Author Topic: Just learning about my newly diagnosed AN  (Read 9350 times)

steve

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Just learning about my newly diagnosed AN
« on: May 20, 2005, 08:36:46 am »
I was recently diagnosed with AN on May 13; my lucky day.  My MRI showed it was small 1.5 cm.  I am just learning about all the possible side effects.  My local ENT said to wait a year for another MRI, but all I am learning shows that waiting to long reduces tratment options.  I am in Vero Beach Florida, are there any good AN centers in Florida?  I guess House Ear Clinic seems to be a favorite in LA.  Right now I have reduced hearing in my right ear, with the sound of oceans, no balance problems yet.  I am gratefull that I found this site, as my local ENT was not very informative.

Dave_S121

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Re: Just learning about my newly diagnosed AN
« Reply #1 on: May 20, 2005, 10:52:16 am »
Steve, You did come to the right site.  I personally do not know of any doctors in Florida but have heard from other sites that Dr. Max Medary is highly thought of.  He is in Orlando so I'm not sure how close that is for you.  Here is a link to his site:

http://www.neuro-link.com/index.htm

If your tumor is 1.5cm unless you are older and in poor health I wouldn't wait a year for a second MRI before deciding how to proceed.  You right to assume that you might have fewer options in a year.  If you leaning towards radiosurgery you could lose more of your hearing in a year.  If you want to go the surgery route there is a speech discrimination threshhold that may limit your options to try and perserve any hearing.  I would not wait 1 year to seek out a couple of different doctors and decide which is the best route for you, surgery, radiation therapy or watch and wait. 

If I can be of further assistance email at:

dskaja@comcast.net

Dave Skaja
52 years old
2.2cm AN Right side
Removed 10/20/2004 Translab
Dr. Wiet and Dr. Kazan
Hinsdale Hospital, Hinsdale, IL.

Bob Partak

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Re: Just learning about my newly diagnosed AN
« Reply #2 on: May 20, 2005, 09:57:48 pm »
I agree with Dave. While your situation was like mine, same size tumor, and loss of some hearing, I would not wait the year without doing a lot of research in the meantime. You may decide to take one of the options way before the year is up. My intention was to wait 6 mo.s , but I noticed my hearing getting worse so I decided on the Cyberknife route and had treatment 3 months latter.  You may want to check out the CK web site at www.cyberknifesupport.org just to become familiar. You can also ask the doc's specific questions including locations near you.
Remember this is not cancer, and the tumor grows very slowly (2mm's per year), so don't get into a panic. You just need to spend time checking out your options, weighing the pros and cons of each, and go for the one you think is best for you. That's the hard part. Once you decide most of the battle is over in my opinion.
I had only 44% word recognition (non-usable) when I was diagnosed, after CK rad. and 7mo.s latter it is 0%, although I can hear loud noise but for the most part - dead.  The rad. made me feel tired for a long time ( 3 mo.s) and I still have mild balance issues. Also, after 6mo.'s CK I developed a left facial muscle spasm that lasts for only a minute and developes while shaving as a rule every few days - temporary I hope.  So rad.s have side effects as well as surgery, but not as many as from what I learned. The ANA has some great literature you can request. One is a survey comparing surgery symptoms and rad.s symptoms, before and after treatment. It's hard to do a direct comparison because the rad.s sample of patients is small, but it is informative.
I wish you well and try not to get too depressed and upset, you will see by reading other responses that everyone seems to meet this challenge and becomes a helpfull gaurdian angel for a future patient.  You will be O K , take good notes so you can talk and understand your doc's. That always helps. Bob P. at bpartak@tah-usa.net

jugee

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Re: Just learning about my newly diagnosed AN
« Reply #3 on: February 23, 2011, 07:14:43 pm »
Steve, did you ever find a Dr. in Florida to help you?  What was your decision?  We have been to see Dr.Medary and like him, but not sure yet.

shikapo

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Re: Just learning about my newly diagnosed AN
« Reply #4 on: November 15, 2014, 01:12:55 am »
Today I was fortunate to have been taught by you.

 


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