Pre-Treatment Options > Pre-Treatment Options

Hi; newly diagnosed intralabyrinthine VS, looking at options

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v357139:
Liam,
Sounds very sensible.  Best of luck.  Here's to hoping for no grow...
Rich

lryan42:
Another update -

My hearing on the LHS is markedly worse.  Got an audiogram and we're down to the 50-70db level across the board.  Word discrimination is down to 64%.  Balance is a little worse - though that fluctuates.  Tinnitus is louder and is a crappy combination of pulsatile "whoosh whoosh" along with a high pitched whine and occasional low tones.

Talking to my ENT locally we've agreed to just wait until December for the next MRI.  I'm still getting helpful results from the hearing aide, and it's not like knowing that the tumor has grown will change anything.

I've reached out to Dr. Stankovic about her recent research into medical approaches to VS management but haven't heard back from her (though her lab did reach out and offer to enroll me in their double blind aspirin clinical study - however that requires travel to MA).  After talking with my PCP I am considering just starting aspirin a couple times a week, though I understand that the very latest meta studies on aspirin for VS growth have been pretty discouraging.  It's hard not to grasp for straws, though.


This has all been a helpful reminder that nobody is promised tomorrow, and we should live in the present we have right now: worrying about what the future will look like doesn't help anything.  Easier said than done.

More updates to this thread as they are relevant.

jami:
GREAT words and attitude "This has all been a helpful reminder that nobody is promised tomorrow, and we should live in the present we have right now: worrying about what the future will look like doesn't help anything.  Easier said than done."

I was full of anxiety and urgency when diagnosed and waiting 2 moths for surgery to be scheduled felt impossible when it was first underway, but I relaxed along the way. Am thankful I had that opportunityl

Liam - I am almost 1 year past surgery and 4-5 months past CK (had to do both) and life is different, but still so much better than some folks manage through. I have traveled 90K airlines miles this year so far for business, and I get much more tired and sometimes these massive headaches, but I also plan more rests, go to bed earlier, and it all works out in the end.

As a side note - spend the weekend between Long Beach and Santa Barbara and you guys had amazing weather! Live your weather (not the traffic...)

v357139:
Sounds like a great plan.  Keep us posted.

lryan42:
Update:

From August of 2019 to now, my symptoms have worsened moderately.  I haven't had another audiogram since 2019, but subjectively my hearing is much worse.  I can barely hear very loud noises - everything else I can't discern.  My balance fluctuates but the "bads" are worse.  I still have the loud pulsatile tinnitis but also have a lot of high-frequency "e-crickets" again.  I've sort of settled into the grind of the whole thing - trying to stay positive and not dwell on things I can't control.

All that said, I'm optimistic because I have a plan for this - cochlear implant.  My doctors more-or-less agree that when I get to the point where my hearing is gone, it's a green-light for the surgery to remove it.  There's a lot of hopeful consensus that removing the tumor and installing a CI would  likely improve the tinnitis a lot (maybe end it) and give me a good shot at restoring hearing.  There's also a good chance my balance will improve with the tumor removed. 

Now, with covid on the way out (fingers crossed), I'm starting to think more seriously about getting this done.

There have been a number of studies since 2019 demonstrating the dramatic QOL improvements of CIs for the SSD so I'm really hopeful insurance will play ball here.

What a crazy 4 years this has been!

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