Recent Posts

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1
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.
2
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
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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!
4
Pre-Treatment Options / Re: CBD
« Last post by Edenizer on June 01, 2026, 10:05:29 AM »
I’ve tried CBD for nerve pain and sleep, and it helped a bit with relaxing and cutting the edge off. I just started slow, checked for interactions, and watched how my body reacted.
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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

Quote from: mwatto on May 23, 2026, 10:41:32 PM
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.
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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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Inquiries / Re: Looking for AN Patients who have had an organ transplant
« Last post by ppearl214 on June 01, 2026, 06:51:38 AM »
Hi Leah,

Great to see you here!  Hoping others chime in.  Also, try doing a "search" here as you may find info there as well.

Welcome!
Phyllis (from last week's Zoom discussion)
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Inquiries / Re: Handicap placard
« Last post by hellothere on May 31, 2026, 05:28:53 PM »
Sorry it took a year to get a reply but here is the answer:  Yes, you can get one from your Primary care physician.  They should have a form that you take to the BMV.  Just make sure that they have the latest version of the form.
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Inquiries / Looking for AN Patients who have had an organ transplant
« Last post by LeahJ on May 30, 2026, 06:59:58 PM »
In addition to being diagnosed with an acoustic neuroma earlier this spring, I have had chronic kidney disease for 38 years.  I just got listed for transplant this month. I need to get the neuroma taken care of before they will transplant.

Are there any patients out there who have had a transplant (preferably kidney, but at this point, I'll talk to ANY transplantee)? I am particularly interested in hearing from people who had AN surgery in the year or so before transplant, but also interested in hearing from people who have gone through surgery post transplant.

Thank you.
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Inquiries / Re: concerned about AN
« Last post by Bufoeal on May 30, 2026, 02:24:43 AM »
Quote from: druidul34 on August 13, 2025, 10:06:56 AM
Hey

With all due respect for all people around here stuggling with AN, I need to ask some questions.

I have one-sided tinnitus, right ear.
High-pitched.
Went to ENT - he said normal hearing, but advised for MRI, due to asymmetrical hearing loss.

I don't feel my hearing is worse on the right side though.

No other symptoms.

Few details :

 - it began 3 months ago or at least at that time I became aware of it.
 - I had some nights with poor sleep at work, someone yelled at me, from close range (I work in a hospital)
 - I don't know, whether is my brain, who wants me believe, its not only on the right ear, but sometimes I feel it more centered and I get transient tinnitus on left ear as well, but it's no doubt, much more clear and present on the right ear.
 - when I had audiogram, fnf it was after 4 hrs sleep and my tinnitus was pretty loud and I made some guessing, I remember.

I attach my audiogram.

Is it really so big the asymmetrical hearing? Is a rather big fall at 4Hz. no? I see left ear at 8Hz at 5 dB then plunges to 30 dB at 8Hz?

I am very afraid of acoustic neuroma, despite low probability?
Honestly, your ENT recommending an MRI for one sided tinnitus is pretty standard and doesn’t automatically mean they strongly suspect an acoustic neuroma. A mild asymmetry at high frequencies is actually fairly common, especially after noise exposure or poor sleep, and your lack of balance problems or noticeable progressive hearing loss is reassuring.
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