Guest guest Posted January 10, 2003 Report Share Posted January 10, 2003 Randy, Are there resources available for folks with NF2. We are facing having to go to Los Angeles from Texas to have Dr. Brackman treat my husband. If he is able to save his hearing, he will need a new hearing aid, which is all mountains of expense. This is my husbands 3rd AN. His first was 21 yrs. ago and he lost his left side hearing. Nov. he was diagnosed with left again and right. We have Gamma Knife on the Left and will be doing surgery on the right. I used to think that every family had one hurdle they would have to climb, but no more! My husband had his first AN, then a heart attack in 1991, now 2 more AN's. Plus our youngest daughter (now grown) had 16 major surgeries to correct a birth defect, another daughter is mentally challenged. I keep telling God my plate is full. lol Doloras Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2003 Report Share Posted January 10, 2003 Hi. My name is Randy Kirsch, I live in Glastonbury, CT. I was diagnosed with NF2 about 5 years ago. I had bilateral acoustic neuromas. One was removed and one treated with radiation. On the side that was removed, I have been implanted with a CI at Mass Eye and Ear in Boston, and the radiation treatment on the other schwannoma didn't work out too well either so I am severely hard of hearing. I am very active in Self Help for Hard of Hearing People, both locally (2 term president) and Nationally ( serving on two national committees). I have been following the NF2 crew for quite some time as I have been receiving your newsletter. I use every opportunity to educate people about NF2, having done quite a bit of research on the subject on the web.. It is without a doubt the worst way to lose hearing. A lot of people are not familiar with it and how it damages one's ability to not only hear but to understand what you hear. I have taken up learning sign language and speech reading. My wife is quite supportive of all my efforts. Have one other neuroma in my cavernous sinus but Dr, Ojemann feels that it is better just to keep an eye on it rather than risk another surgery on my head. So far it only creates double vision. Have been to the HEC and have talked with Dr. Brackmann about ABI in addition to CI, and have gone to NYU to talk about 2nd CI. I am determined to continue as much of a normal life as possible despite hearing loss, and I am determined to help as many people with hearing loss as I possibly can, regardless of the cause. I am a real estate attorney. Have been practicing for almost 25 years. Thus, I have become an advocate for people with all types of disabilities. Was a leader of campaign to obtain Hearing aid Insurance coverage for children here in CT, and through SHHH, have consulted with people all over the country on what they need to do to conduct a campaign for hearing aid insurance. Am involved in other issues as well such as preservation of ADA!! I agree to abide by your guidelines and look forward to exchanging emails with the " Crew: " . Best Regards, Randy A. Kirsch Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 Welcome to the Crew, Randy! I'm sure you'll have a great deal to contribute and I'm glad you joined! Thanks for taking such an active stance on issues that impact so many people's everyday lives. I look forward to seeing your posts! ~ Jennette wrote: > Hi. My name is Randy Kirsch, I live in Glastonbury, CT. I was > diagnosed with NF2 about 5 years ago. I had bilateral acoustic > neuromas. One was removed and one treated with radiation. On the side > that was removed, I have been implanted with a CI at Mass Eye and Ear in > Boston, and the radiation treatment on the other schwannoma didn't work > out too well either so I am severely hard of hearing. I am very active > in Self Help for Hard of Hearing People, both locally (2 term president) > and Nationally ( serving on two national committees). I have been > following the NF2 crew for quite some time as I have been receiving your > newsletter. I use every opportunity to educate people about NF2, having > done quite a bit of research on the subject on the web.. It is without a > doubt the worst way to lose hearing. A lot of people are not familiar > with it and how it damages one's ability to not only hear but to > understand what you hear. I have taken up learning sign language and > speech reading. My wife is quite supportive of all my efforts. Have > one other neuroma in my cavernous sinus but Dr, Ojemann feels that it is > better just to keep an eye on it rather than risk another surgery on my > head. So far it only creates double vision. Have been to the HEC and > have talked with Dr. Brackmann about ABI in addition to CI, and have > gone to NYU to talk about 2nd CI. I am determined to continue as much > of a normal life as possible despite hearing loss, and I am determined > to help as many people with hearing loss as I possibly can, regardless > of the cause. > > I am a real estate attorney. Have been practicing for almost 25 years. > Thus, I have become an advocate for people with all types of > disabilities. Was a leader of campaign to obtain Hearing aid Insurance > coverage for children here in CT, and through SHHH, have consulted with > people all over the country on what they need to do to conduct a > campaign for hearing aid insurance. Am involved in other issues as well > such as preservation of ADA!! > > I agree to abide by your guidelines and look forward to exchanging > emails with the " Crew: " . > > Best Regards, > Randy A. Kirsch Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 Welcome Randy!! Feel free to as ANYTHING!! We have a great bunch here! Carol land Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2003 Report Share Posted January 12, 2003 Hi Barbara, glad to hear there is another member of SHHH in NF2 Crew!! I serve on 2 National BOT committees and have become friendly with Anne Pope, whom I believe belongs to Manhattan Chapter. Very sweet person, very understanding and helpful. At NYU, I saw Tom Rowland. Talk with him about double implant. I have very little residual hearing remaining in my left ear and am seriously considering another implant -- would have to remove first so that both would be compatible. Not sure I want to go through that,, but may have no choice. Am not familiar with ABC. Please enlighten me about this organization. Best Regards, RAK New Member Randy KirschHi. My name is Randy Kirsch, I live in Glastonbury, CT. I wasdiagnosed with NF2 about 5 years ago. I had bilateral acousticneuromas. One was removed and one treated with radiation. On the sidethat was removed, I have been implanted with a CI at Mass Eye and Ear inBoston, and the radiation treatment on the other schwannoma didn't workout too well either so I am severely hard of hearing. I am very activein Self Help for Hard of Hearing People, both locally (2 term president)and Nationally ( serving on two national committees). I have beenfollowing the NF2 crew for quite some time as I have been receiving yournewsletter. I use every opportunity to educate people about NF2, havingdone quite a bit of research on the subject on the web.. It is without adoubt the worst way to lose hearing. A lot of people are not familiarwith it and how it damages one's ability to not only hear but tounderstand what you hear. I have taken up learning sign language andspeech reading. My wife is quite supportive of all my efforts. Haveone other neuroma in my cavernous sinus but Dr, Ojemann feels that it isbetter just to keep an eye on it rather than risk another surgery on myhead. So far it only creates double vision. Have been to the HEC andhave talked with Dr. Brackmann about ABI in addition to CI, and havegone to NYU to talk about 2nd CI. I am determined to continue as muchof a normal life as possible despite hearing loss, and I am determinedto help as many people with hearing loss as I possibly can, regardlessof the cause.I am a real estate attorney. Have been practicing for almost 25 years.Thus, I have become an advocate for people with all types ofdisabilities. Was a leader of campaign to obtain Hearing aid Insurancecoverage for children here in CT, and through SHHH, have consulted withpeople all over the country on what they need to do to conduct acampaign for hearing aid insurance. Am involved in other issues as wellsuch as preservation of ADA!!I agree to abide by your guidelines and look forward to exchangingemails with the "Crew:".Best Regards,Randy A. Kirsch Quote Link to comment Share on other sites More sharing options...
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