Questions to Ask Yourself
Acoustic Neuroma Patient Decisions / PrioritiesQuestions to Ask Yourself
3. Do you need to know that the tumor is removed, or would you be satisfied knowing that its growth is arrested?
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.
1. What are your expectations after treatment?
For example, is hearing preservation something that is possible and desired? Consider whether 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.
2. 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).
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. Some methods of radiation can be slightly more effective with hearing preservation than others.
4. How important is the availability of long-term outcome data in your decision making process?
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.
5. 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 hearing loss, balance difficulties, headaches, fatigue, excessive eye dryness, tinnitus and facial weakness. 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. Typically, effects are short-term and improve with time, but you may experience facial numbness and/or weakness and hearing loss on the AN side. These deficits usually occur within 6-18 months after treatment and, other than hearing loss, are often temporary. (Note: In addition to the published literature, the ANA Discussion Forum will help you understand the reality of living with various outcomes. It provides access to discussions related to particular side effects from the patient’s perspective.)
6. 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.)
7. 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 good history 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.
8. If you decide to wait and watch, at what point would you choose to seek treatment?
If a tumor is discovered when it is very small and there are minimal symptoms, a watch and wait approach may be indicated. Most acoustic neuroma growth is slow, but there are cases where they grow quickly and others where there is no growth at all. For that reason, MRI’s are performed every 6 months at first and then generally annually after that. If it appears that a tumor is not growing and will not need to be treated during a patient’s normal life expectancy, treatment and its potential complications may be avoided. However MRI’s that show an increase in size would prompt one to consider treatment.
9. 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 neurologist, neurosurgeon and radiation oncologist. The ANA Discussion Forum can provide anectdotal information on doctors and medical facilitates based on patient's experiences. When evaluating a medical professional for acoustic neuroma treatment, we encourage review of the criteria for selecting a medical professional that is in our website in the Medical Resources section. This includes specific guidelines for patients in selecting a qualified medical professional with substantial experience, such as board certification, education and experience specifically related to acoustic neuromas, the team approach and the number of treatments annually. Also we encourage review of the Questions For Your Physician in our website Overview section - which will assist you in determining physician experience.
10. 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.