Author Topic: Information needed  (Read 1761 times)

kemar

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Information needed
« on: February 11, 2009, 10:20:49 am »
I have just been diagnosed with AN and have an appointment with Dr. George Hashisaki at the Univ. of Virginia Medical Center in March. Does anyone have any information about this facility or Dr.? Also any info about any other facility or Dr. would be great. Just feel kinda lost right now.

Tisha

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Re: Information needed
« Reply #1 on: February 11, 2009, 11:10:02 am »
HI Kemar,

I'm so sorry to hear you have been diagnosed with an AN.  It's a confusing and frightening time, and luckily you've found the best place in the world for information.  I was diagnosed last October and it was this website that probably gave me 80-90% of the information I needed to make a decision.  You'll have to just start researching all the topics within this site, and you'll gain alot.

How large is your AN?  Depending on it's size, you have options:  Watch and Wait, Radiation or Surgical removal.

I sent my MRI and questions to Doctor's around the country for radiaition, the method I finally chose.  I didn't care about travel costs, I wanted the most experienced doctors there are.  There are many, and you will find tons of names from the member on this board.  I'll throw a couple of places outs:   House Ear Institute in California is renowned for the surgeries on AN's.  I'm sure someone will direct you to those docs.  I had radiation from Dr. Chang at Stanford University in CA, where they invented the cyberknife machine.  He does probably as many as anyone in the country, and he's a neurosurgeon, too.  My advice is to choose someone that does ALOT of these, either radiation or surgery,,,not just a few a year.

Other will chime in, and please look around.  Another site I lookes at was ANWORLD, alot of good info to get you started!

Tisha
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

Kaybo

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Re: Information needed
« Reply #2 on: February 11, 2009, 11:53:32 am »
Kemar~
I can't help you with doctors, but just wanted to welcome you...

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Jim Scott

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Re: Information needed
« Reply #3 on: February 11, 2009, 02:05:57 pm »
Hi, Kemar...and welcome.

I'm sorry you're one of the relatively few individuals to receive a diagnosis of an acoustic neuroma this year but at least an 'AN' is almost always benign and treatable. 

This link will take you to the Physician section of this website and the University of Virginia listing along with a brief resume (and a photo) of Dr. Hashisaki.  http://www.anausa.org/medctr_list/university_of_virginia.html 

I hope this is of some help to you and of course, please peruse the entire ANA website as well as the message boards for lots of information.  We stand ready to help you research your options and choose a treatment, physician and facility.  Please consider this website and especially, the forums, as a resource. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

leapyrtwins

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Re: Information needed
« Reply #4 on: February 11, 2009, 02:13:18 pm »
Hi, Kemar.

Thanks for joining us; wish it was under better circumstances.

My docs are in Illinois, so it's not practical to recommend them to you - although I would in a heartbeat.

If you haven't already, you may want to contact the ANA and ask them for some of their informational brochures.  In addition, they will send you a WTT (willing to talk) list of patients who will discuss their experience with you. 

I'm not at all suggesting that Dr. Hashisaki isn't a great doctor - I don't personally know of him - but some AN patients like to get second opinions.  There may be someone on the WTT list that lives in your area and can recommend a local doctor.

Good luck and please, feel free to ask us anything,

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

bell

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Re: Information needed
« Reply #5 on: February 13, 2009, 12:42:05 pm »
Hi Kemar,
Welcome, I agree with everyone, I had a second opinion and did a lot of research, it helps to be informed and have a list of questions for your doctor.
I went to the doctor of my second opinion and was 100% satisfied.  Can not help with East coast area, since I live in MN.  Good luck and stay in touch,   Bell

macintosh

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Re: Information needed
« Reply #6 on: February 14, 2009, 08:45:34 pm »

As far as reputation goes, UVA neurosurgery is top flight. Dr. Sheehan has been (maybe still is) the editor of the Journal of Neurosurgery,which means a lot in terms of peer recognition.

The other very highly rated facility nearby you would be Johns Hopkins. At either place, you should get the best treatment available.

Good luck--this is very scary at first, but usually turns out not nearly as bad as you imagined. I'm two years post-radiation and doing fine,

Mac