Update on 3 Month MRI

[Dealy]

Got my final verdict from JHH on my 3 month MRI. Tumor is stable with no sign of swelling. You could have fooled me with the symptoms I have had the last 3 weeks. Burning and tight around my face(on the side of the AN) and tightness around temple and forehead. Indicated that I have no plugged sinuses but nasal congestion. I guess that is why I always sound like I have the worst cold in the world. I always sound  like a foghorn to myself. Hearing was measured at 96% by Audiologist-but in reality it seems worse when I try to talk to people. I strain just to hear what they say. Also I went to my local doctor in hometown last week because I experience numb feet and urinate consantly. Local doctor said it was from radiation-causing unspecified nerves to fire. I thought I was a diabetic on top of everything else. ALL blood tests came back negative. JHH says-"no way" numb feet and frequent urination is not caused by the tumor or radiation. To remind those of my condition- I am an NF2 with a 2.7x2.2 AN in my right ear. Had mid-fossa in 1988 for a 1.5CM in left ear that left me deaf in that ear. This is why I opted for FSR to try to save my good hearing that is left. So far I am wondering-unless it makes a dramatic recovery soon. Well surgery would have left me deaf anyway so I chose the easiest route-at least I hope. Anyway-that is my story for now-will keep updates to those who may be interested. You know I thought I had it bad when I had only one ear to hear out of-what I would not have for that now. OH well-you take what is given to you. Ron

[HeadCase2]

Hi Ron,
  Given your situation with NF2, I think I would have tried the FRS too. It's bad enoiugh to be deaf on one side, deafness on both sides would be harder to cope with.  I hope your hearing improves as the tumor dies and perhaps shrinks.  Have you been learning any sign language in case your hearing degrades? 
Regards,
 Rob

[Dealy]

Headcase-No I have not yet taken that step to learn sign language. I know other people live with deafness and survive. However I have gone 57 years with hearing so I hope I do not go into a depression if that happens. I was trained in the early 80"s to be a Counselor so I may need to fall back on that if that happens. To Counsel myself-that will be great. I just take a day at a time-and take what the is given me in life. I hope I continue to maintain that attitude. When I was getting my FSR at Johns Hopkins I was in the Oncology ward. Seeing other patients with Cancers and Brain Tumors-I felt like the lucky one. I guess it all depends which side of the fence you are looking in from. My wife this morn made an apointment with a local uriologist to see what may be causing my frequent urination problems. Like I said-Take it a day at a time. Thanks for your reply and concern-I appreciate that.

[tony]

I saw your note - these must be worring times for you
Sign language is quite a big step - but lip reading can be quite useful
even if you still have partial hearing - you maybe doing it already
notice - do you "hear" better when you can see peoples faces ?
I find the lipreading accounts for maybe 20% of what I comprehend
most cases its easier to learn a new skill while you still have
reasonable hearing capability.
Final thought NF2 - are you on a regular check up ?
its quite a rare condition (1 : 40,000 ?) so its worth to find
medical folk who have experiance this area
Best regards
Tony

[Dealy]

Tony-If I recall and forgive me if I am wrong-are you not an NF2 also. I was looking for your stats but had no luck finding them. Did you have surgery or radiation. What is your current status. Their is another NF2 on this site-I believe she may have posted only once though. She got FSR at Johns Hopkins in 2000 and 2001. Has hearing aids. Current status is 40% in hearing ear-and she is at JHH this week because she got a Cochlear Inplant in her deaf ear. Waiting for her to return to see how she came out with that inplant. Her tumors are dying. She received 5 sessions when she received FSR back then. JHH has a new protocol for 25 sessions that I recieved and so did Windsong and another man on this board. Procedure was developed in Germany and is supose to be better for hearing preservation and nerve damage current and down the line. Good stats for those who have only 1 AN but rather unconclusive with an NF2. In a way I kinda feel like the proverbial monkey tester-but what choice did I have. Permanent deafness now with surgery or the oportunity to hear at least some things for now. I might end up on the Patient Archives as the case that made it. Who knows-Thanks for your response.

[tony]

Definately NF2 - but the first was 4.5cms and went off like a rocket
during the first surgery to debulk - 3 more in 4 days... and I kinda lucky
to writing a reply at all. Otherside is 1.3 cms and I am due for gamma
at sheffield under J. Roe
 - if you look under "Royal Hallamshire" they have published
stats for 100+ NF2s over 10 yrs - not bad figures at all
40% no change, 40% some hearing loss, 20% totalled.
The stoppage rates over the 10 yrs are quite good too.
NF2 is never as easy to sort as conventional ANs - but they are
getting close.
So just search under "Tony" for the odd note
Note the Asprin research - very important for NF2`s to
try to suppress tumour activity
(where regrowth or a new tumour is always a risk)
Good Luck and
Best regards
Tony