Health Organization for Pudendal Education

Hi Carlie, thanks for sharing your story. It's good to hear from some of the "old-timers" from the tipna days.

Violet

Biff,

I am retired Military; I have Medicare-Tricare for Life and it is great. It paid for my surgery in full in France and everything here. It is different than yours since you are still active duty, this I know, but Botox for pain control and PNE is covered as a medical procedure and a pain-approved procedure. You are so close to very good care. We purchased a van, took the seats out of the back, put a twin mattress in the back, tied it to the frame, and I stayed in the back to travel and he drove cross country. No choice. I was back there with the suitcases, etc. So be it. It was easier than the pain results and there are not three free seats on planes much anymore. We purchased 3 seats to cross the Atlantic to France for surgery, sold a perfectly good car for a van to drive to MN from Texas, and made a lot of concessions both financial and physical to placate this condition. I have lived with it since 2000 when I developed it during a spinal surgery. I had to recover from a spinal surgery and try to deal with PNE roaring ahead at the same time. I lost 35 pounds because I was tossing up anything I ate. Nobody knew anything back then. Antolak at Mayo, MN knew in the first 20 minutes of my first visit and I had been all over Dallas trying to find out. Antalok made PNE his life's mission to spread the word at all the major medical clinics - to Phoenix Mayo Clinic and Hibner is the result. He worked tirelessly around the clock teaching other doctors about the symptoms of PNE and its importance. Nobody did the surgery when I had it. One of the eleven I went to France with had been at Mayo a few years before (pre-Antolak) and was told she was nuts basically. She had it for ten long and painful years. She made it and then went for her doctorate after her surgery. We owe a man named Antalok a great deal, all of us. He suffered retribution of his career from other doctors who did not believe PNE was a real "pain" and could be cured. Really. He was literally attacked and torn apart. He kept on, and many people are not hurting due to him and the kind of person he is. We have many really good human beings in the PNE corner with a lot of shared experience among them. You will be okay. You will feel much better. Move on. Carlie

Well said, Carlie. Did you see the interview with Dr. Antolak in our latest newsletter on the pudendalhope.org homepage? Interesting reading I think.

Violet

If Dr.Hibner or another Pudendal Surgeon takes you as a out of state patient, how long does it usually take for the first appointment? Is it months or even longer? Does he do most of the testing in his office? Is he ever so sure that surgery is the only answer? He schedules it soon, or does that require months of back and forth traveling. I know it sometimes takes months to see a local surgeon, who helps you not. I was wondering if anyone could share there experience with me on there first consultation. I know the questions are pretty general, Flying is not something I do. I cant imagine the cost.

Thank you
Linda

Dr. Hibner offers other therapies besides surgery. I know some out-of-state patients who he performed surgery on during their first visit to Phoenix but it would depend on whether he thought surgery was the right treatment for you. I spoke with him last weekend at the PNE conference and he said that he uses other therapies besides surgery, especially Botox into pelvic floor muscles because it is effective for many people. You might want to read this list of therapies they offer. http://www.pudendalhope.info/node/58#AZ This list was updated recently by information sent to me by Dr. Castellanos so it's pretty up-to-date.

I don't know how long it takes to get an appointment currently. Other patients have posted that in addition to your appointment with Dr. Hibner, you should make an appointment with Loretta, the physical therapist who works with Dr. Hibner. My understanding is that Dr. HIbner does not do the nerve blocks himself but they are performed by a physician of a different specialty so it would not be done in his office.

Violet

I am seeing Dr. Hibner next month, My doctor in Ohio referred me to him. It seems it takes at least 3 to 4 months for an appointment. I pray the weather will be clear. Could anyone tell me if you have pudendal entrapment how many trips does he usually need before he suggest surgery. Does he do a MRN on the first visit. I recently had a MRI in Ohio. I am not sure about the difference. Any info on my first visit to Dr. Hibner would be much appreciated. Could anyone give me some info on Tarlov Cyst also. Thank You.

When I made my appointment with Dr. Hibner, they scheduled an MRI to be done at his hospital and read by his radiologist and an appointment for an evaluation with Loretta his PT as well as the consult with him. Do you have these appointments as well as one to see Dr. Hibner? You should definitely plan to do all three of those in the same visit. Try to do the MRI your first day and see Loretta and Dr. H the second day so he has the MRI report when you see him. He will take the info from the MRI, Loretta, and your history and suggest a treatment plan. I think he will also do a block at the first visit if you choose to do it. Your MRI with him should note Tarlov cysts if present, but you can ask him specifically about them.

Theresa, good luck with your visit to Dr. Hibner.

If you want more info on tarlov cysts you can do a search on Hermajesty's and Karyn's posts.

Take care,

Violet