Recent Posts

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61
Cognitive/Emotional Issues / Re: Dementia/memory loss
« Last post by Joshua236 on June 09, 2026, 12:29:37 AM »
I’m really sorry to hear what you’re going through. Hearing loss in one ear doesn’t usually “deactivate” parts of the brain or directly cause memory loss, but major neurological events like acoustic neuroma surgery can sometimes have long-term effects on attention, processing, and memory depending on the individual case. It would be really important to speak with a neurologist or neuropsychologist so they can properly assess what’s going on and suggest treatments or cognitive support strategies that could help you.
62
AN Issues / Re: Another new guy...
« Last post by Mark F. on June 06, 2026, 07:20:02 AM »
Great to hear that you are doing well and that AN is not the center focus of life anymore.   That is probably the best news people can hear.  I know before my surgery, the tumor was the main focus of everything in life.   I am one year post-op and it is not nearly as much on my mind as it used to be.   Like you have said, every time something does come up the first thought is, is that tumor related or just something else like normal aging.   People at the beginning of this journey need to hear from people who are past this and moving on with life so they can know there is life after AN.  And it can still be a good life.
63
AN Issues / Re: Another new guy...
« Last post by dwilliams35 on June 04, 2026, 08:01:37 PM »
dang.  Been over a year. life has either returned to normal or I just got used to a new normal.   Noticed the other day that I have the practice of waiting a few seconds to establish balance before I put my second leg into a pair of jeans.. don’t know if that is AN residual problems or just getting old.   Hearing has stabilized somewhat, it sucks, but stable.  Again, AN or just years of shooting and other self destructive tendencies ?  Who knows.  I think I’ve got another year before my final MRI, but that’s what they said last time.   One way or another,  guys, there’s a life past all this….  you’ll be fine.   The AN is WAY down my list of concerns, or even excuses.  Life settles out and you’ll just have this as a cool story to be told over beers and whiskey with friends.  It’s okay.

Whatever you’re staring in the face for your treatment, it’s fully temporary, you’ll get through it, and will have a great story to tell people who are impressed by your beating an Intercranial tumor…It’s gonna be okay, no matter how bad you think it sucks now…. Buck up, little camper.
64
Hello
I am new to the group. I've already learned a lot and unfortunately confirmed my greatest fears. Which is the neural oncologists and other like doctors involved in radiating patients offer very little if any actual post treatment possibilities as far as issues go. Mine said a headache for a day or two and a 2% or less chance of cancer down the road but failed to say anything about what AI says which is 30% of people can get significant problems. Mine began quickly with dizziness and headaches and tinnitus and then after a month tonight is joined and then after two more months at about the 3-month point I learned a difference between dizziness and severe balance problems. At 6 months the balance problems became much worse. Now I am staggering. I've had to quit two jobs and enter full retirement at 62. I've had the steroid treatments. I've gotten a while this is rare but we do see it stuff. I went to the head of neurosurgery at NYU in Manhattan as a second opinion he said unfortunately this can happen and there's no telling whether it's going to be another month or another year. I guess I'm just looking for some Hope from someone. I had none of these problems before. I mean I would get headaches and I had a concussion 5 years ago so dizziness was in my wheelhouse like when I had covid it was headaches and dizziness so I'm vulnerable. But when I say dearly for the last 8 months, balance headaches tinnitus dizziness all of it and now anxiety and depression. Is anybody had these problems daily and is there any hope? Thank you
65
Post-Treatment / Re: Yr 8 update CK
« Last post by DanFouratt on June 03, 2026, 06:25:57 PM »
Phyllis,

20 years is awesome!  Great to heat that.  I have 17.5 more to catch up with you and I will!

Thanks for sharing,
Dan
66
Post-Treatment / Re: Yr 8 update CK
« Last post by mwatto on June 01, 2026, 06:48:55 PM »
Thanks so much Phyllis!! I am so pleased to hear how well you are going. Very reassuring!
67
Radiation / Radiosurgery / Radiation treatment in the New York City area
« Last post by barbarasalvatore on June 01, 2026, 10:46:29 AM »
I am in the process of researching the best facility to have radiation for my vestibular schwannoma.  I am located about an hour north of New York City and was wondering if anyone who has been treated with radiation in this area could share their story and recommend a Doctor and facility.
68
Pre-Treatment Options / Re: CBD
« Last post by Edenizer on June 01, 2026, 10:05:29 AM »
I%u2019ve tried CBD for nerve pain and sleep, and what helped most was sticking with products that were clean and consistent. I once ordered bulk isolate from (edited to remove link) because I wanted something pure enough to measure my doses without guessing. It made it easier to figure out what actually worked for me while keeping things affordable.
69
Post-Treatment / Re: Yr 8 update CK
« Last post by ppearl214 on June 01, 2026, 06:57:24 AM »
Dan,

Woohoo! Congratulations! Continued wellness wishes to you!

Phyllis

Thanks Dan - just thought I would post as positive! A friend of mine In Perth is also going well - we had CK at the same centre hers has shrunk also.
70
Post-Treatment / Re: Yr 8 update CK
« Last post by ppearl214 on June 01, 2026, 06:56:29 AM »
Michele,

Congratulations!!!!!!!! 

I just celebrated my..... 20... yes, 20 years post-CK for my AN. it was 1cm at time of treatment.... over time, now reduced to a 5mm blob  ;D

Just sending these good vibes to you for continued wellness! Time to celebrate!

Phyllis
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