Author Topic: Great meeting!  (Read 3080 times)

ombrerose4

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Great meeting!
« on: March 26, 2011, 03:49:56 pm »
We just had our second, very successful ANA NYC support group meeting.  I want to thank everyone who joined us for this meeting. We had Dr. John T. Roland, Chairman of Neurotolgy at NYU Hospital, and his associate Dr. M. Cosettil as our speakers. They was excellent! Dr. Roland shared alot of new information regarding new research being done, including the use of Cochlear implants for SSD and he spent alot of time answering questions. I think we all got alot out of this meeting. For those of you that were unable to attend, I hope you will join us for our next meeting in early June.

P.S. @ Mickey- you confused me when you introduced yourself as Mike :)
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

Jim Scott

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Re: Great meeting!
« Reply #1 on: March 26, 2011, 04:01:11 pm »
Lauren ~

Congratulations on what was obviously an outstandingly productive ANA Support Group meeting! 

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.

G_Man

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Re: Great meeting!
« Reply #2 on: March 26, 2011, 04:35:23 pm »
Big thanks to Lauren and Miranda for doing a great job once again.  I'm sorry I was late, my apologies. 
I got the impression that Dr. Roland was into every aspect of this from soup to nuts.  That's exactly the kind of attitude I want to see from the medical professionals.  He was very knowledgeable about any aspect of treatment, diagnosis, etc that he was asked about.  It was a really good turnout once again too.  It sounds like we will be having a lot more input from them in future meetings.  I look forward to being the most knowledgeable W+W patient on my block  8)
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

ombrerose4

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Re: Great meeting!
« Reply #3 on: March 26, 2011, 05:04:32 pm »
Glen,

Sorry I didn't have a chance to say hello, but I am so glad you were able to join us. I was also very impressed with Dr. Roland's range of knowledge and interest not just in the surgical aspect of acoustic neuroma's, but the research aspect too! I can see that Dr. Roland and his staff will be very available to us for future meetings on many different topics. He seemed like a very caring and honest man, spending alot of time after the meeting speaking with people, and not rushing off. I can see why people speak very highly of him. Looking forward to many more successful meetings in the future  ;D
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

Mickey

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Re: Great meeting!
« Reply #4 on: March 26, 2011, 07:28:46 pm »
A well put together intimate kind of meeting, nice job!  Dr Roland + Cosetti were very informative and up to date on the latest. There was alot of knowledge put out there for each type of treatment and after treatment especially for improvement of hearing post opp.. Being a W+W person I was happy to get some imput on information to where possible drug theropies are going in the battle to shrink AN`s. They mention that for NF2`s there has been alot of participation with quite a few different drugs and they are really excited going into the future. With regular AN`s there approach is a bit different. Looking into different drugs administered before operating and examining the AN after to see what effects the drugs had. They also have been asking for participation in this project. All and all I got the impression that eventually (maybe sooner than we think) drugs may be another viable way to treat AN`s. Lets hope!  At the meeting I signed in as Mike but on this board I`m known as Mickey. Best wishes to all, Michael... haha

ombrerose4

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Re: Great meeting!
« Reply #5 on: March 26, 2011, 08:24:08 pm »
So please forgive me if I looked confused when you introduced yourself as Mike. A little voice in my head was saying " but he looks like Mickey from the brunch", lol.
I was very glad you were able to attend and I agree that there was alot of interesting information learned at this meeting for everyone. :)
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

Keri

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Re: Great meeting!
« Reply #6 on: March 28, 2011, 12:46:45 pm »
This is great to hear!! I'm glad you had a productive support group meeting that was full of... support! 

Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

G_Man

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Re: Great meeting!
« Reply #7 on: March 31, 2011, 06:48:17 pm »
Hey Mickey, let's hope the drug they find that shrinks the tumors the best is Viagra.  Talk about double the bang for your buck  :)
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.