Author Topic: ANA Support group - Stanford  (Read 2338 times)

Mark

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ANA Support group - Stanford
« on: April 02, 2010, 09:10:54 pm »
The new ANA support group sponsored by Stanford Hospital had it's first meeting on 3/31. It was attended by nearly 30 people and was highlighted by a presentation by Dr. Steven Chang on current AN treatment modalities followed by Q and A and an open discussion period for sharing of individual stories and experiences. Subsequent meetings will follow a similar format with other Stanford doctors giving presentations on a variety of topics. I have attached a link to the support group web page with future dates and scheduled presentations. If you live in the SF Bay area, My co-facilitator Christina and I would encourage you to join us.

http://stanfordhospital.org/clinicsmedServices/COE/cyberknife/acoustic_neuroma.html


Best

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

ppearl214

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Re: ANA Support group - Stanford
« Reply #1 on: April 03, 2010, 06:47:36 am »
Mark

I am SOOOOOO thrilled to hear this and thank you for stepping up to the plate to help coordinate this. What a fantastic meet you all had and a a thrill that Dr. Chang was there as a guest speaker! Well done.

Hoping to meet you next week when I fly in.  You have (internet) email :)

Congrats on a job well done!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

leapyrtwins

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Re: ANA Support group - Stanford
« Reply #2 on: April 03, 2010, 10:41:09 am »
Wow!  30 attendees.  Sounds like a very successful meeting.

And a wonderful guest speaker.

Congrats to you and Christina. 

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

Jim Scott

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Re: ANA Support group - Stanford
« Reply #3 on: April 03, 2010, 01:26:30 pm »
Mark ~

Well done!

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.

4cm in Pacific Northwest

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Re: ANA Support group - Stanford
« Reply #4 on: April 03, 2010, 02:50:19 pm »
The new ANA support group sponsored by Stanford Hospital had it's first meeting on 3/31. ...
http://stanfordhospital.org/clinicsmedServices/COE/cyberknife/acoustic_neuroma.html


Best

Mark

Mark,

That is fantastic! Way to go! Congrats to you and Christina.

I went over the link page you provided. Is there anyway that the Stanford webpage could have a hyper-link or (at least a mention by name) to the “Acoustic Neuroma Association”?

Great line of speakers. Looks great! Nick Blevins popped in to check on me a few times in my hospital room as my surgeon was on vacation. Dr. Blevins also was at the Chicago symposium. Seems like a really great guy to me.  :)
I am really interested in the
Quote
“October 7, 2010: Hearing Aids for Acoustic Neuroma Patients by Stanford ENT Audiologist (TBD)”

…as this is something the Oregon ANA group expressed a strong interest in also.

Dr. Jackler is very well spoken and most personable. He does much public speaking. I know he was on TV, when I was there, speaking up for a smoking free working environment on campus. He would be another great speaker to have.

Again congrats in getting a new group started and up and running!

You probably saw Steve’s article in the most ANA notes (newsletter) about the Oregon group. Only so much text can fit into the newsletter as it has a set format. One link that Steve initially had on there, in his fab article, had to be cut to fit the publication.

Anyway I loved the link he provided and even though it was edited out I thought I would share it here with you-all

Pink Glove Dance on You tube
http://www.youtube.com/watch?v=OEdVfyt-mLw.

It not only depicts the positive spirit of the hospital and its staff but I also think our Oregon ANA group who meets there.

Happy dancing!

DHM :)
« Last Edit: April 03, 2010, 11:31:36 pm by 4cm in Pacific Northwest »
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

sgerrard

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Re: ANA Support group - Stanford
« Reply #5 on: April 06, 2010, 01:24:17 am »
Nice work, Mark. As a new co-leader myself, I know it isn't so easy. :)

The line up at Stanford sounds excellent. I may have to schedule a visit to the Bay Area sometime and drop in on a meeting.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.