Hello all, I'm newly diagnosed in Portland, OR; Looking for neurosurgeon recs-

[engels59]

Hi folks, I'm Susan from Portland, OR. I was officially diagnosed two weeks ago. An MRI I had six years ago actually indicated the AN, although somehow I wasn't actually notified at the time. Both MRI's were in support of another issue (although now I'm not so sure!), and the latest MRI showed the expected slow growth. The tumor is still small however (8.6 x 5.4 x 4.8 mm), is contained in my right IAC, and I have no symptoms. I suspect an upcoming audiogram will show slight hearing loss in my right ear, but preliminary tests indicate it's hardly noteworthy right now.

I'm actually very fortunate to have had another issue which necessitated the MRI because it sounds like I wouldn't have know about the AN until irreversible symptoms presented themselves, and in my profession, those symptoms are career-killers.

I'm meeting with my first neurosurgeon tomorrow, but I'll continue looking around for the neurosurgeon and procedure that can best preserve my hearing and balance at this stage.

I'm hoping all you others out there can help with recommendations and experiences! I've already perused some of the posts and bookmarked a few of the more frequent recommendations. I'm not opposed to traveling somewhere in order to get the best treatment.

Thanks! Susan

[michellef08]

Hi Susan,
Welcome! I would highly recommend sending your MRI and records to House Clinic and Keck (both in California). Hopefully you will be a candidate for Middle Fossa, which normally can be performed on small tumors like yours and has the best chance of hearing preservation (of the 3 microsurgical options).

I had Dr. Schwartz (House) and Dr. Friedman (Keck) perform my surgery 2.5 years ago and they preserved my hearing! You can send your MRI for a free phone consult to both places. At House they perform 2 AN surgeries a day a couple days a week, so they are VERY well experienced, and I assume Keck is on the same track.

https://www.houseclinic.com/consultation/acousticneuroma
http://acousticneuroma.keckmedicine.org/

[ANnIdaho]

Definitely and your MRIs to house and keck. Both free and will call you with consultations. Note doctors will usually recommend what they do best (which makes sense) so they will most likely recommend surgery or watch and wait. Contact Dr Chang at Stanford for consultation regarding radiosurgery. I live in Boise and just returned from keck where I had middle fossa surgery to remove my 9mm x5mm tumor. 100% hearing preservation.

[engels59]

Thank you both for your replies! I'm definitely overwhelmed right now and don't want to make any quick decisions.

As far as the stereotactic vs. open surgery option, I'm in a very odd place right now in that I have no symptoms yet, and because of my career, I can't really wait until I DO have symptoms. So my choice is between which of the options BEST preserves my nearly perfect hearing and balance. I'm learning there are definite upsides and downsides to every choice..

[caretothepeople]

Hi Sue,

Thought it might be helpful to pass along this resource from the ANA. It's a great list of questions to ask yourself when selecting treatment options, and it may be helpful in weighing your decision: https://www.anausa.org/pretreatment/questions-to-ask-yourself

This is another list of questions that specifically designed to be printed out so you can bring it along to your appointments and jot down answers. It covers everything from asking about different surgery options to costs/insurance, etc: http://acoustic-neuroma.info/questions/

Hope these are helpful.

-Melody

[CassaP]

I've just had fractionated radiotherapy for a larger AN (2.5 cm) at Kaiser Interstate's Radiation Oncology department, here in Portland. Too soon to know outcome, but no complaints about the experience. From what I've heard, you would indeed want to get surgical intervention elsewhere. In addition to House, Keck, Stanford and Barrow, would add Delashaw in Longview, WA.

Good luck!