Neurofibromatosis Support Group

Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....

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fabulous 06/09/2008

Why is it that some doctores refuse to help us. There are some great surgeons out there, but I guess we are nothing to them and its pointless to help us. what is your take on this. I was able to find one doctor (I used to go to him when I was a child) maybe you guys can get some hope as well. List any doctors that may have helped you in the past.

Google Hubert Weinberg to get to his site

Marah 06/09/2008

I asked one once, "is it because I am ugly?" she never answered me. She told me I might be happier with a doctor at OSU, because they might have more information on NF. I still haven't found the doc willing to help me.

fabulous 06/09/2008

that dr was a jerk marah. I wouldnt want her to help me anyway. tell her to take a hike with her cracker jack dr degree

deleted_user 06/10/2008

at MD Anderson in houston there is a doctor who will help
i think his name was dr.slopis he is willing to help people with NF
proably because he has it to..

deleted_user 06/10/2008

Dr McKay McKinnon will also help. He is a plastic/ reconstructive surgeon in Chicago, IL. He is doing my surgery next month! let me know if any one would like his contact info

fabulous 06/10/2008

can i have the contact information for dr mckinnon and the docotor in texas. Im goingto see Dr. W in new york.. soon...

I could have sworn ( I could be wrong) that people wanted to become doctors to HELP others. But I guess not. Like I said before, a doctor told me flat out, NF doesnt pay the bils. LOL man, im a fiesty one and he is lucky that he didnt get a tounge lashing from me

Marah 06/10/2008

Yes, please give the contact info for the doc in Chicago. I believe that is closer for me.

deleted_user 06/14/2008

McKay McKinnon in Chicago Illinois is an awesome surgeon.
He has more knowledge about NF then anyone I have ever seen.

He removed the 200 pound Plexi off of Lori Hoogawind several years ago.

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