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=25519.0The 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.
