Author Topic: 3 Days Post-Retrosigmoid Surgery at UCSD Report  (Read 3788 times)

christopherbench

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3 Days Post-Retrosigmoid Surgery at UCSD Report
« on: July 08, 2024, 09:18:54 am »
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.

DanFouratt

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Re: 3 Days Post-Retrosigmoid Surgery at UCSD Report
« Reply #1 on: July 08, 2024, 03:46:25 pm »
The shot class statement brought a smile to my face.  We all need a sense of humor to fight through.  I glad you have one.  Good luck in your recovery.

Dan
Dan Fouratt             64 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23            
MRI 6/14/24            7mm x 12 mm

donjehle

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Re: 3 Days Post-Retrosigmoid Surgery at UCSD Report
« Reply #2 on: July 11, 2024, 06:45:52 pm »
Thank you, christopherbench, for sharing your experience on the forums!
As you know, when our forum members share their experiences, it benefits, not only other ANA Forum members, but others who search through the forums for any information which might be helpful to them.
So, I appreciate what you shared, and I wish you the best on your continued recovery and journey!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

christopherbench

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Re: 3 Days Post-Retrosigmoid Surgery at UCSD Report
« Reply #3 on: February 28, 2025, 05:11:45 pm »
Just wanted to offer a follow-up from 9 months out. Someone messaged me about the rest of my recovery, so I'ma paste here my message to them:

Hey, sorry for the slow response. Just to clarify, first: Dr Friedman was always for the retrosig approach.

Re: my post-op experience, as I wrote in my initial post, the first 12 or so hours just sucked. The walls kept slipping and sliding across my field of vision, and the vomiting was both frequent and projectile.

That said, I started recovering quite quickly. By the time I left the hospital (3 days post-op) I was walking around quite well on my own. My first day out of the hospital, my fit bit informs me that I walked just shy of 10,000 steps — the result of an extended walk to a taqueria near my airbnb. At that point, I was basically fully mobile, and by a week out, I was averaging over 10K steps a day, with the SoCal sun and heat more of a problem than my actual surgical recovery (we were pretty far in from the coast and temps were in the high 90s). By two weeks out, I was regularly walking over 20K steps per day and felt comfortable driving and getting on a bike. Bike riding posed some minor balance issues initially (basically, looking over my shoulder was disorienting), but that faded within the first couple hours of returning to riding.

I probably could have driven a car pretty much as soon as I left the hospital, but my family was around to give me rides and not many places to go, so I played it slow and safe — no need to dance with the devil if I didn't have to. I did experience some mild vertigo occasionally while driving for the first couple-few weeks  — but I was basically 100% behind the wheel within, say, 3-4 weeks.

I did physical therapy for a few weeks, which was helpful with keeping my already-quite-limited vertigo in check, but I stopped going before the end-of-run since my symptoms were so mild, and my therapist was clearly running out of stuff to tell me other than 'keep doing the same thing.' That's not meant as a slight to my therapist, who was great. Since then, my vertigo has remained mild, but it does worsen slightly if I spend too much time at my desk (talkin' like 50 or 60 hr weeks) at which point a make a point to get up and about or to resume some of the PT exercises.

I've also started, in the last couple months, to get brief, but occasionally pretty intense headaches if I'm exercising in a way that leads to my blood pressure rising quickly. Deadlifts are pretty much right out, and I image that if I tried to hang upside down it would probably start sucking pretty fast, but I'm a 42 year old man who no longer spends all that much time playing on jungle gyms, so that doesn't really come up very often.

My hearing is pretty much exactly as it was when I went in for surgery (moderate loss in upper registers in one ear), for which I am profoundly grateful. Truly, one of the great wins of my life. I love music and listen to it pretty much constantly. I'm so happy that I can still enjoy (almost) every aspect of it. I did get a hearing aid, and it's helpful, tho I found it rather irritating at first, but if you wear it for a few months, your brain really can adapt to it, tho it can be a cacophonous journey to get there.

All in all, I'm tremendously lucky and deeply grateful — to Drs. Friedman and Schwartz and the whole UCSD team, to my employer for giving me good health insurance and ample time to recover, for my family for supporting me, for my friends for emotional support. My outcomes were basically as good as I could possibly have hoped for. I know that's not true for everyone (especially on the boards here, which understandably tend to foreground people with complications), and I try not to forget how lucky I am or to undervalue the hard work of those who helped me get here.