Teresa
TUG Member
I recently went for Gamma Knife surgery for an Acoustic Neuroma (a benign brain tumor). There were 3 other people who were having the same thing for the same side. The doctor who was handling our cases (and ENT guy and a neurosurgeon) does this once a month at the Gamma Knife Center at the Cleveland Clinic - that's why there were four of us. Once from West Virginia but the rest of us were from Ohio.
As we were talking in the waiting room (lots of waiting involved) we found that our regular doctors were not very well 'versed' in the warning signs of Acoustic Neuromas. I'm pretty sure my regular doctor wasn't (I have yet to ask him - haven't seen him since I've been diagnosed with this a few months ago but I will ask him next time I'm in). Turns out the other people there also had the same situation (their regular doctor didn't catch it). One lady had hers for about 15 years before she stopped at an ENT doctor's office while she was driving by and made an appointment for herself - almost on a whim. She was very frustrated with her balance problems and was blown off by her regular doctors as just clumsy.
The symptoms of an acoustic neuroma are loss of hearing in only one ear and some balance problems. When I complained to my regular doctor last year about my hearing loss (I'm 51) he gave me a simple hearing test (headphones with simple tones. The test said I had some hearing loss. He didn't seem concerned much so I guess we both blew it off to age-related. But I got frustrated enough with my hearing loss that I wanted to be referred to an ENT by my regular doctor, so he did that. I figured an ENT could lead me in a better direction that 'nothing'.
The ENT had more defined testing (sound proof room, way more testing devices) and he found that my left ear was significantly worse than my right (which was almost perfect). He said he was ordering an MRI to rule out a benign brain tumor and then we joked about it a bit. I asked him 'once we rule that out, what do we do next?' He said then we probably look at a hearing aid after we determine that we have 'no clue' why you can't hear in that ear. I appreciated his candor.
He called me 2 days after the MRI. I indeed had a brain tumor (he sounded pretty surprised). He referred me to an ENT at the Cleveland Clinic who is well versed in Acoustic Neuromas.
Here's a warning to everyone. If your have hearing loss on just one side (or significantly worse on one side than the other) ask your doctor about Acoustic Neuroma. The same with balance problems (even if you don't have a hearing loss). If she/he's never heard of it (many general practioners may not be up on it) then ask for a referral to an ENT. You won't get any hearing back after Gamma Knife or brain surgery (I opted for Gamma Knife) but you may be able to stop losing it completely. The chances of you having an Acoustic Neuroma are 1 in about 100,000. But it's YOUR hearing and somebody gets to be the '1 in 100,000. It was me - it could be you too.
I'm fine. The Gamma Knife procedure was pretty 'star-wars-ish' (they screw a 'helmet' into your head in 4 places) but it was mostly painless (except for the headache after they removed the helmet). No cutting involved like brain surgery and the recuperation time is 'negligible' (here I am talking to you the day after - at home - it was outpatient). I have some follow-up stuff to do (MRI's two months from now and then yearly for 5 years) but it's nothing compared to brain surgery (they actually clip out your balance nerve on that side so you have to do physical therapy plus the 3 days in the hospital (some in intensive care) and the recuperation period from having such major surgery can be months and months).
As we were talking in the waiting room (lots of waiting involved) we found that our regular doctors were not very well 'versed' in the warning signs of Acoustic Neuromas. I'm pretty sure my regular doctor wasn't (I have yet to ask him - haven't seen him since I've been diagnosed with this a few months ago but I will ask him next time I'm in). Turns out the other people there also had the same situation (their regular doctor didn't catch it). One lady had hers for about 15 years before she stopped at an ENT doctor's office while she was driving by and made an appointment for herself - almost on a whim. She was very frustrated with her balance problems and was blown off by her regular doctors as just clumsy.
The symptoms of an acoustic neuroma are loss of hearing in only one ear and some balance problems. When I complained to my regular doctor last year about my hearing loss (I'm 51) he gave me a simple hearing test (headphones with simple tones. The test said I had some hearing loss. He didn't seem concerned much so I guess we both blew it off to age-related. But I got frustrated enough with my hearing loss that I wanted to be referred to an ENT by my regular doctor, so he did that. I figured an ENT could lead me in a better direction that 'nothing'.
The ENT had more defined testing (sound proof room, way more testing devices) and he found that my left ear was significantly worse than my right (which was almost perfect). He said he was ordering an MRI to rule out a benign brain tumor and then we joked about it a bit. I asked him 'once we rule that out, what do we do next?' He said then we probably look at a hearing aid after we determine that we have 'no clue' why you can't hear in that ear. I appreciated his candor.
He called me 2 days after the MRI. I indeed had a brain tumor (he sounded pretty surprised). He referred me to an ENT at the Cleveland Clinic who is well versed in Acoustic Neuromas.
Here's a warning to everyone. If your have hearing loss on just one side (or significantly worse on one side than the other) ask your doctor about Acoustic Neuroma. The same with balance problems (even if you don't have a hearing loss). If she/he's never heard of it (many general practioners may not be up on it) then ask for a referral to an ENT. You won't get any hearing back after Gamma Knife or brain surgery (I opted for Gamma Knife) but you may be able to stop losing it completely. The chances of you having an Acoustic Neuroma are 1 in about 100,000. But it's YOUR hearing and somebody gets to be the '1 in 100,000. It was me - it could be you too.
I'm fine. The Gamma Knife procedure was pretty 'star-wars-ish' (they screw a 'helmet' into your head in 4 places) but it was mostly painless (except for the headache after they removed the helmet). No cutting involved like brain surgery and the recuperation time is 'negligible' (here I am talking to you the day after - at home - it was outpatient). I have some follow-up stuff to do (MRI's two months from now and then yearly for 5 years) but it's nothing compared to brain surgery (they actually clip out your balance nerve on that side so you have to do physical therapy plus the 3 days in the hospital (some in intensive care) and the recuperation period from having such major surgery can be months and months).
Last edited: