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AN Issues / Re: Newly diagnosed with vestibular schwannoma . ..
« Last post by DanFouratt on January 20, 2026, 12:54:52 PM »
This is the Dan my friend Mark F mentioned. First welcome to the club, you will find people here are great and want to help each other. I was the opposite of you, hearing loss and tinnitus was how my VS said "HI".  The decision to leave watch and wait is personal, only you can make it. I stayed in WAW for several years. The tumor grew one reading and my decision was to address it.  I could live with the symptoms I had and I did not want them to get worse.  I used the word I for a reason, my doctor did not make the decision, it was mine.  This is the one medical issue the patient has the say in what is done and when.  My surgery was going to be 7 months post decision - no hurry.  Long story short is I quit/retired in June 2023 and focused on this issue.  I had surgery penciled in for July.  Saw my ENT late June and he did not pencil it in and it was rescheduled for September 2023.  After that, according to my wife, I became obsessed with researching this tumor and spent many hours looking in to it.  At the end of that journey, considering my situation (age 62, small tumor, sitting nice for one and done radiation, life out look and many more) I decided to go radiation.  It was best for me.  My ENT was not happy but was part of the radiation treatment team. I share this comment from one of the many doctors I talked to, "No decision is a bad decision, make the decision you are comfortable with and move forward, do not second guess yourself."  If you want my research please reach out to Dan4att@gmail.com. For me the treatment was a none event and I moved on with life.

Unlike Mark, 6 months and 5 days after treatment I was rolled in to the operating room for a little open heart surgery.  That aside I was walking 5K plus with in a week of surgery.

Good luck on your journey and it is your journey to make.  Reach out if you have any questions or just need to express yourself.

Dan



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AN Issues / Re: Newly diagnosed with vestibular schwannoma . ..
« Last post by MarlaB on January 20, 2026, 10:55:51 AM »
Ditto about this club...BTW, this was created by another member. This is not really an answer to any of your questions, but it did remind me of this...

It's a YouTube of his parody song you mentioned that was made for fun only SIXTEEN YEARS AGO!  https://youtu.be/52yucjy_Q8s?si=ueWXDoXugthxLREw

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AN Issues / Re: Newly diagnosed with vestibular schwannoma . ..
« Last post by Mark F. on January 20, 2026, 10:19:08 AM »
Couple things.  First welcome to club nobody wants to be in.   To answer a few of your questions, I had vertigo bad, balance was terrible.  I work as an electrician and I actually fell of the ladder a couple times. Do not accept that this how life will be.   Your first step is to determine if it's growing or not.   If it's not growing you would probably benefit quite a bit from Vestibular therapy.   I didn't because growth made it a constantly changing target.  If it is growing or symptoms keep changing then you need to do something, it is only a matter of time until you hurt yourself from a fall.  I also developed swallowing problems, so choking became a real concern.  Now what you do is entirely up to you.  I did the surgery, Dan on here did the radiation.  We both had great results.   Do your research, weigh the side effects and pick which is most comfortable for you and stick with it. Don't let anyone, even the doctors, change the direction you want to go in.   You didn't mention age or activity level.  But I will tell you the best thing I did was stay as active as possible.  I was a runner and I ran as long as I could, and when my balance didn't allow for it outside, I used a treadmill with handrails, and when it got to where that was even a problem, I walked a lot.  I truly believe that staying active helps with the recovery process dramatically.  6 months after my surgery I running a 5k again and I was 56 years old.  You are in the scary part right now.  Right after diagnosis, all the uncertainty and stress.  It does take a toll on your mental health as well.  Focus as much as possible on what you can still do and not on what you can't.
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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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Eye Issues / Re: Changes in optic nerve?
« Last post by stevehernes on January 16, 2026, 03:51:49 PM »
how are you doing now?
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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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ANA Meetings / Patient Education Event - Virtual - January 24, 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
January 24, 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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