Pre-Treatment Options > Pre-Treatment Options

Hi; newly diagnosed intralabyrinthine VS, looking at options

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lryan42:
Update:

I recently had another MRI which showed a stable VS (well, that's what the UCSD and radiologist say - my local neurotologist thinks it's grown very slightly).  I also had a hearing test (my first since 12/2019) which showed nearly complete deafness.  My two "best" scores are a 95dB at 8kHz and a 100dB at 6kHz - otherwise it's all 110dB and worse.  The audiologist who administered the test was super concerned about how severely my hearing had deteriorated until I explained that this was entirely expected, due to the peculiar location of my particular VS.

It's a little strange to say, but I'm so grateful I'm finally SSD!  This milestone means I can get out of the "watch and wait...while your hearing gets worse and your tinnitus gets worse" purgatory I've been in since I first got diagnosed back in 2019.  Ever since my hearing started fading in 2019 the plan has been to wait for me to become SSD and then remove the tumor and install a cochlear implant.  And now, here we are.

I'm doing the CI eligibility testing in a couple of weeks to appease the insurance company, then I'm planning on getting the surgery in early 2022.  Exciting!

Mia_M:
Hello Liam,

Just wanted to say I appreciate your thoughtful, detailed updates, and hope you'll keep at those. I'm newly diagnosed as of last month — this is actually my first post here — but I feel already like I've consumed enough research to present a thesis  :P. Mine's a small one, a little bigger than yours, so its W&W until at least late summer after the next MRI.

If/when I get to that fork in the road, my current feeling is that I'll take the CK route, no microsurgery. I'm early 60s, so I look at time a little differently than I did in my 40s, when I still felt like I had forever and a day to heal from anything that might come my way. But we never know what might compel us to redraw our hard lines in the sand either. So we'll see. I've also been reading about various drug trials, one interesting one in particular involving mifepristone, aka RU-486. Weird! Keeping an eye on that one, for sure, since aspirin doesn't seem to have panned out.

Looking forward to hearing how you fare with your surgery, which I believe you have planned in 2022. Wishing you ALL the best at every step, Liam.

donjehle:
Thank you, Mia_M for your first post!  I can tell that you have been very thoughtful about it and have studied your options.  Please continue to share as you continue on your journey.  Everyone's journey is a bit different, but we all gain as we join hands (figuratively) and support one another.  I know you have a lot you could contribute.

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