I appreciated reading other people’s experiences after my diagnosis, so it’s only fair that I give back by sharing mine.
I experienced R sided tinnitus starting in May of 2014. Since I am an avid concert-goer (I do use ear protection!), I assumed that was the cause, and although it was occasionally annoying, it really had no impact on my quality of life. However, over the years I became aware that I was suffering very gradual hearing loss in that ear (for example, not wanting to use the telephone on that side) so during a visit to my PMD in November of 2023, I requested a referral to see an audiologist.
That afternoon, I received a phone call from audiology telling me that had a cancellation, and would I like to come in that afternoon, otherwise the next available time was January. Fortunately, I was able to. At the end of the testing, my audiologist Dr. Wong went over my results with me and said “I think you should be scheduled for an MRI; it’s possible that you have an acoustic neuroma.” And my first thought was “Yes, of course that’s what I have.”
Here is when it’s relevant to give some of my background. I am a retired emergency physician, so while no expert, I know what an AN is. To be honest, it had not occurred to me that I might have an AN because I had no vestibular symptoms. Of course, now I know that the majority of people with AN do not present with vestibulopathy, but I must have missed that day in medical school. However, unilateral hearing loss and tinnitus should have been the dead giveaway. I can’t explain it, but as soon as she said the words, I KNEW, just KNEW, that that was my diagnosis.
My medical background spared me the shock, anguish, fear and uncertainty that most AN patients go through at diagnosis, and for that I am incredibly blessed and thankful. My response was, “OK, well, let’s take care of this s***.” I must have watched a hundred YT videos and read 200 PubMed abstracts, even before my MRI.
My MRI was at 9pm on a Friday night, so of course it wouldn’t be read until Monday. I was also leaving Sunday night on a 14 hour flight to Singapore, so I begged the tech to show me my scan, which they are technically not allowed to do. Since I’ve read a couple thousand head CTs in my career, I knew exactly what I was looking for and exactly where to find it, I asked if maybe, just maybe, she could have the relevant axial slice up on her monitor as I walked through the room on my way out? And I am forever grateful to her, because that’s what she did.
When I got off the plane in Singapore, as I expected, my phone blew up with missed calls and texts and emails from KP about my results showing a 2.0 x 1.9 x 1.4 cm right vestibular schwannoma, touching the cerebellum, but without mass effect.
Kaiser Permanente Northern California has a team approach to their AN patients, so we all get referred to the same team of physicians. Dr. Xu is a neurosurgeon, Dr. Sheridan is chief of Neurosurgery, Dr. Pross is the neurotologist (ENT), and Dr. Millender is the Radiation Oncologist. I had phone consults with the first two and saw the latter two in person. Based on my own research, my age (64) and tumor size, I had decided that radio surgery was the best and most appropriate treatment for me, and they were all respectful of my decision after making sure I was aware of the risks and benefits of all options.
For personal reasons, I chose to delay my treatment until May of 2024. I had no change in symptoms and my pre-treatment MRI showed no significant change in the tumor size over those 6 months. The week before, I had to go to the KP Cancer Treatment Center in South San Francisco to get my thermoplastic face mask made, then to KP Redwood City to get the treatment planning MRI at their super duper high powered MRI. (All KP Northern CA neurosurgery is at KP Redwood City).
KP uses the Varian TrueBeam system. My opinion is that there is no great difference between Gamma Knife, CyberKnife or TrueBeam…Have you noticed that every doc thinks that the one they have is the best? Just a coincidence? If one were truly inferior or superior to the others, there would have been a washout by now. My treatment consisted of 3 consecutive days of radiation at the CTC. All the staff there were great, and I was in and out in well less than an hour every morning.
The worst part of the treatments honestly was the dexamethasone 8 mg every day — It gave me insomnia and made my face puff up like a volleyball! Fortunately, that resolved in less than a week. I think I had a mild headache one day that I knocked out with ibuprofen. I’m not claustrophobic, so the machine and the mask did not bother me a bit. Each treatment was less than 20 minutes.
Now, I’m 5 weeks out from my treatment and I have zero side-effects, it is literally as if I had nothing done. I think my tinnitus is a bit louder, but my hearing is about the same (-40dB with 93% WRS, so not great, but serviceable.) My 1st follow up MRI is at the end of August. Overall, I am pleased with my care at KP. I never felt any need to get a second opinion, and I never wavered in my decision to go for SRS instead of Neurosurgery or Watch & Wait.
I’ll update this post after my MRI in August, but I’m happy to answer any questions that anyone might have, and I hope my story is useful to someone someday.
