Author Topic: 3 weeks Post Translab - Schwartz & Friedman  (Read 943 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.

Bp15

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Re: 3 weeks Post Translab - Schwartz & Friedman
« Reply #6 on: October 13, 2022, 06:28:25 pm »
Does your tinnitus get better after the surgery or just same ?

Were you sensitive with loud sound before that and if you did what about now?  Mine occurred before the surgery and still having similar issue with noise level sensitivity and I don’t remember what happened to me 15 years ago post-surgery.

Did they put the Titanium plate on the surgery opening?

I had AN surgery 15 years ago by Friedman and Schwartz when they were at House Ear.

I just had another surgery last week by 2 doctors at House Ear to remove some cholesterol Granuloma somehow built-up in the same middle-ear that had TransLab done.  They removed the plate and did not put it back, even though i wish that they did, however, they decided to do that during the time of surgery and thought that was best for me to leave it off.  They also said that now they don’t put on the plate anymore (not sure how many new surgeries that did that they didn’t put on the plate).

I was released after one night in hospiital and it is only 6 days after surgery so still not able to sleep well due to the surgery site still swollen and i still have pain when laying down on the pillow.

Hope you’ll recover more and more like I did.  I remember 2 months after the surgery, my wife and I took off to visit Vietnam for 2 weeks, and I had no issue whatsoever. 

My only recommendation is that you’ll take it easy with your pre-surgery activities for at least 6 months before attempting to go back to the rigorous life prior to surgery, even though doctors said ok to do so after 2 months.  Activities like weight lifting, running, playing tennis, basketball, etc…, which I did and I had a CFS leak after 6 months.  Luckily it stopped leaking after a few months by itself, but you don’t want to get into that state.

I hope it helps and if you could answer the questions I pose above, i would appreciate it. 

Thanks

DZ

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Re: 3 weeks Post Translab - Schwartz & Friedman
« Reply #7 on: October 17, 2022, 08:29:58 pm »
Hi Bp15 -

Happy to share my personal experience - and thank you for sharing yours!  but I cant speak to the data or scientific literature on your queries.  I do recommend the AN review article published in the NEJM in 2021.  I found it very helpful.

1. Tinnitus - for me I had very mild buzzing on the left and now post op (I have no hearing now on the left due to the translab procedure) the ringing seems a bit worse and occasionally have from both sides. But I mostly ignore and not bothersome except with loud sounds. It seems as though the tinnitus increases when there are loud external sounds - like when I vacuum, so now I put an ear plug in my right ear. Its like the tinnitus is in competition with the external sound and goes away after! very odd.
2. I was never sensitive to loud sounds and no change post-op.  I am just more careful on my right side with sounds now that I have no hearing on the left, as I dont want to damage my right side so more protective.
3. Titanium Mesh - yes I have a titanium Mesh (+6 screws and abdominal fat) not sure it is the same as a "plate" - perhaps changed after 15 years - UCSD -schwartz/Friedman shares the operative report online so I have a copy and read though all the details!

Sorry it is difficult to sleep but understand you are just less than a week post op. I sleep on both sides without discomfort. With a really soft and fluffy pillow I was able to sleep on both sides a couple weeks after surgery, as I recall.
Wow - an international trip so soon after surgery!  Good for you!

I feel pretty fully recovered (maybe 95%) now 2 months post op - I started back at the gym, weight lifting and running 4 weeks post op so trying to get back into shape again! I lost a lot of muscle mass being so sedentary for 4 weeks.

So sorry you had a CSF leak - surprised it was after 6 months. I thought it could occur relatively soon after (days) the surgical event. Obviously not.  what symptoms did you have? and how was it treated?

Can I ask why you chose House vs. going back to Friedman/Schwartz for the granuloma? And what symptoms did you have to seek medical care?

Thanks!
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.

Bp15

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Re: 3 weeks Post Translab - Schwartz & Friedman
« Reply #8 on: October 28, 2022, 12:46:48 pm »
Please see my responses below:

1. Tinnitus - for me I had very mild buzzing on the left and now post op (I have no hearing now on the left due to the translab procedure) the ringing seems a bit worse and occasionally have from both sides. But I mostly ignore and not bothersome except with loud sounds. It seems as though the tinnitus increases when there are loud external sounds - like when I vacuum, so now I put an ear plug in my right ear. Its like the tinnitus is in competition with the external sound and goes away after! very odd.

Loud sound and even when i talk, tinnitus worsen and gives me headache.  Still having this issue after 3 weeks.  I dont recall what happened after my first surgery 16 years ago, but i know for sure i did get used to it after few months and i was fine until 6 months ago when this new issue surfaced.
 
2. I was never sensitive to loud sounds and no change post-op.  I am just more careful on my right side with sounds now that I have no hearing on the left, as I dont want to damage my right side so more protective.
3. Titanium Mesh - yes I have a titanium Mesh (+6 screws and abdominal fat) not sure it is the same as a "plate" - perhaps changed after 15 years - UCSD -schwartz/Friedman shares the operative report online so I have a copy and read though all the details!

I did not remember anything called “mesh”, so maybe at that time only a solid plate and now maybe they think it is better to use a mesh.  Now seems like there might be an option not to use any mesh/plate but just let the opening covered up with the scalp, which is what they had for me.  I did ask the doctor before the surgery, if i could have the plate/mesh back, but then they decided during surgery not to put it back on, which I think they probably decided that it is best for me, however, not sure if because of that or not, I’m still experiencing either pain/pressure when sleeping with the back of head against pillows.  When I am up  however, it seem sot be OK.  Some irritation and loss of balance when walking but Tylenol seems to help….I hope this will eventually go away, if not, it might not be the best thing to endure for long run.

Sorry it is difficult to sleep but understand you are just less than a week post op. I sleep on both sides without discomfort. With a really soft and fluffy pillow I was able to sleep on both sides a couple weeks after surgery, as I recall.
Wow - an international trip so soon after surgery!  Good for you!

I also know that after few months after the first surgery, I was totally fine (with the total loss of hearing on that side due to TransLab).  I went right back into weight lifting, running, bicycling, tennis, etc…, then 6 months later i started to have headache, more loss of balance, which was why i went back to see dr. Friedman.

I feel pretty fully recovered (maybe 95%) now 2 months post op - I started back at the gym, weight lifting and running 4 weeks post op so trying to get back into shape again! I lost a lot of muscle mass being so sedentary for 4 weeks.

So sorry you had a CSF leak - surprised it was after 6 months. I thought it could occur relatively soon after (days) the surgical event. Obviously not.  what symptoms did you have? and how was it treated?

Can I ask why you chose House vs. going back to Friedman/Schwartz for the granuloma? And what symptoms did you have to seek medical care?

This is my take: When first having tumor, it is quite simple for doctors to decide to remove the tumor and so everything seemed to go as planned.  When we start to have issues after the surgery, it might be a different ball game.  Doctors then start to act differently, not like when they first saw you for the tumor issue, which was what I had experienced.  Everything is rosy when there is no issue.    Also, with my second issue, im sure due to the first surgery, it is not easy to find any doctor who would be wiling to open the old wound up like it was done for me last few weeks.  Who would want to touch it?  And who would you trust to do this the second time for you?  The only option that I had was to go back to House Ear, which is by far the best place that deals with this type of issues in general, and the doctors there have worked on the same area for hundreds of times and they know how to deal with reopening the same incision and put it back after they are done removing the cyst.   This time however, I think it might take longer to recover, probably due to 1).  I’m older now so it would take longer to recover. 2). To open up the old wound to remove the titanium plate, it probably required more extensive cut and more invasive work around the scalp and skull so it might be that it would take longer to heal.  I’m still feeling some tenderness and swelling around that side behind the ear, and the incision seems to be more prominently visible this time than last time.

Hope this answers your question.

DZ

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Re: 3 weeks Post Translab - Schwartz & Friedman
« Reply #9 on: November 02, 2022, 07:10:57 pm »
First of all - thanks BP15 for taking your time to reply to my queries.  Your responses were very informative.

After almost 16 years, having new problems seem so unfair. So sorry you are having worsening tinnitus and headaches after this 2nd procedure. Hope it resolves with time.  I'm glad to hear that tylenol is helping the irritation. Im sure your correct that going back for surgery is viewed very differently by the MDs and going to the most experienced makes a lot of sense to try and resolve the issues.  Your quality of life is key.   Again, thanks for sharing your experiences and hoping it gets better for you day by day.  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.

Neleh

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Re: 3 weeks Post Translab - Schwartz & Friedman
« Reply #10 on: January 16, 2023, 11:14:22 am »
I am quite new to this forum but find it very helpful! I am awaiting a date for translab surgery with Drs Schwartz and Friedman and hearing about all your experiences is great.  I was diagnosed the end of Dec 2022 with a 1.7 x .9 AN on the left. 2 years of tinnitus and 6months of decreasing hearing loss as well as 6 months of progressive gait/balance problems. I am a retired RN and 71 yrs old. My tumor is 3mm from the brainstem, but since I am very healthy, at this moment, I decided for the surgery rather than wait 6 months for another MRI. My symptoms are affecting my daily life a little and I just wanted to "get it out of there"!
DZ your post op course is encouraging; I wonder if my balance issues will be worse afterwards since I am already experiencing this? Anyone have any pearls of wisdom on that? I also worry about postop issues because of positioning on the OR table ... I have severe osteo arthritis in my neck and already have some minor right shoulder and hip problems.
Any thoughts are welcome!     Neleh
12/29/22 MRI: 1.7 x .9 x.7 
Tinnitus x 2yrs, partial hearing loss and balance issues x 6months
Appointment 1/9/23 @UCSD with Drs Schwartz 7 Friedman
Awaiting a date for Translab Surgery @UCSD

 


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