Author Topic: translabyrinthine surgery?  (Read 1626 times)

cherylann

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translabyrinthine surgery?
« on: February 05, 2023, 02:13:11 pm »
I was wondering what your outcomes/successes/problems were with translabyrinthine surgery was?  I realize everyone's story will be different but I need some reassurance right about now!  Thanks!  Cheryl

Greece Lover

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Re: translabyrinthine surgery?
« Reply #1 on: February 05, 2023, 08:34:25 pm »
I did not have translab but I had middle fossa. Not sure what your concerns are.  My understanding is that the Translab  gives the best outcomes in terms of tumor removal and best facial outcomes.  The one drawback is guaranteed complete hearing loss. 

I don't know how different recovery might be from the various surgical approaches.  it's not easy, but its totally doable.  the body is amazing and heals so fast and well in the grand scheme of things.  You wake up with those balance nerves gone, which is tough, but the brain adjusts.

Good luck!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

bri-82

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Re: translabyrinthine surgery?
« Reply #2 on: February 05, 2023, 09:08:58 pm »
I had a translab in 2017 at Hopkins. I had already lost hearing in the ear from a prior surgery (same condition) so obviously hearing loss was not an issue for me. One issue you might ask about is whether the surgeons will harvest a fat graft from you to help plug up the entry to prevent CSF leak. A minor annoyance. I think at the time the overall message I interpreted was that the translab gives the surgeons good access and view of the nerves.

~BM
4.5 cm Right AN.
Sub-occip. Surgery 2011 @ Wash. Hosp. Center
Gamma Knife 2012 @ Wash. Hosp. Center
Translabrythine Surgery 2017 @ Johns Hopkins
Cyber Knife 2022 @ Johns Hopkins
Sub-occip. Surgery 2023 @ Johns Hopkins

cherylann

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Re: translabyrinthine surgery?
« Reply #3 on: February 06, 2023, 11:56:03 am »
Just wondered how long you were all "out"? Being under anesthesia for 8-10 hours scares the crap out of me! Thanks for responding though! I guess I will just deal with everything.... Cheryl

bfoley

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Re: translabyrinthine surgery?
« Reply #4 on: February 06, 2023, 04:31:48 pm »
Hi Cheryl!

Translab surgery 1/17/23 at MN Mayo with Dr Link and Dr Neff and teams.

This is after 2019 gamma treatment that failed. 

Happy to answer any questions. Feel free to email me. 

Surgery went well, I was under for 7-8 hours. I understand how nervous you are. My outcome was super positive. I am continuing to recover at home, and just got my stitches out by my primary care Dr today.

I had complete trust in my surgical teams. I pray you have the same!!

donjehle

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Re: translabyrinthine surgery?
« Reply #5 on: February 06, 2023, 07:43:46 pm »
Hi Bonnie,

First, thank you for responding to Cheryl Ann's question.

And secondly, can you give us a report on your surgery and recovery?

I would love to hear how it went (especially after I spoke with both Drs. Link and Neff).

Best wishes on your continued recovery!
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.

cherylann

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Re: translabyrinthine surgery?
« Reply #6 on: February 07, 2023, 01:17:30 pm »
Thank you for responding (both of you!) I will email you later! xo Cheryl

v357139

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Re: translabyrinthine surgery?
« Reply #7 on: February 15, 2023, 08:40:12 pm »
I had translab for a 35mm in 2013, went very very well.  I did lots of research also.  Feel free to email me as well.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

cherylann

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Re: translabyrinthine surgery?
« Reply #8 on: February 26, 2023, 12:27:11 pm »
Thank you!  I had surgery the 20th- apparently it was sub-occipital craniotomy? (Have to read report). Main concern was being under for nine hours but I weathered that storm.  Trying to wean myself off of meds to get my system working again. Boy they pump you full of pain pills for five days and then expect you to use the bathroom? Done!!

Greece Lover

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Re: translabyrinthine surgery?
« Reply #9 on: February 27, 2023, 09:15:18 am »
Getting "regular" again is one of the worst parts of recovery!  I eventually resorted to a suppository, we called it the "silver bullet" and that did the trick!  Good luck!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

cherylann

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Re: translabyrinthine surgery?
« Reply #10 on: February 28, 2023, 09:26:23 am »
Hi Greece Loer,
Yeah!  I am surprised they didn't set me up with some.  I am taking Miralx with my tea in the morning and hope like yesterday helps a bit!  Thanks for response....("Here are two Percoset, but you can't leave the hospital unless you leave sometinig in the commode"- hilarioius~)

v357139

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Re: translabyrinthine surgery?
« Reply #11 on: February 28, 2023, 08:44:33 pm »
If that is your worst issue, that sounds like it was a great success.  I had the issue also.  Took a while before my appetite came back as well.  Congratulations!!!!
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

cherylann

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Re: translabyrinthine surgery?
« Reply #12 on: March 06, 2023, 06:39:45 pm »
It was sure uncomfortable....I guess in addition to everything else that was going on (double vision, headaches, catching bronchitis) it was just another thing that I had to overcome.... :-)

v357139

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Re: translabyrinthine surgery?
« Reply #13 on: May 08, 2023, 06:50:49 pm »
Very happy your surgery went well.  Still doing good?
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!