Mutiple Focal Nodular Hyperplasia

Hello I'm a 33 year old female.
I have focal nodular hyperplasia. This means I have 12 tumors in my liver that cause extreme pain. I was dx in March 2000. I have been on Perocet and Morphine for over a year now to control pain.I have been offered no treatment for this condition. The tumors are filled with blood and I cannot get no one to operate for fear I will bleed out and expire on the table. I'm interested in hearing from anyone who has this condition, or anyone who knows of any form of treatment. I can be reached at ***@****   or through this message board.
The tumors have stopped growing as of April 2001. but the pain continues leaving me unable to do very much. I have attended pain clinics and I'm due to enter another one shortly.
I appreciate any information that anyone has, and I would be willing to share my own research on this subject.
Thanks, Melody123

[Dr. Erik]

You may want to try the University of Chicago. There is a surgeon there who has removed a tumor from a woman that weighed over 200 lbs. no one else in the country would operate on her except this doctor.I'm not sure what the name of this doctor is. You can call them and they should know his name. Good luck.

[Melody123]

Thanks Dr. E...I will be sure to check into it...thanks again.

[MARY ANN]

I DON'T HAVE ANY INFO FOR YOU I JUST WANTED TO SAY THIS MUST BE VERY HARD ON YOU EMOTIONALY NOT TO MENTION THE PAIN YOU MUST BE IN.I WISH YOU WELL AND I HOPE YOU FIND A SURGEON SOON.MAY GOD BLESS .

[Melody123]

thank you Mary Ann...but I may have found a light at the end of the tunnel after all. I'm now on a pain patch and Dilaudid for rescue pain. I have found a fabulous doc at Sunny brook Hosp. in Toronto. And with my research and her insight...I may have a successful treatment..one that I have been looking into for almost a year now...but no-one would take me seriously because I am not a doc. But this Doc did...and well I'm extremely pleased...I'll be sure to keep you posted.
Dr. Erik..if you would like more info..please e-mail me at ***@**** and I would be happy to share this with you...if it's even mildly successful it will be published.
Thanks all for your support and prayers
-Melody

[LisaMom]

I wish you luck with your pain and I pray that you get the surgery you need so yo won't have to depend on medication. I have been in pain for a long time now with pain on my right side.  Doctors are unable to find out what is wrong with me so far. I know the hopeless feeling. I am getting an abdominal CT scan this coming Tuesday...hope they find something..
I am glad you found a doctor who takes you seriously. I know how comforting that must be for you, and how alone it feels when you are in pain. Good-Luck..Please keep me posted okay..sincerely Lisa...you can e-mail me at gleeson_lisa***@****