Well Hopkins does have a team that performs this..you might contact them and see if they do anything differently.
they certainly know about neobladders.
I know of one other case thats been mentioned here but it generally happens to females as many ob/gyns deal with it.
Hi Pat! I haven't been on here for a while but saw that you had been in the hospital recently. Glad you are out and doing better!
Yes, I had already seen this list. There is only a scanning center in St. Petersburg FL that is part of Dr. Fuller from CA. He's a neurosurgeon that performs the guided block and other treatments. I will check John Hopkins and see what they have....it's a bit complicated because of the neobladder. The two things are not mentioned together in any research I have done so I am hesitant to act too quickly without getting all the facts.
Do you have any knowledge about this type of neuralgia? Or know anyone that has suffered from this problem?
Yeah..i'm afraid you may have to get out of Fl for this one...i'd head to Johns Hopkins......i'm sure you've seen this list but since Hopkins is #1 in Urology my bet is on them.
Hi Everyone.....I'm back! It's been a while since I posted as we searched high and low for a diagnosis for my father's severe burning episodes. They began to get worse and he ended up in the hospital ER many times over the past 6 months. To make the long story short (after many UROs, Gastros, hospital visits, pain management, CTs, MRIs, Xrays, etc...) it seems as though what has been causing my dad this excrutiating pain for about 3 years now is Pudendal Neuralgia, which no doctor or hospital seemed to know anything about!
He has not been officially tested for his but I have begun the research to get him to a specialist in our area (Miami/Ft Lauderdale, FL) but I cannot find one. They seem to be in NY, TX, NH, CA, and AZ but not in FL!
My questions are: 1) Does anyone here have experience with this diagnosis/treatment (nerve block?). 2) How does this nerve block affect the neobladder function in terms of continence?. 3) There seem to be various diagnosis methods....one is an MRN (magnetic resonance neurography, an EMG and a nerve conduction stimulator. Any feedback/advice/comments on any of these?
Looking for some help on this topic to get my dad fast relief and a better quality of life. Poor thing....has been miserable and so depressed for the past several years. Had lost hope to feel good again but now has regained some joy! YAY!!