Author Topic: 6 years later, and I'm still in the club that nobody wants to be in...  (Read 3910 times)


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So, it was almost 6 years ago that I popped into here, confused, and anxious, not knowing what to expect, or what to do.

Nutshell, I was diagnosed with a right sided intralabrynthine schwannoma that, at the beginning of 2014, was about 4mm x 3mm x 4mm in size. It had nuked most of my usable hearing on that side, and was causing, at times, intense equilibrium issues.

Fast forward in time a bit. The tumor remained stable in follow up MRIs. Periods of intense vertigo disappeared, and my brain adapted to where I have few problems so long as there is enough light for me to see. It's still a bit wonky to be on a bicycle and look over my shoulder backwards, but even that I can general do without risk of brain confusion leading to a sudden and unfortunate tilting of my bike toward the ground. My hearing is, short of jet engine level volumes, pretty much nonexistent on the right side, but all in all, I've been able to mostly ignore the tumor and just live.

My last MRI, which was at the end of last week, however, showed that the tumor has grown (something that I kind of suspected, since in the last 8 months or so, I've experienced occasional very mild pain or fullness in that ear). The growth is modest. The nurse this afternoon gave me a measurement that isn't quite clear, but in at least one of the dimensions, the tumor now measures 5.5mm, and I have a message in with the doctor to follow up with more specific information.

And this all leads me back here. I am seeking a couple pieces of information that I may be able to find elsewhere in the forum, but if not, here's what I am trying to sort out:

1) The doctor has ordered a CT scan of the temporal bone. Given my understanding of things, I don't understand why. I am trying to research context before I have a chance to talk with her again, but if anyone has any information, or might be able to point me to information about why a CT scan would be warranted after an MRI for this particular flavor of tumor, that'd be handy.

2) Denver area options. 6 years ago it seemed like there was a dearth of knowledgeable resources in the Denver area (I'm in Wyoming, and the Denver Metro area is the closest large population center), which strongly suggested that I'd have to travel elsewhere in the event that I needed surgery. Given that the damn thing has ruined my plan of living the rest of my life without it growing, it's possible that surgery may once again be in the spectrum of options. Does anyone know if the Denver area has a good resource now, or am I still facing long distance travel?

Thanks much,

Kirk Haines