ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: hollo321 on October 23, 2023, 04:47:15 pm
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hey debating retrosig surgery or fractionated radiation for my 1.7cm an and getting conflicting answers from doctors based on their specialty. i still have good hearing in affected which wanna preserve.
in general between the surgery and radiation which has higher success rate of preserving long term hearing?
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My AN was just under 2 CM. Had fractionated CK almost 5 years ago (next feb). My hearing is measured every year- I have all the audiology reports. My AN ear remains at close to 90%. I listen to music all day. My other ear 95%. I am almost 63 years old. My balance is fine- I power walk every day and barely have tinnitus. Worth watching some of the good videos in the AN library. I do work on keeping inflammation low and avoiding ototoxic medications.
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My AN was just under 2 CM. Had fractionated CK almost 5 years ago (next feb). My hearing is measured every year- I have all the audiology reports. My AN ear remains at close to 90%. I listen to music all day. My other ear 95%. I am almost 63 years old. My balance is fine- I power walk every day and barely have tinnitus. Worth watching some of the good videos in the AN library. I do work on keeping inflammation low and avoiding ototoxic medications.
thats great to hear, curious since you have almost perfect hearing what caused you to get diagnosed? and what things you do to keep inflammation low? and where did you get the CK done? if gonna do want to do with best team can find
thanks
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Hi I basically diagnosed myself! I had earache on right side for abt two years- doctor/s, dentist etc said was TMJ - so in the end after googling and saying what if its this- after being given antibiotics etc etc I was referred to an audiologist and she said something maybe pressing on nerve as your ears healthy. Then ENT (who retired that same week and I never saw another one) he also said I doubt its an AN I think its TMJ - healthy ears. Then MRI revealed it WAS an AN - doctor said I am gobsmacked you were right. Any event I then googled what to do- saw the options- and first specialist was 5 D Cyberknife one suburb up- first visit very experienced Professor said lucky you saw me would have been a risky operation where it is and very long at least 14 hrs - and you are an idealcandidate for CK. Had it done that week. I was severely traumatised by then. In retrospect I panicked. I had no side effects and realy the only info I had was from another member here Paul Wellens. So I have yearly no contrast MRIs and audiology reports-and post my stats here. Hearing and balance is fine so far. I have no tinnitus either. What does make me very anxious is radiation induced late effects . I play chess every single day online and offline, live a healthy lifestyle etc I still stress every time I get a stab of pain in ear- but funny thing is it WAS TMJ after all - now have a dental splint for that and the deep pain has stopped.
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mwatto, I noticed you do non contrast MRI vs contrast. I am just starting my life long MRI and my doctor always recommends contrast. do you know the difference? I made the decision not to have surgery and went with CK this fall. I have my first follow up MRI in the spring.
Thanks
Dan
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Hi Dan I had contrast for initial treatment. After that since just tracking every year I asked for no contrast- with the proviso if they see anything unusual I will return and get contrast. These days the technology is outstanding- my MRI reports are very detailed (I also keep a copy to read on aspects myself with deeper reading and to prepare questions on)- eg the first one I asked for info on the two cysts- turns out they disappeared. This last one in March I asked for them to also look at the trigeminal nerve as I had been getting stabbing pain - all good. Yeah if I were to ever have contrast again I would first have my kidneys checked, would be very hydrated, ask for the lowest dose and then take tiny bit NAC after. Also I would ask for a saline flush. I dont like what I read about contrast as inflammatory and possible accumulation - especially in the context of a AN. I work to keep neuro inflammation in check because I have read that growth is a response sometimes to COX2 expression. Not easy with virusses as it is, stress, poor sleep, environment. Every supplement I take - I google on AN, inflammation etc. I look at studies where I can and am actively involved in my health as I age.
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Michele, thank you for a very complete answer. You gave me some things to think about. Good luck on your journey.
Thanks,
Dan
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Sure Dan. I think what got me thinking is time I spent on a forum for gadolinium and I learned a lot...some issues were being caused from the contrast itself. I do know if your kidneys are healthy with good EGFr then elimination is better- though over the years there may still be residual traces. I just dont want this- I have enough going on I feel. Contrast can damage kidneys too. I read last night that post contrast the taurine and NAC may help a bit and hydration. My MRI provider agrees that unless I really have to eg diagnostic not just tracking then best not to and my specialist agrees.