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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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Post-Treatment / Re: Befriend me before GK this week – VS + meningioma, looking for RS recovery
« Last post by Viva on March 08, 2026, 06:46:52 PM »
Just adding that even short experiences would really help me, especially about the first week after Gamma Knife.

If anyone remembers what symptoms showed up in the first few days, I’d really appreciate hearing about it. I’m trying to understand what’s normal vs what should trigger a call to the doctor.

Also very interested in hearing from anyone who had more than one tumor.
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Post-Treatment / Befriend me before GK this week – VS + meningioma, looking for RS recovery
« Last post by Viva on March 08, 2026, 06:44:16 PM »
Hi everyone,

After months of reading this forum quietly, I finally decided to post, my Gamma Knife radiosurgery is scheduled for this week.

I’m 48 years old and was diagnosed with an 18 × 11 mm vestibular schwannoma on the left side.

My symptoms so far are fairly mild:

Serviceable hearing

Left-side tinnitus (about 2 years)

Very mild dizziness when turning my head quickly

During imaging they also found an incidental 4 mm petroclival meningioma on the right, close to the trigeminal porus.

I’ll be tested for NF2 in June, although Dr. Slattery at House Ear Clinic told me he does not think this is NF2.

I feel comfortable with the treatment decision, but I would really appreciate hearing from people who have already gone through single-dose radiosurgery for vestibular schwannoma.

A few questions for those who have been through it:

What symptoms did you experience in the first days or weeks after treatment?

Which symptoms are common and expected after radiosurgery?

Which symptoms are NOT common and should trigger a call to the doctor or urgent care?

How long did it take before you started feeling normal again?

Any tips for the first few weeks of recovery (fatigue, dizziness, activity level, steroids, etc.)?

If you had serviceable hearing before treatment, were you able to preserve it long term?

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.

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

Thank you in advance — this forum has already helped me a lot just by reading everyone’s stories.
Diagnosed 10/2025
18x11 mm VS left side; right 4mm incidental petroclival meningioma close to trigeminal porus
GK scheduled this week @ University of Miami
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Hearing Issues / Re: Lipreading: Are online courses worth the cost?
« Last post by ArchieLesina on February 12, 2026, 08:58:14 AM »
Keep us updated.
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Radiation / Radiosurgery / Re: Can/Does Radiosurgery reduce dizziness/disequilibrium?
« Last post by scardol on February 12, 2026, 08:06:27 AM »
This is something I've been wanting to know more about, but there's not as much info on disequilibrium around vestibular schwannomas in terms of side effects as there are with hearing loss or facial paralysis - perhaps because it's more subjective and harder to mathematically measure and quantify?  For myself, this was the primary reason my was discovered. Medical records going back three years for me cite my mentioning dizziness/lightheadedness, etc at drs visits. Def not stress, for there's not much that works me up. Kept having bloodwork done and they never found anything, I don't drink or smoke, and I did the usual of limiting caffeine, monitoring hydration, sleep, etc. Even was sent to see cardiologists (EKGs, heart ultrasounds, etc) because it was thought that maybe the issue was circulatory. No issues there.  Couldn't find the culprit until I postulated whether I could have an undiagnosed concussion, since I get hit or kicked in the head frequently as an occasional consequence of my recreational lifestyle and that requested MRI found the VS.

Visits to the neuro-otologist and neurosurgeon all center around weighing hearing loss and facial muscle complications when discussing treatment.  And I get that, for hearing loss is what brings the vast majority of VS patients to them. I want to consider the treatment that would have the greater odds of reducing my disequilibrium state to what it was five years ago, before I started going to the doctor over the sensation of what feels like walking on the bow of a small boat that's being rocked by ocean waves, despite no visual input to complement this full body feeling.

I have no answers - only to convey that you're not alone in this quest, though from what I too have been able to glean from digging around in the ANA forum, I think we are in the minority, for it seems like for most, overwhelming disequilibrium is not the most predominant side effect pre-surgery for most
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Hearing Issues / Re: Lipreading: Are online courses worth the cost?
« Last post by MaryaC on February 10, 2026, 05:37:28 PM »
I haven't  been on the discussion forum in a while so just seeing this now. I'll see if I can find something in the Philly area. Thanks for the feedback! :)
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Radiation / Radiosurgery / Re: Regrowth AFTER radiosurgery
« Last post by mwatto on February 04, 2026, 12:43:41 AM »
On the video in the web library Dr Chang says the first 5 years can show pseudoprogression. It might be worth your while to get a second opinion or wait a bit longer since that is still very small. I recall a past member Paul Wellen having 'growth' at 3 years after radiation but it was not and it reduced again after he waited a few years on advice from his Munich specialist.
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Post-Treatment / Re: Any success stories and positive experiences with AN surgery?
« Last post by mikeo on January 30, 2026, 01:40:33 AM »
I had a ~3cm left-side VS that was removed using retrosigmoid surgery in South Africa (home country) on 21 October 2025. So I'm still very "fresh" post-treatment. Overall I've been very lucky with my recovery and consider the treatment to be a great success.

I'm a 40 year old male with a very active lifestyle (running, mtb, surfing, climbing), a busy job (academia) and a young family (2 daughters < 5 yo). The first week after surgery was quite rough but things improved rapidly after that. I took the first month very easy (easier than I felt I needed to) to make sure I gave myself time to heal. I walked daily, sometimes for only a 15minutes or so, sometimes for a few hours. I tried a little challenge most days (e.g. riding my bike after 2 weeks, balancing with eyes closed etc.) and was constantly surprised at what I could do each time. At this stage my balance has recovered sufficiently for me to do most of the sport and activities I was involved in pre-treatment at the same level.  I wonder if I had done a fair amount of vestibular compensation pre-treatment?

I experienced some facial nerve damage that is the only noticeable persistent post-treatment irritation (eye doesn't close properly yet which limits me in some ways but is manageable) but I'm seeing improvement and am optimistic about a full recovery.

This is anecdotal and yet to be stress-tested over time but my mental state is significantly altered post-surgery. I don't know if it could have to do with changes in pressure on my brain (my tumour was displacing my brain stem significantly)? Regardless, my average state of agitation and stress seems quite different even now that I'm back into full workload etc.

Anyhow, I feel very lucky and am grateful to the surgeons and for my health. The whole experience was a big shakeup but ultimately positive in hindsight. I appreciate that I can say this because I've recovered well so far and that this is not everyone's experience.
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AN Issues / Re: Newly diagnosed with vestibular schwannoma . ..
« Last post by DanFouratt on January 27, 2026, 02:28:44 PM »
Rose,

Thanks for sharing and good luck on your recovery. 

Dan
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AN Issues / Re: Newly diagnosed with vestibular schwannoma . ..
« Last post by RoseR 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. 
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