Acoustic Neuroma: Auditory symptoms are overwhelming

Posted by bobbimck @bobbimck, Oct 3, 2024

Was diagnosed in June 2024. The auditory symptoms are overwhelming. I would be grateful to read others experiences and advice. Thanks.

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Yes, it could be an age thing. My daughter is 36. Still worth asking though. She is having the surgery done by a highly regarded specialist in Poland. But the technique is practiced widely in the US also. They do it at Mayo. Good luck with everything. Brian

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@brchristian

I don't understand why Mayo is telling you that the gamma knife is your only option. My daughter's story is similar to yours. She is having the procedure described below in about three weeks in Europe.

The middle cranial fossa approach involves an incision above the ear. The internal auditory canal is approached from above and an experienced surgeon can expose the tumor without compromising the structures of the inner ear. This procedure is reserved for patients with useful hearing and tumors smaller than 1.7 centimeters. This technique offers the highest likelihood of long-term hearing preservation.

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Thank you for the information. It might be my age, I am 74. I had not heard of this approach. Where in Europe is your daughter going? I wish her the best possible outcome. ~ Kathy

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@kathrynschmitz

I was diagnosed with an acoustic neuroma in July of 2024. I was referred to Mayo Rochester and told to get a hearing aid for my right ear and take the "wait and watch" approach, as the tumor was small at 11 mm. In Feb. I had another MRI. The tumor did grow 2mm. I can choose to have the gamma knife (I would lose hearing on the left side) or wait another year. If it is still growing, they would do the gamma knife at that time. My symptoms were better for several months last summer, early fall but are back in full again. Has anyone found anything that helps? I have constant ringing, hearing different tones of a whistle type sounds, have the feeling of pressure/fullness and bouts of dizziness and balance issues. More recently I have a dull ache in my left temple area, too.

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I’m also a Mayo Jax Fl patient. I had Gamma Ray done a year ago February. My hearing in my left ear is totally gone but the tinnitus is bad. I use small bud in my left ear at night with white noise to distract the left ear noise. I wear a hearing aid in my right ear to help and now a Bi-cross in left ear. Sounds on left side transmit to right ear aid. I was 76 when diagnosed and in excellent health but the surgery is extremely long and involved and not recommended for me.

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The House ear institute in L.A. has the most experience wit acoustic neuromas. The current treatments were developed there. They have a team approach that moves smoothly

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I don't understand why Mayo is telling you that the gamma knife is your only option. My daughter's story is similar to yours. She is having the procedure described below in about three weeks in Europe.

The middle cranial fossa approach involves an incision above the ear. The internal auditory canal is approached from above and an experienced surgeon can expose the tumor without compromising the structures of the inner ear. This procedure is reserved for patients with useful hearing and tumors smaller than 1.7 centimeters. This technique offers the highest likelihood of long-term hearing preservation.

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I was diagnosed with an acoustic neuroma in July of 2024. I was referred to Mayo Rochester and told to get a hearing aid for my right ear and take the "wait and watch" approach, as the tumor was small at 11 mm. In Feb. I had another MRI. The tumor did grow 2mm. I can choose to have the gamma knife (I would lose hearing on the left side) or wait another year. If it is still growing, they would do the gamma knife at that time. My symptoms were better for several months last summer, early fall but are back in full again. Has anyone found anything that helps? I have constant ringing, hearing different tones of a whistle type sounds, have the feeling of pressure/fullness and bouts of dizziness and balance issues. More recently I have a dull ache in my left temple area, too.

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@anovo69

I have an acoustic neuroma. I am about to have a gamma knife stereotactic procedure. This involves being screwed into a head frame, wearing a mask, and maybe a helmet. The problem is I have severe claustrophobia of the head. Because of this, I do not tolerate having my head restrained (CPAP machine, MRI’s of the head). I have developed s strategy for getting through the MRI, though these are still difficult, but that only lasts about 30 minutes The gamma knife procedure lasts an hour or more.. I am very familiar with a number of relaxation and grounding techniques. They are minimally effective.
Unfortunately, my neurologist does not seem to be taking this very seriously. He thinks 2-4 mg. of Ativan should do the trick. It will not. Anyone have suggestions?

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My situation is very much like yours. I am going to request a personal consult with the anesthesiologist. Like you, I believe my neurosurgeon minimized my issue. There is no way a couple of Ativan will alleviate my anxiety. If the anesthesiologist doesn’t come up with something stronger, I will be going somewhere else for treatment.

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@anovo69

I have an acoustic neuroma. I am about to have a gamma knife stereotactic procedure. This involves being screwed into a head frame, wearing a mask, and maybe a helmet. The problem is I have severe claustrophobia of the head. Because of this, I do not tolerate having my head restrained (CPAP machine, MRI’s of the head). I have developed s strategy for getting through the MRI, though these are still difficult, but that only lasts about 30 minutes The gamma knife procedure lasts an hour or more.. I am very familiar with a number of relaxation and grounding techniques. They are minimally effective.
Unfortunately, my neurologist does not seem to be taking this very seriously. He thinks 2-4 mg. of Ativan should do the trick. It will not. Anyone have suggestions?

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I had the same treatment. The Ativan worked for me the first time but I had family with me for support. I’m having trouble getting follow up MRI though. Ativan may help in the tube but it sure doesn’t help in the days before getting there. I think if you insist you can be sedated but it requires an anesthesiologist and they won’t want to do that. I hope you find help and will be interested in what it is.

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I have an acoustic neuroma. I am about to have a gamma knife stereotactic procedure. This involves being screwed into a head frame, wearing a mask, and maybe a helmet. The problem is I have severe claustrophobia of the head. Because of this, I do not tolerate having my head restrained (CPAP machine, MRI’s of the head). I have developed s strategy for getting through the MRI, though these are still difficult, but that only lasts about 30 minutes The gamma knife procedure lasts an hour or more.. I am very familiar with a number of relaxation and grounding techniques. They are minimally effective.
Unfortunately, my neurologist does not seem to be taking this very seriously. He thinks 2-4 mg. of Ativan should do the trick. It will not. Anyone have suggestions?

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@jvasud

I TOO GOT DIAGNOSED RECENTLY, CONFIRMED BY MRI

HAVING TINNITUS FOR 1 AND 1/ 2 YEARS,
ONE EPISODE OF VERTIGO 2 YEARS AGO,
DIZZINESS OFTEN,
MILD BLANCE DISORDER,
INSOMNIA
INABILITY TO CONCENTRATE ON FINE JOBS

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@jvasud, finally an aswer for why you were having all these symptoms for the past 18 months or so. What treatment options were suggested for you? Will you have surgery?

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