Author Topic: Just Diagnosed  (Read 7990 times)

suboo73

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Re: Just Diagnosed
« Reply #15 on: February 17, 2011, 05:45:13 am »
Hi Anthony,

I am late to this thread - but stopping by to say WELCOME!
Sorry you had to join this exclusive club, but the folks here are FANTASTIC!

My sister (BigSister) has seen Dr. Bigelow, as she lives in your area.
[Our family is from PA.]
I live in Virginia, so i have docs at Unv. of Virginia (UVA).

I hope you find the answer you are looking for.  And i believe 2nd opinions don't hurt either.

Best wishes and keep us posted.

Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

Chris P

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Re: Just Diagnosed
« Reply #16 on: February 26, 2011, 11:29:06 am »
Hi Anthony,

   I understand what you are going through.  I was diagnosed with an AN last year and had the Gamma Knife on June 22, 2010.  Since my tumor was small according to my neurologist ( my ENT said it was medium) , either way it was a good size for the GK.  Dr. Friedman from Shands in Gainsville is my doctor and the GK went well.  The did 10 different angles and it lasted about 40 minutes.  Other than being tired and a bit groggy from the Valium they gave me I did felt just fine.  My husband was with me the whole day except for when I actually had the GK but that did not take long. 
   I had some tenderness but for the most part I felt better after the GK then before.  My only problem was four months after I got some swelling around the nerve and it caused some facial weakness, hearing problems and balance issues.  It is now four months later since I experienced the facial weakness, hearing loss and balance problems.  My face seems to be getting better and my balance is good some days and some day it is not as good but for the most part the only thing I can not do is drive.  I choose not to because my right eye still does not blink or close all the way so it tears a lot and it impairs my vision.  Since my husband and I are retired he just takes me where I need to go. 
   My doctor told me when I had a follow up MRI in December that my tumor was dying in the center and that is what it is supposed to do and that the symptoms I was having should go away in time.  He did mention my hearing loss may not get better but my facial weakness and balance should improve.  He wants to see me in June for another MRI and to see how my face is doing. 
   I am not sorry I had the GK.  I felt it was the best choice for me.  Dr. Friedman was one of the inventors of the Gamma Knife and I trusted him when he said I was a good candidate for the GK.  I felt if for some reason down the road the GK did not work I could always have surgery.  So far the GK is working. 
   Hope all goes well with you .  Keep us informed.

Chris P.
Small AN 14mm , right side , Gamma Knife Radiation 6/22/10 Gainsville, Florida.
Balance issues, hearing loss and facial weakness appeared four months post op.

wwarr

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« Reply #17 on: February 26, 2011, 11:48:01 am »
Hi Anthony,

I am so sorry you got this news! I remember how shocking it was to hear the word "brain tumor".  I know the overwhelming feeling your experiencing. You are not alone in your AN journey and will find very supportive friends in this support group.  I just wanted to welcome you!  You have time to really research your options.  I opted to go to House Ear Institute in Los Angeles for microsurgery.  I was so happy with my surgeons.  Good luck to you and wish you the best!  Hang in there  ;)
4 mm x 8 mm 12/08
1.4 cm rt. AN middle fossa on 7/23/10
hearing and facial nerve preserved. Grateful for brilliant surgeons Dr. Friedman/ Dr. Schwartz @ HEI in LA, CA.

post op chronic headaches
”Faith in every footstep...let go and let God”

johnsather

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Re: Just Diagnosed
« Reply #18 on: October 30, 2011, 01:18:10 am »
Anthony, I had FSR in NYC just about 10 years ago by Gil Lederman who was at Staten Island University Hospital then.  It was successful, as it stopped growing and my latest MRI in Jan of this year still shows negative growth. I did lose hearing in my left ear, as I am sure the swelling caused it, but less was known of the radiation levels back then.  You sound like you are in good hands. I would go for radiation, as surgery is always an option later, and non surgical options have less side effects. Use the internet and research for yourself as well as opinions on this board.  Doctors are limited by what they know and what level of experience they have.  You will feel empowered and confident!