What's the process in getting additional opinions?

[Debbiemg]

Hi all, My husband was recently diagnosed with a 2 cm AN, and he would just as soon have me doing the research. (He gave this site a try last week but was a bit overwhelmed by the amount of info!)

We already have two appointments set up with different doctors to explore our options. But I keep reading about how many of you have gotten several opinions. The same place/doctors keep popping up, so I have an idea of who to contact, I am just not sure how we get started. (Our primary care physician made our first two appointments.)   

Do we just call each AN Center? Or ask for a specific doctor? Should we be upfront ("We know we are not going to travel across the country to you ...we just want your opinion.") or do we actually go about it as though we'd consider making the trip?  Right now we feel we will be in good hands at Mass. General Hosp, but who knows. I assume there is a charge associated with getting each new opinion. And most importantly, can these doctors really make a qualified recommendation based on just looking at an MRI? Don't they need to see the patient face to face?

Thanks. And stayed tuned for more questions!   

[CHD63]

Hi Debbiemg .....

There are several medical facilities around the country who will do free consultations, with no expectation you will be treated by them, if you send a copy of your MRI, your most recent audiogram, and pertinent history of symptoms.

The ones I know who are extremely experienced, have good patient outcomes, reliable, and usually a fast turn-around with a phone call and/or email are:

http://acousticneuroma.keckmedicine.org/
http://www.houseearclinic.com/consultation/acousticneuroma
https://med.stanford.edu/profiles/steven-chang
http://www.neurosurgery.pitt.edu/person/dade-lunsford

It probably would be best to contact the 3rd and 4th ones listed by phone first to find out for sure what their requirements.

Hopefully others will add some suggestions on here, as well.

Clarice

[arizonajack]

can these doctors really make a qualified recommendation based on just looking at an MRI? Don't they need to see the patient face to face?

I sent my MRI to House in CA for the free telephone evaluation. The surgeon spent 5 minutes on the phone with me and recommended translab surgery. I learned later that House always recommends surgery because they sell surgery.

I was fortunate to live in the same city as the Barrow Neurological Institute (Phoenix) which has a multi-disciplined Acoustic Neuroma Center. My neurosurgeon is highly experienced in surgery and radiation and after a thorough evaluation of my MRIs, age, medical history, and AN size, agreed that Gamma Knife was my best course of treatment. I don't think that it's realistic to expect that kind of evaluation without a face to face consult. It cost $400 but it was worth it.

[Ruthie Mac]

You mentioned Mass General, so I'm assuming you're near Boston? I'm in Massachusetts and my insurance covered consultations in State, so first I went to: Dr. Vernick (ENT) Brookline, & Dr. Devaiah (Boston Medical) Both were great.
I needed to decide between W&W, Surgery or Radiation.
For Surgery advice I went to Dr. Barker (Mass General) - he has the most experience with AN's. For radiation research I went to Dr. Loeffler (Mass General- proton radiation)
Cyberknife dept at Beth Israel & Cyberknife at Boston Medical,
UMass Memorial (Varian LINAC) Dr. TJ Fitzgerald
Then I paid out of pocket $500 to consult a surgeon in NYC  at NYU Langone - Dr. Golfinos, but was mysteriously reimbursed from my insurance (Harvard Pilgrim).
I took advantage of the free consult from House in L.A. Was assigned to John Goddard, who was terrific - we had a long talk and he called me back twice in the 6 months of my research to follow-up on my decision, even though I told him if I chose surgery it would be in Boston or NYC.
I lined up all the appointments myself, then my primary care took care of the referral paperwork.
I cold called Doctors out of State, and had amazing responses. I learned so much about radiation by phone from Gil Lederman (Radiosurgery New York). He gives out his cell phone number and actually answers. He was OK with talking about theories of different treatment options without needing to see an MRI.
Also had long talks with Dr. Lipani (Princeton Neurological) & the Cyberknife Dept. at Yale New Haven. without needing to see my MRI.
I needed to buy a new briefcase for all my notes, which we nicknamed the 'AN football'
So, after all that...I decided on radiation with Dr. TJ Fitzgerald at UMass Memorial, which is a long story, but I wanted to just address your question of seeking good advice.
Hope this helps..
Ruth

[v357139]

I probably set the record with like 10 second opinions .  I found doctors mostly from this site, and called their office and made the appt.  I even drove up to Mass Gen'l from New York.  My insurance paid.  I also got a phone consult from House, and that is where I ended up going.  So they can definitely tell all they need to from the MRI.  Best of luck and keep us posted.