Health Organization for Pudendal Education

zx14jack wrote:pain management is short for drug store.They suggest a drug or combo that i try.neurontin and something else each time.neurontin in its self works pretty good @ 2700mil per day but,adding nortriptline ,trazodone,or amtriptline all have side affects.I quit taking the add on drugs as the side affects arise and contact them.I am still having spazams or twitching all over ,starting after traz for 30 days then amtrip for 28 days.I would like to try 18oo neurontin and 10mil nortrip.They didnt seem impressed with my own ideas,so im moving on.I can tell my wife(hey watch my legs jump).Its not in my head.

Unfortunately, amitriptyline can cause dystonia. It's not in your head! Hopefully you can find something else that helps.

Violet,you listed that you are 80% cured-that's great. But, do you have any more burning since surgery with Dr. Bautrant? I'm still jumping through the hoops & will have an MRI done in Januyary by Potter & have an appointment with Doctor Hibner in February. Thanks for any advise.

Alan,

Just wondering why you're having a Potter MRI instead of Kalinkan, if you're seeing Hibner. Doesn't Kalinkan work with Hibner? Or is Potter closer to you? Did you ask Hibner's office whose MRI he would prefer? Thanks.

No, I thought Potter was the best in the country. At least that is what I am hearing. I did not know there was another option. I will contact Dr. Hibner's office. Thank you for the tip. (:

Alan,
Hibner's office suggests MRI from Potter or Kalinkin but I think Potter is the big dog here. She does 3T MRI and is worth the trip and the money in my opinion. Kalinkin doesn't seem to see as much as her for whatever reason (software, experience, uses 1.5T). So far all of Potter's readings have been validated at surgery as far as I know although there is stuff she doesn't see (Someone correct me here on this point if I am mistaken). You'll need some kind of imaging evidence to get insurance approval if Hibner is out of network. Potter is a full professor of radiology at the Cornell Weill Medical School and is the chairman of the MRI dept. at the Hospital for Special Surgery in NYC. These are credentials that are harder to dismiss when you go to war with the insurance company to get your surgery.

Don

Thank you Don. I have scheduled an appointment for January. I was just checking to see if anyone was 'as good' as Potter or closer. Good luck with your upcoming visit with Dr. Hibner. I'm right behind you-mine is in February. Let us know what you find out.

Alan wrote:Violet,you listed that you are 80% cured-that's great. But, do you have any more burning since surgery with Dr. Bautrant? I'm still jumping through the hoops & will have an MRI done in Januyary by Potter & have an appointment with Doctor Hibner in February. Thanks for any advise.

Alan, I rarely have any burning. Lately I've been able to sit for many hours a day also. Maybe I need to revise that 80% number up a bit.

I think you are on the right track going for the MRI with Dr. Potter. It's a long wait, eh?

Yeah, it's been a long wait. But, no more than what every one else is or has gone through. I figure time will pass whether I do something or not-so just as well be proactive. This forum has been a blessing, as I would never have known what was causing my pain, or possible treatments. I am just jumping through the hoops as many of you have. Next week I see an interventional anesthesiologist(pain management) and then two weeks later I am being sent to L.A. to their top neurologist on Sunset Blvd. So will see what happens. But will still see Potter in New York unless I am miraculously cured by doctors in California. Rather doubtful about that...If nothing else, I have found that a good margarita on Friday evenings after a work week, helps immensely.

Alan wrote:If nothing else, I have found that a good margarita on Friday evenings after a work week, helps immensely.

Yes, I've known some other PNE friends who like their vino. Hey, at least it's one muscle relaxer that doesn't require a docs rx, right?

Hi Alan;
I saw Dr. Potter in April. As of then, I was told she is the only one with this particular program she developed. A week later I saw Dr. Hibner and he told me that he and his hospital were trying to get the rights to use the program in Phoenix. You may want to give Dr. H a call and see if the deal has gone through yet. I'm suppose to have the surgery in Nov. with Dr. Conway. I chose him because of the distance. I live in Northern VT and it will be easier for me to get home and then back for follow ups.
Glad you found the site. I really think the people here can help you with decision making and just plain support when no one else seems to understand. I know its been a godsend for me.
My best;
Doreen