Acoustic Neuroma Patient Decisions / Priorities
All treatments are viable options for some acoustic neuroma patients, yet all could have unanticipated consequences. You must make a choice that reflects your tumor's size and location, your symptoms, your age, general health, pre-treatment hearing level and lifestyle. One treatment does not fit all situations, and it is a matter of making the most appropriate match--one that you believe in. You must be comfortable with your doctor and have confidence in their experience, expertise and compassion.
What are your expectations after treatment?
For example, is hearing preservation something that is possible and desired? Consider whether or not your current hearing level is conducive for a hearing preservation treatment approach. If so, certain options are available. If not, then other options can be considered which do not offer hearing preservation, but which may offer better results with respect to other possible complications.
Are your tumor size, location and hearing level the appropriate match for the treatment you are considering?
If you are considering radiation treatment, most medical centers would not recommend radiation treatment for tumors larger than 2.5 to 3 centimeters. If microsurgery is an option, certain approaches would be discouraged at some medical centers if your hearing level does not fit the 50/50 rule (The 50/50 rule suggests that individuals with a pure-tone average greater than 50 dB and speech discrimination less than 50% do not have useful or salvageable hearing, although not all patients with diminished hearing would agree with that standard). Some methods of radiation can be slightly more effective with hearing preservation than others.
Do you need to know that the tumor is removed, or would you be satisfied knowing that its growth is arrested?
If removal is important to you, then microsurgery is the only route, and you must then decide which surgical approach suits your situation best. On the other hand, if simply arresting the tumor's growth would be satisfactory, then radiation may be an option. Primary factors in choosing a radiation method is your tumor’s size, location, age, symptoms and overall health.
How important is the availability of long-term outcome data in your decision making process?
Many patients are more comfortable analyzing information about treatments and outcomes before making a decision. Microsurgery is the oldest treatment option for acoustic neuroma and therefore, has the most data associated with it.
The 1950s brought the beginnings of radiosurgery as two professors in Sweden began to investigate combining radiation beams with stereotactic (guiding) devices capable of pinpointing targets within the brain. However, this technology was not used in the United States until The Center for Image-Guided Neurosurgery at the University of Pittsburgh Medical Center installed the first North American Gamma Knife in 1987. Gamma Knife radiation is always delivered in a single dose.
In 1982, the Linear Accelerator (LINAC) technology was developed using X-rays instead of gamma rays. This system allowed for Fractionated Stereotactic Radiotherapy (FSR) delivering lower dose radiation over multiple visits rather than a single higher dose.
The CyberKnife technology was developed in 1987 using a robotic arm and a compact linear accelerator. It was developed at Stanford University Medical Center and the first patient was treated in 1994, however, this was not an FDA approved treatment option until 2001.
Although all of this data is relatively new when compared to surgical data, it is important to remember that even within each of these options, the protocols are constantly being refined in an attempt to improve patient outcomes.
What does the data from the published literature tell you about expected outcomes?
Published articles indicate that there are both short- and long-term issues. After a microsurgical procedure, you may experience several side effects, some of which may be temporary while others may be permanent. These may include single-sided hearing loss, dizziness/balance disturbances, tinnitus, headaches, facial weakness, excessive eye dryness and fatigue. Postoperatively, a small percentage of patients may experience a cerebrospinal fluid leak (CSF) through the incision or nose.
Since radiosurgery is an outpatient procedure, it is not associated with most of the complications of open surgery (CSF leaks, infection, etc.), however, side effects may be slower to present as the tumor may swell for up to two years following treatment. Symptoms can increase and these issues can occur within 6-24 months after treatment.
Note: In addition to the published literature, the ANA Discussion Forum (located on the ANA website at www.ANAUSA.org) will help you understand the reality of living with various outcomes. The Discussion Forum along with ANA social media sites, including Facebook, Twitter, LinkedIn and YouTube provide access to discussions related to particular side effects from the patient’s perspective.
How important is it that the procedure you choose has gone through peer review by doctors?
Peer review is the highest standard in medicine because conclusions must be drawn from actual data. No conclusion can be drawn that cannot be supported by the data. In Editorial, Sponsorship, Authorship and Accountability, which appeared in the September 13, 2001, New England Journal of Medicine, it was stated "...we recognize that the publication of clinical research findings in respected peer-reviewed journals is the ultimate basis for most treatment decisions...This discourse is vital to the scientific practice of medicine because it shapes treatment decisions made by physicians and drives public and private health care policy." (Note: Because it is the oldest procedure, microsurgery techniques have the most literature that has gone through review.)
How does your age affect your treatment decision?
While age is one determinant in the treatment option decision, it is only one of many factors to consider. Treatment options should be determined by location and size of tumor, your symptoms, your current physical health and the state of your hearing in addition to your age. For example, younger patients (20‘s and 30‘s) often present with larger tumors. Since radiation is usually indicated for smaller tumors and has a documented success rate of only about 12 to 15 years (and these patients have the potential to live for another 60-70 years), microsurgery often becomes their treatment of choice. Older patients (mid 50‘s +) with smaller tumors may be good candidates for radiation. It is less invasive, radiation has proven to be very effective in treating tumors smaller than 2.5 to 3 cm and their normal lifespan won’t allow them to deal with potential effects in 20-30 years.
If you decide the watch and wait option, at what point would you choose to 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.
How do you determine whether your doctor is an acoustic neuroma specialist?
ANA recommends treatment from a medical team with substantial acoustic neuroma experience, so this is very important. Physicians must have several years of experience treating acoustic neuroma and must work with a team of physicians including a neurotologist, neurosurgeon and radiation oncologist. The Discussion Forum (accessible via the ANA website) can provide anecdotal information on doctors and medical facilities based on patient experiences. Similar information can also be found on ANA’s social media sites including Facebook, Twitter, LinkedIn and YouTube. ANA has a page of Considerations When Selecting a Healthcare Provider, which will assist you in choosing a provider. Also we encourage review of the Questions For Your Physician in our website Pre-Treatment section - which will assist you in determining physician experience.
Will your insurance provider cover treatment at the facility you have chosen?
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. Refer to the ANA website for additional information.