Recent Posts

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Microsurgical Options / Re: Positive news (successful surgery at UCSD)
« Last post by Mark F. on October 07, 2026, 09:23:07 AM »
Glad to hear everything is going well for you.   Hope the dizziness corrects itself quickly.   Amazing that they were able to save your hearing and your hair.   I had long hair for a man, past my collar, and it was quite the change having my head shaved.  The surgeons only shaved what they needed to, but there was no salvaging the rest after that.  My surgeons did an excellent job, but they definitely were no barbers.  Lol.  It took almost a year before it was long enough to cover the scar again since it goes pretty far down my neck.   

Let us know of future progress.  The one thing you can never get enough of on this type of message board is positive news. 
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Microsurgical Options / Positive news (successful surgery at UCSD)
« Last post by James123! on October 07, 2026, 07:01:52 AM »
Hi everyone,

I posted once or twice over the last 6 months looking for advice. I promised myself I would provide information post surgery to help others looking for help.

I had Middle Fossa at UCSD (San Diego, California) with Drs. Friedman and Schwartz in September. I’m now 22 days post op and I can report that everything went extremely well. My AN was 1.3cm and the surgeons managed to remove the tumor while saving my facial and hearing nerves. My hearing is a little worse than it was prior to surgery but I can still hear in both ears! The surgeons were absolutely amazing, as well as the whole medical team at UCSD. I have dizziness but I’m walking normally and around 2-3 miles a day. If you are able, and UCSD is in network, I would recommend at least considering UCSD for surgery if you need it. Dr. Friedman is such a nice human being and he genuinely cares about each of his patients. He gave me complete reassurance and support the whole time. I have a four-year old daughter so I asked Dr. Friedman if it would be possible to not shave my hair so I could hide the incision. I woke up with all of my hair and have been able to hide the incision from her the whole time (for reference, I have medium length hair for a male).

I’m recovering well and look forward to returning to work in the coming weeks. I know unfortunate outcomes are a possibility (as with everything in life) but I wanted to share with you that very positive outcomes are possible too (especially with experienced surgeons). I believe Friedman and Schwartz have done about 3000 of these surgeries in their career. They do all three surgery types (Middle Fossa, retrosigmoid, translab) regularly and, unlike many places, are able to pick the best surgery for your particular tumor size and location. I think in general, people post looking for help and because they’re struggling (understandably), but as a result we tend to hear only negative stories. I hope my story helps people! You’ve got this!

By the way, Dr. Friedman at UCSD will do free phone consultations. You’re able to send the MRI information electronically and he’ll call you and talk through your options. I think most places require you to have your consult in person, which isn’t ideal if you don’t live locally.
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Radiation / Radiosurgery / Re: Can/Does Radiosurgery reduce dizziness/disequilibrium?
« Last post by Ashman on October 05, 2026, 12:52:47 PM »
MJCM
Thanks for posting. I'm now 6+ months since the SRS and received my MRI 2 Sep. The Radiation Oncologist is happy with the results indicating that it looks like the tumour is dying by the black areas within the tumour which was all white from the previous MRI. Oddly, or perhaps this is normal, I'm feeling more wobbly/dizzy/tired than I ever have. Hoping at some point the negative trend reverses. All for now, will stay engaged.
Cheers
Ash
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Post-Treatment / Re: Three Year Post CK
« Last post by ppearl214 on October 05, 2026, 06:27:33 AM »
Hello Dan!

Woohoo! AWESOME news!

I am 20..... yes, 20 years post-CK for my 1cm AN.  Feels like yesterday! Sending continued good vibes your way!

Congratulations on all you have achieved!
Phyllis



Life is great!

Three years ago, I never would have imagined I’d be writing this. At the beginning of this journey, I was scared, uncertain, and wondering what life would look like on the other side.

Today, I can honestly say that life is pretty darn good.

I’ve come to an understanding with the SSD and tinnitus. They’re simply part of my life now. I’ve learned to adapt, find the humor in things, and keep moving forward. When we go out with a group, I get to assign the seating locations. There are always a few people I place in the “dead zone.” My wife is getting used to it. 😊

The tumor shrank a little on my MRI in April, which was encouraging. My ENT wants to evaluate me for a hearing aid this December. I’m not sure how much it will help, but I’m willing to give it a shot. I do the Delta test and use their entertainment system. With the volume fully cranked up, I can hear a little in the bad ear. I’m not expecting a miracle from the evaluation—although I’m pretty sure I’ll get a bill! 😂

Three years post CK and 2½ years post open-heart surgery, I’m a happy camper.

We’re going to hit almost 90 days of traveling this year. We’re also now grandparents, which is absolutely awesome. There are moments when I stop and think about how far life has come, and I’m incredibly grateful.

I’m sharing this for those who are just starting their journey and are scared. I was scared too. I remember what those early days felt like—the uncertainty, the questions, and wondering what the future would hold.

But here’s what I’ve learned: keep moving forward, one day at a time. You may not know what life will look like a year or three years from now, but there can still be so many good things waiting for you on the other side of the fear.

This group gave me strength when I needed it most. The experiences, encouragement, and support from people who understood what I was going through made a difference in my journey.

So to everyone here who is still in the middle of their journey: hang in there. Take it one step at a time. There is life after the diagnosis, and there can be a lot of good life to live.

I’m proof that the road may not always be exactly what you expected, but it can still lead to some pretty wonderful places.

I truly thank you all for the support you gave me—and continue to give others.

And please don’t tell my heart group, but this group may be smaller… but it sure is a whole lot more supportive. 😊

Thank you all,

Dan
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Thank you Don!
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Derek doesn't read the ANA forums on a regular basis, but he usually posts a few times a year.  So, please be patient, waldo1308.  I'm sure Derek will eventually respond to your questions.  It just may be a while.
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Derek, I’ve been reading your updates about long-term watch and wait and would appreciate hearing how you’re doing.

Are you still watching and waiting? Have you had another MRI since your June 2024 update? How have your hearing, balance, and overall quality of life been?

I’d also welcome updates from anyone who has followed observation for many years. If you eventually chose treatment, what prompted that decision—tumor growth, changes in hearing or other symptoms, or something else?

Your experiences would help me understand the long-term picture. Thank you for sharing.
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Pre-Treatment Options / Re: CBD
« Last post by browfnishlowe on October 03, 2026, 11:39:42 AM »
I've tried CBN gummies for sleep too, helped a bit with stabbing ear pain at night. Definitely start low and slow.
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AN Issues / Travel Sickness - Motion Shock
« Last post by Denis74 on October 03, 2026, 07:28:41 AM »
So, I get terrible motion sickness symptoms after long car journeys where I have been a driver.  This is a symptom that i did not have pre-op, it shows as major confusion and lack of balance.
My ENT consultant in the UK told me he is sure this is an outcome of my surgery but he has not know of others to complain of it and he was limited in his advice.  I therefore have done some AI and online research of my own which I would attach if I could as it includes exercises and pre-travel recommendations.  Instead here is what is happening to me which hopefully fits in this box - let me know if any others have similar symptoms.

Clinical Mechanism: Dynamic-to-Static Transition Failures
What you are experiencing when you stop driving is not standard motion sickness. In medical literature, this is classified as an inability to quickly adapt during the transition from a dynamic state (moving) to a static state (stillness) following unilateral peripheral vestibular loss. [1, 2]
Here is exactly what happens in your nervous system during a drive:
1.   The "Seated" Vestibular Clamp: While you are driving, your body is strapped into a seat, moving at a constant velocity. Because your right balance nerve is gone, your cerebellum (the brain's balance control centre) heavily relies on your remaining left ear and your eyes to keep your world stable. It builds a temporary, high-effort computation loop to process the forward movement of the road. [1, 2, 3]
2.   The Post-Motion Adaptation Lag: Clinical studies on post-acoustic neuroma patients show that the brain's ability to smoothly "turn down" or recalibrate this high-intensity motion loop is damaged. When the car stops moving, your left inner ear suddenly signals absolute stillness. However, your brain's motion-processing centre takes time to empty its "stored" motion calculations. [1, 2]
3.   The "Confusion" Trigger (Cognitive Exhaustion): Because you have unilateral loss, maintaining balance and visual tracking requires active, conscious brainpower—called cognitive reserve. When you are driving, you are burning through this fuel rapidly to keep yourself oriented. The moment you park, the sudden clash between the immediate stillness of the vehicle and your brain's lagging motion loop creates an acute sensory conflict. This floods your nervous system, temporarily exhausting your brain and manifesting as sudden disorientation, heavy brain fog, and confusion. [1, 2, 3, 4, 5]
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@Derek, are you still in watch and wait?
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