Recent Posts

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61
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.
62
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.
63
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.
64
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
65
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)
66
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.
67
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.
68
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.
69
AN Issues / Residual tumor growing after surgery, dizziness and facial palsy feels worse
« Last post by beanboard on May 29, 2026, 01:32:04 AM »
I had surgery for a 4.5cm left sided acoustic neuroma about 4 years ago. After surgery, I was left with grade 4 facial palsy.

My most recent MRI in February showed that the residual tumor is growing, so I know I will probably need treatment soon. It's around 2.5cm now. I am looking into radiosurgery, but I am also worried about whether I may need another surgery.

For the last week or so, I have been feeling dizzy. I also feel like my left facial palsy may be getting worse, especially around my left eye. The eye feels weaker and I am getting some blurred vision. I have also been very stressed and not sleeping well recently, so I am not sure if that could be making the symptoms feel worse.

My blood tests came back normal.

I wanted to ask:

Has anyone here had residual tumor growth after surgery and then noticed more dizziness or facial weakness?

Can stress and poor sleep make existing facial palsy or dizziness feel worse?

If the tumor is near the facial nerve or brainstem, does that usually mean radiosurgery is not possible anymore? Or can Gamma Knife/CyberKnife still be used depending on tumor size and location?

For people who had regrowth after surgery, how did your doctors decide between radiosurgery and repeat surgery?

I know no one here can diagnose me, and I will be discussing this with my doctors. I am mainly looking for personal experiences and suggestions on what questions I should ask my neurosurgeon.
70
Eye Issues / Re: Post Op - Advice - can't close eye / blurry vision
« Last post by Jill Marie on May 28, 2026, 05:50:35 PM »
Hi Tyler,  It sounds like you need to find a really good eye doctor.  I saw 3 tell I was referred to a doctor that really helped me and wasn't afraid to try new things.  My left eye closes on its own abut 90% so I wear an eye patch at night.  I don't know if it would work for you if your eye doesn't close at all.  I use a couple of gauze eye patches wrapped in a Kleenex so I can just throw out the Kleenex in the morning. I put the gauze patches in a regular black patch with an elastic strap to hold it in place.  I'm not sure why they said it might irritate your eye.  It's obviously irritated already. I completely understand the eye ointment and drops not working.  I use a daily contact lens, Acuvue Oasys Hydra-Luxe.  It's different from other daily lenses because of the moisture it adds.  Unfortunately I still have to use ointment as well but not nearly as much as I did before the lens.  I had my surgery in 1992 so of course things have changed since then.  My eye was very dry and painful and the lens changed all that.  I hope you find a good eye doctor that is familiar with your issues.  My doctor specializes in contact lenses and she loves to research to see how to help people with their problems.  I hope you get some help soon.  Please let us know how you are doing!  Jill
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