Author Topic: 3 weeks Post Translab - Schwartz & Friedman  (Read 291 times)

DZ

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3 weeks Post Translab - Schwartz & Friedman
« on: September 11, 2022, 12:01:31 pm »
Hi - I am now 3 weeks post translab (Drs Schwartz & Friedman at UCSD). I want to thank Girldad for sharing his detailed experiences. His information and many others on the AN website drove my decision to travel across the country to be treated by this superb team. Prior to this decision, I had met with three experienced MDs in the NJ/NY area and although their information was helpful, their evasive AN numbers or low surgical procedures (1-2/month) supported my informed decision to go to UCSD.  I am here on this community site to share my experience to perhaps help others.

My postop course was very similar to some others so I will just share highlights. Preop, my tumor was 1.9cm and I had significant hearing loss & tinnitus but no other symptoms (62 yrs). I was discharged after 2 nights and did not have nausea/headaches/complications and no facial nerve issues. I was walking around on the hospital floor (with a nurse) after they pulled my IVs/catheter.  I had no appetite and still to this day have little to no appetite, but I force my self to eat.  My taste buds are definitely altered but this is temporary. I felt profoundly weak for the first 4-5 days and needed to rest a lot but took short walks plus went up steps 2-3X/day for the 1st 12 days.  Now I go on walks multiple times/day, do errands, vacuum, laundry and drive without difficultly and feel lucky to be feeling so well. 

I am not dizzy nor seem to have balance issues but I am not back to my preop status and not nearly as active as I was before surgery (I bike/run/walk).  I have to remember not to lower my head below my heart and not to lift more than 10 lbs and not to over-do my activities.  I sleep with multiple pillows to keep my head at least 30 degrees higher than my heart and at times wake up at 5 am and unable to fall back asleep.  Once I hit my 4 week milestone I can start exercising again and try and gain all the muscle mass lost.  Weight loss - at least 10 lbs.

I understand because my tumor was growing so slowly for so long the right vestibular system was already compensating for the lefts' destruction.  I still have tinnitus (24/7) in both ears but try to ignore these sounds. My next steps are researching hearing rehab as I now have no hearing on the left due to surgery.
Significant Left-sided hearing loss & some tinnitus, Size of tumor was 2.1cmX1.9cmX1.5cm. Translabyrinthine surgical resection on 8/18/22 at UCSD. Thin remanent left on facial nerve. Post op -No left hearing, bilateral tinnitus, no significant balance issues, recovering.

drumfest

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Re: 3 weeks Post Translab - Schwartz & Friedman
« Reply #1 on: September 12, 2022, 01:06:41 pm »
Hi donnazubek,  Thank you so much for posting your experience!  I'm glad to hear you're doing so well post op.

If surgery is needed for me, I'm quite certain I'll be going with Dr Friedman and Schwartz.  Your testimony helps solidify my decision even more.  I'm still watching and waiting, but my tumor is growing unfortunately.

Wishing you continued upward progress and the very best in the future!!!  Thanks once again for sharing and I know it has helped me and many others!

Sincerely,
d
Diagnosed 4/2022 L sided AN 1.2cm.  stuffiness/clogged sensation w/slight hearing loss but good WRS.  Occupation: Professional musician.  No treatment yet

DZ

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Re: 3 weeks Post Translab - Schwartz & Friedman
« Reply #2 on: September 12, 2022, 06:40:58 pm »
Dear D -

Thanks for your feedback and positive wishes! Much appreciated. Having surgery is such a difficult decision, especially since I had so few symptoms so I can understand your waiting.  In fact, as the tumors are generally slow growing I was going to wait some more but as a former nurse knowing that the tumor was moderate in size and pressing on my brainstem made me very nervous.  I think its good to have at least 2 MRIs to determine the rate of growth. And happy I could assist you! DZ
Significant Left-sided hearing loss & some tinnitus, Size of tumor was 2.1cmX1.9cmX1.5cm. Translabyrinthine surgical resection on 8/18/22 at UCSD. Thin remanent left on facial nerve. Post op -No left hearing, bilateral tinnitus, no significant balance issues, recovering.

donjehle

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Re: 3 weeks Post Translab - Schwartz & Friedman
« Reply #3 on: September 12, 2022, 07:29:07 pm »
Thank you, donnazubek, for giving us an update on how things went for you.  It is so encouraging to hear good reports like yours!

A lot of people read the posts in the forum without ever responding -- so you will never know how many people you have impacted by sharing your journey.

Continue to let us know how things are going for you as the weeks go by.
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.

Girldad

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Re: 3 weeks Post Translab - Schwartz & Friedman
« Reply #4 on: September 20, 2022, 09:26:48 pm »
I am absolutely thrilled that everything went well with your surgery. I am also very happy to hear that sharing my experience on here has helped you in some way. Before I made my decision, I read a ton of stories on here and it really helped me be at peace with my decision. You have no idea how happy it makes me to know that I might have been able to do the same for someone else.

Your post op experience sounds almost exactly like mine. It took a long time for my appetite to return as well, but probably not quite 3 weeks. I definitely know what you are talking about with the pillows and trying to sleep in an elevated position. That was the worst part for me, I hated it and didn’t get much sleep. Hang in there and hopefully you will be back to your pre-op self before you know it.

 I also hope you find the hearing solution that you are looking for. I have had my BAHA active for about 3 months now. At first I wasn’t sure about it, but the longer I have went the more I love it. I am getting very used to it and can tell instantly if I don’t have it on or have it muted when someone tries to talk to me. Keep searching for the solution that is right for you. There is a lot of new technology out there.

Once again, I am so glad to hear that you are doing well and had a good experience with Friedman and
Schwartz.
Diagnosed 10/16/20 19.2mm x 14.7mm x 12.7mm
Last MRI on 4/27/21 19.2mm x 14.7mm x 13.8mm
Translab surgery at UCSD 3/17/22
with Drs. Friedman and Schwartz
BAHA user

DZ

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Re: 3 weeks Post Translab - Schwartz & Friedman
« Reply #5 on: September 23, 2022, 07:08:27 pm »
Hey, Don & GirlDad -
I really love this website and forum! The sharing of experiences and suggestions makes me feel less alone in this journey in addition to the hard outcomes of major decisions, like treatment choice and then who to be treated by and what questions I should be asking!!

Girldad, I am so glad you received my feedback (and happy!) because your story really touched me.  I am generally feeling very well, doing my PT exercises (20+ minutes 3-4X/day) and have gone back to the gym (spinning/weight lifting) and running a bit now.  I am so out of shape but determined to get back the muscle mass I have lost.  My appetite has really not returned which isn't necessarily a bad thing!, but my ability to taste is definitely altered.  Most food tastes like paste/nothing.  And I find I am producing less saliva when I am eating.  I will start a separate post to ask if others have had these issues and whether they resolved. 

And thanks for the info the BAHA. Good to hear you love it! I am still exploring options!
Donna
Significant Left-sided hearing loss & some tinnitus, Size of tumor was 2.1cmX1.9cmX1.5cm. Translabyrinthine surgical resection on 8/18/22 at UCSD. Thin remanent left on facial nerve. Post op -No left hearing, bilateral tinnitus, no significant balance issues, recovering.

 


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