Author Topic: Newbie in Santa Clara, CA  (Read 9397 times)

moe

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Re: Newbie in Santa Clara, CA
« Reply #15 on: November 21, 2010, 10:48:30 am »
Hi Kathy,
Adding a belated welcome to the forum :)
Lots of good advice so far.
 Weird that your dad also has an  AN, so he will understand, maybe? Depending on what kind of symptoms he has...
Hopefully you can get yours zapped, and not have to go through surgery. Let us know how things progress.
STRESS!~ it sucks,is never ending in some way or another. Hopefully you can stop and do something for YOU. ;)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

6pick

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Re: Newbie in Santa Clara, CA
« Reply #16 on: November 29, 2010, 03:09:37 pm »
Hi Kathy. Glad to meet you, sorry we're meeting here.

Forgive me for being late in my welcome, the holidays and all. Case in point, I had CK at Stanford about 6 weeks ago and nothing got in the way of Thanksgiving. In fact, I had even more about which to be thankful.

To respond to your question about help after surgery: since I had radiation, no help was needed. My wife insisted I hang around at home for a few days, but I was playing handball by the second week. As for telling my family, I think the important part was to tell them, with emphasis, that it's typically benign. I followed that with the facts regarding my particular alien. The response was overwhelming support - and advice  ;) .

You've come to the right place for support - and advice, because no one really understands like we who are going there, or who have been there (and done that   ;D).

Mark
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

TOM101

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Re: Newbie in Santa Clara, CA
« Reply #17 on: November 29, 2010, 09:07:27 pm »
I'm planning on going to Stanford also. How does Kaiser handle the problem, will they let you have Ck at Stanford or do they have Dr's?

As for having 2 in your family you might want to read this article where they found 8000 cases per million in autopsy.

http://www.patient.co.uk/doctor/Acoustic-Neuromas.htm

kjm

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Re: Newbie in Santa Clara, CA
« Reply #18 on: November 30, 2010, 03:56:27 pm »
Hi Tom,
I look forward to meeting you Thursday at the Stanford AN clinic.
All the Kaiser Neurologist are at the Redwood City office:

https://members.kaiserpermanente.org/kpweb/medicalstaffdir/specialtyfacilitysearch.do

I hope they do CK ...still waiting on my referral to see a Neurologist.
Kathy

kjm

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Re: Newbie in Santa Clara, CA
« Reply #19 on: December 08, 2010, 11:28:55 am »
Hi all,
Latest update for me is that I will be seeing Dr Nutik at Kaiser Hospital in Redwood City on Dec 13th. 
I am anxious to understand what my MRI report really means.   I must have read it a million times and still do not know what it all the dimensions mean.   The one sentence that keeps going through my head (pun intended) is "mild mass affect".   That scares me on what possible treatment options will be suggested.  Yes of course I will get more than one opinion :)
Kathy