Randy's Story:

My husband was diagnosed with NF2 last year. He had been going to a ENT doctor for 7 years with hearing loss that kept getting worse. The doctor diagnosed it as a genetic nerve damage and told us that there was nothing that could be done. We requested an MRI/CAT Scan but was told that was a waste of money and time that he knew this was what it was. He told Randy all he needed was a good hearing aide. We trusted this doctor, he had treated our children for years and he is a highly respected doctor in the community.

Finally last year I noticed Randy's hearing was worse even with the aide. I decided to find another doctor which I did and he immediately had an MRI done and found that Randy had bi-lateral acoustic neuromas and a tumor in the brain and diagnosed him with NF2. Since then he has undergone surgery to remove the larger tumor which left him deaf in the one ear. We're trying an implant and if that brings hearing into the ear then they will proceed with the removal of the other tumor. They do not want to leave him stone deaf all at once and if there is no hearing from the implant then they will wait and watch the other tumor.

This has been difficult for all of us, we did not know this was in his family, his family didn't know. Since my husband was diagnosed one brother and 2 uncles have been diagnosed. The sad part is that if that first doctor had done the proper diagnostic testing my husbands hearing would have had a better chance of being preserved. I think that is the hardest part to accept. We are trying to move on. I've been fighting with the insurance company to get all of this approved and we're trying to get approval to get our children tested so that we know and can watch them so that they do not go through what their father is going through.

I love my husband very much and will do anything to help him through this. He is having great difficulty accepting the fact that he may lose his hearing altogether and he doesn't know how he will continue to practice law if he loses his hearing.