Health Organization for Pudendal Education

Hello,

I think these questions were discussed several times. But if you would be so nice please answer again.
Would you do operation with Dr Hibner or Dr Conway? I have heard from some posts that Dr Hibner wraps nerves, and uses plasma to speed up recovery. Does Dr Conway use anything like this? Is it significant for success of operation? What are rates of success for both of them? Which hospital is better? I met Dr Conway and he made good impression on me but maybe I should go and meet with Dr Hibner before making decision?
Is it true that you have to go to the bathroom standing? Or you can just use high seat? For how long time?
When you have to travel how do you manage to seat during flight? Or do you take several seats and lie down? Do you have to stay in NH or AZ for several days before going home in hotel?


Any input would be so beneficial.

Thank you,

Helen

Hello,

I wanted to ask one more question. I have pain on fold between buttock and leg and pain on fold between leg and vaginal area. My misalignment doctor is saying it could be pudendal nerve. I had labral tear repair surgery 3 months ago. And I do not know anatomy so well. Do you think it could be true?

Thank you,

Helen

Helen1000,

Yes it does sound like you have PN symptoms. It relates to my symptoms. Each surgeon uses different approaches and it is best to visit/talk with each surgeon and discuss your particular concerns IF you can travel. Dr. Conway was using a product called Sepra film, but he doesn't wrap the nerve. You may find standing to urinate after the surgery for a 3-4 days to be more comfortable as the area is swollen for a few weeks. If you can afford reserving multiple seats this is of great benefit, also traveling at non-peak times of the day and early morning, before airline delays can stack up during the later part of the day.

Dr. Hibner's pudendal surgeries are always done on Monday. You are seen pre-op on Friday and then have the week to enjoy Phoenix. After the surgery on Monday you are discharged sometime on Tuesday. If you are planning on Ketamine you will you be in the hospital longer. Dr. Hibner puts a wound vac in so you have to return to the office the Friday the week of the surgery to have it removed and see how you are doing. They give you a note to fly with Marcaine pump and to stand when every possible. Anytime after your appointment on Friday you can leave. The appointments on Friday are in the morning because the office closes at noon. So, you need to plan on being in Phoenix for at least a week. There are several hotels with in a 1 mile radius that have special rates for patients and their families at St. Joe's hospital. You can call the hospital and they can give you the list.

Hi Helen
I just had my surgery with dr Hibner in December 2013. I went in Monday am and had all my pre op done and then surgery the same day. I am from Canada so that worked out better for traveling. Also, I had my ketamine during the surgery and was discharged Tuesday afternoon. I flew home Saturday and sat in business class and was fine. Took my pain meds and had an on q pump of course. I am a registered nurse and would recommend dr Hibner .... He is very knowledgeable and an excellent surgeon. Take care.

Hi Laramarie,

I am also from Canada and very interested in going to see Dr. Hibner. Do you know if our Health Care covers any of he surgery? I do have insurance and just starting the process but curious to know if some costs would be covered.

Hope you are recovering well.

Val

Hi Val

I had my surgery covered through my provincial insurance and had a specialist fill out the forms. It was a difficult process and didn't actually get full approval until I arrived for surgery. It was very stressful so make sure you have everything in place. It's very expensive. I couldn't believe it when I saw the medical bill. I paid for all other expenses. Do you live in Ontario or Alberta? I believe that Alberta will pay for all flights etc... But ontario won't. Val, how did you get into this situation and how has your treatment gone so far? It's a difficult disease but there is hope!

Lara

Hi Lara,

I do live in Calgary. I am attending Dr. M Robert at Foothills. I've had this pain since August 2008. I had a fall in March of 2007 when I came down with an un-diagnosed illness were I lost 50 lbs in weight resulting in an 80 lb skelton! Originally treated for duodenal ulcer with an HP pac of antibiotics - this wrecked my tummy and I then found out I didn't have an ulcer. The final straw was when they gave me ativan for 10 months. Coming off that was pure hell, but during this time was when I fell while still 80 lbs. I believe that is when the damage to my pudendal nerve may have come. Too house proud and had to clean my outside windows so up the ladder I went with an ativan dizzy head, missed the ladder on the way down but it didn't hurt until the following year when I was almost finished weaning off the ativan...

I've received a CT guided nerve block, MRI, countless lidocaine injections, physio for 5 years, prolotherapy, just about everything but still can't bare to sit without a large coccyx cushion. I work for an Oil and Gas company and in leadership so often at meetings were I carry this ugly cushion - with having to explain the tailbone pain when many ask why the big cushion - argh!. Now I'm finding it affecting my bathroom activity too. I refuse to take pain medication after the horrendous battle with ativan and coming off.

Dr Robert has been absolutely wonderful. She has exhausted all avenues for me and I am now at the point of realization that this nerve pain is going nowhere. I know there are risks with surgery but at this point I am prepared to take those risks. When the pain reaches a peek often during the week I become so fatigued and my energy leaves me within minutes. My legs are constantly in pain - inflammation - tight feeling, brutal night cramps in my feet and legs and the gulf ball feeling that most experience.

I am hoping that I could get many of the tests done in Calgary ahead of the appointment although I probably have already had them. I'm not sure if I am allowed to provide my personal email on this site - am I permitted? Would love to know how your experience was and how you are doing now. My pain is just to the left of my tailbone - burning, bulging and if I sit without my cushion it feels like my entire left site is a rock with the nerve pain hard to bare. I would just love to enjoy a lovely soft chair. Wherever I am I look for a hard chair as I couldn't bare a soft chair - it is just to painful - people assume I need a soft chair and look at me with bewilderment when I tell them I need a hard wooden seat to set my cushion.

Sorry I've rambled on. Any further advice would be much appreciated. Many thanks for taking the time to respond - I'm very grateful. Val

Hi Val
Wow, I'm so sorry you have been through so much agony.
I actually found out a lot of information from a lady from Calgary who went to Dr Hibner a few years ago for surgery. She helped me navigate the system with "out of country" insurance. I got her number from GregT on this website. I don't have her number anymore but I will try to see if someone can help out with this. She is much better physically and would be a great help for you since she is from Alberta as well. She had to come to ontario to see dr Alan Gordon for all medical forms, he was the only pne doc that could fill out insurance forms at that time.
Dr Hibner wanted 3 pudendal nerve blocks done and physio tried before any surgery would be done. I had everything done That I could possibly try. 3 positive blocks, months and months of failed pelvic floor physio, many failed medications and I couldn't take the pain anymore. I was at a 10 out of 10 everyday even though I took opioids and cymbalta, lyrica, etc etc.

Is your doctor in Calgary a neurologist? Or a pain management doc? I know dr Gordon here at Mt Sinai Hospital (wasser pain management centre) is the only PNE aware physician in Canada... He does the nerve studies (emg) studies on the nerve and comes up with a plan for treatment.

I also suffer from terrible legs pains as well and I did not have this pre op, not sure what this is now. Maybe talk to the doctor about a referral here to Toronto? I waited 6 months to get an appointment with dr Gordon. At least get your paper work going for out of province and maybe out of country as well. You have suffered a long time. Have you gotten a confirm diagnosis that it is pudendal neuralgia? That's what you need! Did you see a pelvic floor physio who confirmed anything? Do you have a right pelvic floor?

Take care and if you want to talk privately (personal message me) and send me your email, I will try to help you as much as I can. As I said , I was so grateful to have someone to talk to when I was desperate for answers and help. Maybe someone else on the forum can offer suggestions to Val as well to help her get through this?

Kind regards,
Lara

Val
I live one state over from Dr Conway. If you need a free place to stay you are more than welcome to stay here. He is probably a 1 to 1/2 hour drive. Although I have two large dogs that really should not be a bother. I cancelled my appointment with Dr C long story trying other avenues first.
Patty