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Post-Treatment / Re: Befriend me before GK this week – VS + meningioma, looking for RS recovery
« Last post by Viva on March 24, 2026, 02:55:32 PM »
Thank you so much for taking the time to reply to my post. I truly appreciate your support and insight.

I also wanted to share that I’ve now completed GK treatment. Reading through posts from others in the ANA community, including thoughtful replies like yours, has meant more to me than I can fully express. From the moment I was diagnosed through treatment, this community helped me educate myself, explore the best medical options, and feel supported during some of the most difficult moments.

Your willingness to share and respond makes a real difference for people like me. Thank you again for being part of that support system.

Diagnosed 10/2025
18x11 mm VS left side; right 4mm incidental petroclival meningioma close to trigeminal porus.
GK for VS @ University of Miami 3/2026
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Post-Treatment / Re: Befriend me before GK this week – VS + meningioma, looking for RS recovery
« Last post by mwatto on March 22, 2026, 12:18:35 AM »
I had CK 7 years ago. Had my annual audiology test done and my hearing remains exactly the same as 7 years ago. Its still stable. Report said speech discrimination even at soft volume is excellent and no need as yet anyway for hearing aid in that ear. I do wear earplugs when we are going somewhere noisy as I remain acutely sensitive to noise (all my life this). An interesting aside- I have had no ear wax in that ear since CK - I was very puzzled by this and it turns out- well according to Chat GPT that it is a side effect. The audiologist said not to worry re it.
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Inquiries / Re: Mayo for Treatment/s
« Last post by Lesliereynolds on March 20, 2026, 05:29:57 PM »
Yes I chose to have rectosigmoid approach surgery with Michael Link, MD and team. I traveled from Michigan.  I chose Mayo clinic because I trusted them, their data was very good as far as outcome.  I am a medical doctor and pediatrician so i realize that the speed for me to digest the information and make a decision was likely fast compared to someone without medical experience. I hope that this forum will help you as i found it to be a valuable resource.  Mayo Clinic in Rochester had what I was looking for: an experienced team, neuro intensive care unit for aftercare during the critical first 24 hours, and always answered my questions honestly, even tough ones. 
The surgery was hard on my body and recovery has been slow but steady.  I advise a team at your home to include a doctor of osteopathy  and physical therapist skilled in craniosacral therapy and brain rehab, an audiologist, and neuro optometrist (glasses with prisms have completely stopped the jiggling when moving my head from side to side and taught my brain a new relationship with gravity). I am now 8 mos. post op.   As of this month, a new skill is keeping balance with my eyes closed and stepping backward, so I have returned to dance lessons and joy.  Surgery is shocking and painful, recovery is slow and steady, accepting being the BEST in this body is a long path.  Contact me if you want to ask questions. 
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Post-Treatment / Re: Befriend me before GK this week – VS + meningioma, looking for RS recovery
« Last post by DanFouratt on March 18, 2026, 10:51:53 AM »
I hope you are doing well.  Good Luck.

Dan
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Inquiries / Re: Bells Palsy and acoustic neuroma
« Last post by arisepeanuts on March 12, 2026, 02:46:41 AM »
Bell’s palsy is usually caused by sudden inflammation of the facial nerve (cranial nerve VII), which may be associated with a viral infection. In contrast, an acoustic neuroma (vestibular schwannoma) is a benign tumor that develops on the vestibulocochlear nerve (cranial nerve VIII) and can compress the facial nerve as it grows larger.

In your case, having Bell’s palsy on the right side and then discovering a nerve tumor on the left side 10 years later suggests that these may be two separate events, since they occurred on different sides. However, having had facial nerve problems in the past may make you more sensitive to—or more likely to recognize early—the signs of an acoustic neuroma, such as hearing loss or dizziness.
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Microsurgical Options / Re: Intralabyrinthine schwannoma
« Last post by Mark F. on March 10, 2026, 08:17:02 PM »
Well I didn't see this post earlier, probably because it was before my surgery.  I had surgery on May 13th 2025.  Before my surgery my balance was horrible, also had the dizziness you refer to.  Mine was left side not right, like sleestak.  But I am living proof that you can return to nearly normal after surgery.  With effort on your part the road may not be as long as you might think .  I went from walking like a drunk toddler a week after surgery as I described it to posting my own personal  best time in the Turkey Trot 5k in only 6 months, after not being able to run at all for the year prior to surgery due to the balance and dizziness.  Now I am single side deaf, but that is the only thing that hasn't returned to normal for me now and I am just about to hit 10 months post op later this week.  Best advice I can give you is be as active as possible up till surgery.  I walked on a treadmill with handrails when my balance wouldn't let me run.  And walk as much and as often after surgery as you can because the more you walk the better your balance gets.  The balance nerve on the other side learns how to compensate.
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Microsurgical Options / Re: Intralabyrinthine schwannoma
« Last post by sleestak on March 10, 2026, 02:00:29 PM »
      Good news - I actually have an intralabyrinth schwannoma. Bad news - there aren't many of us and I had a hard time finding anyone who experienced this the way we do.

      I started out in a similar fashion. Deafness came first, then the dizziness as it encroached on my vestibule and balance center. The docs kept me on watch and wait because they said that in these cases it is unlikely for the tumor to go "outside the box" and onto the nerve. I eventually progressed to the point where my dizziness came in varying degrees:
      • mild
      • moderate
      • strong - drunken sailor. Where I couldn't walk straight
    • Full blown vertigo

    Things like the barometric pressure shifting could increase this dizziness and even push me into vertigo. In cases where vertigo starts becomming a reality, I started carrying an emergency kit of Bonine (chewable Meclazine), Zofran (anti-naseau), and some ginger gum (also anti-nausea). I found I could fit this in a contact lense case that I cut in half so it was small and fit in my coin pocket. 

    If symptoms gets really bad, esp vertigo, find a spot to sit and prop yourself up. Close your eyes and picture an imaginary spot in the darkness and fix your eyes on it. It will help resteady yourself. Then pop a meclazine and find a spot in the room to stay focused on for a while. Trust me when I say I am now a pro at this. Dealt with this dizziness and vertigo for years.

    FINALLY, it came to a point where the tumor did grow out onto the auditory nerve and this Thursday I have surgery.

    OPTIONS:
    • First is watch and wait.
    • Radiation - This was offered to me by the doc I was seeing, but I have read many places that its common for the tumor to grow before dying and shrinking back. I wondered what kind of vestibular ride that would take me on and it's not 100% that it will work. I also spoke to one of my vestibular therapists who had been in practice for about 18yrs - they are the ones who see the aftermath. She had mentioned she had seen better results with surgical resection.
    • Surgical resection - I reached out to the House Clinic, who said they could open up the cochlea and remove the tumor and then give me a cochlear implant and seal it all off.  I think reached out to the infamous Dr. Friedman who said right off, "If anyone tells you they can give you a cochlear implant, run for the hills." What he told me is that in my case the damage was done and by going into the cochlea and trying to pick it clean, more damage would be done. The end result of a cochlear would be really bad hearing, not worth it.  I was already confortable with my deafness anyways.  His suggestion is the route I am going: full resection of the inner ear structures. I went to the university hospital here in CO and asked them what they would do (not telling them what others had said), and when they matched what Friendman had said, I knew I found my guys. They also get good reviews/results for AN surgery.

      Basically, I am never going to hear again and recent balance tests have shown that I have lost pretty much all of my balance function on my right side. So they are going to remove everything, leaving just the severed vestibular and auditory nerves. This will also include removing my eardrum, bones and ear canal since they aren't needed anymore.

    This is probably a lot to think about and accept. But know that I do still have decent balance with my right side shot, I just get increased dizziness if I am moving around a lot or bouncing about.

    EXPECTED PROGNOSIS (for me):
    They believe that the dizziness I am experiencing is due to a crappy signal from my affected side. It causes confusion to my brain and by removing it all, I will be left with one clear signal from my good side, resulting in no more dizziness. Tinnitus has a very good chance of lessening or going away, also possible it will remain, very minimal chance it will get louder. Tinnitus is a tough one because they still don't know a lot about it. It can derrive from two areas: damaged cochlea or auditory cortex. Most likely mine (and yours) is coming from the damage in the cochlea.

    ---------------

    Sorry so long, but I wanted to share whatever I could because I know our cases are even more rare than your typical AN. You will be hard-pressed to find many out there on FB, Reddit, or here that have or have had them....I found one other over the years and now you.

    MY $.02 - Get your MRI and records together and reaching out to Dr. Friendman. He does a free consult and will give you his recommendation. If you want a second, talk to the House Clinic, they will do the same. I put more weight on Friedman because he has a LOT of experience with these and knows a lot about them.

    Lastly, KEEP MOVING / ACTIVE on the days you aren't stumbling around...even on mildly dizzy days. Even just walking or working out. It matters. Even with my loss of balance function, I am able to ride a bike and snowboard. Once surgery is done, my recovery should be MUCH easier because I kept active while I was loosing my balance....it kept my brain adjusting.
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Post-Treatment / Re: Befriend me before GK this week – VS + meningioma, looking for RS recovery
« Last post by DanFouratt on March 10, 2026, 12:16:04 PM »
Viva,  I too had was a one and done - CK at UNC.  If you want to talk please call 336-264-9238. 

What symptoms did you experience in the first days or weeks after treatment?
I was a lucky one I had none.  The day of the procedure I went home a rested but was able to get up and BBQ that night.  Only one time did I experience any issues.  I stood up and know I had to sit down but that was really a passing event.  I have heard of fatigue and a little brain fog happening after treatment.  The next day I drove 2.5 hours one way to pick up a gift for my son.  I guess I was a little effective as my wife talked me in to shoe shopping with her at the mall in Charlotte 😉.  It was a nice 3+ mile walk which was good for me.  I then drove home. I played golf (walking 18 holes) 96 hours after treatment.  The first swing was rough but I enjoyed the day.

Which symptoms are common and expected after radiosurgery?
I have heard of fatigue and a little brain fog happening after treatment.  There is also dizziness and other little things we AN warriors deal with. Some loss of energy.  I am not a doctor but these appear to be more common for multi treatments then the one and done.

Which symptoms are NOT common and should trigger a call to the doctor or urgent care?
Again, I am not a doctor but I would guess anything bleeding would be a big red flag. Anything you consider abnormal would be cause. We need to be our own advocates. I was talking with someone going through a different issue. I suggest to her to find a group.  I said to her the big advantage to the group you can start a quest with “Has anyone ever….” And usually get an answer quickly.

How long did it take before you started feeling normal again?
Several weeks after my tinnitus got alot worse and my head felt fuller.  I called the doctor and it was written off to tumor swelling and it would pass - it did. Other then that this process was went smoothly.

Any tips for the first few weeks of recovery (fatigue, dizziness, activity level, steroids, etc.)? 
First, I did not do steroids. In the discovery process steroids were prescribed to solve the problem, I did not like them at all.  All the above could be present in your recovery.  I had OHS six months after CK.  The one thing that group talks about is listening to your body it will tell you what you can and cannot do.  With CK there was little I could not do. However, recovering from OHS there was times my body said enough.

If you had serviceable hearing before treatment, were you able to preserve it long term?
That shipped sailed on me prior to treatment for me.

Also, if anyone here has dealt with two tumors at the same time (like a vestibular schwannoma plus a meningioma), hearing about your journey would be especially helpful for me.
No I only had the VS.

I’d really value hearing your experiences and anything you wish someone had told you before or after treatment.


First and you know this you are not alone and we are here to support you on your journey.  I was serious if you need to talk please reach out.  I had someone call from the hospital with last minute jitters. They were five time zones away from where I was at that time so my wife laughed at me but understands.  MRI follow ups are open subject.  Again I am not a doctor.  I know doctors who want to do it every three months after radiation.   With my OHS surgery getting in the way I have only done one follow up in 28 months. I have one scheduled for next month.  I also do the MRI without contrast.

Thank you in advance — this forum has already helped me a lot just by reading everyone’s stories
If you have any other questions you have my phone number above, my email is Dan4att@gmail.com or this forum.  I will be sure to check often over the next couple of weeks.

Good luck on your journey,

Dan
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Post-Treatment / Re: Befriend me before GK this week – VS + meningioma, looking for RS recovery
« Last post by Mark F. on March 09, 2026, 05:25:11 PM »
Sorry I went the surgical route, but I will be thinking about you this week.  Good luck with the procedure, and I hope it all works out well for you.   Don't be alarmed if it grows first, I understand that happens before it shrinks with gamma knife.   
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NF2 / Re: One AN and one meningioma
« Last post by Viva on March 08, 2026, 07:27:34 PM »
Hi Elena,
I’m 48 and was diagnosed with a vestibular schwannoma (VS) on my left side, measuring 18×11 mm, and an incidental 4 mm petroclival meningioma on the right side near the porus of the trigeminal nerve. I’m going to be tested for NF2 in June, although Dr. Stattery thinks I’m not NF2. Did you take the test for NF2? do you have any family history of hearing loss or NF2?
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