Acoustic Neuroma Association

The last few weeks, since this dreadful tumor was discovered, I have been scavenging the internet, trying to educate myself as best I can while simultaneously avoiding too many gory details or videos that will frighten me further.  I discovered the Acoustic Neuroma Association website, which has provided me with lots of information, information on support groups, a discussion forum, and more about this uncommon condition.  It is really nice to be able to read posts from other patients who are in or have been in the same boat as me.  Admittedly, some of the stories are absolute nightmares and scare me to tears, but I think it helps to at least have a realistic idea of some of the (many) risks of treatment.  None of them are particularly appealing, none of them are guaranteed, and none of them are without risks.

One thing I have read repeatedly is that, given that this is a rare type of tumor, it is absolutely critical that you find doctors with considerable experience treating acoustic neuromas.  And that you get multiple opinions and find doctors that you are comfortable with, confident in, and that have such experience.  I’m not sure what qualifies as “considerable” experience, but a basic ballpark I’ve heard/read a few times now is that they do at least 30-50 of whichever procedure (surgery or radiation) per year.

I have my first appointments with these specialists (neurotologist and a neurosurgeon) coming up but am already thinking I should consider 2nd appointments with some different doctors.  The ANA’s website does list places / doctors that have met their defined criteria, however, it is self-reported by these doctors (and presumably, there is some cost associated), so, while I’m trying not to put TOO much stock into that list, I do see UT Southwestern as the only place listed currently in Dallas.  So I will likely look to them for my 2nd opinions.

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