Hi All,
Quick summary of journey thus far. Back in 2021, I woke up with strong tinnitus/single sided hearing reduction and sought a visit with an ENT. They did a hearing test and agreed I had slightly diminished hearing in my right ear. After a bit of song and dance I had an MRI that identified a 4mm AN. After some weeks, the symptoms seemed to diminish, and they seemed to come and go since then. Fortunately over the 2 years, I've had 2 add'l MRIs, each showing no growth.
My most recent MRI was in April - so 4 months prior, to about a month ago, when I experienced an escalation of new tinnitus, fullness and hearing reduction. Fortunately, no functional consequence to my face or balance yet, outside of some uncommon positionally affected imbalance. My hearing in the bad ear is still mostly there - I'm not deaf in that ear yet.
I currently under the care of Dr Yaron Moshel in Morristown NJ, and his original advice (listed in appointment summary) was
"we also discussed the role of
stereotactic radiosurgical treatment for enlarging lesions and we discussed the role of fractionation in
order to maximize hearing preservation however at this position distal in the canal I think the likelihood
that he will develop hearing loss from any radiosurgical procedure is relatively high and instead I think
he is better served with the natural history of the lesion."
At the moment, the symptoms are still mostly a nuisance and not significantly adverse to my quality of life - but I need to weigh the costs/benefits of treatment, especially in the short and long term. I'm sure another MRI is indicated to see if my new symptoms stem from tumor progression - but regardless, I'm curious to hear experiences from anyone with similar history.
An optimistic part of me says, "I can beat this - it's single sided, and I'll ideally still have hearing in my left ear, even if I do radiation therapy" though the pessimist in me says, "I'm doomed to poor hearing, facial weakness, balance issues among other things". Hope to hear from you!
