Author Topic: What Questions Do You Have For AN Doctors?  (Read 3519 times)

fbarbera

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What Questions Do You Have For AN Doctors?
« on: November 22, 2010, 09:58:40 am »
Hello All,

I am starting a project of interviewing major AN doctors and having them address the questions faced by new patients about choosing a treatment.  I am in the process of compiling a comprehensive list of questions that I will ask each doctor.  My intention is to address directly the major questions and concerns  that us AN patients have when we get diagnosed and need to decide on a treatment and a medical team.

I would love your support and assistance with this project. 

If you are able, please email me a list of all the questions you would like addressed by doctors in connection with selecting a treatment.  These could address the surgery/radiation decision, post-treatment, risks and side effects, etc.

I hope this project is of benefit to our AN community and appreciate your input.

Thank you!

Francesco



CHD63

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Re: What Questions Do You Have For AN Doctors?
« Reply #1 on: November 22, 2010, 12:05:35 pm »
Francesco .....

I am assuming you are including the questions listed on the ANA web site:  http://anausa.org/questions_for_physician.shtml

They are the ones I used when interviewing physicians pre-treatment.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

leapyrtwins

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Re: What Questions Do You Have For AN Doctors?
« Reply #2 on: November 22, 2010, 10:34:20 pm »
Francesco -

I was going to suggest contacting the ANA for their list, but I see Clarice has beaten me to it  ;D

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

Tumbleweed

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Re: What Questions Do You Have For AN Doctors?
« Reply #3 on: November 22, 2010, 11:26:21 pm »
Hi, Francesco:

It's good to see you posting here again.

Here is a link to the questions I had soon after I was diagnosed three years ago:
http://anausa.org/forum/index.php?topic=5783.0

Some of the questions may not be helpful or relevant. I was not totally up-to-speed about all my options back then. But I guess that's kinda the point.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

ppearl214

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Re: What Questions Do You Have For AN Doctors?
« Reply #4 on: November 23, 2010, 05:34:00 am »
Francesco!!!!!!!!!!!!!!!  :-*  :-*  :-*  Oh, how I have missed you!!!!!!!!!!  :-*  :-*  :-*

Ok, I'm in the same mind process as you. I've been asked to be a guest speaker at a radio-conference in San Fran in Feb with almost the same topic. ("almost" is the key word).  I'm to give a 20 min talk (to the general assembly... oy!) talking about AN journeys, choosing a treatment option (esp radio, but not limited to), how the treatment decision was made but most importantly, the post-treatment care (the good, the bad and trust me, the fugly).  Thread in "Radiation/Radiosurgery" forum.... would LOVE your inputs!.  

I want to follow your project as well (not to copy info but just to see how folks respond on this topic) and I know you are going to do great with this.

BTW, Skype? :)

xoxo
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

fbarbera

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Re: What Questions Do You Have For AN Doctors?
« Reply #5 on: November 24, 2010, 07:59:53 am »
Thank you all for your responses - very helpful!

Phyl, You are so kind - and what a great service you are providing with your talk.  I am happy to talk via Skype or phone any time!  I'll send a private email with my contact info.

Blessings to all for a wonderful Thanksgiving.

Francesco

 


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