I arrived about 40 minutes early for my appointment and they actually brought me back early to begin my hearing test. The hearing test took about 15 minutes and came back with the expected results: my right ear is perfect and my left ear has hearing loss. The hearing loss in my left ear appears better than my last one but the difference in the two is farther apart on the scale. My right ear is at a '0' and my left ear is at a 10 Hearing Test Results Form dropping lower for low tones.
We waited for about 30 minutes and went in to see the doc. I brought my husband along with me and also brought my computer, I forgot to print out my questions so brought the computer to just type them down. Do not go to these appointments alone, I had the questions there with me and still forgot to use them because the conversation was going smoothly, Sean was really good about making sure we asked the questions and we only managed to miss a few on the list but I can get those answered at my next appointment which is with the neurosurgeon tomorrow.
The plan set with this doctor is to proceed with translab approach with also guarantees hearing loss. Regardless there will be hearing loss and with surgery there is just more of a chance for it but more of a chance to resect the entire tumor. Once the surgeons get in my head they will do everything possible to preserve my facial function even if that means leaving part of the tumor in tact.
The hearing nerve is a sensory nerve which means once it is damaged there is no reversing the damage and the nerve its self will not heal over time.
The facial nerve is a motor nerve which means it can heal its self over time possible so while I may have facial paralysis after surgery it could be temporary. This we won't know until surgery is done.
As of right now I am moving forward with scheduling a surgery date with this surgeon while I wait for a consult with the second surgeon on the 28th. I choose to move forward because I can't get in for surgery until Mid November and by waiting to see the other surgeon the chance of my surgery date being even later is highly probable and that doesn't work for me. Tomorrow morning I will meet with the neurosurgeon to discuss the surgery more in depth.
Diagram showing where my tumor is located (left side)
the tumor starts in the bone that covers the nerves and the mushrooms out and is pressing on the brain. It is a good size right now and not causing damage as of yet, waiting is not an option though.
Here are the questions we had to ask and the answers in red for the ones we got.
How many ANs have you removed? How?
A. hundreds, radiation & surgically
How long is the wait for surgery?
What specific training in AN surgery have you had?
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.)
How many ANs similar to mine have you removed with the surgical approach you recommend?
A. The size of my tumor is most common in my age group
Do you electrically monitor the facial nerve during surgery? (If the answer is no, look elsewhere.)
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.
A. Yes, neurotologist and neurosurgeon
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.)
Do you expect there be temporary facial paralysis, and if so, to what degree? (There usually is some.)
A. unknown, but will try to prevent
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.)
A. 6-8 hours
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.)
A. if nerve effects facial function part of the tumor may remain with possibility of radiation in the future if it grows
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.”
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.”
A. goal is always to preserve facial function
In your experience,when leaving in small pieces of residual tumor on the brainstem or facial nerve, does tumor growth usually stop?
A. more often yes with surgical removal, mutated growth possible with radiation (he hasn't witnessed it himself though)
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?
What do you do to minimize post-surgery headaches? NOTE: If you have a history of headaches, discuss this with your physician.
How much discomfort should I expect from headaches and from the incision after surgery?
Does your hospital have a neurological intensive care unit?
A. one overnight stay
About how many days will I be in the hospital?
A. 4ish days
How often should I schedule follow-up MRI's after treatment?
A. one year if fully removed, possibly 6 months if not fully removed
Will I need follow-up care? Physical Therapy or Vestibular Therapy referral?
A. recommended therapy after complete healing 9would like to review this more)
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.
All other things being equal, when can the surgery be scheduled?
Is there anything that could prevent surgery from happening once it is scheduled?
A. viral infection or gastro issues like vomiting
How much will you need to shave my head?
A. should only need to shave a small area
How close to the brainstem is the tumor located?
A. pushing on the brain