My story-Nf2

[Dealy]

Hi-My name is Ron-I am from the Midwest. This is my 2nd go around with an AN. My 1st one was in 1988. 1.5CM-growing into brain stem. Surgically removed in Kansas City (not where I from) with no complications except leaving me deaf in left ear. All is fine until the year 2005. I was told to have MRI's every 5 years-dummy me I did not-figured this was a isolated case and was told so by surgeon that removed my first tumor in 1988. Anyway-face when numb at work-I even remember the day-January 25th-2005. I keep a daily log of symptoms etc. Anyway-went to local hospital in my hometown-told it was Sinus infection. Wrong> Then went to my ENT which I had been seeing since my first surgery-every 6 months. My ear canal is the size of a 1 year old child-so I have wax removed constantly. ENT orders a MRI. I said can this be another AN. He says-no way-Wrong. This one is on my right ear and measures at first 2.4x2.0 depending on who you ask. Anyway-surgeon in Kansas City wants to remove and put in a ABA-Brain Stem. I tell him no way. He says we have another animal called GK. So he refers me to GK center in Kansas City. I decided to do research myself-not available of course in 1988-and find FSR. Talked to 8 patients who had this procedure-one being a NF2 that retained servicable hearing. Did not take me long to decide on FSR ay Johns iHopkins in Baltimore, Maryland. They monitored until 2006. It grew too 2.7X2.2. Had FSR done in June 2006 at JHH. 5 weeks or 25 sessions. At this point I am 2.5 months out. Only complaint, It sounds like I am talking in a bucket all the time. I have 98% hearing my last test in May 2006. Can hear excellent on the phone. I chose my option and now will have to live with the outcome. I have been reading about surgery-GK-Cyberknife-FSR on this forum. With any procedure you will have you good and bad. Nothing is perfect or 100%. I hope by my experience I can help someone else make an informed decision. Believe me-it is not easy. Surgery would have left me deaf-so if I still go deaf-I figure it will be on my terms-not waking up deaf. Hope this input will help some-if not at least you know my story.

[tony]

Sorry to hear of your troubles, I too am NF2 - at risk of stating the obvious
you/I/We need to be on regular (12mthly) MRI  watch for the next decade
After this time - and if no issues- then maybe move to 24/36mthly.
If your Doc/neuro does not understand this - then its time to get a new one
NF2 is rare (1:40,000??) - so best to find medical people who know
what they are doing - maybe seek out a dedicated NF2 clinic ?
Any other questions - do ask, meantime
Good luck and
Best Regards
Tony

[pattibobatti]

Hi Ron,

Welcome to this web-site.  Lots of info here!!  I don't know a thing about NF2 but I'm glad that you found us, there are plenty of people that know a lot about it. 

What we all can relate to is how you must be feeling.  This is not an easy thing to deal with and being able to talk with others that are in the same boat makes all the difference to me. 

Keep posting.  Hope you are having a good day

Pattibobatti

[Dealy]

Thanks for the replies and welcome message. I work from 8AM to 4:30 PM-and do not get home from  work till after 6PM. I see I got a reply from 2 NF2's. We win top prize I guess. One intern at JHH kept on telling me how rare I was and doctors are still not trained in dealing with AN's since they are so rare. I did not say anything-but I wanted to say "And your point Is"-but I cannot be a mean person. Besides-what good would it do me or him. I just have one question for anyone that can answer or have a theory? My voice and other people sound like I am talking in a barrell. Some days are worse than others. Everything echoes-except on a phone then I hear perfect like nothing is wrong. Anyone else experience this? My ENT tried telling me-this hapens because they radiate the ehustacian tube in your ear (spelling may be wrong). Anyway that doesn"t sound right to me. Was told also by e-mail by nurse at JHH that this will resolve over time. Geez I hope so. Thanks all and Have a good night.

[Cheryl R]

    Hi Ron.      It looks like you tried to send me a personal message yesterday but all that showed up was my message I had wrote to you yesterday.            I am wondering if you tried back to me by hitting a link at the bottom   that says reply to message.      I tried once to do this to someone and it doesn't seem to work.          If you click on my name and then my profile shows up,you can see a link at the bottom to send a personal message and that will work.
                                           Cheryl R.

[Dealy]

Thanks Cheryl for responding to my e-mail. I also e-mailed Johns Hopkins in regards to this tinny sounding voice I am dealing with. They are having perhaps a nurse address my concerns. I am from the beautiful State of Kansas. Tsk-Tsk. Acually I like it here. The small town and area seems full of people with AN's. I know of 8 personal cases. We recently had some friends whose son had a 1.2 AN removed in Kansas City by the same surgeon who did mine back in 1988. They were able to save his hearing. Now I am not an expert as such-but my surgeon told me that the smaller one's they can remove and retain hearing. Mine is too big-reason for FSR of course. Actually I do not feel that bad symptoms wise. I feel though something is going on in that head. Once in awhile some of my old symptoms show up like burning around my mouth-or if I touch the numness under my nose-I get tingling in my forehead from a nerve. I read the e-mail today about the young girl wanting advice of a baby AN. However-when these things are in your head-I guess there never to big or too small. I remember my first one-when we were told my wife and I-we both set down and cried. I am getting my feet wet on this site-so I am kind of reluctant at times to add my 2 cemts worth. I think to myself-what the heck do I know. However we learn so much from other's experiences. Early this summer we had a EMT guy in our town diagnosed with a malignent brain tumor-cancer of the liver-four other spots in his body. People in this town wrote him off. He went to Chicago for chemo-3 months later he is back to work part-time and his cancer cell count is way way down. I do not know him personally-but it made my AN sound like nothing when I thought of him. Of course he is not cured-but he is hanging in there. Well I blab enough. Maybe I can chime in more often.