Physician advice needed, just diagnosed

[bluear]

Hi,
I just found out I have AN on 8/24. I have a small tumor in the left ear 6x4mm. My only symptoms so far seem to be fullness in the ears and a slight hearing loss. I'd like to get several opinions before making any decisions. I would most likely be looking at radiation treatment instead of surgery.
I'm in the Western MA area but am willing to travel wherever the best doctors might be. Any recommendations would be greatly appreciated.

Thanks,
Donna

[krbonner]

Hi, Donna.  I'm sorry you had to join our group, but I'm glad you found us.

There are many of us here in New England, and there was recently another discussion thread about the options in and around Boston.  See http://anausa.org/forum/index.php?topic=4039.0 for all that info.  There are a lot of choices around Boston.  There are also a lot of good options in the NYC area. 

We periodically have an AN brunch at a restaurant in Worcester.  I went to my first brunch about 2 months before my surgery and it made me feel so much better about the whole situation.  I believe the next one is scheduled for Nov 11.  Watch http://anausa.org/forum/index.php?topic=3561.0 for details.

Please jump in with any and all questions.  This is a great group.

Katie

[jcinma]

Hi Donna,
I am from Western Ma. (Springfield area). I had surgery in 2005 followed by radiation both at Mass General.  Your tumor is small and you are fortunate to have all options available to you.  ANs tend to grow very slowly so please take your time and research all options.  This forum is a great tool for info and wonderful support!
Take care,
Jane

[bluear]

Hi,
Thanks for your replies. Jane who were your doctor's? Any advise as to how I go about seeking out other opinions. Not sure if I need to get a referral from my primary care doctor, the neurologist that diagnosed me or I can simply contact doctors directly without a referral from my doctor. Also, has anyone had issue with insurance coverage with any of these procedures.

Thanks much,
Donna

[krbonner]

I have blue cross of MA and have had absolutely no hassles about getting anything covered.  McKenna at Mass Eye and Ear in Boston seems to be who a lot of people in this area go to, though there are certainly other excellent doctors around.  You can always call his office and see what they need from your insurance in order for you to make an appt (it's different for all the insurance companies).  If you do need a referral, most PCP are happy to give the formal referral to whomever you want for such rare, specialized issues.

Good luck, and keep asking questions!
Katie

[jcinma]

Hi Donna,
The doctor that diagnosed the AN initially was from Springfield, Dr. Jacobs.  He then referred me to Dr. Poe in Boston. He and Dr. Barker were the two that did my surgery. Dr Loeffler was the doctor for the radiation. I have Health New England for insurance and everything had to go thru my primary Dr.  Health New England then assigned me a case manager, she was terrific.  Had no problem getting as many opinions as I wanted.  I would do the research, ask my primary for a referrral, his office would fax it directly to the case manager and she would walk the referral thru whatever channels it had to go thru. She was a gift during a very difficult time.
Jane