I have my first consultation with Dr. Feehs at www.denverear.com . It is my first of two with the second being on September 28th with Dr. Lupo at www.rockymountainearcenter.com . I think I am prepared, I have my MRI disc to bring and I have a list of questions some of my own and some that were recommended to me.
Here are the questions I plan to bring with me (I will add a new post with the answers to the questions as well! (A. - this is for when you print it to write your answers.)
Please share any additional questions in the comments below.
Acoustic Neuroma Surgery: Questions you should ask prospective surgeons
(Many of these questions came from the ANAUSA website. I have added others, made some comments, and modified some others)
How many ANs have you removed this month and so far this year?
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In your career, how many AN surgeries have you performed, and over what period of time?
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What specific training in AN surgery have you had?
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What microsurgical approach do you recommend given my tumor size, location, age, health and level of hearing? Why? (If the tumor is under 2.5 cm, ask about radiation therapy.)
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How many ANs similar to mine have you removed with the surgical approach you recommend?
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Do you electrically monitor the facial nerve during surgery? (If the answer is no, look elsewhere.)
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Will a team of physicians with more than one specialty do this surgery? (The norm is a Neurotolgist and a Neurosurgeon. Some hospitals assign an internist to monitor your overall health before and immediately after surgery.
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For a tumor the size and shape of mine, what have been your results with respect to preserving permanent facial function? (There is actually a rating system for retention of long-term facial function, called “the House-Brackmann scale. Your surgeon should be familiar with this. You can also Google this to learn more.)
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Do you expect there be temporary facial paralysis, and if so, to what degree? (There usually is some.)
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How long is your typical surgery for a tumor like mine?(The shorter you’re under anesthesia, the better, and your recovery could be somewhat less difficult.)
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Do you anticipate total tumor removal with a single operation? If not,what are my follow-up options? Surgery? Radiation? (This is important. Unless yours is an unusually complicated case, a single surgery to completely remove the tumor is the norm for the best AN surgeons. Unless there is a very good reason otherwise, one surgery is the only acceptable answer.)
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What is the likelihood that my remaining hearing will be preserved after this surgery? (With Translab, it is zero. With Retrosigmoid and Middle Fossa, it is anywhere from 20% to 60%, depending on location, pre-existing level of hearing loss, and experience of the surgeon. Discuss the pros and cons of your situation, and the trade-offs relative to the side effects of each approach.) Google “acoustic neuroma surgical approaches.”
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If hearing preservation is unlikely,will you honor my wishes not to cut the facial nerve under any circumstances, even if it means leaving a sliver of tumor behind? (The ramifications of cutting the facial nerve are substantial, leaving the AN side of your face, including your eye, essentially paralyzed. There are follow-up surgeries that can restore some mobility, but in my opinion you want to avoid having your facial nerve severed. Period. Unless your life depends on it.) Google “acoustic neuroma facial paralysis.”
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In your experience,when leaving in small pieces of residual tumor on the brainstem or facial nerve, does tumor growth usually stop?
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Given the approach you’ve recommended, what has been your rate of surgical complication with respect to stroke, infection, bleeding, cerebral spinal fluid (CSF) leak, eye issues, and headaches?
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What do you do to minimize post-surgery headaches? NOTE: If you have a history of headaches, discuss this with your physician.
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How much discomfort should I expect from headaches and from the incision after surgery?
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Does your hospital have a neurological intensive care unit?
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About how many days will I be in the hospital?
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How often should I schedule follow-up MRI's after treatment?
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Will I need follow-up care?
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If you’re comfortable with the surgeon and the answers, get at least three references, preferably people of similar age, health, and with tumor size.
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All other things being equal, when can the surgery be scheduled?
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I have googled surgeries, scars and symptoms. I have joined forums and Facebook pages, hit up twitter and instagram - do as much as you can with out letting it stress you out. Since I found out about this tumor it has consumed my life and while I try my best to not think about it every moment it reminds me that things might not happen again. Like smiling in pictures, being able to ice skate without loosing my balance, running up and down the soccer field with my daughter and not get dizzy. I have made light of this since I found out when telling people, but with my first appointment coming up it is starting to get to me and I swear I had an anxiety attack - my chest and ribs felt like something was squeezing them and it was so painful. It is important to express your concerns and talk about how you are feeling to those closest to you, if you don't think you can talk to family or friends (maybe you feel they are annoyed with you) then talk to someone in a support group or on a Facebook page (shared one in an earlier post)
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