ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: drumfest on January 11, 2023, 07:40:03 pm
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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
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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.
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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
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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.
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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
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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=y5e1kQUhu78)
https://www.youtube.com/watch?v=Qv91jUc5Q68 (https://www.youtube.com/watch?v=Qv91jUc5Q68)
https://www.youtube.com/watch?v=AARWUgl80LA (https://www.youtube.com/watch?v=AARWUgl80LA)
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donjehle, Thank You for the video links!!! d
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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).
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donjehle, The videos were extremely helpful! I enjoyed Dr Chang's take on CK treatment.
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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
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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.
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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.
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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
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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.
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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.
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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
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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!
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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?
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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
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Rich thats really reassuring!
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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.
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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.
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Rupert, Thank you very much for your post! All of your thoughts are helpful. d
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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
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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.