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When you watch your 2yr old nephew grow up learning how to balance, i think how much mines going backwards. I worked with a guy who had NF 1 and when I go to get an MRI I find out that I have NF 2. I tell you what brain tumors suck @$$........but hey thats how the world goes round.. I like to think of it as we are all alien tests and the ones that get diseases are just bad apples. But its alright, ill be the one standing tall when they all fall..
Hello Eric
Welcome........my youngest son is 23 so I can understand your frustration - he still lives at home with us, but we respect each other's space.
I get MRI results on Tues........it will be NF2 (if there is a tumor on my only functioning hearing nerve) or I'm out of here and get on with life.......wish me the 'I'm out of here' scenario please.
My balance has improved to almost normal from crawling anound the edge of everything 3 years ago, so I hope yours improves too.........do you have hearing?
There's lots of suport here so keep in touch.
hi,
my balance is really bad i "wall surf"! and i have a foot drop and really weak legs....makes walking difficult. i can't work anymore. i used to be very active, so this has been really hard for me. my balance and foot problem has only progressed over the past year....it sucks. i just want to be normal again
hello! yea ive been dealing with it. the hard part of getting over it is the fast as i was getting things going for myself this diagnoses happends. but yea me and my family respect eachothers space too. but they have been sants. couldnt have been to the uofm as much as i have or gone to therapy as much. balance is gettig better but the left tumor is fgar off from being in the balance so it makes it difficult to learn the balance. ill post a picture of my mri but i had 2 tumors just below my brain. which is affecting both hearing nerves. right now they took out 90% of my left one. i woke up from surgery deaf in that ear and right now i have like a 10% hearing ability in the left ear right now. they didnt expect that so they are awaiting my cochlear implant. also kind of hard hearing have the tinitus do to the tumors. so its a struggle but im stubbern enough to get threw it and try n hear.
hey there! ya i hear you with the wall surf. i was having really bad balance issues thats why i had to quit my job. a big red flag on insurance now. my tumors are right under the brain on the stem. one tumor was affecting my balance so bad i couldnt even ride a bike. but since i got that one 90% out my balance has improved. not sure how much therapy can help restate it but ya. just have to watch the other one because it wasnt too far off from the balance nerve. haha kind of embarassing walking around like a drunk so i do my walking at night. but ill be here to talk!
One of my friends has NF1 as i do my balance is ok but i have to work at it.
Took me several weeks to learn to stand up on a snow board lol let alone turn but i wont quit......
the views are nice whilst i am sat down.
getting up is even harder hee hee hee
Anyway my friend had a bad fall and was stuck without help and unable to get up for a few days, eventually she was found and taken to hospital.
After being unable to walk for ages and lots and lots of tests her balance problems turned out to be Hydocephalitus (spelt wrong) and she has had a shunt fitte, now some years on she is able to get about, will soon be walking frame free and has just got her driving licence back.
My thoughts are with you in your sutuation now feel free to contact me if you would like a chat.
I am very chatty..
lol
x
This support group thing is new to me. I have a 19 year old nephew who is dealing with NF2 and was told he has two unoperable brain tumors. Over the past year he has developed the drop foot and is now losing both his hearing and eyesight. He is schedule to have eye surgery soon to relieve the pressure from his optic nerve. Hopefully that will stop his blackouts.
Have any of you heard of the drug, Avastin. From what I've read on line, it shows some improvement for the hearing loss. Just wondering.
I am very thankful to have found this site and to be able to share in conversations with others who have NF problems. God bless!
Hello;
Thus far, I've heard nothing but good, re, Avastin and tumor shrinkage. It is unreasonably expensive however!
I'm unsure where test centers are located which have ongoing Avasitn testing by humans. One may wish to check the Advocure web site.
There is also a Yahoo group developed solely for those undergong testing of drugs for NF-2 as BIO-30 and Avastin.
Re, your nephew, other than the optic nerve debulking, who has said the tumors are inoperable? Is it a priemer NF-2 treating facility?
Have you receive a second opinion? I've known some with 7+ surgeries done in stages who have gone on to enjoy years of life.
God's blessings to you and your nephew also, Maggied!
Russ
hey. at the moment ive been goin to the university of michigan for surgery. given that ive only had 1 surgery. but to finish off i need another 1-3 more. my nephew is from my "step" sister but that word dont mean nothing to me. i have a genetic testin coming up on december 1st. but yes i hope even after all the surgerys i can still get back to my normal life. cant go back to the type of work ive always dont but ill manage. thanks and take care!
eric
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