Health Organization for Pudendal Education

Hi Everyone,
After finding that my 1st surgery (transvaginal) and subsequent nerve blocks, PT, medications, were a resounding failure, I’ve made the very difficult decision to have Dr. Conway perform the transgleuteal decompression surgery this year. The only problem is that I have Harvard Pilgrim for health insurance and they consider pudendal decompression surgeries “experimental” and won’t cover them. Unfortunately, they are the only insurance company that doesn’t cover pudendal decompression surgeries.
My first decompression surgery was coupled with a vestibulectemy which was covered by my insurance, so the surgeon and hospital were paid for most of the surgery and for the 4 days I was in the hospital. I just had to pay $2,000 up front to the hospital for any additional costs associated with the pudedal surgery.
Dr. Conway’s nurse informed me that the authorization for this decompression surgery would most likely be denied because they use the same code as the surgery I had before. She said she’d try it again but it would most likely be denied. She informed me that most people with Harvard Pilgrim opt to not have the surgery if they can’t include it with the vestibulectemy. Unfortunately, I’m not accepting that as an option.
So if it is denied I have a few options: (1) contact the insurance commissioner for my state and state my case; (2) the HR Director at my work said she could contact the insurance broker and see if they could work some magic; (3) contact the hospital for financial assistance, in the past I was able to get an 80% reduction, which is determined by a sliding scale based on income.
I guess the purpose of this post is to see if anyone else has had issues with having their insurance cover any decompression surgeries and if so what could be done to get them to cover it or any alternative ways that they were able to pay for the surgery.
Thanks! Jade

How many transgluteal approacheas has Dr. Conway done? I know your post was about insurance but just curious. Have you thought about Dr. Hibner? He has done at least 200 hundred by the TG approach.

All your suggests of contacting the state insurance commission, work contacting the insurance company, etc. are all the things that I could think of. It just stinks that you have to fight with the insurance company!

I am curious as well. I did not know Dr. Conway was offering the TG approach. Usually, doctors choose one approach or the other. Is he offering both the TIR and TG approaches?

Jade, keep your head up about insurance issues. I have been through it all with them... and have to write an appeal letter for nearly everything. It is a royal pain, but just know that it can be done.

Hugs,
AM

Jade, I wonder if you probably meant to say Trans Ischio Rectal procedure. So far that's all we've heard of Dr. Conway offering. He's talked about getting Trans Gluteal training from Dr. Antolak but none of us have heard of that happening yet. Or are you saying you know his schedule for the training and you are going to be one of the first people to have it from him at some point this year?

I think we all just want to clarify for the sake of whoever might read your thread, so as to have as little confusion about techniques as possible.

Thanks AM and NYT!

AM~ Luckily almost everything else has been approved by my insurance, other than the TIG Surgery, so I haven't had to write any appeals letters! I find it strange that they'll pay for the dozens of PN Blocks I've had with Dr. Quesada, but won't pay for surgery which will hopefully cut down on most of the services and medications related to PN that are submitted to them.

Dr. Conway has trained on the TG surgery with Hibner and Antolak recently. The surgery is currently going through the approval process at St. Joes, should be all set by end of January, as far as I know. I had thought about going with Dr. Antolak and Dr. Hibner, the only issues that I have are (1) travel; (2) Dr. Hibner's methods, I prefer to keep my ST ligament mostly intact and I'm not 100% on board with some other things like the plasma rich blood; (3) Dr. Conway has been following my case for several years, since diagnosis, as his office is also my OBGYN, and I have a lot of confidence in him.

I've been told that there are several other PNers waiting for the TG surgery with Dr. Conway at St. Joes to be approved, so I doubt I'll be the first. My plan was to wait until April, while I'd love to have it done right now I have a huge commitment at work in March and my fiance and I hoped to go on a vacation prior to my surgery. Plus I'd love to have the summer off to recover. My last surgery was done in April 2009, so it will be exactly 2 years this April and I found that the warm weather and being able to lay outside helped keep me somewhat sane during a very tough recovery.

Still no word from Dr. Conway's office re: whether or not it was definitely not approved by HP. I know its only been two days but after agonizing over whether or not to have the surgery, then who to have it done by, then to wait for Dr. Conway to complete his training and for the hospital to approve it, every day until I find out whether it can actually be paid for by my insurance feels like a year. But I've been keeping myself busy at work (as much as I can with frequent trips to and from the hospital and my other doctors) and my new hobby, baking (which I love because it doesn't require any sitting!), so hopefully the next few days pass by quickly!

Thanks~ Jade

Hi Celeste,

I don't want to speak for Dr. Conway and his office, but I was offered the opportunity to have him perform the TG surgery, like I said in my earlier post it is currently undergoing approval by St. Joeseph's Hospital in NH.

I don't know whether or not he's advertising the fact that pending approval he'll be offering the surgery or if he's offering it to everyone he meets with, but my fiance and I did have a consult with him regarding the TG approach and after a lengthy deliberation we decided that it was the better option for me.

Again, as I mentioned in my earlier post, I was informed that I would most likely not be the first patient to undergo the TG surgery with Dr. Conway as he had several other candidates who were waiting to be scheduled when the surgery is approved.

I guess I'd reccommend speaking with Antonia or someone else at Dr. Conway's office if anyone needs more info! I'd be happy to share any news I receive re: the TG approach with Dr. Conway when I have any, and I'll be posting any updates regarding my case!

Thanks,
Jade

Wow, thanks for letting us know Dr. Conway finally got his training with Dr. Antolak. Now I wonder if he will stop the TIR or keep it for use in some cases.

Sounds like you have a good plan, J. Keep us updated!

jpalermo wrote: (2) Dr. Hibner's methods, I prefer to keep my ST ligament mostly intact and I'm not 100% on board with some other things like the plasma rich blood;

Hi Jade, I don't think I've talked to you on the forum. BUt thanks for sharing about Conway's advances toward the TG surgery. I am still learning about PNE surgery so I wanted to ask you a couple questions. How will Conway keep the ST ligament mostly intact when doing the TG surgery? What do you mean by plasma rich blood?

I do hope the insurance works out and you are able to get the surgery. It sounds like you have had a long road of suffering.

Blessings, Faith

Hi Jade,
I'm also a patient of Dr. Conways and sincerely appreciate you sharing the info about him offering the TG approach!! Could you please provide some details about your previous surgery and why it was deemed a failure?
Warm regards,
Karyn

Hi Faith,

To answer your questions Dr Conway will keep the ST ligament intact by using Dr. Antolak’s method, so he won’t cut the ligament completely and repair it using donor tissue like Dr. Hibner. If you picture the ligament fibers like your fingers when they’re straight and closed together horizontally, Dr. Conway will make an incision between and along the grain of the the fibers (between the 2nd and 3rd fingers). So he doesn’t cut all the way through it and he can just stitch it back up without having to use donor tissue, where other doctors would cut it vertically (along the 2nd knuckles) and use donor tissue to patch the ligament pieces together or leave it as it is, which some people feel causes pelvic instability because the ligaments hold your pelvis together.

Note: This is just my understanding based on research and conversations with Dr. Conway and other patients.

Dr. Hibner has used platelet rich blood, which is supposed to aid in healing (a lot of pro athletes and their trainers use it to repair tears and other ailments). My understanding is that while your under they take some of your blood and put it in a centrifuge which spins the blood down so that your red blood cells separate from the protein rich platelets. Then they inject the platelets into the affected area, in PN surgeries I’ve heard that Dr. Hibner flushes the surgical area with the platelet rich blood. Again…this is just my understanding of the procedure and I haven’t met with Dr. Hibner but Dr. Conway explained pros and cons of each Dr’s procedure and methods to me when I met with him. I will not be using this method because it will be an additional $1000+ to have a platlet rich blood specialist come to the surgery and do this procedure…and I’m having a hard enough time getting my insurance to even pay for the procedure I really need.

I found this article when I was doing research for this procedure: http://www.nytimes.com/2009/02/17/sports/17blood.html

I hope that answers your questions!

Hi Karyn,

My previous surgery was the TIR approach with Dr. Conway two years ago (well it will be two years in April). It was deemed a failure because my symptoms were not alleviated and actually became worse after the surgery. They usually wait two full years before determining whether or not the surgery was a success but it was determined a failure about a year and a few months after my surgery because my symptoms did become worse.

Let me know if you have any other questions!