ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: ngerson on January 22, 2021, 12:13:56 pm
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I was recently diagnosed with 1.2 x. 7 AN. Lost 40-60% of hearing and returned with prednisone.
I have read from others and some doctors have mentioned concerns about radiation and long term consequences.
Have any of you in the "younger population" opted for either raidation Gamma or Cyber?
If so, can you please share your experience?
Age
Size and Location?
Treatment Date?
Doctor/Facility
Treatment Type: Gamma, Cyber or Fractionated?
Side Effects
Was your hearing preserved? If so, for how long?
Tumor Control/Outcome?
Issues with balanced before or after?
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1x2 x .7 right? Mine is 1.6x1.8x1.6 diagnosed at age 59 in January of 2017 when AN was 0.8. I took Prednisone once after shoulder surgery and I turned bright red like I had a sunburn for a day and hiccuped for 24 hours. But man, if it brings back hearing I'd take it as long as possible. These surgeons want to zap my brain 3 times in 3 days but the side effects I've read about here are AWFUL! Vision, hearing, balance loss? I always read about the "middle fossa" surgery and it seems to preserve hearing for many.
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Hi Big Joe I had three session of CK two years ago and no side effects so far...!
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MWatto-----Glad to hear you are having no side effects after 2 years. I spoke to all 5 CK surgeons over past 2 years, scary stuff, especially hearing loss. But I am going for it, can't let it get bigger and have even MORE issues from the radical surgeries. TY
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Hey Big Joe - I wasnt told any scary stuff tbh - maybe just as well. I was told that I was a poor candidate for surgery - would be very long and risky. I dont know if you will go completely deaf? Certainly in some frequencies and maybe a hearing aid will help in some situations? I am not there yet - though I dont want dementia (a lot of evidence that deafness even unilaterally can contribute) so I will happily use a hearing aid over that. I am very sensitive to noise - always have been. Honestly, maybe lucky but I cant say I have had any side effects except now and again earache in night. My specialist did say my hearing will fade somewhat and since I listen to music all day I am definitely open to a hearing aid. I had three CK sessions (2cm bad location) will be three years next Feb.