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Quote
"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." 
It's a fine balance between encouraging fellow sufferers to remain positive and being unrealistic about how often tumors do not grow significantly.  I have often wondered what percentage of diagnosed tumors do not grow and/or do not create problems.
In my first few years I was resigned to the likelihood of needing surgery and I studied all I could find along with engaging with others about their experiences.  I always hoped my tumor wouldn't become a problem but never actually expected it.  I have been fortunate but for so many sufferers an acoustic neuroma is life altering.  I have read many accounts where folk have been severely affected and hearing about their experiences I find very upsetting.   
Beyond being diagnosed you Americans potentially face navigating your healthcare system with its often financially-crippling costs.  I've experienced the best and worst of it a couple times and I feel for anyone who does not have good healthcare cover.
   Unrelated to any of the above I'm finding this website very unresponsive and slow.  I hope the likely-huge database won't cause bigger problems in time.
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Physicians / Re: ENT Diagnosed AN. Which Neurologist to SEE in DMV area?
« Last post by Mark F. on October 15, 2026, 11:47:00 AM »
I assume you mean Delaware/Maryland/Virginia.  And if you are leaning towards  surgery, I 100 percent recommend John's Hopkins.  They have excellent neurosurgeons and I even developed a throat infection after surgery that the care team there caught right away and prevented it from becoming a much worse issue.  They also have headache clinics with excellent neurologists as well.  I wouldn't go with someone just because they are close to home.  I drove past several hospitals as I live 2 hours away from Hopkins.   But I wouldn't trust my brain surgery to a place that doesn't do that on a regular basis.
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Physicians / ENT Diagnosed AN. Which Neurologist to SEE in DMV area?
« Last post by waldo1308 on October 15, 2026, 10:34:53 AM »
ENT Diagnosed AN. Which Neurologist to SEE in DMV area?
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Post-Treatment / 4 weeks post ops retrosigmoid surgery
« Last post by harkethir on October 15, 2026, 10:03:57 AM »
I am in 4 weeks post ops retrosigmoid surgery. First 2 weeks, I was able to make 7k steps. I thought I am rockstar. Totally totally wrong. I was on steroid dexAMethasone. Week 3 steroid done. 24 hrs after steroid course done, I have pulsating and radiating pain on the incision side. I am still having it but managing it with Thylenol. I couldnt make 10 steps outside. The moment I step outside, my incision side starts pulsating and pains a lot. Climbing stairs also have same pain but reduced impact. I know I am too early and need to give some time. But just want to know if anyone had same and how did you overcome. Any advise is greatly helpful. Thank You
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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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