Recent Posts

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83
Inquiries / Bells Palsy and acoustic neuroma
« Last post by cjd on October 02, 2025, 11:48:03 AM »
Has anyone ever heard of a relationship between Bell's Palsy and acoustic neuroma?  Just curious really. 

I had Bell's Palsy on the right side of my face about 13-14 years ago, which lasted a couple of months.  Then ten years later I was diagnosed with acoustic neuroma in my left ear which I had removed in 2023.  Just wondering if anyone else had a similar experience or maybe it's just random coincidence.
84
Inquiries / Re: Safe pain relief?
« Last post by trialferret on October 02, 2025, 03:48:57 AM »
Voltaren gel should work also, so perhaps ask (you can also obtain a physio gel at the pharmacy). Warm pads, massage, and infrared therapy may be beneficial.
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Hearing Issues / Re: Pitch Changes and Musicians
« Last post by cjd on September 30, 2025, 10:05:49 AM »
Wow, I thought I was the only one with this problem.  Comforting to hear I'm not alone, although sorry to hear others are struggling with this as well.  I mainly play bass, piano and drums as well as sing and am still trying to adjust after having my surgery 2+ years ago.
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Balance Issues / Travel Sickness long drives
« Last post by Denis74 on September 29, 2025, 12:56:36 PM »
Hello all,
I had a 1 inch schwannoma removed 10 years ago (time flies).
I was wandering if anyone else suffers from terrible travel sickness after long drives? This is something I never experienced pre-op, but in last few years when we have had car travel holidays with our dog I have experienced really bad sickness, feels like I am suffering (confusion, dizziness, cold sweats, etc) it is so bad and it leaves me exhausted for a day or two afterwards.
I can see nothing in academic studies saying this is a potential side effect of loosing a balance nerve but was wandering if it was related.

Anyone else get post-op car sickness after long journeys?

Thanks,
Den
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Facial Issues / Re: Do I have hope after 6 and a half months?
« Last post by Jill Marie on September 27, 2025, 03:06:53 PM »
Hello,  I don't know enough about your surgery/treatments to tell how much your nerves were damaged so I don't know if this is of help or not.  I had my surgery in 1992 and the my facial nerve was severed because that was where my tumor was. They told me it would take 6 months for the nerve to regenerate before I would see any movement, they were correct.  If your nerve was damaged but not severed I assume it wouldn't take so long for you to notice movement.  Good luck to both of you!  Jill Marie
88
Facial Issues / Re: Questions about smile surgery doctors and selective neurolysis
« Last post by Lizmelendez on September 25, 2025, 06:39:22 PM »
How long did you wait after AN surgery to get this facial reanimation with good results? Thanks.
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Facial Issues / Re: Do I have hope after 6 and a half months?
« Last post by Lizmelendez on September 25, 2025, 06:37:16 PM »
Did you ever get any movement? I’m at 6.5 months and not better tone but no movement.
90
Post-Treatment / 2 years post retrosigmoid at UCSD
« Last post by shannonheals on September 23, 2025, 06:25:35 PM »
I wanted to give an update regarding my acoustic neuroma surgery (retrosigmoid) for my 2.2cm tumor with Dr. Friedman and Dr. Schwartz at UCSD on October 5. For context, here’s my original post from 4 weeks after surgery: https://www.anausa.org/smf/index.php?topic=25519.0

The first several months went relatively smoothly and I felt very hopeful about my recovery. But around the 6–7 month mark, I began experiencing debilitating headaches that are still with me – nearly 2 years post surgery. They’re constant, though they ease a bit with ibuprofen or Tylenol. The pain is concentrated around the incision site, with sharp ear pain and constant tinnitus in my deaf ear. When the meds wear off, it's a 11/10 pain and I even ended up in the ER a few weeks ago because of it.

I’ve seen multiple neurologists, headache specialists, and my surgical team, but no one has been able to give me answers. I feel like I'm just being passed from one specialist to the next. I’ve tried nerve blocks and nerve pain medications like gabapentin and amitriptyline without relief. Imaging (MRI and CT) has always come back “normal,” which makes it even more frustrating. I’m now pursuing allergy testing for titanium, which is rare, but one of the few possibilities we haven’t ruled out.

Also, while my facial nerve was not affected by the surgery, I'm starting to have some facial twitching which is really scary.

At my 1-year MRI, I got the news nobody wants - that the tumor was regrowing. I had gamma knife in November 2024. That was disheartening, since the original reason for surgery was that I was considered “too young” (33 at the time) for radiation. In hindsight, I sometimes wish I had started with radiation instead of surgery despite my age – it might have spared me the hearing loss and these constant headaches.

I thought I’d feel “normal” again by now, but I don’t. The daily pain makes life incredibly difficult and completely drains my energy. Being deaf in one ear makes it hard to process information and I feel so dumb sometimes.

It’s hard not to feel regret about choosing surgery when I had no symptoms of the tumor beforehand - it's a classic case of the treatment causing more symptoms than the disease. I am so worried that this pain and tinnitus are my “new normal,” which is daunting and honestly very sad. I honestly can't imagine living the rest of my life like this...

I know everyone’s AN journey is different, but I wanted to be real about where I’m at, because the recovery stories we hope for don’t always match our reality. I just wish I had gone into it with a more realistic view of the risks. This sucks so much.
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