Hi Trista,
Sorry to hear about your recent AN diagnosis. I know it is a real shock when you find out you have a brain tumor!
Can you tell me the size of the tumor and any symptoms you have experienced? The size of the tumor isn't always a predictor of the symptoms, as the AN location and what nerves are being impacted (balance, auditory, facial) that are most important.
Maybe it would help you if I gave you a quick rundown of my AN experience. I live about an hour North of Seattle and was diagnosed with an AN on an MRI in October, 2013 after experiencing some imbalance and mild tinnitus. I had noticed these for several years but had just never had it checked out until it got to be more noticeable. My hearing in both ears had declined at the high frequency end, but was still quite good as far as word recognition was concerned.
The AN is in my left ear bony canal, and is .9 cm. The neurologist recommended I contact a regional AN center (either Swedish Medical Center or the U of Washington Medical Center) since they deal with many more of this relatively rare tumor than other medical facilities. I checked and Doctor Doug Backous at Swedish headed up their AN group so my wife and I set up an appointment and we met with him (I was one of three AN patients that day). He was very professional, outlined our options (microsurgery, radiation therapy or Watch and Wait) and I was ready to have surgery to "get that rascal out" and set up the surgery for early January, 2014.
After the appointment, we had an opportunity to meet with an ANA Support Group headed up by Barb Shinn. She has been on Watch and Wait for over 4 years. The rest of the people attending the meeting were post op. Several of them suggested I might want to consider radiation therapy as an alternative, so we set up a meeting with Dr. Vermeulen at Swedish. She is a fantastic doctor, very friendly and knowledgeable, and is in charge of both radiation therapy machines (Gamma Knife and Cyber Knife) at Swedish. She met with us for 2 1/2 hours and we decided to go with the CK route, rather than have microsurgery.
Later, in preparation for having the radiation therapy, I had another MRI which showed the tumor had not grown at all in the last three months.
One of the side effects of the radiation would be a loss of hearing in my AN ear within 2 - 6 months. The reason being that even though the radiation is tightly targeted, it would affect the cilia in the cochlea which was in close proximity to the AN.
So, I asked myself a key question; as a 70 year old man who can still hear reasonably well, why would I take a treatment that would make me deaf in my AN ear if the symptoms weren't that bad and I could still function at a fairly high level? (my wife and I square dance 3 - 4 times per week and I think the loss of hearing would affect my ability to dance properly). The answer I came up with was that "I shouldn't" so I moved myself into the W & W category.
So where do you go from here? Some thoughts include finding out as much as you can about the AN.
Join the ANA (they will send you several well written and understandable pamphlets about AN's and some options).
Consider a regional center that deals with substantial numbers of AN's (Swedish or the U of W, House in LA, Stanford Medical Center, University of Pittsburgh, Mayo clinic, etc.) and do some research about them as well as the doctors at the centers.
One thing to be concerned about is the insurance - will they cover the costs? (which will be substantial, unless you are on W & W).
Another consideration may be the travel. Are you comfortable flying or driving?
Depending on your situation, become an AN "expert" and take the time to investigate your options and be as objective as you can about it. AN's are normally slow-growing (about 10% increase per year is "normal") so symptoms may not increase much over several months and this will give you some time to consider the options carefully. In my case, the doctors presented the options, but did not give me any guidance, so it was up to me to make the decision. I think that was one of the factors in my "waffling" about the treatment path I was going to undergo.
I know that Idaho does not have an AN support group, but Barb Shinn is a friendly and knowledgeable lady who would be able to discuss your options. She can be reached at 425-771-2105 or via email at bsw909@comcast.net.
Good luck to you, and hope to hear back from you soon,
Rod
