Recent Posts

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Thank you, Don and Keith, for taking the time to share your updates.

Don, I appreciate hearing how you’re doing nearly five years after diagnosis and how you’ve become more comfortable with watching and waiting.

Keith, thank you for sharing your experience from the first symptoms through diagnosis and the years since. Hearing that your tumor has remained around 14 mm and that some symptoms have become less noticeable is encouraging.

I understand everyone’s experience is different, but your stories give me valuable perspective as I learn more. I appreciate the support from both of you.
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Thank you, Don, for your kind words and encouragement. I appreciate you taking the time to read my story. I hope sharing my experience can help someone else who is going through something similar. Your support means a lot.
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Post-Treatment / Re: 5 weeks post op
« Last post by waldo1308 on October 14, 2026, 09:16:55 PM »
How are you? It’s been 11 years since you had your surgery.
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Thank you, waldo1308, for sharing your experience and timeline.  There may be many people lurking on these forums who are going through something similar.  By telling your story, you may have given them the courage to see an ENT and have and MRI done.  So, I appreciate your story.

And best wishes on your continued journey!
Don
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Inquiries / Re: Interpret results from one year proton therapy Mass Gen
« Last post by waldo1308 on October 14, 2026, 06:42:50 PM »
Hi Daniel, I hope you are doing well. Just Checking.
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Thank you, keithmac, for sharing your experience.  Even though our experiences are all different, there is encouragement for others in sharing what we ourselves have gone through.  Your story is a special one.
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I wanted to share my experience and the timeline of how a suspected acoustic neuroma was discovered.

2009: I began experiencing tinnitus.

2016: I noticed hearing loss after taking antibiotics for bronchitis. This is when I noticed the change, although I don’t know whether the antibiotics were responsible.

2019: A hearing test showed 94% word recognition in my left ear at 80 dB.

2025: I began experiencing phantom smells (phantosmia), which prompted me to see an ENT.

August 2026: My ENT referred me for an MRI with and without contrast.

About five days after the MRI, I experienced headaches, lightheadedness, and nausea. I was told these symptoms could be related to the contrast injection, although the cause wasn’t confirmed.

I contacted the radiology office to request access to my images. While waiting to discuss the results with my doctor, I used AI to review them, and it suggested a possible acoustic neuroma. This was not a medical diagnosis. About an hour later, my ENT’s office called to arrange a review of the MRI results.

At that appointment, my ENT also said the MRI suggested an acoustic neuroma and ordered another hearing test.

October 2026: The hearing test showed 90% word recognition in my left ear at 80 dB, compared with 94% at the same testing level in 2019.

My ENT has ordered a dedicated MRI focused on the left internal auditory canal (IAC), scheduled for November 2026.

For now, I’m still completing the evaluation and gathering information before deciding on next steps. Reading the experiences shared here has helped me understand the different paths people have taken, and I wanted to contribute my own story.
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 Hi anyone potentially interested in my (now) long-term experience.
I first realised something was wrong November 2013 when I was camped in Arizona, a snowbird and RVer at that time.
Tinnitus was slight at first but soon became very noticeable, traffic roar when walking was deafening and unsettling, driving my 3.5 ton dually a challenge, walking in a straight line even more so.
Reluctant to visit ER (I’m a Brit) I persevered through the winter and by April I’d learned to cope with my symptoms.  But my balance was awful and I couldn’t run or even walk in a straight line unless I looked down at my feet most of the time. Hiking the desert needed concentration. 
I did, though, get used to the situation and only in 2015, when my hearing suddenly became bad, was my AN diagnosed.  From research I already suspected that’s what I had though – it wasn’t a surprise.
I did fear in fall 2015 that I’d need treatment - I had read accounts on ANA and also BANA.  But I didn’t and year-on-year since then my tumor has remained around 14mm, about half an inch, measured at annual MRI scans. Over the years since I’ve gotten more used to my symptoms and some have even become much less noticeable.  I’ve been lucky but I’ve read loads of accounts from others less so.
With little to contribute I pulled away from ANA but I remain a member of BANA, the Brit. acoustic neuroma association.  I found experiences there are more relevant for me and things in the US can look very different.
Nonetheless a tumor is a tumor wherever we live and I hope my experience may encourage sufferers beginning their own acoustic neuroma journeys. I really do hope their experiences will be no more difficult than my own.
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Hi, waldo1308!

Let me just say that next month will be five years since my AN was diagnosed.  It still remains small, and I'm not experiencing any new symptoms.  So, at this point, watching and waiting is the best protocol for me.  Unless my AN grows larger or my symptoms become worse, I will probably continue to wait patiently.  It took a while, but I'm getting used to it.
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Microsurgical Options / Re: Positive news (successful surgery at UCSD)
« Last post by donjehle on October 12, 2026, 04:47:31 AM »
Thanks, James123! for posting about your successful surgery.  It is very encouraging for others to hear of good results.  Drs. Friedman and Schwartz have an excellent reputation at UCSD.

If you don't mind posting again on your recovery, say, 3 months and/or 6 months out.  Again, it can be a great encouragement for those who are facing treatment and don't know what to expect.

Best wishes on your continued recovery!
Don
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