What does the ANA do?

The Acoustic Neuroma Association (ANA) is a patient member organization, providing information, education and support to persons diagnosed with acoustic neuroma (AN) and their care partners. 

How does ANA membership work and why is it important?

ANA membership includes a subscription to our quarterly Notes newsletter; access to the ANA webinar program; priority registration to ANA patient events and programs; and access to the ANA member section including our Peer Mentor List, Patient information booklets on AN-related topics, Q&A with Providers, Webinar Library, and Newsletter Library.

ANA membership is $50 for one year/$80 for two years.

Acoustic neuromas are rare, and consequently, we are a small organization. Membership is one of the ways that we are able to continue to offer free patient kits to newly diagnosed patients, support groups for all, and more in addition to funding research and all of the other things we do for and with the AN community. In return, we offer our members some benefits that are only available to that group.

What is a temporary membership?

The ANA extends a temporary membership to everyone who requests a free patient kit because we know how important it is to receive our information. The temporary membership is valid for thirty days and includes a free patient kit and access to the Member Section of the website. The ANA will contact temporary members and let them know when their membership is expiring so they can join without a lapse in access.

What is the ANA Discussion Forum?

The ANA Discussion Forum is a public internet forum where individuals can post questions related to various acoustic neuroma topics of interest. Individuals can browse posts and search for key words and phrases. Please note to post on the forum, individuals must register with a username and password of their choice. New users are typically activated with 24 hours and then they can post. The first several posts of all new users will be reviewed by a moderator. The username and password for the forum are different from the Member Section Login. The forum can be accessed by clicking the Discuss button at the top of the ANA site.

Is the ANA on Social Media?

The ANA has an active presence on social media.  Join us on: 

Facebook
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How do my priorities impact decision-making?

All treatments have benefits and consequences. You must make a choice that reflects your individual situation. Your work life, family life, or hobbies can influence what your priorities are for treatment. Your doctor will also consider your priorities from a medical aspect. One treatment does not fit all situations, and it is a matter of making the most appropriate match--one that you believe in. 

Talk to your doctor about your expectations. For example, is hearing preservation possible? Consider whether your current hearing level is conducive for a hearing preservation treatment approach. Some patients may prioritize facial function or other factors, based on profession or lifestyle. You must be comfortable asking your doctors questions about how your priorities will be taken into consideration when choosing a treatment.

What are my expectations for post-treatment?

It is important to have reasonable expectations about acoustic neuroma side effects and your recovery after surgery or radiation treatment. It is important to ask questions about the procedure, immediate aftercare, and any longer-term care. Your doctor can explain what specialists are available for any post-treatment side effects, such as vestibular therapy, and whether he or she will coordinate any aftercare treatment with your home town physician (if you travel for treatment).

Managing your expectations about returning to work, or resuming other activities post-treatment is beneficial to your recovery. These are important subjects to broach with your doctors as well. 

What is the best treatment option for me?

Sometimes, choosing a particular treatment is not a clear-cut choice, and it can be very difficult to make a decision. Depending on the size and location of your tumor, your hearing, age, general health and other factors, not all treatment options may be recommended. It is important to get more than one opinion about treatment, if possible. ANA provides downloadable lists of questions about surgery and radiation to bring to your doctor visit when you are considering treatment options.

Do I want tumor removal or growth arrested?

If removal is important to you, surgery is the only route, and you must then decide which surgical approach suits your situation best. On the other hand, radiation does not entail an invasive procedure, and if arresting the tumor's growth would be satisfactory, radiation may be an option. It is also important to ask your doctors about the potential for regrowth of the tumor with any given treatment, and what the follow-up treatment would be in that situation.

If I choose observation, when might I seek treatment?

If a patient chooses the observation/watch and wait option (generally reserved for smaller tumors), periodic imaging is required. Following initial diagnosis, a reasonable plan would be to get a new MRI scan in six months. If there is no growth, the next scan can be done one year later and then on an annual basis. If there are any new symptoms, your physician should be notified immediately. These changes could indicate that the tumor is growing more rapidly. By waiting, there is a risk you could lose part or all of your hearing in the involved ear. There are two significant potential pitfalls with observation. First, it is critical that patients are absolutely prepared to insure that they will follow-through with MRIs as planned. Second, it is necessary to review all MRIs over time, rather than comparing any new MRI only to the immediately preceding one. Tumors may grow slowly enough so that no significant change can be seen over the course of one 6 or 12 month period even though there is significant growth over years. If significant growth does occur during the observation period, active treatment is indicated and you and your physician may decide to choose between one of two therapies: radiation treatment or microsurgical resection.

Will my insurance cover treatment?

Check your insurance policy and make necessary phone calls to determine if the facility/physician is in or out of the network. Find out what the difference in individual responsibility (i.e., 10% or 20%) will be, depending on whether the facility is in or out of the network. According to your policy, what is the maximum out-of-pocket deductible that would be your responsibility during a calendar year? Find out what is considered reasonable and customary charges. Some centers will assist you with insurance coverage issues.

QUESTIONS FOR RADIATION TREATING MEDICAL PROFESSIONALS

Click to download and print a copy of these questions to bring to your appointment.

If you have opted for radiation treatment of your tumor, you may want to ask some of the following questions of your radiation therapist, neurosurgeon, or neurotologist. Be sure that you are comfortable with the responses:

• How many tumors have been treated with radiation at your center in the past year?
• Will this be a one-dose procedure, or will it consist of several smaller doses?
• What type of radiation treatment (e.g., Gamma Knife, LINAC, CyberKnife, Novalis, proton beam, etc.) do you perform?  What are the advantages of this type of radiation over the others that are available? 
• Why do you recommend this form of radiation treatment over others?
• Is the size of my tumor safe to treat with radiation?
• What are the long-term side effects of this treatment?
• What are the more serious complications such as malignancy, hydrocephalus and what are the relative frequencies?
• How many of your patients have experienced continued growth of their tumors following treatment? If this happens to me, what would be my best follow-up procedure? Can I have microsurgery, or can I repeat radiation treatment? 
• After radiation treatment, may I go about my business as before treatment, or are there any special precautions I should take?
• When and how often should I schedule follow-up MRIs after treatment?  Will I get these MRIs for the rest of my life?

QUESTIONS FOR THE ACOUSTIC NEUROMA SURGEON

Click to download and print a copy of these questions to bring to your appointment.

If you have decided to have your acoustic neuroma surgically removed, you may wish to ask some of the following questions of your surgeons. Be sure that you are comfortable with the responses:

• How many acoustic neuromas have you evaluated or managed this year and what specific training in acoustic neuromas have you had?
• How are most small and medium-sized tumors treated at your center? In the last year, approximately how many acoustic neuromas were treated with surgery and how many with radiation?
• What surgical approach do you recommend for my tumor size, location, age, health and level of hearing and why?
• For a tumor the size and shape of mine, what have been your results with respect to facial nerve function, both temporary and permanent?
• What is the likelihood that my remaining hearing will be preserved after this surgery? (This question mainly applies if you have a smaller tumor (<2cm) and useful hearing before surgery)
• Do you anticipate total tumor removal with a single operation? If not, what are my follow-up options?
• What has been your rate of surgical complications with respect to stroke, infection, bleeding, and cerebral spinal fluid (CSF) leak? 
• When and how often should I schedule follow-up MRIs after treatment? 
• Does your hospital have a neurological intensive care unit?
• About how many days will I be in the hospital?
• What follow-up care will I need?

QUESTIONS FOR THE AUDIOLOGIST

Click to download and print a copy of these questions to bring to your appointment.

If you have opted to explore hearing aids or devices, you may want to ask some of the following questions of your audiologist. The answers to many of these questions depend on the type and extent of your hearing loss and your circumstances, lifestyle and preferences, so that hearing rehabilitation can be individually tailored to you.

• What are your qualifications?
• What options do my hearing loss and ears allow for?
• Which hearing aid or device is best for my particular type of hearing loss and lifestyle? (The more information you give your audiologist about your daily activities and listening environments, the more helpful the audiologist can be in recommending the best hearing device for you.)
• What are my hearing aids or devices capable of? (Make a list of lifestyle elements that are important to you including exposure to noisy environments, how often you dine out, are around multiple people, have meetings at work, use the phone or want to use the phone, travel, have leisure time and more.)
• How much does the aid or device cost?
• What's the aftercare plan? How much help will I need?
• How long will it take to get used to my hearing aid/device?
• How will the hearing aid/device change my life?
• When can I wear my hearing aid/device?
• What type of maintenance/cleaning is required?
• If the device uses batteries, how often will I have to replace them and what is the average cost?
• Will I require other devices/apps? (Do I need a mobile app to control the features? Are they Bluetooth capable to take phone calls or watch TV?)
• What happens if they break of are damaged? (What happens should they become inoperable and what type of warranty is available?)
• If I purchase hearing aids/devices, will I have any additional costs? (Is the price of adjustments, repairs, batteries or check-ups included?)
• What is the return policy? (Is there a trial period and if so, are there any fees that apply?)
• How often do you need to check or adjust my hearing aids/device?
• How long will the aids/device last and how soon will I need to upgrade? (What possible updates may the hearing aids go through in the next one to three years? Are there any updates currently underway?)
• How do I care for the device to maximize performance and lifespan?
• What type of warranty is available?
• Does my insurance cover the cost? (If not, will the hearing center be able to find alternative sources of financial help?)
• Are there other techniques or communication skills that would be helpful for me?

QUESTIONS FOR PHYSICAL THERAPISTS

Click to download and print a copy of these questions to bring to your appointment.

• Are you qualified to treat vestibular problems? (confirm that the therapist is trained in vestibular rehabilitation)
• How does the vestibular system work?
• How is this type of physical therapy different from other types of physical therapy?

Pre-treatment or Observation Questions:

• How will physical therapy help me if I decide to have treatment later?
• How will physical therapy help me if I continue to observe my AN?
• How will each type of treatment affect my vestibular system?

Post-treatment Questions:

• If the tumor is gone, why am I dizzy and off balance?
• Is it normal to feel so dizzy after treatment?
• How long is it going to take for me to get better?
• Will I be able to return to work?
• Will I be able to go back to my previous activities?
• I had treatment many years ago, can this still help me?

Surgery Basics

Physicians may choose surgery for people with large tumors or tumors that are causing serious problems with balance, persistent headaches or facial pain, or hydrocephalus, a buildup of fluid in the brain.

Hydrocephalus occurs when an acoustic neuroma grows large enough to press on the brain stem, the lower portion of the brain that connects to the spinal cord. This blocks the flow of cerebrospinal fluid—the liquid that surrounds and cushions the brain and spinal cord—from draining properly.

Very small tumors can also be treated with surgery when doctors observe growth or when preservation of hearing is a goal.

Surgery to remove an acoustic neuroma is often guided by computer software that incorporates MRI scans and CT scans, which create three-dimensional images of the brain. The imaging tests help surgeons remove tumors with great precision, while avoiding damage to nerves responsible for hearing, balance, and facial movement.

Surgical Approach Overview

How do you decide which type of surgery is right for you? The surgical approach your doctor uses depends on the tumor size and location and whether preserving your hearing is a priority or an option. All procedures require general anesthesia.

The surgery is performed by a team of physicians including a neurotologist (ear and skull base surgeon) and a neurosurgeon. There are three main microsurgical approaches for the removal of an acoustic neuroma: translabyrinthine, retrosigmoid/sub-occipital and middle fossa. The approach used for each individual patient is based on several factors such as tumor size, location, skill and experience of the surgeon, and whether or not hearing preservation is a goal. The surgeon and the patient should thoroughly discuss the reasons for a selected appoach. Each of the surgical approaches has advantages and disadvantages, and excellent results have been achieved using all three of the techniques.

Figure 2. Three surgical approaches to an acoustic neuroma: retrosigmoid/sub-occipital, translabyrinthine and middle fossa. 

(Printed with permission of the Mayfield Clinic - www.mayfieldclinic.com) 

Translabyrinthine Approach

Doctors may use translabyrinthine surgery for any size of tumor that has caused significant hearing loss or where hearing preservation is not possible. During this procedure, the surgeon makes an incision behind the ear and opens the mastoid bone, as well as a portion of the inner ear, which contains structures important for hearing and balance. This gives the surgeon access to the tumor in the internal auditory canal, which acts as the passageway for the eighth cranial nerve—the nerve that runs from the brain to the inner ears—and provides a good view of the nerves so the surgeon can preserve facial function.

The surgeon removes the entire tumor, or as much of it as is safely possible. To reach the tumor, surgeons occasionally remove the cochlea, the part of the inner ear that processes sound, or the otic capsule, which is the bony structure that surrounds the inner ear.

Because a portion of the inner ear is removed during this procedure, hearing is lost in that ear. Balance is usually not a problem because the opposite ear can take over this function, although rehabilitation therapy may be necessary to help you compensate for some loss of balance.

In general, the translabyrinthine approach is the best option when hearing has already been severely affected from the tumor or when tumors are large and hearing preservation is not possible.

Retrosigmoid Approach

Surgeons may use a retrosigmoid approach for smaller acoustic neuromas when hearing preservation is possible. They use this approach for tumors that are growing out of the internal auditory canal and approaching the brainstem.

During this surgery, a surgeon makes an incision further behind the ear to open a portion of the skull called the occipital bone, located behind the mastoid. The cerebellum, a part of the brain located above the brain stem, falls back out of the way, and surgeons remove the bone over the internal auditory canal to fully access the tumor. The surgeons can view the facial nerve, the hearing nerve, and the brainstem.

If removing the entire tumor could damage nerves or brain tissue, the doctor may leave some small bits of the tumor behind. The section of the skull opened to perform this surgery is replaced after tumor removal. Fat from the periumbilical region, meaning the area surrounding the belly button, may be removed and used to seal the closure to prevent spinal fluid leaks.

Middle Fossa Approach

The middle fossa approach is an option for smaller tumors that have not grown beyond the internal auditory canal. As with the retrosigmoid approach, it is used to help preserve hearing. The surgeon makes an incision above the ear in the lateral skull bone, and then uncovers the internal auditory canal, and removes the acoustic neuroma. Then surgeons replace the skull bone and use fat from elsewhere in the body to help close the opening. This approach is the best for saving hearing, which is possible in the majority of people who have the procedure.

Subtotal, Near Total and Total Removal

Subtotal Removal:

Subtotal removal is indicated when anything further risks life or neurological function. In these cases the residual tumor should be followed for risk of growth (approximately 35%). If the residual tumor grows further, treatment will likely be required. Periodic MRI studies are important to follow the potential growth rate of any tumor. 

Older patients with large tumors causing a threat to life may elect to have their surgeon sub-totally remove their tumor. Partial tumor removal has also been advocated in some patients who have large tumors in their only hearing ear. This surgical management will reduce the tumor in size, so that it may cause no threat to the patient's health during his or her life expectancy. This approach may reduce the probability of facial nerve dysfunction as a result of the surgery.

Near Total Tumor Removal:

This approach is used by experienced centers when small areas of the tumor are so adherent to the facial nerve that total removal would result in facial weakness. The piece left is generally less than 1% of the original and poses a risk of regrowth of approximately 3%. Periodic MRI studies are important to follow the potential growth rate of any tumor.

Total Tumor Removal:

Many tumors can be entirely removed by surgery. Microsurgical techniques and instruments, along with the operating microscope, have greatly reduced the surgical risks of total tumor removal. Preservation of the facial nerve to prevent permanent facial paralysis is the primary task for the experienced acoustic neuroma surgeon. Preservation of hearing is an important goal for patients who present with functional hearing. Both facial nerve function and hearing is electrically monitored during surgery. This is a valuable aid for the surgeon while the tumor is being removed.

Figure 1. Comparison of partial and total tumor removal. Every effort is made to remove the tumor without damaging the adjacent nerves or vital brainstem functions. Sometimes it may be best to leave small pieces of tumor capsule attached to critical structures rather than risk damage. If over time the tumor remnant grows, futher treatment is warranted. (Printed with permission of the Mayfield Clinic – www.mayfieldclinic.com)

Preparing for AN Surgery (pdf)

Preparing for AN Surgery

What to Expect after Surgery

After surgery, you may spend a few days recovering in the hospital while your doctor monitors you and manages any pain, dizziness, and other symptoms you may be experiencing. If your hearing has been affected by the surgery, your doctor can work with you to explore your options for hearing rehabilitation. Balance is recovered slowly, and most people can return to work in 8 to 12 weeks.