Details

Published: October 30, 2018

My acoustic neuroma greeted me with a bang. I was commuting home from work on the train one early evening when I was hit with a huge case of vertigo. How I got home that night is a miracle.

You know the rest – the ENT, audiologist, MRI and back to the ENT for the diagnosis.  I quickly found ANA on the internet, and began to build a support system (without actually realizing it at the time).

Since I had a small, 4mm tumor, I decided to wait and watch. The first 18 months or so were a nightmare. I began to have severe headaches every day. My quality of life was terrible, and I began to withdraw from much of my personal life as I just wanted to sit home. I couldn’t function normally with the headaches.

I decided I would leverage all the information I was getting and people I was meeting from my ANA contacts – the Willing to Talk List, my local ANA/NJ support group and the ANA symposium, and select three experienced doctors to try to understand why my very small AN was giving me such terrible headaches. Maybe despite the tiny size of my tumor I’d get surgery anyway.

With the help of all my ANA contacts, I was fortunate to identify and visit three terrific doctors I could have confidence in. Selecting and visiting them was a major undertaking, but after a year or more of terrible headaches the mission was worth the effort. I had no choice!

From these doctors I learned my headaches had nothing to do with my AN, but were in fact an allergic reaction to the high blood pressure medication I had started taking at about the same time as my diagnosis. (The culprit was a compound called amlodipine.) I changed medication and the headaches vanished immediately!

It hasn’t all been smooth sailing since, but the bouts of vertigo have diminished, and the balance challenges have been manageable. I feel very indebted to ANA. They enabled me to cope with a really difficult situation – both physically and mentally. Their programs and services made all the difference in the world.

It is for this reason that I joined the ANA Board of Directors, contribute to their fundraising every year and have made a bequest to ANA in my will. Without ANA I certainly would not have been able to cope so successfully with my circumstances.

Details

Published: June 13, 2018

Details

Published: July 24, 2018

Study of Aspirin in Patients with Vestibular Schwannoma

Sponsored by Massachusetts Eye and Ear Infirmary
Dr. Konstantina Stankovic

 *Please note: Study participants will have to physically come to MEEI every 6 months for 3 years (7 visits).

What is the purpose of this study?
The purpose of this study is to see if aspirin will prevent tumor growth compared to placebo in patients with sporadic or NF-2 related vestibular schwannoma.

Who qualifies to participate?
Patients who can participate include those with vestibular schwannoma, either sporadic or NF-2 related, aged 12 and older.

What centers are participating in the study?  
The centers who are participating are: Mass Eye and Ear, MGH, Mayo Clinic, Stanford University, University of Iowa, and University of Utah.

What happens if I agree to participate in the study?
If you agree to participate in the study and are found to be eligible, you would be randomized to receive daily aspirin or daily placebo (a pill that will look like aspirin, but is inactive). Randomization means that you or your study doctor will not get to choose whether you get aspirin or placebo. You and your study doctor will also not know whether you are on aspirin or placebo.

During the study, you will come see your study doctor and have an MRI and a hearing test every 6 months. You will also be asked to fill out questionnaires about how vestibular schwannoma impacts your quality of life. You will answer these questions two times over the course of the study. We will also draw some blood (about 2 teaspoons each time) to do research on vestibular schwannoma the following times: when you start the study, at 6 months, at 1 year, and every year you are on the study thereafter.

If your tumor grows while you are in the study, you will enter the follow up portion of the study. If it turns out you were given placebo during the randomized portion of the study, you will get aspirin until your tumor grows again.

Everyone will be followed on study for at least 3.5 years.

Would the study cover the cost of treatment? 
The study treatment (aspirin or placebo) will be provided to you at no cost to you.

Are there any additional costs or financial benefits to participate in the study? 
While you will not be charged for the research blood draws, the rest of the medical care on the study (the study doctor visits, MRIs, and hearing tests) would be done even if you weren’t on the study and will be charged to you or your insurance in the usual way.

You will not be paid if you agree to participate in the study.

Are there any additional risks associated with participating in the study? 
Aspirin is a very safe and common over-the-counter medication. However, some people have sensitivity to aspirin and should not participate. In addition, a very low percentage (between 1-2%) of people experience minor stomach discomfort from aspirin. An even lower percentage (0.1-0.2%) of people experience more severe symptoms from aspirin such as bleeding, ulcers or stoke. Aspirin use should be avoided in children with flu-like symptoms or fever as it can lead to a very rare disease, with vomiting and mental status changes (Reye’s syndrome).

What if I have other questions?
Please contact the primary study coordinator, Amy Quinkert, at 617-573-4192 or This email address is being protected from spambots. You need JavaScript enabled to view it. if you have any questions. You can also contact the site closest to you.

How do I participate?
Please contact one of the following sites to arrange an appointment:

Dr. Konstantina Stankovic or Dr. Brad Welling
Mass Eye and Ear: 617-573-3972

Dr. Scott Plotkin
MGH: 617-724-8770

Dr. Robert Jackler
Stanford: 650-725-6500

Dr. Marlan Hansen
University of Iowa: 800-777-8442

Dr. Brian Neff
Mayo Clinic: 507-284-2511

Dr. Clough Shelton
University of Utah: 801-587-8368

Details

Published: April 23, 2018

Français:

Ceci est un enregistrement audio en français couvrant des informations de base sur le neurinome de l'acoustique.

Deutsche:

Dies ist ein Podcast, der enthält einige grundlegende informationen über das Akustikneurinom.

Willkommen auf der Acoustic Neuroma Association Website!

Unsere Website, anausa.org, kann Ihnen mit Informationsmaterialien und anderen Ressourcen helfen. Melden Sie heute an!

Español:

Neuroma acústico video con el Dr. Alfredo Quiñones-Hinojosa

Bienvenido a Acoustic Neuroma Association. Nuestro sitio web puede ayudarlo con materiales y recursos y conectarse con un voluntario de habla hispana, ¡como yo! Regístrate hoy.

American Sign Language (ASL):