Acoustic Neuroma Experience

[Dorothy Gouldie]

Anacoustic neuroma, also known as a vestibular schwannoma, is a noncancerous tumor. It develops on the balance nerve, known as the vestibular nerve, and on the auditory nerve, known as the cochlear nerve. These nerves lead from your inner ear to the brain, as shown in the top image. The pressure on the nerve from the tumor may cause hearing loss and imbalance. In some cases, the tumor may grow and affect the cerebellum or other brain tissues, as shown in the magnetic resonance imaging (MRI) scan and illustrations above.

An acoustic neuroma is a noncancerous tumor that develops on the main nerve leading from the inner ear to the brain. This nerve is called the vestibular nerve. Branches of the nerve directly affect balance and hearing. Pressure from an acoustic neuroma can cause hearing loss, ringing in the ear and problems with balance. Another name for an acoustic neuroma is vestibular schwannoma.

An acoustic neuroma develops from the Schwann cells covering the vestibular nerve. An acoustic neuroma is usually slow-growing. Rarely, it may grow quickly and become large enough to press against the brain and affect vital functions.

Symptoms of an acoustic neuroma are often easy to miss and may take years to develop. Symptoms may occur because of the tumor's effects on the hearing and balance nerves. The tumor also can put pressure on nearby nerves controlling facial muscles, known as the facial nerve, and sensation, known as the trigeminal nerve. Blood vessels or brain structures also can be affected by an acoustic neuroma.

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The cause of acoustic neuromas can sometimes be linked to a problem with a gene on chromosome 22. Typically, this gene produces a tumor suppressor protein that helps control the growth of Schwann cells covering the nerves.

Experts don't know what causes this problem with the gene. Often there is no known cause for an acoustic neuroma. This gene change is inherited in people with a rare disorder called neurofibromatosis type 2. People with neurofibromatosis type 2 usually have growth of tumors on the hearing and balance nerves on both sides of the head. These tumors are known as bilateral vestibular schwannomas.

The only confirmed risk factor for acoustic neuromas is having a parent with the rare genetic disorder neurofibromatosis type 2. However, neurofibromatosis type 2 only accounts for about 5% of acoustic neuroma cases.

Neurofibromatosis type 2 is known as an autosomal dominant disorder. This means that the gene related to the disorder can be passed to a child by just one parent. Each child of an affected parent has a 50-50 chance of inheriting it.

Large tumors may press on the brainstem, occasionally preventing the flow of cerebrospinal fluid between the brain and spinal cord. Fluid can build up in your head, a condition known as hydrocephalus. This increases the pressure inside the skull.

Craig Straus was diagnosed with an acoustic neuroma after he experienced hearing loss and a loud ringing sound in one ear. MSK surgeons Samuel Selesnick and Cameron Brennan removed the noncancerous tumor, and today, Craig is getting used to a new normal with hearing loss in his left ear. He comes back to MSK once a year for an MRI.

The ENT specialist thought Craig could have an acoustic neuroma (also called vestibular schwannoma). This type of noncancerous tumor starts in the hearing and balance nerve that connects the ear to the brain. Acoustic neuromas affect approximately one in 100,000 Americans per year, according to the National Institutes of Health.

The MRI confirmed that Craig had an acoustic neuroma that was about the size of a headphone jack. Craig and Lorraine, professionals in the pharmaceutical industry, felt comfortable developing a plan and researching the experts that his ENT doctor recommended and some they found on their own. They learned he had three options.

One person that Craig found on his own was Samuel Selesnick, a surgeon at MSK who specializes in treating neurological disorders of the ear. Dr. Selesnick is also a professor and Vice Chair of the Department of Otolaryngology at Weill Cornell Medical College.

That first meeting with Dr. Selesnick was memorable for Craig. The doctor explained acoustic neuromas to Craig with a PowerPoint presentation that set a good tone for the conversation. After that, Dr. Selesnick performed a hearing test, examined Craig, and joked around, which put him at ease.

Craig had chosen his path, but he was still nervous about complications from surgery. The surgery for acoustic neuroma comes very close to the facial nerve. If that nerve is even partially injured, appearance can be altered or use of the facial muscles can be limited.

Dr. Brennan explained to Craig that he would start the surgery, Dr. Selesnick and Dr. Brennan would remove the tumor together, and then Dr. Brennan would take over to finish. Craig also met neuroanesthesiologist Patrick McCormick and neurophysiologist Edward Avila before surgery.

The MRI showed two tumors, one on each side of my brain, called acoustic neuromas. These tumors were the reason for my hearing loss. My parents scrambled to find doctors in the Texas area who could help me figure out a course of treatment. We were initially referred to a doctor who was very cold and told us that I was going to be deaf by the time I was 28 and that I needed to start learning sign language. I left Houston sad, scared and somewhat angry.

During the next several years, I saw more doctors in Texas as well as Los Angeles, and underwent a series of procedures to reduce the size of my tumors, including chemotherapy, radiation and surgery (right tumor). I also had an auditory brain stem implant (ABI) placed at the time of my operation. This time in my life was a huge rollercoaster of doctors and emotions.

In March 2021, I was living with severe hearing loss and needed another surgery, this time on my left tumor. Since my first surgery, my parents had followed the career of Dr. Schwartz and knew he was now practicing at UC San Diego Health. I always said that if the time came to have a second surgery, I was going to have it done by Dr. Schwartz. We reached out to UC San Diego Health and started the process. My wife and I met with both him and Dr. Friedman to discuss the upcoming procedure, which included another ABI, and they were able to get me scheduled quickly for the end of August 2021.

I had a perfect recovery again and focused on getting my strength back. I made a trip back to UC San Diego Health to have my new ABI activated. The results were somewhat of a surprise to me and the team at UC San Diego Health as well. They were able to activate 14 of the 21 electrodes of the implant with no adverse effects. It really blew me away how well I was able to hear them speak with the device on.

Seeking further treatment, I went for my first MRI later that summer. It showed a small lesion inside my left ear vestibule, which the radiologist and ENT thought was most likely scar tissue. A follow-up MRI determined a small acoustic neuroma close to the cochlea, apparently a rare location.

I began to research my specific situation. I did lots of reading and talked to a half dozen neurotologists. All agreed that radiation treatment would make a cochlear implant impossible and that when my hearing was finally gone, surgical resection with the implant was the best solution.

COVID interrupted everything. But by the summer of 2021, another MRI showed little to no growth and an audiogram showed nearly total deafness. So, it was surgery. This was a unique situation in that my perseveration of hearing depended on a simultaneous surgical removal and placement of an implant because of the acoustic neuroma location.

Over the next few months leading up to surgery, I continued to watch the ANA forum and read about the experiences of dozens of new patients who had surgery with Drs. Friedman and Schwartz, and how they were treated afterward. It was really notable and impressive how the "before and after" were consistent. I became more certain with every post that I'd made the right choice.

Dr. Friedman and his team really listened and agreed to take an approach that would leave my eustachian tubes functional (necessary for diving). When I woke up from surgery, my balance was almost completely back.

Post-surgery, my activity was completely unrestricted. I'm back to yoga and riding the peloton about three times a week. I went diving for the first time since surgery and had no problems at all. All of this is a tremendous improvement in the quality of my life, and I am truly grateful."

"When I received my diagnosis of acoustic neuroma (AN) last September, my first response was relief. For a year leading up to diagnosis, I dealt with vertigo, nausea, and unsteadiness that resulted in my stumbling, bumping into walls, and an inability to walk straight. I'd tried various medications to attempt to control the symptoms, but none offered any improvement. So when the radiologist explained that I had a benign tumor on my eighth cranial nerve, I was happy that I finally knew what was wrong and could do something about it.

"I sought several opinions on the East Coast, where I live. One team of doctors ultimately recommended a translabyrinthine approach even though my hearing was fully intact. Another surgeon recommended I watch and wait, telling me to 'go home and forget I had a brain tumor.' These conflicting opinions left me more overwhelmed and confused than ever, and I reached out to an online support group for help. That's when someone suggested contacting Dr. Friedman.

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