MRI results

[Jeff]

Hi,
I had an MRI on Jan. 30 and spoke with my doctors this week. I need to have my remaining AN removed. This will leave me deaf for at least 2 months and possibly the remainder of me life. I will get either an ABI or PABI and I am praying that it will work for me this time. Mostly, I am praying for no facial nerve or swallowing problems. I agree with you Cheryl, NF2 stinks. This means my family (Dad and brother have NF2) will have had 6 AN surgeries in just over 5 years beginning in Feb of 2002 (this will be my 3rd) - 1 each calendar year! Hopefully, this will be the last for a while.
Jeff

[Sue]

I, too, am saddened by your situation and pray that some hearing will be retained for you.  You are being kinder about having NF2, than I would be.  I'd be using a different word than "stinks"!!   Thoughts and prayers are headed in your direction, Jeff. 

Hugs,

Sue in Vancouver USA

[Cheryl R]

  I am sorry to hear that your AN has changed to the point where you do need treatment.   The prospect of complete deafness is very scary.        I know there are many resources available to make life easier but it won't be the same.         I am trying to enjoy my loved ones voices all I can as that is probably what bothers me the most to know I won't be able to hear them at some point in my life.        I never dreamed I would be having this happen to me.        I hope you will be one of the people who has good results with the ABI.
                           Hang in there!                              Cheryl R

[Dealy]

Jeff- I am so sorry and feel for you. I can still hear after my radiation with FSR but it just seems to get worse-sounds are very very muffled and distorted. I feel that the voices I hear now-especially my wife are a Godsend and the day like you may come when I will be living in a silent world-that is scary no doubt. My family tries to make out like that is not such a big deal. Well it is too me-but what can you do-but adjust. When I think of the times I had one good hearing ear-that was a blessing-this just sucks. Will be thinking of you Jeff. Your NF2 buddy-Ron.

[matti]

Jeff - Keeping you in my thoughts and prayers.

hugs,
Cheryl
(matti)

[Jeff]

Thank you everyone for your kind words,
I haven't scheduled the surgery yet, but Dr. Hitselberger said it needs to be within the next few months. I decided long ago that when the time came I would have translab and get the Auditory Brainstem Implant, so I know that I will be completely deaf for the two months after surgery before the ABI is turned on.  I know that I will survive the hearing loss thing. I have already seen my father and brother go through it. My brother did get an ABI last February and is doing well with it. I am praying for similar results.

I have had some time to work through the idea of this since my diagnosis five years ago. And, like Cheryl, have really tried to treasure sounds of all kinds. I was a middle school and teacher, but I have retrained and am now the librarian for the same school. I will miss music, though.  It's especially frustrating because my hearing is nearly perfect - I have 100% speech discrimination, but the tumor is too big and there is too much compression of my brainstem.

I don't mean to complain....sorry for that.

Thanks again for your support. I'll let you know how things progress.

Jeff

[Dealy]

I am on my lunch period at work and I always check the ANA sight. I sent a letter too my surgeon who did my first AN 18 years ago and advised him of my current status etc. If my FSR fails I told him about your brother and getting an ABI stem after radiation failure. Now do not get me wrong-I hoping this procedure will work but you can always prepare for the worst> So I will plan to go too KC in May to see him. I sent another e-mail to Johns Hopkins about symptoms on the left ear. They just will not to commit to anything. They e-mailed me on Thursday and said this could be scar tissue and not another tumor growth and the change was too small to differante between a tumor and scar tissue. Phyl on this site suggested to contact Dr. Medbery in OKC. However- I feel he most likely would tell me the same thing. So I have opted to wait until May to see surgeon in KC. He is closely affiliated with House. So if it is re-growth or whatever I just have to deal with  then. I know you have your own problems-but I just thought you can relate what we both are facing. Keep the faith Jeff.