I have been given a referral but have yet to connect with that provider.
 Would like info if anyone has been treated in the last couple of years in Seattle. Referral was choice between Dr Backhous and Dr Sachin Gupta. I think I would prefer the UW for a variety of reasons. I am a retired radiology tech so somewhat savy of the medical systems. I live on the Olympic Peninsula so even Seattle is difficult to access.

Hey all,

Leading up to my surgery, I really appreciated all the reports from others who'd gone through it, so I thought I'd contribute my own. I'm a reasonably fit, Chicago-based 41 year-old man who, last Sep-Oct, experienced rapid moderate hearing loss in my right ear. I'd had some mild tinnitus in there for about 5 years, but wrote it off as the result of too many basement punk shows when I was a kid. When I finally saw an ENT/Audiologist in November, they proscribed a hearing aid and an MRI "to rule some stuff out." Obviously, the MRI ruled stuff in.

The results of the MRI showed a 22mm vestibular schwannoma emerging from my right auditory canal into the cerebello pontine angle, and pressing up against the brain stem. I took consults with three surgeons (two local in Chicago and also UCSD), as well as a radio-oncologist. Everyone agreed that the opportunity for radiation was past, especially for someone younger, such as myself. The two Chicago surgeons both recommended a translab approach, whereas Dr. Schwartz at UCSD was confident in the appropriateness of a retrosigmoid approach, which held the prospect of maintaining my hearing in my right ear. I'm a music lover and felt I owed it to myself to try for the more ambitious surgery, though I knew it can present more complications.

I'm extraordinarily pleased to report that the surgery was a near-total success. I emerged from surgery with my hearing basically in the same state that I went in, and the tumor fully removed. I've experienced no complications with respect to my facial nerve. Obviously, I'll need an MRI in a year or so to fully confirm the removal, but all signs point to it being gone.

The 36 hours or so, post surgery—I'm not going to lie—they sucked. The world was wobbly, and I did little more than nap, but since then I've been up and about, walking around the neuro ward, and practicing my PT. I can read, watch movies, and post on Reddit. I'm certainly not 100%, but I'm honestly shocked at how good I do feel, considering my brain was on display 72 hours ago.

I know that surgical results vary, and I came into this relatively young and in good health, so please no that my situation is not a guarantee. But please know as well that this does not have to be a nightmare. There are good surgeons out there that can perform some truly amazing feats. Please do your research, and prepare the best you can, but there is hope for many who suffer from this condition.


While I'm thinking of it, a few tips I wish I'd known:

I actually brought a shower stool with me. It's pretty unnecessary. I think that would still be the case even if I were struggling more in my recovery.

Speaking of stools, if you take any opioids, take the stool softeners as soon as they're available to you.

The UCSD Medical Center cafeteria makes a surprisingly good bowl of pozole.

San Diego has a wide range of micro-climates. When I planned my clothing for my extended stay, I failed to understand that my Airbnb is near La Mesa, about 15 miles inland, and therefore 20° warmer than the San Diego waterfront.

Work with the UCSD team to schedule vestibular therapy at your local hospital for after your trip. Do so well in advance of your actual surgery, since they book out in advance. It'll be one less thing to worry about while you're doped up and recovering from surgery.

My Airbnb's ample collection of shot glasses is serving me well as a way of organizing my many, many pills.

Ukeleles I just wanted to chip i after reading your post. There is a good video Dr Chan did in the webinar library- he says wait for 5 years re response. A member here Paul Wellen for example had 'growth' after a few years- he waited and it shrank back down re it was pseudoprogression. Yours was treated almost end of 2022 - so I think you are likely experiencing pseudoprogression. From all my own reading and looking again even yesterday at the radiation video in the library on our site (this one Gamma) that you should not be too concerned.

Thank you for sharing! I had CK 5 years ago and no regrets. Mine has responded well and I had almost no side effects (hearing and balance still fine). I have had TMJ pains which I thought may be associated with the AN as its only on that side and I found an old case on this dating back to the 90s. Anyway all good I now wear a dental guard at night which helps. If I get a decent nights sleep then I am happy as occasionally I get nerve pains. I have seen an opthalmologist, a neurosurgeon, a neck and jaw specialist physio, dentist etc but no real insights. In any event I am healthy so cant complain. I am 63 years old. I do take some supplements and live a very healthy lifestyle. I still read articles and watch videos on AN to help me understand it.

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.