Author Topic: Newly diagnosed with vestibular schwannoma . ..  (Read 353 times)

DebraHalloweenGal

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Newly diagnosed with vestibular schwannoma . ..
« 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.   
« Last Edit: January 19, 2026, 07:45:32 PM by DebraHalloweenGal »

Mark F.

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Re: Newly diagnosed with vestibular schwannoma . ..
« Reply #1 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.

MarlaB

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Re: Newly diagnosed with vestibular schwannoma . ..
« Reply #2 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


DanFouratt

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Re: Newly diagnosed with vestibular schwannoma . ..
« Reply #3 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



Dan Fouratt             65 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23            
MRI 6/14/24            7mm x 12 mm

RoseR

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Re: Newly diagnosed with vestibular schwannoma . ..
« Reply #4 on: January 26, 2026, 01:38:20 PM »
Hello, Debra!  I am also new to the ANA journey.  Mine was discovered the day before Thanksgiving via MRI.  I had the MRI because of hearing loss, "echoacusis" I guess it's called, pulsatile tinnitus (which changed to ringing and now I have both), and vertigo. For me, the vertigo began Nov 6, peaked Nov 12, then subsided.  I opted for quick action because I didn't want facial paralysis (and that side had the novacaine feel about it) or headaches or the other symptoms to eventually kick in.  Because the echoacusis makes it hard to deal with all the noise of travel, I opted to stay local for treatment.  We have an excellent cancer center in the area, and they excel at radiation.  In fact, my neurosurgeon at that center is actually excellent at brain surgeries, but he didn't recommend surgery for me, as it carried too many risks.  I had Gamma Knife radiation treatment January 8.  At first, I experienced vertigo and more hearing loss right afterwards, but both seem to have corrected themselves.  I learned some tricks to help with vertigo (and accompanying nausea)--so I share in case you are open to natural helps:  ginger, peppermint, taking in (mostly cold) fluids only by little sips rather than drinking huge amounts at once; resting/sleeping with my head elevated; Vitamin C; taking a cane along on vertigo-feeling days "just in case." I will have a follow-up MRI in April.  I agree with what Mark and Dan have said--the decision is yours; what seems right to you FOR you--in my case, if I may say, prayer helped a lot, and certain circumstances pointing towards the direction I took.  Wishing you the best!  I am glad you (and I!) found this community. 

DanFouratt

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Re: Newly diagnosed with vestibular schwannoma . ..
« Reply #5 on: January 27, 2026, 02:28:44 PM »
Rose,

Thanks for sharing and good luck on your recovery. 

Dan
Dan Fouratt             65 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23            
MRI 6/14/24            7mm x 12 mm