Since there are many newbies lately, I thought you might find this guide to the decision making process helpful. I wrote it documenting my own questions and journey.
Pre-treatment phase
One size does not fit all
A guide through the Acoustic Neuroma decision-making process
I have been reading as much as I can about Acoustic Neuromas (ANs). I believe that there is more than one way to approach an AN, and one-size treatment does not fit all. It is a personal choice made for specific reasons which take into account all of the patient's unique circumstances. In my own journey, I vacillated between each treatment like a piece of kelp in a vast ocean of information before I was finally able to make a decision. Each new bit of information that I learned from others on the AN-Support mailing list opened my eyes and caused me to ask my doctors and myself new questions. In turn, it made me think about what I valued in my treatment outcome, and oftentimes caused me to jump from one treatment protocol to another.
Throughout this process, I have learned that there are several key questions one needs to ask oneself in order to make the best decision. Each one of these questions, when answered honestly, will direct you through the process.
What are my expectations after treatment? For example, is hearing preservation something that is possible and desired? Consider whether one's 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 my tumor size, location and hearing level the appropriate match for the treatment I am considering? With tumors over 3 centimeters, Gamma Knife (GK) would not be recommended by most Gamma Knife centers. Also, if one's hearing level does not fit the 50/50 rule *, then certain surgeries would be discouraged as options at some surgical centers.
Do I need to know that the tumor is removed, or would I be satisfied knowing that its growth is arrested? If removal is important to the patient, then surgery is the only route, and the patient must then decide which surgical approach suits their situation best. On the other hand, if simply arresting the tumor's growth would satisfy the patient, then radiation is an option.
How important is the availability of long-term outcome data in the decision making process? Fractionated Stereotactic Radiation is the treatment with the least amount of outcome data, from about 1994. Gamma Knife has data from about 1987. Surgery has a much longer history. Important to remember, though, is that even within each of these options, the protocols are constantly being refined in an attempt to improve the patient's outcome. (Note: Published statistics don't minimize the importance of discussion related to a side effect with other patients, it just puts the risk of those effects into proper perspective.)
What does the data from the published literature tell me about expected outcomes? Consider both short- and long-term results. (Note: In addition to the published literature, discussion related to a side effect on the AN-Support mailing list or the ANA guestbook will help the patient understand the reality of living with various outcomes.)
How important is it that the procedure I 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 they are older procedures, Gamma Knife and surgery seem to have the most literature that has gone through review in the posting of their results.)
What is your age? One neurosurgeon I visited told me that at his age (68 at the time), he would wait and watch even at the risk of going deaf.
If you decide to wait and watch, at what point would you choose to seek treatment? Is it tumor growth to a specific size threshold, or perhaps a drop in hearing level, that would be the catalyst for action? [/b] [/b] [/flash]
Where are the patterns for successful treatments? Which hospitals, clinics and doctors for each of the various types of treatments have the highest success rates? (Note: I monitored the AN-Support mailing list and the ANA guestbook for several months before deciding on a treatment and noted that patients routinely applauded certain doctors with successful outcomes, or that certain patients cited the same institution or doctor for certain complications, such as facial paralysis.)
Once I decide on a treatment, will I have access to a doctor who is an expert in this field? Have I contacted some of that physician's patients for further information? (Note: even if it is a highly regarded institution, I recommend multiple contacts--I found each doctor provided new information.)
How do I determine whether my doctor is an expert? Before scheduling treatment for your acoustic neuroma with any physician, it is imperative that you discuss the doctor's experience specifically with ANs. As a general rule of thumb, seek treatment from providers who have performed more than 100 procedures prior to yours using the same protocol/approach that s/he recommends for you, and who has continued to treat ANs in recent months. Ask the doctors about their rates of complications, and be sure they understand that you are asking specifically for their complication rates, and not quoting the statistics from published literature. It is widely believed that the experience of the physician is one of the most important factors affecting the patient's outcome. We have prepared a list of questions you can use when you visit the doctor.
Will my insurance provider cover treatment at the facility I 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? How can I find out what is considered reasonable and customary charges?
Again, all treatments are viable options for some patients, yet all could have unanticipated consequences. Every patient must make a choice that reflects their tumor's size and location, their age, general health, pre-treatment hearing level and lifestyle. One size treatment does not fit all, 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.
* 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. Not all patients with diminished hearing would agree with that, and speech discrimination is a rather subjective test.
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No medical decision should be based solely on information provided here. See disclaimer
