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AN Issues / Newly diagnosed with vestibular schwannoma . ..
« Last post by DebraHalloweenGal on January 19, 2026, 07:43:51 PM »
Hi everyone, I just joined this site.   I had an MRI done two weeks ago and they found a schwannoma.  Never heard of such a thing.  I keep singing the song My Sharona.  Anyway, I have to get another MRI that is more detailed for the ear canal.   I have no hearing loss, but I have episodes of just falling, terrible balance, heartbeat pulse in my ear, some facial pain, and the worst vertigo.  I had a four day episodes of vertigo starting on Thanksgiving and several one hour episodes of vertigo in the morning since Thanksgiving.  It takes about a good hour every morning for me to get my balance but then I'm pretty good.   I guess I signed up here because it sounds scary and it also sounds like I'm just gonna have to live with it until it gets worse.   Sooo, when do you decide when to do something about it.   It's like, if I do something it could end up worse, if I don't do something it could end up, dare I say livable.   I can deal with pretty much all of the symptoms.  heck I don't even mind falling down.  But the vertigo is awful.   But I don't get it everyday.   I feel like I should not be worried about this because it's benign, and maybe  just let it go.  I just feel kinda numb about it.   Thanks for taking the time to read this.   Also, is anyone suffering from vertigo with this.   
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Hearing Issues / Re: Did Cros hearing aid make tinnitus worse
« Last post by RoseR on January 19, 2026, 03:32:04 PM »
I appreciate this question.  Have things improved for you?  I don't have any hearing aids yet.  But before I launch into getting any, I definitely want to know people's experience.  My AN was discovered in late November, and ten days prior I seemed to have a sudden decrease in my hearing.  I have ringing tinnitus but also the echoing of sounds in that same ear.  Whenever I use earplugs or even earmuffs or anything, the tinnitus is worse after removing them, and even my good ear is getting tinnitus from my attempts to help the tumor ear.  (I think from the physical pressure of the earmuffs and such?  Or because the good ear has to work harder?)
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Hearing Issues / Natural remedies for tinnitus?
« Last post by RoseR on January 19, 2026, 03:25:55 PM »
Hi everyone!  I see lots of alternative remedies suggested for helping with tinnitus, but some seem to be scams  :-\ . Has anyone found anything to be helpful?  I read that anecdotally, castor oil has helped some people with tinnitus.  Has anyone had experience with that? 
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For those in the 'watch and wait' status / Re: Newly diagnosed
« Last post by RoseR on January 19, 2026, 03:14:35 PM »
Dear mrgrta,

I was newly diagnosed on November 26, had my neurosurgeon appointment on Dec 17, and Gamma Knife on Jan 8.  I personally decided on quick action and could not travel (because I have an echo of sounds in my affected ear and it makes travel super loud and hard--it will take me time to rehabilitate from that symptom, but I am hopeful).  The best option in my area was Gamma Knife--with a world-renowned oncologist and 5-star neurosurgeon.  The medical care team was superb.  They said I could resume normal activities the day after the treatment, but that wasn't the case for me.  I am petite and even the fasting required for the procedure was a challenge to recover from.  I did experience vertigo and fatigue for nine days afterwards; I also may have more hearing loss, but I am back to normal energy levels and the vertigo is gone.  I will have a follow-up MRI in 3 months. Everyone's story is different, and I trust you will make the best decision for you!
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Radiation / Radiosurgery / Re: Gamma Knife Surgery Scheduled
« Last post by DanFouratt on January 14, 2026, 04:10:12 PM »
Rose,

I am glad it is behind you are you are getting better. I hope all is still getting better.  Good luck on your recovery.

Dan
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AN Issues / Pain on opposite side
« Last post by Hazel Ryding on January 13, 2026, 11:51:36 PM »
Hello, I have an AN on the right side of my head, had radio surgery 5 years ago, it shrunk, but has now grown, with a cyst. My face has gone numb on the right side, and it itches a lot. Also, I have pain on right side of my forehead and in my ear, however, last night I had the most excruciating, sharp pain on the left side of my forehead, it definitely felt like it was from the AN, anyone else experienced this?
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ANA Meetings / Patient Education Event - Virtual - February 7, 2026 - REGISTER NOW!
« Last post by Director on January 12, 2026, 01:54:11 PM »
ANA Virtual Patient Education Event
Hosted by The Ohio State University Wexner Medical Center
February 7, 2026
12:00 - 5:00 pm ET

Please make plans to attend our upcoming virtual patient education event hosted by The Ohio State University Wexner Medical Center.
Join us for a series of presentations and the opportunity to pose your questions to this expert team.

Topics include:
Treatment Options
Hearing Rehabilitation
Management of Facial Weakness, and more

All are welcome, and this is a free event, but you must register in advance.

https://anausa.org/programs/patient-event-osu

If you have questions, please contact stephanierommer@anausa.org.

Best regards,

The ANA Team




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AN Research / Re: How many surgeries are performed per year in US?
« Last post by ppearl214 on January 12, 2026, 01:41:25 PM »
Hi Jen, in checking with the ANA regarding your question, tracking the number of people diagnosed per year is easier than tracking number of surgeries.  Please remember that ChatGPT and other AI forms of information are not reliable.  I think individual surgical institutions (too many to count) would need to supply from their own in-house database.
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AN Research / Re: How many surgeries are performed per year in US?
« Last post by MarlaB on January 12, 2026, 01:39:50 PM »
ANA doesn't track this information -Forum Moderator
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AN Issues / Re: How many surgeries are performed per year in US?
« Last post by ppearl214 on January 12, 2026, 01:37:55 PM »
Hi Jen and welcome.  We try to avoid same topic in multiple locations on the discussion forums. In an effort to help, I am "locking" this topic discussion and keeping the one in AN Research since this is a research-type question. Thank you for your understanding. Phyllis
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