Author Topic: OK,I'm new,and I need some help/advice  (Read 3113 times)

Mousiez

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OK,I'm new,and I need some help/advice
« on: July 11, 2006, 03:20:31 pm »
Hello, I am glad I found you.
Two years ago they found an accousitc neuroma in my brain. Now,my brain is well charted, lots of MRI's, CT's, everything. But I get the feeling no one was paying attention to other things due to the fact that I have another tumor in my brain and they simply didn't see it for a while. I get one MRI a year.
I am having trouble with walking, and dizziness. I have a LOT of trouble hearing and understanding what is being said; I get told that I', 'not paying attention', or that I'm simply ignoring them.
 The doctor I have said 'there's nothing to do, you can't have any more radiation, I don't think surgery will work, maybe you'll go deaf in one ear or both.'
This is NOT OK to hear,I thought doctors were supposed to try and help when you have something wrong, I was even told that I didn't need to see an oncologist.
 Can anyone let me know what to do,please, after surviving so much (long story,43 brain surgeries due to a different rare tumor) I am in no mood to ignore it while my hearing gets worse, as do my headaches.
thank you

amymeri

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Re: OK,I'm new,and I need some help/advice
« Reply #1 on: July 11, 2006, 03:29:15 pm »
Okay, wait...I am totally awed and a little confused!  Tell me about your initial diagnosis and what they have found now...

43 brain surgeries has to be some kind of record...I am OVER-awed!!
Amy

4 cm right AN removed restrosigmoid 4/13/06
Partial facial paralysis, SSD and trigeminal numbness for now

amymeri

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Re: OK,I'm new,and I need some help/advice
« Reply #2 on: July 11, 2006, 03:31:54 pm »
I just noticed you were first operated on at UC Davis?  I am 38 and grew up in Davis.  Do I know you?  Did you grow up in the area, Sacramento, Davis, Woodland?

Amy

4 cm right AN removed restrosigmoid 4/13/06
Partial facial paralysis, SSD and trigeminal numbness for now

Larry

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Re: OK,I'm new,and I need some help/advice
« Reply #3 on: July 11, 2006, 04:52:31 pm »
Mousiez,

You need to tell us your detailed history - doesn't matter how long it is. There are a lot of diifeerent experiences on this message board so someone will be able to offer some help.


Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Battyp

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Re: OK,I'm new,and I need some help/advice
« Reply #4 on: July 11, 2006, 05:15:11 pm »
how big is the AN?  Why did the doctor not think surgery would help?   Have you talked to a doctor who is experienced in AN's?

You definitely are a fighter!

matti

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Re: OK,I'm new,and I need some help/advice
« Reply #5 on: July 11, 2006, 06:37:19 pm »
Mousiez - Welcome and glad you found us!

I live in the Bay Area and am familiar with UC Davis.  Do you still live in the area? I had my surgery with the California Ear Institute at Stanford. Might want to check them out. They also have a medical practice in San Ramon.

I am also awed by what you have been through, you are truely amazing. We would love to hear a more detailed history, so we can better help you. I agree with you, you have been through way too much to ignore these symptoms and perhaps it is time to move on to another doctor and I know you have seen more than your share over the years. Do you know the size of the AN?

Take care and sending you a hug!
Cheryl
3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

nannettesea

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Re: OK,I'm new,and I need some help/advice
« Reply #6 on: July 11, 2006, 08:56:06 pm »
Mousie,
I cannot imagine 43 brain surgeries.  Are you for real?  My story doesn't compare....

But, get other opinons, please.  Symptoms sound like AN, but I would seriously consider radiation if you can.  AN surgery is no small deal, either.

But, as Cheryl said, we'd like more details on size of tumor, etc. for us to share our opinions (non-medical, of course).
Nan
1.7cm x 1.4cm x .8cm, right ear
Trans-lab approach
Dr. Jay Rubinstein, U of WA
8/29/05