Searching for Best Doctor for Vestibular Schwannoma

[bmock]

I am looking for a Dr. that does at least 30 or more surgeries a year on a vestibular schwannoma located anywhere in the USA. In other words, the best Dr. with experience.  Can you identify him/her to me and possibly suggest how to contact him/her?

[CHD63]

bmock ......

Welcome to this Forum!  You will find here a wealth of information and loads of support as you walk this journey of AN (or vestibular schwannoma).

I wish we could wave a magic wand and say go to _____________ Hospital and all will be well.  As you will find out, each of us has a different story to tell, in different states, and different hospitals/doctors.

Couple of questions come to mind:  Are you newly diagnosed with an MRI with contrast?  If so, what is the size and location of your tumor?  What are your symptoms?

So much depends on the answers to these questions, as well as your age and general overall health.

In my case my AN was over 2cm when diagnosed and was one of those rare rapidly growing types (most are very slow growing).  Upon the referral of my ENT, trusted medical friends, and my comfort level, I went to a neurosurgeon at Duke University in North Carolina, who surgically removed the AN, via retrosigmoid approach.  I have absolutely no regrets on the choice of treatment and have complete trust in my neurosurgeon.  He got all of my tumor, I have 20% hearing left in my AN side ear, no headaches, and no facial issues.  I do have significant tinnitus and some manageable ongoing balance issues.

Let us know more about your situation and keep posting!

Clarice

[leapyrtwins]

bmock -

I wholeheartedly agree with Clarice.

Each patient has a story to tell and chances are each patient will tell you that his/her docs & hospital are the best.

I live in Illinois and I had my surgery locally.  IMO I had an excellent outcome - couldn't have asked for anything better - so I'll be the first to admit that I'm biased.  I personally think my doctors and hospital are the best and I highly recommend them.  However, I am not alone - the majority of us here are biased; I'm not the only one who will advocate for my docs/hospital.

I'm imagining that many here will tell you HEI (House Ear Institute) in Los Angeles, CA is the best - since they are the pioneers of AN surgery and have done many, many surgeries.  However, lots of us did not go to House and our successes have been just as great.

No doctor can guarantee you anything 100%.  I suggest you contact the ANA and ask for their informational brochures, do your homework, investigate all your treatment options (you may be able to choose Gamma or Cyber Knife or surgery), weigh the pros and cons of each treatment and make your decision.  AN treatment decisions are highly personal - one size does NOT fit all.

Best,

Jan

[suboo73]

bmock,

Welcome to the Forum - but sorry you had to join this crazy AN club   

I live in Virginia and have been both to UVA and John Hopkins.
These major medical centers have doctors who have more experience with ANs.
[My local ENTs dismissed my symptoms for over 12+ years...]

After being diagnosed in Oct. 2008, i continue to do research and decided to choose Watch & Wait for now.
The important thing is to have an MRI with contrast and then do follow-up MRIs - i have had 2 and will have my one year follow-up before the end of 2009.
My AN is approximately one cm and i have minimal symptoms right now, a feeling of fullness in the ear, some tinnitus, and one crazy bout of vertigo in late Jan. 09.
After everything i have learned in the last year, i am ever mindful that i don't want to get to the point where my symptoms increase/get worse - it's a roll of of the dice, but i think i know what kind of treatment i would have if i needed to do so in the near future. 

Please keep posting and we will try to answer your questions/concerns.
You are now part of the Forum Family and will meet some of the most AMAZING, WONDERFUL FOLKS, ever!
This is one AWESOME group! 

Sincerely,
Sue

PS Were it not more for sister, i would not be here today - she was diagnosed in a matter of months, 6 months before me.  I am grateful to HER ENT for recognizing the possible AN; and grateful to my doctor at UVA for writing my MRI script.  As they say, knowledge is power!

[Desilu]

Hi bmock,

I agree with the statements made by everyone else. You have to do your research (that's why your here) and find the doctor that is best for you. I am one of the ones that traveled from Indiana to Los Angeles to go to House Ear Clinic. Dr. Brackmann was my doctor. A bit older than some but very experienced and very personable. House Ear Clinic has their own website which is worth checking out. They will give you a free phone consultation if you send them your CD or films of your MRI. The ultimate decision is up to you. Whether you stay locally or travel afar you must be sure your are comfortable with who you choose, you are putting your life in their hands. Please keep us updated on your research and we are here to help anyway we can. I wish you the best. Ann

[chocolatetruffle]

besides location and size of tumor, don't forget to consider insurance coverage and if that doctor/facility is within your network.  i went to House for their expertise in translab and i had great success with brackmann.  but again, each individual is different, so recovery and results could differ from patient to patient.  the tumor is slow growing and you got time to "shop" around, there is also a thread within this forum for a list of "interview" questions. hope this helps and good luck!