Hey everyone, I would like to add to the plethora of wonderful existing post-op updates to help give some context to others.

I had my surgery on 28-March at UCSD with Dr Friedman and Dr. Swartz, who removed by 3.7cm AN.  My experience was similar to nearly everyone else’s: they are professional, courteous, and make the process feel effortless.  From the moment you commit to receiving care from the team, the orchestration begins and is a thing of beauty to experience from a patient’s perspective.

Melissa scheduled all of the pre- and post-op appointments, provided detailed instructions, put you in touch with various resources you will need during your stay (for instance the UCSD Family House) and was there to answer any questions and set expectations.  All of the pre-op appointments went smoothly, and they were always on schedule, which was indicative of how tight of a ship they run and the respect they have for their patients.  The day of the surgery, the admission process was SUPER smooth: one single payment for all the services provided…all appointments, hospital charges, anesthesia.  This was very helpful in easing my mind and not worrying about surprise charges later.  It also helped to know that I would meet my insurance’s deductible and out of pocket max at this time.

In my opinion, this next bit is where Dr. Scwartz and Dr. Friedman started to show their TRUE professionalism.

My surgery was originally scheduled as the second surgery of the day on the 27th.  Just as I was about to start the pre-op preparations, and I mean they were just about to stick the IV line in, they came in and asked if they could move the surgery to the 28th because their first surgery was going long.  They could have proceeded as planned, they could have knocked two surgeries out in one long day, they could have had a Friday off.  They chose to come back fresh the next day so they could be calm, focused, and give me the best chance of a successful outcome.  For this, I am eternally grateful…the surgery went exactly as expected: I lost 100% hearing in my left ear.  No tinnitus or headaches. 

Now for some details on my recovery thus far: in summary, the physical went faster than the mental.

My ambition during recovery was to do as much walking as I could handle.  Realistically, I walked as much as I could, but it wasn’t as much as I expected.  My routine for the next 4 weeks ended up being walking, watching youtube, listening to audiobooks, and sleeping. 

Starting out, I spent the largest portion of my time sleeping.  I felt this was a good metric to track early on.  I didn’t sleep much during my 3 days in the ICU.  By the end of week 1, I had gone from 4 naps per day to 2.  By the end of week 2, I was napping once per day.  By the end of week 3 I was napping once every few days.  Since returning back to work after week 6, I did feel I was mentally exhausted most days and napping became more of a regular thing when I worked from home.  I should mention that I work in an office, so mentally work is more taxing.

Walking started at 5-10 min x 4 per day.  By the end of week 1 I was walking 10-15 minutes 4x per day.  By the end of week 2 I was walking 20-30 minutes 3x per day.  By the end of week 3 and beyond I was walking 1hr 3x per day.  Always including as much of the vestibular exercises as possible.  An important note here, that until the end of week 5 I was acutely aware to keep my heart rate low using my wearable HR monitor.  Stay safe, sometimes the hills can really get your blood pumping!  I resumed some light weight lifting and cycling after week 6, and those have resumed with no issues to normal at this point.

While your brain is adjusting, your eyes will be doing some funny things.  Video calls with my family and watching videos was dizzying for some time, so I had to take those in moderation in the first week.  I also expected to be able to read a fair bit with all of this downtime, but turns out my books were dead weight!  Audiobooks became my pastime while I shut my eyes. 

All things considered, I feel like my recovery went fairly quickly, and I credit that to a few things.  First, come into the surgery as physically fit as you can; it helps get you back out of bed and start recovery.  Secondly, UCSD’s surgical team and process are second to none; Dr. Friedman and Dr. Swartz and their staff demonstrated they always put the patient first, my outcome being a testament to that.  Thirdly, take recovery very seriously; I am mostly always moving, so it was very easy for me to over-do physical therapy portion, and I had to dig deep inside to rest.

At the 8 week mark, I am enthused to report I am nearly fully physically recovered.  I just cycled 85miles with my normal cycling group and am lifting ~85% of my normal working weight again.  Work has been tough reacclimating after 6 weeks completely off.  I should note that I work in an office.  I get mentally fatigued around 2-3pm, and breaks seem to help (or a nap if I’m home!).  Many have said that it takes 3-6 months for that to subside, so I’m hopeful. 

My key takeaways from this experience were that you can and should control how you come into the procedure and how you recover.  Focus on that instead of the what-ifs.  You can’t control the surgery, only the team that will perform it, so put it in the best hands possible and let it be.  UCSD and the combo of Friedman and Swartz did me that service. 

I documented most of my journey in bitesize YouTube shorts: https://youtube.com/shorts/NCBKvm182vs?feature=share

sissyn

How did the MRI go?

How are you doing now? I hope things are starting to look up for you. I can totally relate—I wasn’t able to work for a couple of months either, and it really threw me off. During that time, I mostly just stayed home, watched way too much TV, and oddly enough, spent a surprising amount of time chatting with ea sports customer support because some of my channels and services kept acting up. It’s funny how those little tech issues can become your biggest distraction when you’ve got too much time on your hands. Hopefully, things are getting back on track for both of us.

thank you all for validating that I'm not losing my mind.  Counting down the days for a resolution whatever that may be.  Thank you

Hi Sissyn,

I had facial twitches related to my AN, little tiny twitches that were not disruptive or noticeable, except to me. These were a few seconds at a time, often for a period of day. They came and went for two years of watch and wait.

I also had little twitches around my eye on the AN side, and numbness (sort of) around that side of my mouth and tongue. Same sort of frequency as above.

Surgery relieved all of them. I have the tiniest of all former twitches sometimes below that eye, but I consider it a great reminder of a successful outcome, honestly.

My Acoustic Neuroma was on the Vestibular nerve, and it was not originating on the facial nerve--but it was "bothering" the facial nerve before surgical removal. (That's my non-medical description.)

I hope your consult went well--and I hope you find relief soon.

Best,
Skier