Welcome to the forum. You are doing the right thing by going out and trying
to find information before making a commitment to a treatment. As you may
know, there is no *best* way to treat it. They all can have unanticipated
consequences--even waiting and watching. It ends up being an individual
After all my reading, I learned that the treatment choice depends on the
size of the tumor, its location, and your hearing level mostly. It took me
until September (and I was diagnosed in May2001 and my treatment was at
the end of November2001) to know what I really wanted to do and where to go.
I considered each treatment option seriously and oftentimes felt overwhelmed
with all of the information.
My right sided growth was 1.5 cm. After reflecting over my experience, I
want to *emphasize* one thing: the experience, expertise and passion of the
doctor you select for treatment means everything no matter which treatment.
Most agree that they need experience with more than 100 cases. That
statement circles back to the paradigm shift.
Through my reading, I also learned about potential side effects and about
the many excellent facilities throughout the country. One of the first
decisions I made (because I had insurance) was that this was unique enough of a condition that it
warranted going where the expertise worked even if it was outside of my local
area. I looked for patterns in the posts on the listserv (before this format it was a listserv) related to
treatments and doctors. The listservs and guest books provided great info,
but it can also raise anxiety because each tumor is individual.
Then it dawned on me that I didn't know how the member's posts and the
side effects they were experiencing fit into the larger picture.How frequent
were side effects related to the various treatments? Could I generalize
from the qualitative data? I ended up making a char of the various treatments and outcomes by side effects. It is outdated now, but that helped me look at probability related to my information.
Ultimately I did select to be operated on at House Ear in LA because Middle Fossa surfaced as my preferred choice. Based on my data, it gave me the best chance for hearing preservation and facial nerve preservation both. In Illinois, the most used operating procedures were translab and retrosigmoid. I also went to House because many of the surgical procedures and tools were products of House research and doctors.
I also put myself through some questions that helped me make my decision. They are included
under the heading "One Size does not Fit All" . http://anausa.org/forum/index.php?topic=9601.0