Author Topic: Hearing Preservation Post Radiosurgery  (Read 1057 times)

ANSkeeterMcGee

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Hearing Preservation Post Radiosurgery
« on: December 23, 2022, 05:41:53 pm »
Anyone have any positive stories 8-10 yrs out?  I am at ~85% hearing presently and am REALLY torn between microsurgery and radiosurgery.  The decision is keeping me awake at night and impacting my life.  The tumor is 3 mm by 8mm, confined to the inner ear presently, and I am 46 with a family who solely depends on me financially.  My job largely involves reviewing telephone recordings on a pre-arbitration basis. I am also open to negative stories (i.e. if I had it to do again, then I would have . . .).

mwatto

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Re: Hearing Preservation Post Radiosurgery
« Reply #1 on: December 23, 2022, 09:53:14 pm »
My hearing hasnt deteriorated much - I listen to music all day and have yearly audiograms. I had CK 4 years ago. At 61 I would describe my hearing as pretty normal. I had fractionated x3.
« Last Edit: January 08, 2023, 01:29:15 am by mwatto »
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

donjehle

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Re: Hearing Preservation Post Radiosurgery
« Reply #2 on: December 26, 2022, 07:31:01 pm »
It is a great question you pose, ANSkeeterMcGee!

When you talk to a a specialist who does neurosurgery, they like to quote studies that tell how those who had radiation for their VS (or AN) lose their hearing over 8-10 years.
When you talk to a specialist who does radiation, they like to quote studies that say there isn't much difference between hearing loss in surgery patients and hearing loss in radiation patients.  They also like to say that many AN patients are elderly when they have their radiation treatment, and there is naturally a decline in hearing (even in non-AN patients) over the 8-10 year period.

I am not a physician, and I cannot give you medical advice.  But my perception is that what matters most is not whether you have radiation or whether you have surgery.  What matters most, in my opinion, is the quality and experience of those performing the treatment (no matter what the treatment is).  There are patients on these forums who have gone to a local neurosurgeon who only did one or two VS surgeries a year, and the patient ended up with horrible facial paralysis.  Likewise, there have been patients on these forums who have had GammaKnife or CK by specialists who did not have much experience.  These patients suffered terrible hearing loss and other issues.

Again, in my humble opinion, I think it matters more on the experience of your specialist than it does on which procedure is better.  There are many in these forums who have chosen to have surgery and have done well.  There are many on these forums who have chosen to have radiation and have done well.  Remember that you are placing your brain in the hands of the specialist you select, so please choose wisely.

Best wishes!
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.

richcooks

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Re: Hearing Preservation Post Radiosurgery
« Reply #3 on: January 06, 2023, 01:07:41 pm »
Best of luck moving forward after your treatment.  I had fractionated sterotactic radiation... in 2010.  My AN was discovered in 2003 as 1mm.  Tiny tiny tiny.  It grew 1mm a year and 2010 I too had to decide which treatment to do.  Oddly enough my brother discovered he had a AN at the same time as me.  I live on the Jersey shore.  Lots of Medical facilities to choose from.   I visited UPenn and others and did a lot of research.  The one thing that kept coming back to me was that you have a better chance to preserve hearing with Fractionated vs The Gamma Knife.  Reason being Gamma Knife is one big dose of radiation that results in collateral damage to health tissue.  Fractionated are smaller doses given over a period of time.  Any exposure to healthy tissue is at a lower dose and the tissue has time to recover before the next treatment.  I had to go five consecutive days for my treatment that lasted a total of 45 minutes each which included the prepping etc..  Here I am 13 years later with no issues other than the tinitus and some (not a lot) loss of hearing in my right ear.  My brother lives in Rochester NY and he chose Gamma Knife.  Lost his hearing in his affected ear.  What I learned was that you need to search out the doctor who does the procedure you want.  The expert at UPenn only did Gamma Knife.  After meeting with him and based on all the research I did I decided that I wanted Fractionated.   One of my questions to all of these guys was, " Does my Tumor make a good target for you to engage?"