Welcome to the forum. Yes, a diagnosis is a shock especially when a word like "tumor" is used.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
decision.
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.
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 was that this was unique enough of a condition that it
warranted going where the expertise was: even if it was outside of my local
area. I looked for patterns in the posts on the listserv related to
treatments and doctors. The listservs and guest books provide great info,
but it can also raise anxiety because each tumor is individual.
Then it dawned on me that I didn't know how listserv 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?
That caused me to put together a chart. I wanted to know
the data related to
hearing preservation, facial nerve preservation, in relationship to the
size of the tumor etc... It is another way to look at treatments.
This chart compared some of the various treatments using citations from
medical professionals, websites, or physician's e-mails. It is a laypersons
attempt to condense medical citations and information and that makes this
chart different from most. However, I am *not* a medical professional and no
decision should be made based on the chart. It was meant
to be a starting point for a conversation with your doctor. Please e-mail me if you'd like a copy.
The chart also includes some of the most common websites.. 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" at the
http://anworld.com/Here is another link that you may find useful when you go to the doctor. I found it absolutely necessary to come in prepared with a list of questions to ask the doctor. Otherwise the doctors say what they want to say and are out of the room before you have a chance to digest what they have said and then to gather your thoughts enough to ask intelligent questions.The beauty of it is that you can print it out as many times as is necessary and there is a space for you to write notes.
http://anworld.com/questions/Kindest Regards,
Kate
