dilemma

[madison]

hi! i know i may be jumping the gun a bit, but i want to prepare for any situation..
i was wondering how to find out how good a particular surgeon is if noone on this site has ever mentioned him. i hear
great things about house and other docs, but i don't know what i'd do if i had to choose a place for surgery.
i would also like to know..for those of you who went to House, or elsewhere, were you seeing a doctor locally?
i mean- what is it like to say to that doctor that you don't want them to do your surgery? what and how can i find out the information
i need to substantiate a good decision? PLEASE HELP-i really appreciate any advice you could give me. thanks a bunch

[leapyrtwins]

Madison -

if you've contacted the ANA for their informational brochures, they also sent you a WTT (willing to talk) list that should show AN patients in your area.  If you haven't requested this information, you should.

Lots of those on the WTT list don't frequent the Forum and might be a great resource for finding out about doctors in your area who treat ANs.  The same goes for local ANA support groups.  You might find someone involved in a group who could recommend someone.  The doctor who diagnosed you might have some ideas for you also.

Just be sure that the doctor(s) you consult with have lots of experience in treating ANs.  This is key.

I can't answer your question about House because I never consulted with them.  In fact, I never knew they existed until I joined the Forum.  I was lucky enough to get a great referral from my ENT to a neurotologist who I highly admire and respect.  I never even consulted with another doctor.

As far as consulting with a doctor or doctors and then having to tell him/them that you don't want them to treat you, this is the norm in the medical world.  Doctors are used to patients getting second (or more) opinions for lots of things - and something like brain surgery certainly warrants it.  I don't think any doctor would be shocked if you consulted with him/her and then ultimately chose another for treatment.

Just my opinion,

Jan   

[rupert]

 Hello Madison,

                 In the brain tumor business,  experience counts.   If a doctor has enough experience for AN removal or treatment of any type,  they have a history of patients behind them.   It may take some looking if they are not the big names.   Asking for some patient referrals would not be out of line IMO.   The willing to talk list is also another great source.

                I know it is a big country but,   if there are no doctors close,   a few hour car or plane ride will almost certainly get you to fine experienced people wherever you live.      Bryan

[JerseyGirl2]

i would also like to know..for those of you who went to House, or elsewhere, were you seeing a doctor locally?
i mean- what is it like to say to that doctor that you don't want them to do your surgery?

Hi, Madison,

I live in New Jersey, too, and I believe we've exchanged a few PM's. I went to House -- at the recommendation of my New Jersey otolaryngologist. I remember asking him, as soon as he gave me the acoustic neuroma diagnosis, "Okay .... now can you just perform the surgery at Monmouth Medical Center?" He chuckled and replied that he doesn't touch acoustic neuromas and has always recommended that his patients have their surgery done at House. Sounded like a wonderful idea to me, and the rest is history.

I'm thinking that you're really wondering how to tell your current doctor that you don't want him to perform your surgery?? You could certainly tell him that you're still doing research on what you'd like to have done and are considering all the options. It's definitely your decision and you shouldn't feel any sense of  "obligation" to your doctor if you decide to go another route. And I'll add that as much as I loved everything and everyone at House, there are certainly some qualified doctors in New York -- which would be a lot closer for you than Los Angeles.

Good luck as you make your decision.

Catherine (JerseyGirl 2)

[Mei Mei]

Dr. Selesnick is at Cornell Weill Medical Center at York Ave. and 70th St. in NY.   I went to see him and he is close by to you and well know for ANs. 

I ended up going to Johns Hopkins for my surgery which is closer to my home.

Good luck in your choice.

Mei Mei

[ppearl214]

Hi madison,

Don't tell Jan, but I'm in 200% agreement with her (yes, Jan... it's now in writing! )

I have also heard great things about Roland and Galfinos in NYC. I found this thread that briefly talks about them and a couple of folks that used them for surgery.  There are many other discussions on these forums regarding this team... this is just one of them that I found.

http://anausa.org/forum/index.php?topic=7513.0

To answer your question about telling a doc that you don't want them to do your surgery..... go with your gut and do what you feel you need to do to keep you healthy and happy.  It's your body... it's your head..... do what it takes to keep you healthy.  You should have no fear telling any doc (regardless if brain doc, gyn, etc) that if your comfort level isn't there, then you don't pursue. Pursue what you feel is best for you and your particular situation.

Not sure if that helps.
Phyl

[nteeman]

I would also like to add my plug for the team at Mt. Sinai, NYC.  I used Dr Bederson and Dr Smouha and recommend them without hesitation. Dr Post there also has done many AN surgeries. 

Also all involved took my insurance (United Healthcare) which made the surgery a little less painful.

Good luck,

Neal

[ombrerose4]

I will second that plug for Dr. Bederson at Mt. Sinai, who did my surgery with Dr. Choe. Both were amazing doctors, but more important they LISTEN! And they really explain every part of the process. Also the nursing care at Mt. Sinai was wonderful!

[madison]

thanks so much for all of your replies. keep 'em coming if anyone else out there has any info or suggestions. i don't
know what i'd do without this forum!

[Jim Scott]

Madison ~

The first neurosurgeon I consulted (recommended by my PCP) after my diagnosis seemed inexperienced and was evasive when I asked him how many AN surgeries he had performed.  A few days later, thanks to a referral from my wife's neurosurgeon (who didn't operate on ANs), I found a neurosurgeon who had decades of AN removal experience and I hired him.  Next to marrying my wife (the lovely and gracious Tina) it was the best decision I've ever made.  When the first neurosurgeon's office called (a week later) to schedule a follow-up appointment, I simply told the secretary that I had chosen another doctor.  She was curt ("I see") and basically hung up in my ear.  I really wasn't concerned.  This was a 'business' decision and mine to decide, as it is yours.

Jim