Author Topic: Anyone retain quality hearing after radio surgery?  (Read 2693 times)

drumfest

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Re: Anyone retain quality hearing after radio surgery?
« Reply #15 on: January 20, 2023, 05:55:08 pm »
mwatto,  Thank you so much again & again for the info!

richcooks,  Thanks for your reply too!  It helps a great deal to hear of the success stories with retained hearing from fractionated radiation.  12yrs and still solid hearing is wonderful news!!!  Congratulations!  I have tinnitus too in both ears so I "hear" your pain.  :)

Any more experts recommendations are welcome.  Dr Chang seems to be the leader simply because they have a CK machine at Stanford and he regularly does fractionated work on said machine.

I'm going to keep pushing in this direction and more than likely make a decision in the next 3 months or so.  I don't want to wait too long as the stats from Dr Changs video say that earlier treatment for hearing preservation has a better success rate then waiting and watching.  Don't want to be saying I wish I would've.

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

mwatto

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Re: Anyone retain quality hearing after radio surgery?
« Reply #16 on: January 20, 2023, 07:12:15 pm »
Rich my tinnitus abated a while back once I took melatonin (compounded) and 1 mg valium. I no longer have tinnitus tho it was always very faint anyway thank goodness (flred big time after the Pfiz vx). Really reassuring to read your post!
« Last Edit: February 14, 2023, 08:04:31 pm 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

richcooks

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Re: Anyone retain quality hearing after radio surgery?
« Reply #17 on: January 31, 2023, 09:24:02 am »
What dosage of Melatonin did you take?   What time of day did you take it?   Do you know of any studies that show a relationship between AN
 and Melatonin?

drumfest

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Re: Anyone retain quality hearing after radio surgery?
« Reply #18 on: January 31, 2023, 02:35:55 pm »
mwatto,  I'm interested in the answers to richcooks questions too.  I have tinnitus, but at the moment it's manageable w/out supplements/meds & I hope it stays that way, but I'd like to be prepared if not.

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 #19 on: January 31, 2023, 06:28:33 pm »
Rich thats really reassuring!
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

rupert

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Re: Anyone retain quality hearing after radio surgery?
« Reply #20 on: February 12, 2023, 12:01:48 am »
These tumors kill hearing in basically 2 ways.   The tumor steals the blood supply from the nerve and it gradually dies off and or the tumor physically crushes and damages it that way.    Usually both.    Unfortunately the reality of hearing loss with these tumors is its signature feature. Followed by balance and other neurological things.    My hearing was already gone when I had my GK but, before the treatment they explained how they do the mapping to avoid the nerves.    CK being fractionated over 3-5 treatments in theory would seem to induce less damage than the one shot GK.   I’m not sure if this has been proven though.    I’m sure they do the mapping in the same way to try and avoid the nerves.   Both GK and CK are very precise.  Treatment outcomes are very much individual and results may vary widely with any treatment.   There are simply no guarantees with any procedure.  CK has the advantage of being able to be used on different parts of the body. Widely used for prostate cancer.  GK is strictly for the head.    I believe you have researched wisely.    If you go with CK,  Stanford is top notch.   If travel is not a concern then UPMC pittsburgh is A-1 in GK.    Can’t go wrong with either one.   I will also point out that radiation results are not immediate and can take years to see the full benefit.   They told me 6-9 years to see the full impact of the radiation on the tumor. Some damage can still occur for a time after treatment.    Good luck to you in your decision.
« Last Edit: February 12, 2023, 12:17:21 am by rupert »

mwatto

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Re: Anyone retain quality hearing after radio surgery?
« Reply #21 on: February 12, 2023, 12:27:28 am »
Rich unfortunately the studies seem to be old. I honestly do not have tinnitus tho - (tiny bit when stressed or eg after vxine)  and I only take melatonin (compounded liquid or natratroche 2mg) and Vitamind D3 K2...I also work on fibrin so thats bromelain and looking into other blood thinniners. I know melatonin anti oxidant and helps with sleep- white noise, sleep, helps with tinnitus.
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 #22 on: February 14, 2023, 05:47:23 pm »
Rupert,  Thank you very much for your post!  All of your thoughts are helpful.  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 #23 on: February 15, 2023, 06:42:39 pm »
Hi read this today- mentions up to 70% retention after treatment. I have 85% in CK ear I have audiograms every year.
https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/expert-guidance-for-vestibular-schwannomas-complex-treatment-decisions/mac-20534886
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

PBFight4SB

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Re: Anyone retain quality hearing after radio surgery?
« Reply #24 on: March 10, 2023, 03:59:04 am »
Hi,

My kid had 4 surgeries, lost all hearing (has nf2) and surgeon proposed either cyberknife or proton beam therapy. we opted for proton beam therapy even though it is expensive.

One thing the senior director of radiologist told me in  Proton therapy center is hearing could have been preserved if we had done radiation in the beginning itself before surgery. the tumors of the size 5.2 cms to 3 cms but radiologist said it is still possible to treat such large tumors.