Just thought I'd say hi, leave a breadcrumb here, and introduce myself. I'm Liam from Irvine (Southern California). I'm in my early 40's and I've just learned that I'm the not-really-proud owner of a small (5 x 4 x 3mm) intralabyrinthine vestibular schwannoma apparently located inside
the vestibule in my left ear.
In one sense, it's a tremendous
relief to finally get a diagnosis that explains my symptoms. For a couple of years my disequilibrium has been variously diagnosed as a vestibular neuritis and then later endolymphatic hydrops or vestibular migraines. Frustrating.
On the other hand, it's a bummer to have a VS as you kind folks know all too well.
For me, this started as an incredibly vague sense of disequilibrium 3 or 4 years ago. If you have balance issues you know how hard this can be to describe especially in the beginning. It fluctuated for a couple of years and finally landed me at a balance clinic in Newport Beach where I underwent a complete workup and 6 months of vestibular rehabilitation which brought almost all my quantitative numbers back to "normal." Early last year I started experiencing sudden hearing loss which responded well to prednisone. The hearing loss led to my first (noncontrast) MRI last summer. That MRI showed a small lesion inside the vestibule, but the radiologist and my ENT both thought it was most likely some type of scar tissue from the VN. My follow-up contrast MRI earlier this week tells the full story..
So, I'm starting down the well-trod path to figure out how best to manage this condition.
My current primary symptoms:
- Unilateral hearing loss. Since my last audiogram this is down across the board; now 35-45dB in the low frequencies and 60dbB at 6K and 8K. Word discrimination 96% (75 dB)
- Pulsatile tinnitus with a background of whirring tinnitus. It's like my own personal sonogram in my ear! Not awesome.
- Disequilibrium. I'm really used to this now; mostly annoying rather than bothersome.
- Sound-induced nystagmus. Loud dog barks in an enclosed area make my eye jump.
- Aural fullness
- Slight, fleeting waves of pain
I've seen my local neurotologist (Dr. Shohett) who has pointed me at a couple folks to speak with:
- Dr. Chris Duma (Hoag)
- Dr. Derald Brackmann (House)
- Dr. Robert Jackler (Stanford)
I had previously seen Dr. Doherty (a neurotologist now at Keck and part of their AN service) and was planning to get back to see her, though I'm wondering if it makes sense to also pull in some of the other Keck folks I read so much about here.
My local ENT's sense is I should get treatment because my symptoms are worsening and the location of the VS is unusual. While apparently small by comparison to others (5mm at it largest extent), it's inside the vestibule and there apparently isn't much room in there...the ENT said it may have completely filled the vestibule by this point.
The ENT said the choice between radiation and surgery is a very close call here. He wasn't sure how well radiation would work given my VS's location and so he suggested I go talk to the above doctors to get their take. He did tell me that in his opinion I'm very likely to completely lose my hearing on that side. I hope that doesn't happen but my hearing in the right ear is excellent and if it ends up going that way I'll be bummed but ultimately OK with that. I am an avid scuba diver and deeply hope that whatever treatment I find allows me to continue to dive.
Of course, like everyone my priorities are to fix this thing, preserve my hearing, not pick up new problems, and ideally reduce whatever symptoms I currently have.
I hope my approach makes sense. If you guys think there are other approach(es) or specific doctors I should be looking at, please let me know. I fortunate to be able to travel wherever is necessary and I have a job that will allow me to take whatever time I need to get this sorted out.
So again, hi. I am grateful to have found this resource.