Ilene
Thank you for replying. My friend's son has just been diagnosed with NF2. He is deaf in one ear and has a tumor behind his other ear which he is scheduled to have radiation on in 3 weeks. He just had an MRI and another very small tumor was found on his spine. He is 13. He was born with a tumor behind his eye but the doctors told her it must have been a virus she contacted while pregnant. It took 13 years for this diagnosis of NF2 to unravel the mystery of his eye problems and only because my girlfriend asked the doctor to perform an MRI when he told her his hearing is gone in one ear. All he had told herat the end of his exam was to come back in 6 months to check his hearing again!! Thank goodness for sharp, knowledgeable, intuitive moms who know more than these MD's. At least now she knows what caused his loss of sight and deafness, etc, but of course she and her husband are now so distressed and worried about his future. Do you have NF1 or 2? Is there any hope to hold on to? It seems like every story is a devestating one and the doctors aren't offering much hope besides surgery and this special radiation treatment if you catch the tumor while it's still small. Not to mention the cost of $25,000 per treatment. Even then, there's no guarantees of it coming back. I will give her your address. I just don't know if she can handle anymore disheartening news this week, but I know she will want to talk to you. If you can e-mail me back I'll figure out when would be the right time for her to contact you. Good luck to you. I hope your case is not serious and that you're living a normal life. What a relief that would be to hear! Thank you again and again...Ilene