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.

Hello,  Does/Can radiosurgery reduce the dizziness & disequilibrium sensation?  I'm in watch and wait with a 1.5cm tumor & experience mild transient dizziness and disequilibrium daily.  This comes and goes, but I have no other medical issues that would bring about dizziness so, I assume it's coming from the AN.  I’d like to know if radio surgery would help to reduce these symptoms post treatment.  I understand it may be awhile to experience relief due to tumor swelling and other side effects of radio surgery.  I’m looking longer term to hopefully feel a reduction in the dizziness/disequilibrium sensation.  I've listened to the experts talk about this and they don't give a definitive answer.  I just want to know if anyone out there had dizziness prior to radiosurgery & then it got better after treatment.  (basically, real life experience)  Any information is greatly appreciated.

Thanks in advance.
d

Six months with no progress is enough to start planning. Don’t settle locally, get multiple consults.

Great to hear Dan!  Thanks for sharing.

So pleased for you Dan! We really need good feedback to stay positive! All good my side also after CK 6 years ago!