On March 16, 2016 I was diagnosed with a “14mm” acoustic neuroma (what the heck is that?) in my left ear. I had been losing my hearing in my left ear and my ENT ordered an MRI "to check for this rare condition" just in case. My ENT called me immediately with the diagnosis (benign? Thank God) and recommended I consult with Dr Wilkinson at House Clinic and Dr Harris at University of California San Diego (UCSD.)
I got in to see Dr Wilkinson in less than 2 weeks and got the rundown: this isn’t urgent, wait and watch, etc. He suggested I go meet with his surgeon partner Dr Schwartz up in Los Angeles which I did. Dr Schwartz is first class and worked patiently to help me understand the situation.
I consulted with Dr Harris on May 4th. He too was patient with me and gave me all the time I needed to answer all my questions. He strongly encouraged me to consider Gamma Knife and recommended I meet with Dr Alksne the gamma knife expert to discuss this option. I also met with Dr Harris’ partner Dr Carter (neuro-surgeon).
I am very blessed to have access to such distinguished AN experts within an hour of my home. All five of these doctors are first class and took all the time I needed to get my questions answered (they even gave me their cell phone numbers just in case.)
I had a follow up MRI in June to check the rate of growth. It measured out at 20mm X 14 mm (I believe the initial 14mm diagnosis was sloppily measured.) It turned out that my tumor was cystic and that the growth rate was “on the high side.” Instead of growing at the “normal” 1mm/year, mine was growing at a rate of 5mm/year. All of my doctors recommended I get it treated soon due to its growth rate.
I decided to go with retrosigmoid surgery because I still had decent hearing that I wanted to try to save (my take on gamma knife is that I would 100% lose my hearing within 2-3 years) and psychologically I wanted the tumor out of my body.
I decided to go with UCSD because I felt a closer personal connection to Dr Carter and Dr Harris. Additionally, UCSD is only 35 minutes from home, which would make it easier on my family to visit.
On August 10 I had my initial surgery, which went well. I woke up the next morning (day 2) feeling great. On the second morning (day 3) I woke up at 3:30am with metallic taste in my mouth: CSF leak. First effort to stop leak was to give me spinal tap to lessen pressure to allow for clotting. Long story short, the CSF draining didn’t work and it was decided that a second surgery would be required to stop the leak. So on day 9, I went back for a second surgery, which fixed the problem. I was discharged on day 13 and came home to recuperate. I’m home now and am released to go back to work on Tuesday, Sept 6. My stitches were removed on Tuesday August 23, 12 days after second surgery.
After reading several accounts in this blog about many issues and struggles other people have experienced, I know that I have been lucky. The only thing that is giving me any trouble is my incision is aching if I try to do too much in a given day. But considering the many other serious possible complications, I have no complaints.
TAKEAWAYS
1) I am very blessed to have been able to consult with Dr Wilkinson and Dr Schwartz at House Clinic and Dr Harris, Dr Alksne and Dr Carter at UCSD. It’s important to get many perspectives and meet with as many top experts as possible.
2) Take charge of your case. It was my idea to get a second MRI to gage the growth rate. Had I not done that I would not have learned of my 5mm/year rate which significantly moved up the timing of my course of action.
3) Learn about CSF leaks. I did not study up prior to my surgery and it was pretty stressful for me. I expected 5 days in the hospital, but ended up with a 13 day hospital stay. There is an 8% chance of a CSF leak. Spinal taps are very serious. Know what you’re getting into before you sign the release to let them do one to you.
4) Get the latest “up to date” (uptodate.com”) information on vestibular schwannoma. This information is objective, timely and invaluable to your understanding of the latest information regarding vestibular schwannomas. You need to have a connection to get this info. It is not available to us common folk. Ask your doctor to get it for you.
5) I made a point of NOT reading about everybody’s personal experiences on this blog (or on the web) prior to my surgery. I think that going in with a strong positive attitude is the best approach. Reading about all the varied positive and negative experiences can plant seeds of doubt and stress (this is my personal belief – yours may be different.) Gaining solid advice and information from experts and having a positive attitude was my strategy.
6) As of right now I have lost most (almost all) of my hearing in my left ear. My facial nerve function is 100% preserved and my balance is better now than before the operation.
Overall? I consider the operation a success and am glad to have it in my rearview mirror. Feel free to ask me any questions and I will try to answer in a timely manner.
[Background: I work as a product manager (marketing) for an aerospace firm at a desk job which is 90% phone and email. I play guitar and sing vocals in a band. We play 3 to 5 gigs a month. My surgery caused me to miss our four August gigs. Our next gig is a 4 hour gig on Sept 25 which I intend to play. We had a 3 hour rehearsal last Tuesday, Aug 30 (which went really well.) I may need to make an accommodation for my new single sided deafness (maybe an in-ear monitor), but otherwise I love playing music and intend to play for as long as I can.]
