Guest guest Posted January 26, 2002 Report Share Posted January 26, 2002 Name: Sandy Schweder Location: freeport,il. email: schwed52@... Relationship: Patient Why I'd like to join: I am 51 and a mother of 4 had my first surgery in 81 and had my second tumor removed in 88 thatleft me deaf and that is when I found out I had nf2 and chances of my children having it were 50/50. My first born has it he is now 32 has had one surgery but is doing ok. My youngest one who is 22 has so many my husband and i have lost count. I want to join to help me know what is best for her. She has had 2 surgery on her left ear which she now has lost the hearing in, and has had 1 on her right ear with a little hearing left and does pretty well with use of a hearing aid. We found out from her last mri that she now has tumors growing on her eye nerves. I would really appreciate if any one has had the same problem, or if they have had surgery or radiation or what kind of treatment to try and save the eyesight. I really don\'t know where else to turn,I maybe grabbing at straws but want to save her eyesight since she is almost deaf. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2002 Report Share Posted January 26, 2002 Hi Sandy, Welcome to the crew. There are lots of us with complete deafness and bad eyesight, right guys? I am one but still have sight in one eye (left) but it is not as good as it use to be. My origional tumor in 1970 was on the eye nerve. They have never fully rumoved it. The loss of vision in that eye (right) was from dry eye (scarred cornea) because the doctors back then didn't know enough to tell me to self lubricate the eye. I am 49 years old and have been only deaf since Nov. of 1996. I grew up with great ears and sight and terrific balance until my 3rd brain surgery in 1974. There are a lot of us here who have great stories to share and can be of great support and help. God bless, Jane New Member Sandy Schweder > >Name: Sandy Schweder >Location: freeport,il. >email: schwed52@... >Relationship: Patient >Why I'd like to join: > I am 51 and a mother of 4 had my first surgery in 81 and had my second >tumor removed in 88 thatleft me deaf and that is when I found out I had nf2 >and chances of my children having it were 50/50. My first born has it he is >now 32 has had one surgery but is doing ok. My youngest one who is 22 has so >many my husband and i have lost count. I want to join to help me know what >is best for her. She has had 2 surgery on her left ear which she now has >lost the hearing in, and has had 1 on her right ear with a little hearing >left and does pretty well with use of a hearing aid. We found out from her >last mri that she now has tumors growing on her eye nerves. I would really >appreciate if any one has had the same problem, or if they have had surgery >or radiation or what kind of treatment to try and save the eyesight. I >really don\'t know where else to turn,I maybe grabbing at straws but want to >save her eyesight since she is almost deaf. > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2002 Report Share Posted January 26, 2002 AMEN TO ALL OF THAT JANE.... I HAVE BEEN DEAF SINCE 1991 AT THE AGE OF 52 MY VISION IS NOT THE BEST THE EYES GIVE ME LOTS OF PROBLEMS BALANCE IS NOT GREAT BUT FAIR IN LIGHT BUT FORGET IT IF ITS DARK. MOST OF THE CREW ARE QUITE WILLING TO SHARE THEIR EXPERIENCE WITH YOU SANDY. WELCOME TO THE CREW CATHERINE > New Member Sandy Schweder > > > > > >Name: Sandy Schweder > >Location: freeport,il. > >email: schwed52@... > >Relationship: Patient > >Why I'd like to join: > > I am 51 and a mother of 4 had my first surgery in 81 and had my second > >tumor removed in 88 thatleft me deaf and that is when I found > out I had nf2 > >and chances of my children having it were 50/50. My first born has it he > is > >now 32 has had one surgery but is doing ok. My youngest one who is 22 has > so > >many my husband and i have lost count. I want to join to help me > know what > >is best for her. She has had 2 surgery on her left ear which she now has > >lost the hearing in, and has had 1 on her right ear with a > little hearing > >left and does pretty well with use of a hearing aid. We found > out from her > >last mri that she now has tumors growing on her eye nerves. I > would really > >appreciate if any one has had the same problem, or if they have > had surgery > >or radiation or what kind of treatment to try and save the eyesight. I > >really don\'t know where else to turn,I maybe grabbing at straws but want > to > >save her eyesight since she is almost deaf. > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2002 Report Share Posted January 26, 2002 SANDY YOU NEED TO FIND A DOCTOR WHO IS VERY KNOWLEDGEABLE ABOUT NF 2. I HAVE A TUMOR ON ONE EYE NERVE IT IS VERY SMALL AND HASN'T GROWN IN 10 YEARS. MY GRANDDAUGHTER AGE 19 HAS ONE ON HER EYE NERVE AND THE MEDICAL ADVICE TO HER IS TO WATCH IT HAVE MRI REGULARLY AND DO NOTHING UNLESS IT STARTS TO GROW. WE MEANING MY 3 DAUGHTERS WHO HAVE NF2 AND 2 GRANDCHILDREN PLUS MYSELF DOCTOR WITH HOUSE EAR INSTITUTE IN LOS ANGLES WITH DR BRACKMANN THEY ARE ONE OF THE MOST EXPERIENCED PLACES FOR NF 2 CATHERINE > New Member Sandy Schweder > > > > Name: Sandy Schweder > Location: freeport,il. > email: schwed52@... > Relationship: Patient > Why I'd like to join: > I am 51 and a mother of 4 had my first surgery in 81 and had my second > tumor removed in 88 thatleft me deaf and that is when I found out > I had nf2 > and chances of my children having it were 50/50. My first born > has it he is > now 32 has had one surgery but is doing ok. My youngest one who > is 22 has so > many my husband and i have lost count. I want to join to help me know what > is best for her. She has had 2 surgery on her left ear which she now has > lost the hearing in, and has had 1 on her right ear with a little hearing > left and does pretty well with use of a hearing aid. We found > out from her > last mri that she now has tumors growing on her eye nerves. I would really > appreciate if any one has had the same problem, or if they have > had surgery > or radiation or what kind of treatment to try and save the eyesight. I > really don\'t know where else to turn,I maybe grabbing at straws > but want to > save her eyesight since she is almost deaf. > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2002 Report Share Posted January 26, 2002 Hi Sandy Welcome to the Crew, I am 27 (Four days off 28 lol lol) and I had my first surgery in 1979 for an optic tumor. I lost my eye so I can only see out of the left one and I am totally deaf now from tumors that I had removed in 2000, so I understand how you want to save your daughters eye sight it is certainly something that scares me as well. With my AN (acoustic neuromas) I had surgery as well as FSR (Fractional Sterotactic Radiation) I don't know if they can do the radiation on optic tumors but it might be worth looking into as it is not as invasive or savage as surgery. I hope this is a bit helpful. (Australia) New Member Sandy Schweder > > Name: Sandy Schweder > Location: freeport,il. > email: schwed52@... > Relationship: Patient > Why I'd like to join: > I am 51 and a mother of 4 had my first surgery in 81 and had my second > tumor removed in 88 thatleft me deaf and that is when I found out I had nf2 > and chances of my children having it were 50/50. My first born has it he is > now 32 has had one surgery but is doing ok. My youngest one who is 22 has so > many my husband and i have lost count. I want to join to help me know what > is best for her. She has had 2 surgery on her left ear which she now has > lost the hearing in, and has had 1 on her right ear with a little hearing > left and does pretty well with use of a hearing aid. We found out from her > last mri that she now has tumors growing on her eye nerves. I would really > appreciate if any one has had the same problem, or if they have had surgery > or radiation or what kind of treatment to try and save the eyesight. I > really don\'t know where else to turn,I maybe grabbing at straws but want to > save her eyesight since she is almost deaf. > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2002 Report Share Posted January 27, 2002 Welcome Sandy to the Crew Well I think from the posts that I'm still the oldest female on the Crew, 56. I and both my boys (31 & 32) have NF2. It's great to have you on board and hope you get all the information and personal experiences on treatments and recommended doctors to help you. I feel for your daughter and understand your urgency to know all there is about eye tumours. You will find the crew will rally and offer you much knowledge and support. ine from Australia New Member Sandy Schweder > > Name: Sandy Schweder > Location: freeport,il. > email: schwed52@... > Relationship: Patient > Why I'd like to join: > I am 51 and a mother of 4 had my first surgery in 81 and had my second > tumor removed in 88 thatleft me deaf and that is when I found out I had nf2 > and chances of my children having it were 50/50. My first born has it he is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2002 Report Share Posted January 27, 2002 Sandy, Welcome. Your 22 year old sounds like my daught in that they have multiple, uncountable tumors. So far we are clear of eye and ear tumors. Hers are very active and like everyone it is unexplainable. I hope your daughter's eye tumors can be resolved so that she saves her eyesight. I wish for your strength, faith and courage at this time especially. Vicki (Anne is my daughter) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2002 Report Share Posted January 28, 2002 Whoa, you are not the oldest on the Crew by a long shot! I am 59, is older than me; and then thee's Ruth Brack; and ie Lange, who is not on right now is in her 60s. Marie Re: New Member Sandy Schweder >Welcome Sandy to the Crew >Well I think from the posts that I'm still the oldest female on the Crew, >56. I and both my boys (31 & 32) have NF2. >It's great to have you on board and hope you get all the information and >personal experiences on treatments and recommended doctors to help you. >I feel for your daughter and understand your urgency to know all there is >about eye tumours. You will find the crew will rally and offer you much >knowledge and support. >ine from Australia > > New Member Sandy Schweder > > >> >> Name: Sandy Schweder >> Location: freeport,il. >> email: schwed52@... >> Relationship: Patient >> Why I'd like to join: >> I am 51 and a mother of 4 had my first surgery in 81 and had my second >> tumor removed in 88 thatleft me deaf and that is when I found out I had >nf2 >> and chances of my children having it were 50/50. My first born has it he >is > > > > > > Quote Link to comment Share on other sites More sharing options...
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