hi! i was blog hopping, searched for nf2
in technorati to checked if my blog would show up.. just one of my trippings.. lol.. anyway, i've read your story.. obviously, i'm an nf2 patient as well.. i was diagnosed with nf2 in august2004, i got acoustic schwannomas and meningioma.. i had an open brain sugery in january 2005 but end up to be just open-close since they found an occipital something-something blocking my brain, the surgery could continue but it'll be a lot complicated, it might cause blood clothing or worse, i might get brain-dead.. so, my doctor asked my mom and decided to just terminate the surgery.. so it has been an open-close surgery.. it's like having an expensive underkcat hair made by my doctor.. lol. i'm not really normal.. but i did my best to stay normal.. i didn't really let my sickness bother me.. i do what i want.. i do what i can.. i just continue with my life.. though there are times when i'm having double vision.. and my hearing is slowly decreasing.. i'm just grateful i can hear.. june2005, i undergo stereotactic radiosurgery and treated my 3 tumors.. after a few weeks since my SRS, the swelling stage of the treated tumors began.. i was always dizzy, i lost my balance and a very painful headache.. i was in and out of the hospital for months.. until october2005 til december2005, i had a VP shunt in november coz i nearly had a hydrocephalus.. in that 2-month hospital stay.. worse things happened.. my left body part became almost paralyzed (weak & numb), my left leg and arm, including fingers and toes aren't moving, my right face is numb, my right eye is so blurry.. i really felt so week.. i can't walk.. i can't even sit on my own.. and i also have an NGT tube in me because i can't chew and swallow well.. and my hearing became worse also.. my right ear is totally deaf, my left can only hear if u're gonna talk infront of my ear clearly.. i was released from the hospital few days before christmas.. thanked God! i don't wanna celebrate xmas in the hospital.. i started wearing hearing aid in june2006, but i just used it for a month.. we thought it runned out of battery or it was defective.. but when i had the hearing test again, we found out i was already totally deaf.. then i found out i could read lips.. THANK GOD! february2006 when i had my NGT inserted in my nose transfered directly to my tummy.. i got 2 navels now.. lol. coz i'm really having a hard time chewing and swallowing with that tube inserted in my nose going down to my stomach.. since the tube is already transfered in my stomach, i could practice my chewing ang swallowing.. and i'm tube-free now! lol. but i still can't walk, move my left arm and hand.. and i can't hear still.. and i still have no balance.. my doctor said that if an nf2 looses his/her hearing, it would definitely be permanent.. kinda scary.. but not really.. i didn't let it bother me.. one of my doctors said, "don't worry.. as long as u still have ur ears, there's hope.." and we hold on to that.. until i accidentally searched about the ABI (auditory brainstem implant).. when i read about it, i told myself (and everyone), "I WANT IT!" it's so expensive but we'll find ways.. we'll be having fund raisers, soliciting, etc. actually, i just started selling shirts for a cause.. ;) few months ago my mom emailed dr. derald brackman of house ear institute in CA, USA to inquire about the PABI (it's the improved version of ABI), if i could get a sponsorship from them.. sadly, that isn't possible.. but good thing is we got in touched with dr. brackman.. he offered to give his medical opinion regarding my case and asked us to send him a copy of my MRI's, hearing tests (both audio and auditory brainstem response).. so we did.. last week.. we received a good news from him.. he said that cochlear implant might worked for me.. that's so great.. i never expected that.. because cochlear implant won't really work for an nf2 patient.. and it is less complicated since it's just placed underneath the skin.. no more brain surgery for me if ever.. i still have to undergo another test to determine if cochlear implant would really work for me.. i'm still hoping and praying for a positive result.. anyway, my story is really long.. i wanna share it to u because we're kinda going through a similar stage in life.. we're both nf2 patients.. my condition really seem worst.. but i don't consider it to be that way.. i can't do a lot of stuffs.. but i do the things i want that i can.. i have a post in my blog entitled I CAN, u might wanna check it out.. i see my current condition as a blessing.. there are numerous of blessings i receive everyday inspite and despite of.. i really live by the quote: "everything happens for a reason" i hope my letter would help u with what u're going through.. my prayers are with u.. God Bless! take care!
i also found a very nice blog of a girl with nf2.. galing! ;)