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Anyone else diagnosed with acoustic neuroma, a benign brain tumor?
My name is Tracy Daley. I live in Omaha, Nebraska. My diagnosis is a jumbled mess that I am sorting out right now. Can anyone tell me if anyone in this support group has been diagnosed and/or treated for acoustic neuroma, a benign tumor affecting the acoustic nerve, which is the eighth cranial nerve in your brain? This nerve is connected to your ear. These tumors initially affect a person's balance and hearing and then other symptoms may appear. This is a very rare tumor and one out of 100,000 people and 8-9% of the intracranial tumors. If no one has heard of this tumor, I understand.
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I Live in Minnesota and am treated at the UofM in Minneapolis, Dr Yuong
Yes my ENT and surgeon work together for schedules and surgeries....
@katfred The waiting can be tough. If you wish to consider a second opinion from experts at Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours Be sure to mention the Brain Tumor 48-access program. They can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan.
Yes, @katfred, Mayo Clinic has some outstanding AN doctors. Dr. Michael Link is terrific. If it is at all possible for you to travel, that is something you might consider. There are also some terrific AN doctors here in Los Angeles at the House Ear Institute and USC.
An MRI that was used to diagnose hydrocelphalis also found the acoustic neuroma. The hearing in my right ear is gone, but other than that, no problems. A second MRI the following year showed that the neuroma had not grown, so the decision was to leave it alone. Am told the surgery to remove it is rather difficult.Will have another MRI in a few months. There is a special hearing aid that consists of a microphone in the damaged ear that sends sounds to the functioning ear. This has been fairly helpful. <br><br>
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1 ReactionIs your hydrocephalus due to your AN, or was the AN an incidental finding and you have hydrocephalus for some other reason? I have hydrocephalus as a result of my AN and had to have it removed and had a shunt inserted the week before my tumor was removed. They told me that my tumor was life threatening and had to be removed immediately but that was because it was crushing my brain stem and was also obstructing the flow of the CSF.
I had been ill, dizzy, unbalanced for nearly a year after becoming suddenly ill while visiting Indiana. Three days in the hospital there revealed nothing, but one of the docs suggested I get an MRI. I ignored that for quite a while and then felt worse and requested the MRI--which revealed the hydrocephalus. Seems the neuroma was just an incidental finding, and I'm perfectly happy to leave it alone unless it begins to grow.
In my case the AN was the cause of the hydrocephalus. Are they sure that is not the case in yours?
Hi: How do you deal with imbalance issues from the hearing loss?? Some days I'm better off just staying inside....I was told after my surgery the only hearing device that would help me was the "Cochlear". But even than I must wait until my nerves re-generate where the left side surgery was done...What is the name of that hearing aid???I could maybe benefit for balance issues...
Hi cynaburst: My hydropcephalus was caused by the nueroma pushing my brain stem in. I didnt know about either until I had the MRI...Than it was a scheduled rush for surgery because the Nueroma was closing off my spinal fluid drainage...