Recent Posts

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Radiation / Radiosurgery / Re: Radiation for fast-growing tumor?
« Last post by RGG on August 07, 2026, 05:35:46 PM »
Hi all, I'm now 2 years post gamma knife, and freaking out a bit...

At the time of gamma knife, my tumor was about 1.5 * 0.8 * 0.8 (about half a cubic cm).  Six months later there was some swelling that was not unexpected, to about 1.6 x 1.1 * 1.0.  At my 1 year MRI, the size was stable, so I thought that was a good sign.  Now at 2 years, it grew again to 1.8 * 1.5 * 1.2.  I think that's around 3 times volume increase in 2 years.... Does anyone think this can still be swelling?  I worry that by the time they decide it's treatment failure, it's going to grow a lot more.

On top of everything, my latest MRI shows I have a small (<1 cm) meningioma, so now I'm freaked about about NF2 and more surgery.
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Post-Treatment / Re: 17 post treatment. Surgery and gamma knife.
« Last post by mwatto on August 05, 2026, 01:59:49 AM »
I have some geniculate nerve pain 8 years post CK - put into chatgpt and it had an interesting answer re fibrosis, scarring and nerve sensitisation/ irritation long term as a side efffect. Since my MRI this year was good I think maybe it is just this. I find medical CBD (Humacology brand in Australia) helps as does magnesium and PEA. Even very low dose 0.5 melatonin seems to help as does sleep. I guess the only way to know whats going on is an MRI though.
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Post-Treatment / 17 post treatment. Surgery and gamma knife.
« Last post by Louise UK on July 31, 2026, 07:27:28 AM »
Hi. Has anyone had surgery and gamma knife over 15 years ago, then 15 or so years later had some tingling in their cheek or some other symptom? Did you then have an MRI to check things and everything was stable or perhaps not? Thanks.
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Hearing Issues / Re: Noise cancellation
« Last post by StevaHong on July 31, 2026, 04:47:10 AM »
One thing that helped me was adding some steady background sound, especially at night - it made the environment feel less distracting. If you don't already have something you like, I've used https://noisebg.com/ for white noise and ambient sounds, but any similar app or website works too. Hope you find something that gives you a bit of relief.
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Insurance / Re: Disability Insurance
« Last post by StevaHong on July 31, 2026, 12:19:40 AM »
Disability insurance is definitely worth looking into, especially if your income depends on being able to work. A lot of people focus on life insurance but forget that a temporary illness or injury can have just as much financial impact. It's always a good idea to compare waiting periods, benefit amounts, and policy exclusions before choosing one.
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Radiation / Radiosurgery / Re: Radiation treatment in the New York City area
« Last post by barbarasalvatore on July 30, 2026, 08:21:14 AM »
Thank you so much for your reply.  After much research and because of my age, I decided to go with Gamma Knife, and had the procedure done yesterday at The Valley Gamma Knife Center in Paramus, New Jersey, with neurosurgeon Dr. Rupa Juthani and Radiation Onocologist Dr. Chad DeYoung.  I couldn't be happier with the experience.  They were able to treat 95-98% of the tumor and were still able to preserve the hearing I had left in that ear even though they warned me that because my tumor was located very close to my cochlear I might lose all the hearing in that ear.  I am located in Cortlandt Manor, so the trip to Paramus was very easy.   
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Hearing Issues / Re: Back ground noise problem
« Last post by StevaHong on July 30, 2026, 12:43:20 AM »
One thing that's helped me is figuring out where the noise is actually coming from first. If it's electrical hum, try a different cable or outlet. If it's room noise, moving the mic closer to your voice and lowering the gain can make a big difference. It's surprising how often a simple cable swap or gain adjustment solves the problem.
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ANA Meetings / Patient Education Event in Los Angeles - October 3, 2026 - REGISTER NOW!
« Last post by Director on July 28, 2026, 11:04:45 AM »
ANA Patient Education Event
Hosted by Cedars Sinai
Saturday, October 3, 2026
7:30 am - 4:00 pm PT

Location:
Harvey Morse Auditorium
8701 Gracie Allen Dr.
Los Angeles, CA 90048

Please join your hosts Mia Miller, MD, Neurotologist, and John S. Yu, MD, Neurosurgeon, Co-Directors of Cedars-Sinai’s Acoustic Neuroma and Lateral Skull Base Tumor Program and the Acoustic Neuroma Association for a day of patient education, networking, and support. This in-person event will include presentations from the Cedars Sinai AN Team, as well as time for Q&A and networking.

Scheduled Topics Include:
Understanding Acoustic Neuroma
Surgical Approaches
Radiosurgery & Emerging Therapies
Decision-Making Panel
Treatment Recommendations
Hearing Rehabilitation
Preoperative and Postoperative Dizziness Management
Facial Nerve Treatment & Rehabilitation
Cognitive and Emotional Effects
Panel Discussion / Q&A
and more!

More information at: https://anausa.org/programs/patient-event-cedars-sinai
Register at: https://wl.donorperfect.net/weblink/weblink.aspx?name=E199564&id=891

Questions? Contact Stephanie at stephanierommer@anausa.org

Hope to see you there,

The ANA Team
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Eye Issues / Re: Daily Use Contact Lens
« Last post by StevaHong on July 28, 2026, 07:18:34 AM »
I know everyone's experience is different, but one thing that really helped me was writing down my questions before appointments. It's amazing how easy it is to forget something once you're in the room with the specialist. Having a list made the conversations much more productive and gave me a lot more confidence.
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Eye Issues / Re: scleral lens question/issues
« Last post by StevaHong on July 27, 2026, 04:38:25 AM »
One thing that really helps is being patient with the process and not hesitating to ask follow-up questions if something isn't clear. Even small updates on what you've tried or how things are going can make it much easier for others to offer useful advice.
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