Hi everyone!
I am a new member to both the ANA and this forum. My name is Teresa and I am 48 years old. I had an MRI in July to look into facial numbness and swallow problems I've been dealing with for some time. The findings came back with high suspicion for acoustic neuroma/vestibular schwannoma. This past Tuesday 9/5/23, I saw a neurosurgeon who confirmed the dx.
He says it's medium in size (16mm x 9mm x 7mm). Good location in terms that as (if?) it grows it's well situated and won't press upon critical areas. But it's close to the cochlea so hearing loss with treatment options is certainly a possibility.
My primary symptom is tinnitus, somewhat mild but has been increasing the past few months. My doctor says the growth is NOT related to my facial numbess (AN is on right side, but my numbness is left side). No obvious balance issues at this time. Decreased hearing in my right ear for sure, I have an audiogram scheduled the end of this month as well as ENT followup
I've been anxious especially at night and it has disrupted my sleep. I have to sleep on the couch with TV on (with a timer) to take my mind off the ringing and the dx. I don't want to disrupt my partner's sleep and she can't sleep with noise. I'm averaging about 4-5 hours of sleep a night and I know this needs to change, for my health and sanity.
I am a professional musician as well as an occupational therapist who works with post op neuro patients so it's upsetting from a few standpoints. As a musician, I've taken consistent precautions to protect my hearing only to come upon this. As a therapist, I've seen post op patient successes overall, but also know the risks and that scares me. But I figure I'm in a grieving process and am hopeful I will get more accustomed to this, as I've seen patients do. Plus despite my dx, I know musicians with WAY worse hearing than me, bilaterally to boot!
Still, at present, I'm bummed.
My neurosurgeon is going to bring my case to the gamma knife conference they hold here at the hospital. He says this is the optimal approach for radiation therapy if I ever need to address surgically, but we both agree that monitoring is best for as long as I can tolerate. He didn't seem too concerned overall about the urgency and he wants me to do another MRI in 3 months to compare eventually.
Finding support I know will be important so that's why I am here. Mainly I'm focusing on coping with tinnitus, as so many others have had to do both with and without a neurological issue.
Anyway, that's my story. I look forward to reading of others experiences and belonging and contributing to a supportive environment.
Thanks for reading!
Teresa
