Health Organization for Pudendal Education

Does anyone have any confirmation that Dr. Hibner is going to go see Dr. Aszmann to learn how to decompress the distal pudendal nerves?

Ali told me he is flying to Vienna at the beginning of February.

Ali can confirm this.

Thanks

AM

That's good news! How are you doing A's mommy - any improvements?

Dr Hibner also told me when I saw him at the end of December that he will be going to Vienna in early February.

Dr Hibner also told me he is actively working on various things re/ ketamine treatments and ketamine options for pn patients - so I suspect we may hear more about this as well in the coming months.

Merrie

Scaredgal -- I think I'm slowly improving. Surgery was the only option for me and I'm glad I had it done: I needed it. Dr. Hibner was the best choice in my opinion and now I just have to let the nerve heal. I am taking Lyrica 75mg 2x a day and just went to a pain clinic for the first time and she wants to start me on the lowest dosage of a Fentanyl patch because she said it is the least constipating of all the narcotics, and that the Percocet I was taking is short acting and not intended as a drug for chronic pain. I am also on Valium but I need that the most because I still have severe muscle spasms, but they have flipped now since the surgery. I believe they are all right sided now instead of left. However, my right side has compensated so long for the left sided pain that of course it's in spasm. My new PT even confirmed this on Tuesday (external exam only). I do admit I am a bit leary about the Fentanyl patch because it has such a stigma of "chronic pain" associated with it... but, I HAVE chronic pain. I told her I don't want to be on this forever, and as I heal, I want to try times without it. I want to be off all drugs and living a normal life. That is my goal. She did say some people have to live their normal lives on pain meds. If that ends up being me, so be it, but until then, I will still have my goal and faith of being completely healed and restored.

Merrie -- very excited to hear about the Ketamine treatments although I am not 100% familiar with this. I knew about him going to see Asmzann in February, also great news. He is so innovative. I love him. Didn't get a Christmas card from him though, so that made me a little sad
Did you have your appointment with him and/or Loretta? What's the scoop on that? What's your plan of action?

With love,
AM

AM,
Glad to hear that your right side is OK, and just unwinding from the left's influence. Keep it up!
Your big brother in PNE,
RR

I am currently scheduled for PNE surgery with Dr Hibner in August. Im still evaluating whether Im ready for that at this point from a number of perspectives. First, I have a young child who may possibly need major surgery in the near future which would require me to take significant leave from work to care for him and I will not be able to manage both surgeries this year financially or physically. Second, my local PNE and pain management dr is not on board with the surgery and I need him to be from a long term care and pain management perspective. I have an appt to discuss further with him in a few weeks.

Sigh

Merrie

AM,
I started the same dose of Lyrica as yourself but noticed that It's not quite as effective as at the beginning. I can still feel the difference though, that's for sure. I am thinking about upping the dose and see what the benefits are versus the side effects (unnoticeable at the current dose). RR has been on 300 mg. per day with no problems and significant pain reduction. I have been taking 15-20 mg. of hydrocodone and 15-20 mg. of oxycodone (same as percocet) later in the evening per day as well as well as 2 colace per day for constipation. I have noticed that the big difference for constipation was fiber intake. When I am at home, I eat a BIG serving of fiber every day, usually broccoli, spring mix salad, or asparagus. When I was out of town for the holidays, I couldn't eat as much fiber and really noticed the difference. If you can hang with the a big pile of the rabbit food, it really cuts into opiate-related constipation. Best wishes for a speedy recovery.

Don

Hi A's Mommy,

So glad to hear you are improving! It's too slow isn't it? At least you have the surgery behind you now - I wish I did.

Donstore,

I feel the same way about Lyrica --- like I want to go up on it. Unfortunately, I'm still in the process of trying to get it approved by my insurance, so I have about one week of samples left from my PCP. It does tone down the nerve zaps though. I feel them but they aren't as earth shattering.

I just ACHE down there... that's the best way to describe it. An intense ache. That's the primary symptom. Combined with random nerve zaps, vaginal burning, vulvar tingling, and sacrum pain.

Scaredgal,

Yes, thank God I am behind surgery. I hope I never have to have the right side done. I can't imagine this any longer. I hope PT solves my problem w/ the right.

AM