Uncategorised - Acoustic Neuroma Association

Details: Published: October 30, 2018

MyGivingStoryLogo

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.

GTMatchJeff

Details: Published: July 24, 2018

Study of Aspirin in Patients with Vestibular Schwannoma

Sponsored by Congressionally Directed Medical Research Programs

D. Bradley Welling, M.D., Ph.D., Principle Investigator

*Please note: Study participants will come to a participating center on a schedule that matches normal follow-up for patients with vestibular schwannomas under observation. Some visits may be handled virtually.

What is the purpose of this study?
The purpose of this study is to see if aspirin will prevent tumor growth in patients with sporadic or NF-2 related vestibular schwannoma compared to patients who do not take aspirin.

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

What centers are participating in the study?
The centers that are participating are: Mass Eye and Ear, Mayo Clinic, Stanford University, University of Iowa, University of Miami, University of Utah and our most recent addition, the Barrow Neurological Institute in Phoenix, Arizona.

What happens if I agree to participate in the study?
Study participants will come to a participating center on a schedule that matches normal follow-up for patients with vestibular schwannomas under observation. Some visits may be handled virtually.

If you agree to participate in the study and are found to be eligible, you will be randomized to receive daily aspirin or no treatment. Randomization means that you or your study doctor will not get to choose whether you get aspirin or not. However, the study is designed so that all patients will have the opportunity to be on the active aspirin arm.

During the study, you will have a visit with your study doctor. An MRI and a hearing test are performed at baseline, 6 months after enrollment, and every year you are on the study (5 total). You will also be asked to fill out short questionnaires about how your vestibular schwannoma impacts your quality of life. You will answer these questions at each follow-up over the course of the study. We will also draw some blood (about 2 teaspoons) to research vestibular schwannoma at 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 may enter the follow up portion of the study. If it turns out you were not on aspirin during the randomized portion of the study, you have the option to move into the group taking aspirin for further follow up. You may select to leave the study and receive other treatment options such as surgery or radiation at any time.

Everyone will be followed on study for up to 3.5 years.

How many patients are enrolled in the study?

Over 70 patients are enrolled as of this writing (April 2024), but many more patients are still needed to complete the study, so we welcome new potential candidates.

What if I already take aspirin?

You will be allowed to join the study if you stop aspirin use for 60-days prior to starting the study. Guidelines have recently changed for the routine use of prophylactic aspirin to prevent strokes and heart attacks. Potential participants should discuss this with their primary care physician. Tylenol is an acceptable alternative for many who use aspirin or ibuprofen for pain control.

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

Are there any additional costs or financial benefits to participate in the study?
You will not be charged for the research blood studies. 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.

Unfortunately there are insufficient funds to pay you if you agree to participate in the study.

Are there any additional risks associated with participating in the study?
Aspirin is a 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:
Christopher Wood, cgwood@meei.harvard.edu, 857-991-8680

or the Program Manager:
Ellen Fitzgerald, Ellen_Fitzgerald@meei.harvard.edu

You can also contact the participating site closest to you.

More Information

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

D. Bradley Welling MD, PhD
Brad_welling@meei.harvard.edu
Mass Eye and Ear: 617-573-3632
Boston, MA

Konstantina Stankovic MD, PhD
kstankovic@stanford.edu
Stanford: 650-723-5281
Palo Alto, CA

Alex Claussen, MD
Alexander-Claussen@uiowa.edu
University of Iowa: 800-777-8442
Iowa City, Iowa

Brian Neff, MD
Neff.brian@mayo.edu
Mayo Clinic: 507-284-2511
Rochester, MN

Neil Patel MD or Richard Gurgel, MD
neil.patel@hsc.utah.edu
richard.gurgel@hsc.utah.edu
University of Utah: 801-587-8368
Salt Lake City, UT

Fred Telischi, MD
ftelischi@med.miami.edu
University of Miami: 305-243-3564
Miami, FL

Shawn Stevens, MD
Shawn.stevens@commonspirit.org
Barrow Neurological Institute: 884-608-0873
Phoenix, AZ

Details: Published: April 23, 2018

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Details: Published: June 13, 2018

Watch the full interview.
Watch the recording of the MN Support Group meeting Navigating Your AN In and Around the Workplace.
Employment Considerations material.

Details: Published: March 28, 2018

ANA Virtual Patient Education Event
Hosted by Rush University Medical Center
October 9, 2021

Led by Dr. Mark Wiet, the Acoustic Neuroma Program at Rush University Medical Center
offers personalized specialty care for patients with acoustic neuroma.
Meet this team of experts and learn as they provide information on topics
relevant to the AN community and answer questions during each session.

NOTE: Times are listed in the CENTRAL time zone - please adjust for your time zone

This program will be recorded and captions are available

8 am CT
Introduction/Welcome
R. Mark Wiet, MD, FACS

8:05-9:00 am CT
Acoustic Neuroma: Epidemiology, Observation and Symptom Management
R. Mark Wiet, MD, FACS and Elias Michaelides, MD

9:00-9:55 am CT
Stereotactic Radiosurgery and Vestibular Schwannoma - What Are The Options?
Ken Tatebe, MD

Break

10:00-11:00 am CT
Microsurgical Options to Treat Acoustic Neuroma
Stephan Munich, MD

11:00-11:55 pm CT
The Role of Facial Reanimation in Post-Treatment AN Patients
Peter Revenaugh, MD and Ryan Smith, MD

Break

12:00-1:00 pm CT
Physician Panel: AN Case Studies
Stephan Munich, MD, MD, Ken Tatebe, MD
Elias Michaelides, MD, Kara Houston, AuD, R. Mark Wiet, MD, FACS

Category Title

R. Mark Wiet, MD, FACS

Richard Mark Wiet, MD, FACS, serves as the section head of the otology, neurotology and lateral skull base surgery at Rush University Medical Center and is an associate professor of otorhinolaryngology and neurosurgery.
He serves as the director for the Acoustic Neuroma Program at Rush and co-director of the Auditory Implant Program.
He is double board-certified by the American Board of Otolaryngology in both otolaryngology and neurotology and is a fellow of the American College of Surgeons and the American Neurotologic Society.
Following medical school and residency, Dr. Wiet completed a two-year ACGME accredited fellowship in otology, neurotology and skull base surgery at the University of Michigan. He gained additional experience in the field of lateral skull base surgery under the direction of Dr. Mario Sanna at Gruppo Otologico in Piacenza, Italy. Dr. Wiet has co-authored multiple peer-reviewed articles, and book chapters, and delivered multiple lectures nationally and internationally on acoustic neuroma and lateral skull base surgery. He has been practicing at Rush since 2008.

Elias Michaelides, MD

Elias Michaelides, MD, is an Associate Professor in the department specializing in Otology, Neurotology and Skull Base Surgery in both adult and pediatric patients. He currently serves as the Medical Director of Audiology. He also serves as the co-director of the Rush Cochlear Implant program. Dr. Michaelides is double board-certified in Otolaryngology – Head & Neck Surgery and Neurotology/Skull Base Surgery.
Dr. Michaelides joined Rush in 2019, after serving as the Vice Chief of Otolaryngology at Yale University, and brings his strong commitment to diagnosing and treating all conditions of the ear and hearing to Rush. He served as the Yale Otolaryngology Residency Program Director for over ten years. He has published over 50 publications and lectured around the world on innovations in Eustachian tube surgery and skull base reconstruction to reduce cerebrospinal fluid leaks. In addition, he has initiated multiple clinical trials in innovative treatments of inner ear disorders and Eustachian tube dysfunction.
Dr. Michaelides believes hearing disorders can have profound effect on patient’s interaction with others and the world and his clinical interests have focused on hearing restoration and preservation surgery. He has served on the American Academy of Otolaryngology’s Hearing Committee and has received the American Academy of Otolaryngology Honor Award.

Ken Tatebe, MD

Ken Tatebe, M.D., Ph.D., is a Radiation Oncologist and an Assistant Professor of Radiation Oncology at Rush University Medical Center.
Tatebe received his Bachelor of Science in physics from the University of Texas in Austin, Texas, his philosophical doctorate in physics from the University of California in Berkeley, California, and his medical doctorate from the University of Texas Southwestern in Dallas, Texas. He completed his internship at John Peter Smith Hospital in Fort Worth, Texas, and his residency in radiation oncology at the University of Chicago in Chicago, Illinois, where he served as Chief Resident. He has also completed externships in proton therapy in Warrenville, IL and in carbon ion therapy in Chiba, Japan.
Tatebe has been awarded numerous honors, has presented his research at local and national meetings, and has authored several publications in peer-reviewed publications. These include works on radiation therapy, novel imaging methods, bioinformatics, and high-intensity focused ultrasound.
He is a member of several professional societies including the American Society for Radiation Oncology (ASTRO), the American Board of Radiology (ABR), and the American Physical Society (APS).

Stephan Munich, MD

Stephan Munich, MD, received his medical degree from the University of Buffalo and completed his residency in neurological surgery at Rush University in Chicago. He completed a cerebrovascular and skull base fellowship program at University of Miami. He then completed a second fellowship in endovascular neurosurgery at the University at Buffalo. Munich’s clinical interests include skull base tumors, brain aneurysm, stroke, angioplasty, cerebrovascular disease, subarachnoid hemorrhage, carotid artery disease, brain tumors, and vascular malformations.

Peter Revenaugh, MD

Peter Revenaugh, MD, is head of the Section of Facial Plastic and Reconstructive Surgery and the Patient Safety and Quality Improvement Officer for the Department of Otorhinolaryngology. He completed advanced fellowship training in facial plastic and reconstructive surgery at Johns Hopkins University following residency at the Cleveland Clinic. Revenaugh is an active member of the American Academy of Facial Plastic and Reconstructive Surgery and has authored numerous journal articles and book chapters related to complex aesthetic and reconstructive techniques.
He also has a passion for humanitarian work and has traveled extensively, providing surgical care to areas of the developing world. Revenaugh leads a team of surgeons known for their comprehensive and collaborative approach to aesthetic and reconstructive surgery. The team's clinical expertise and research interests include noninvasive and minimally invasive cosmetic procedures for facial rejuvenation, cosmetic and functional nasal surgery, rehabilitation for facial paralysis, and advanced facial reconstructive and microvascular surgery following head and neck cancer.

Ryan Smith, MD

Ryan M. Smith, MD, is an assistant professor in the Section of Facial Plastic and Reconstructive Surgery at Rush and serves as Director of South Loop Otolaryngology for the Department. Smith joined the faculty in August 2018 after completing advanced fellowship training in facial plastic and reconstructive surgery at Johns Hopkins Hospital, where he focused exclusively on facial aesthetic surgery, head and neck reconstruction following cancer treatment, and reanimation for patients with facial paralysis.
He received his medical degree from Rush Medical College, then stayed at Rush to complete his residency in head and neck surgery, serving as chief resident during his final year of training. Smith has authored numerous journal articles and book chapters related to complex aesthetic and reconstructive facial plastic surgery techniques. His research interests include facial rejuvenation techniques, quality-of-life improvement after cosmetic surgery, microvascular reconstruction and facial transplantation.

Kara Houston, AuD