Author Topic: Anyone retain quality hearing after radio surgery?  (Read 2338 times)

drumfest

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Anyone retain quality hearing after radio surgery?
« on: January 11, 2023, 07:40:03 pm »
Has anyone been able to retain quality hearing long term after radio surgery?  If you have, would you mind sharing which type of radio surgery, where you had it and who did it?

I’m a professional musician and would like to try and retain my hearing long term.  I’m currently looking for an expert center and trying to pick the best doctor to do this. (if in fact the hearing preservation rate is of a good percentage) 

Any info would be greatly appreciated!

Thanks!
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

mwatto

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Re: Anyone retain quality hearing after radio surgery?
« Reply #1 on: January 12, 2023, 03:49:44 am »
I am 4 years out and my hearing seems fine (3x Cyberknife) I am about to get my annual audiogram but its been stable up to now.
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

drumfest

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Re: Anyone retain quality hearing after radio surgery?
« Reply #2 on: January 12, 2023, 03:12:31 pm »
mwatto,  Thank you very much for the info!  I'm leaning more and more towards radiosurgery and I really want to get it spot on with an expert provider and team.  Obviously, nobody wants this messed up.  I really appreciate you taking the time to reply!!!

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

mendozaulises78

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Re: Anyone retain quality hearing after radio surgery?
« Reply #3 on: January 12, 2023, 07:02:19 pm »
I consulted with Stanford and for my case they told me CK was the best option in terms of hearing preservation.  I have hearing loss from my tumor, it is classified as Moderate to Severe, so they told me that in some cases there is hearing degradation but that it occurs slowly. 
From what I've read in surgery the best outcomes to preserve hearing after surgery depends on whether you have good hearing or not, that this is a biggest factor than tumor size.
I'd guess with radiation it's the a similar process.  But radiation is only recommended for small to medium tumors.

drumfest

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Re: Anyone retain quality hearing after radio surgery?
« Reply #4 on: January 12, 2023, 07:59:55 pm »
mendozaulises78,  Thanks!  I was looking to consult with Stanford as well so, your info from them is appreciated and helpful.  I'm not finding many videos on the ANA website or youtube channel that specifically talk about CK and it's benefits.  Most of the videos I've come across are GK.  If there are some quality videos out there, someone please throw me a link.  I'd like to see & hear from the experts on CK.

Thanks Again!!  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

donjehle

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Re: Anyone retain quality hearing after radio surgery?
« Reply #5 on: January 13, 2023, 04:09:29 pm »
Here are a few videos which you might find helpful.  I have watched all of them a while back, but I don't remember what percentage of the videos are specifically on cyberknife.  You probably can find more if you search youtube.

https://www.youtube.com/watch?v=y5e1kQUhu78

https://www.youtube.com/watch?v=Qv91jUc5Q68

https://www.youtube.com/watch?v=AARWUgl80LA

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.

drumfest

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Re: Anyone retain quality hearing after radio surgery?
« Reply #6 on: January 13, 2023, 06:17:00 pm »
donjehle,  Thank You for the video links!!!  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

mwatto

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Re: Anyone retain quality hearing after radio surgery?
« Reply #7 on: January 14, 2023, 01:25:43 am »
Hi drumfest I will let you know re my next audiology report which is next week happy to email you my reports past four years. I had very good hearing right up to treatment. My only symptom was this stabbing earpain. Kept being told it was nothing..took two years to insist on MRI as I knew from Dr Google. Anyways if mine is fading it must be very slowly! Every year when I see audiologist she does wax removal and all the testing. I may have some loss I am not aware of...unforunately I still hear my husbands snoring out that ear - I sleep on other ear! I listen to music all day and I listen to white noise at night. I have to wear earplugs if we go to movies or concerts as my hearing leans more to hyperaccusis. All my life I could not tolerate loud noise so I must have some damage. I am very careful not to use ototoxic medications (I google this if I am prescribed anything) I also refuse contrast after first MRI. If you are in Australia I had CK done at 5D Clinic in Perth. My profressor is very old and very experienced and the whole team is also. I have had no side effects at all my balance is also fine- however the deep nerve pain does seem to flare eg after the vaccine it was bad. Now I am on CBD THC this has gone and sleeping deeply (I bought directly from a grower and its full spectrum- medical cannabis was a big waste money).
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

drumfest

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Re: Anyone retain quality hearing after radio surgery?
« Reply #8 on: January 14, 2023, 03:30:47 pm »
donjehle,  The videos were extremely helpful!  I enjoyed Dr Chang's take on CK treatment.
Diagnosed 4/2022 L sided AN 1.2cm.  stuffiness/clogged sensation w/slight hearing loss but good WRS.  Occupation: Professional musician.  No treatment yet

drumfest

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Re: Anyone retain quality hearing after radio surgery?
« Reply #9 on: January 14, 2023, 03:34:32 pm »
mwatto,  Wow!!  Thanks for all the info in your reply.  It helps a great deal.  I'll be doing more research but it's starting to look more like I'm leaning towards CK treatment.  I have a small tumor and I'd like to get it treated before the hearing becomes worse.  Then my new baseline would be that declined hearing.  Trying to avoid that.  Thanks again and again!!!!!  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

mwatto

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Re: Anyone retain quality hearing after radio surgery?
« Reply #10 on: January 14, 2023, 10:50:03 pm »
Hi Drumfest PM me anytime.

 my friend had CK for a small AN three years ago. She already had hearing loss though (how diagnosed) and had one session. Her AN has shrunk (1 mm each dimension)at last MRI end of last year and told only has to have MRIs every two years. She was put on steroids re her hearing after CK but she now wears a hearing aid although she does not have total loss she says- it basically stayed the same as pre treatment.
So maybe it does depend on prior hearing. Right now I am wearing headphones as I type this  as the soft music playing is still intrusive to me while I am working. I am 62 so I expected to have less hearing in time...genetically though my parents and granparents no hearing aids or glasses...in 90s.  In any event I was told surgery be very risky for me re location. I am feeling good! We play chess a few times a day and I have an academic job - work from home so my brain gets a workout.
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

mwatto

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Re: Anyone retain quality hearing after radio surgery?
« Reply #11 on: January 17, 2023, 01:53:48 am »
Hi Drumfest got my latest audiology report year 4. No change. I have 97% in good ear and 85% in AN ear- which is the same as before treatment.
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

drumfest

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Re: Anyone retain quality hearing after radio surgery?
« Reply #12 on: January 19, 2023, 02:05:12 pm »
mwatto,  Awesome news about your hearing results!  Congratulations!  It's looking more and more like I'm going to move in the radiology direction.  I'm interested in possibly Dr Chang at Stanford with his experience on CK.  I know it's controversial concerning the premise that fractionated treatment might be better for hearing conservation than a GK single session.  I'd prefer GK and the single option, but if CK and fractionated gives me a better hearing outcome, I'll go that way.  It's tough to get a clear answer on that question.

Thanks again for your info!!!  Take Care!
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

mwatto

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Re: Anyone retain quality hearing after radio surgery?
« Reply #13 on: January 19, 2023, 07:25:52 pm »
Drumfest from what I have read on- its best to have a lower GY around cochlear nerve- a bit on  this in papers.  I had 3 CK sessions. My friend had one and is now wearing a hearing aid. Bot of us though had shrinking a year out. Chang is def a good bet -was so impressed with his video on CK actually (see in forum library) it was excellent info and very reassuring. So many factors to consider- location, size, age of person etc. In my case surgery been risky. So far so good...! These days you get small custom made hearing aids I will do that if I need. I would say also avoid loud noise.
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

richcooks

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Re: Anyone retain quality hearing after radio surgery?
« Reply #14 on: January 20, 2023, 02:02:03 pm »
I had Fractionated Sterotactic Radiation 12 years ago for my 8mm AN. 
My hearing is the same as before my treatments.  Still have the Tinitus.