is putting the data together on the percentages of patients that were helped by the procedure.

I am also a great believer in doing ketamine infusions…ketamine coma on patients…those patients with pudendal neuralgia, especially if it’s prolonged, develop symptoms of complex regional pain syndrome and that part of their pain needs to be addressed so, surgery or blocks do not address necessarily CRPS. It needs to be treated with medications like ketamine. There are hospitals around the country that offer those ketamine coma infusions. We have one in Phoenix where patients get admitted for five days ketamine infusion and that works fairly well. Again, it has to be done in conjunction with some other treatment on the nerve, such as surgery. We often actually use ketamine infusion during surgery, during pudendal nerve decompression surgery.

Violet: So could you tell me about the pulsed radiofrequency ablation? Lots of patients are asking about that right now. How long does it last and does it have to be repeated?

Dr. Hibner: Yes, so pulsed radiofrequency ablation, for patients who want to research it, it is important to distinguish radiofrequency ablation from pulsed radiofrequency ablation. They are differences with that word “pulsed.” The radiofrequency ablation is a procedure in which the needle is placed next to a structure in the body, turned on, heated—to destroy the structure. So those procedures are done for example in metastasis of cancer or some other cases. Pulsed radiofrequency ablation, the heat is delivered in a pulsatile manner—20 milliseconds on, 480 milliseconds off, and it goes for 10-15 minutes. It heats up the nerve by about 70 degrees Fahrenheit so it doesn’t destroy it, it just overheats the nerve. No one really knows how it works. We don’t know the physiology behind how it works, but it seems to increase the production of one of the proteins in the body that is responsible for healing of the nerves. So it takes some weeks for pulsed radiofrequency ablation to work ‘cause it works in the slow mechanism of upregulating protein production. It also lasts for a few months and it needs to be repeated but it’s not like with the nerve blocks where it needs to be repeated indefinitely. It needs to be repeated maybe two or three times. Now I don’t know yet the details of the outcomes because in my institution, the department of interventional radiology basically took over following of those patients and our interventional radiologist, Dr. Kay, is apparently doing this study where they are contacting all of the patients that had pulsed radiofrequency ablation to see what outcome they had. I certainly know of the patients that have gotten better and I know of the patients that have not.

Violet: OK, so you were going to draw us a picture of something…..

Dr. Hibner: Shall I draw something that has to do with mesh or something that has to…….? Are you interested in people with mesh or not really?

Violet: Yeah, I think mesh would be pretty interesting to a lot of women.

Dr. Hibner: So, recently, what we have been seeing quite a lot in our practice, are the patients with pain that is caused by one of the meshes for pelvic prolapse and incontinence. And one of the meshes that we see the most often cause pudendal neuralgia-like symptoms, is the TVT-O type of a mesh which is a trans-obturator mesh. So what this trans-obturator type of a mesh is a mesh that is placed underneath the urethra…this is the view of the pelvis, this is the symphysis pubis. This is the mesh that is placed underneath the urethra from the vaginal approach and it goes under the urethra here, behind the pubic bone, so this is behind the bone, and then exits through this opening that’s called the obturator foramen. So this is the same situation on the other side. So this is how the mesh is placed, it is in a way a sling underneath the urethra and it provides the support on the bottom of the urethra so when the patient coughs or sneezes, the urethra is compressed against this hammock here and she does not lose any urine.

The problem is that these patients, quite a lot of them, develop very significant groin pain, and the pain that very much resembles pudendal neuralgia. The…recently after April 29th, 2014, FDA came up with new recommendations saying that this mesh is potentially dangerous and should be used with great care. This is the third warning the FDA came up with. The previous one was in July of 2010 and one in 2008. So there is a lot of, lot of women, that’s a really big part of my practice is women that come to see me with different types of mesh injuries but specifically this.

I initially thought that this mesh is somehow causing the pudendal nerve, but the pudendal nerve is not really anywhere near, because if you look at the anatomy, those are the ischial tuberosities here, and the pudendal nerve exits through the Alcock’s canal and then it gives a branch that goes here to the clitoris, and then it gives the branch that goes to the rectum, and the branch that goes to the perineum. But as it turns out, it doesn’t really come that close to the mesh. I am actually on top of being a gynecologist and gynecological surgeon, I am also an instructor of anatomy at the University of Arizona, so I do a lot of cadaveric dissections with medical students, so as I study those things on the cadaveric dissection, which is the way it needs to be studied and we do a lot of anatomical studies. As it turns out, the pudendal nerve, even though there is a clitoral branch that runs close to that mesh, a lot of these patients don’t have clitoral pain. They have pain in the distribution of the rest of the pudendal nerve, so what we have noticed, is that that obturator membrane here is covered by the obturator muscle and the obturator muscle is the very same muscle that forms the Alcock’s canal here. And we’ve found out the if you put that mesh through the obturator muscle, and that’s the way that the company tells you to put in the mesh, the obturator muscle goes into spasm and the Alcock’s canal tightens and puts the pressure on the Alcock’s canal, and that’s most likely where the pain comes from. So this is the warning to the patients that I would like them to consider because that I see a big problem. That when patients develop that pain, they would go and see a provider that would offer to remove that mesh from them but most of the providers just remove the part that you can access vaginally which is the part like right here, through the vaginal incision, but the part that really causes the problem, the pain, the muscle spasm, is the part that goes through the obturator foramina and you can’t really access it vaginally. So in our institution, we are very careful to remove the entire mesh, not only the part in the vagina, because that part is there to support the urethra but that’s not the part that’s hurting. This is the part that is hurting, the part in the muscle. So we remove…we start our procedure vaginally and we free up the mesh here, and then we go through the abdomen with a Da Vinci robot and we can access this area to make sure we remove the entire mesh. And we actually have quite a high number of patients that were significantly helped after doing removal of TVT and actually one of our medical students who is working with me right now is putting the data together. Probably about 80-90% of patients have had significant improvement after the TVT removal.

Violet: Thank you. That was pretty interesting. We really appreciate you taking the time to talk to us. I know you have a really busy schedule, so thank you very much.

Dr. Hibner: Thank you.