Author Topic: NF2 Specialist Centers  (Read 1908 times)


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NF2 Specialist Centers
« on: July 05, 2014, 08:40:37 am »
My 17 yo son was recently diagnosed with NF2 but does not have any symptoms as of yet. I live in Albany NY and my son's insurance says that Albany Medical Center has a qualified NF Clinic that I should go to. We did not feel comfortable with their recommendations for my son to have LINAC surgery so we got a second opinion by Dr. Plotkin at Massachusettes General Hospital. They do not reccommend radiosurgery on young people. We felt much more comfortable with Dr. Plotkin, particularly because they are one of only a handful that deal specifically with NF2. Our insurance company will not cover any NF2 recognized center (they are out of network) for my son because they say Albany Medical Center is equipped to deal with it.

I do not agree with their decision. Albany Med is a wonderful hospital for many issues such as cancer. But I do not feel comfortable in their knowledge of NF2 treatment as it is quite rare and they do not specialize in it. When it comes time for surgery I do not want Albany Med treating his NF2. Is there any any help, suggestions, or documentation that Albany Medical Center is not equipped to handle his NF2 and that he needs to be seen by a more experienced clinic? I feel so helpless right now.

We are going back to Albany Med this week to compare the tumor growth of his 1st and 2nd MRI's. I am nervous if there is growth they will want to take action as the one on his left auditory nerve is almost 3cm. Any suggestions of how I can prove to my insurance company that Albany Med is not equipped to deal with NF2? Or am I wrong? When I look up online for NF2 clinics I see a handful and Albany Med is not one of them. Please advise.



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Re: NF2 Specialist Centers
« Reply #1 on: July 05, 2014, 08:58:16 pm »

How far are you willing to travel?  I know that NYU in NYC has an NF2 center with top Drs overseeing it, Drs Roland and Golfinos.  Good luck!