Hello hgtvqueen,
My name is Jeff. I am 40 years old and have NF2, as do my father and brother. I am very sorry that your daughter and your family have to deal with NF2. I am also a member of an online group called the NF2_Crew , which is comprised of NF2 patients and family members who wish to join. You can join the mailing list and/or the message board here:
http://nf2crew.org/Unfortunately, the vast majority of members are deaf, very hearing impaired, or preparing for that eventuality, which seems to be inevitable at this time regardless of the treatment that is chosen. My father and brother lost their hearing as a result of damage from their tumors. I seem to be different. I had perfect hearing on boh sides when I was diagnosed even though I had a very large tumor on one side. I lost hearing on that side when I had the tumor removed. I have a tumor on the other side that is 3.5 cm yet I have normal hearing on that side.
Since I was diagnosed 4 years ago, my personal goals have shifted from hearing preservation to other quality of life issues, namely facial function mobility. My personal preparation for deafness has included working to read lips. Because I want to continue to work, and I can't expect all of my coworkers and students to learn sign language, lip reading is one of my primary goals. Sign language acquisition is another.
Are you working with doctors who deal with NF2 on a regular basis? If not, I would suggest that you consider finding doctors who are well versed in this condition. I work with a doctor at House Ear Clinic. I know that there is an NF2 clinic at Massachusetts General. I believe that the University of Iowa deals with some NF2 patients.
Lastly, I don't know whether you have heard about the Auditory Brainstem Implant that was pioneered by House Ear Institute. Basically, the device operates on cochlear implant technology. A microphone picks up sound, transfers iit to a speech processor (computer), where it is digitized. This signal is then transmitted to via wire to electrodes that are placed on the brainstem. While the sound quality is not good, most users can't talk on the telephone for example, it does significantly improve lip reading. You can read about the next generation of this device, the Penetrating Auditory Brainstem Implant, at
http://hei.org/news/presskits/pabikit.html Please let me know if I can answer any other questions or help in any way.
Best wishes,
Jeff
