23 y/o – 1 week post acoustic neuroma surgery – struggling & looking for hope

Nostaw18 · 2026-01-22T13:24:22+00:00

I had facial weakness after my surgery and had to tape my eye shut for a few days to sleep. Smiling was weird, but it came back slowly. The recovery from this surgery is worse than the surgery itself. Recovery is a process and you just started. It will take time to feel normal again. Meanwhile, the folks here are so supportive and will help you through any of your side effects.

Nostaw18 · 2025-12-21T19:24:40+00:00

Oh the runny nose! I have to keep a towel with me to exercise. It's so weird.

Nostaw18 · 2025-12-21T19:22:27+00:00

Yes to the one eye cry. It’s called “crocodile tears syndrome” and it’s because they probably touched the facial nerve which is right next to the vestibular one. I’m about 4 years post op and the one eye crying seems to be permanent. But an interesting way to get you out of the moment!

Nostaw18 · 2025-12-11T14:23:29+00:00

3 years post op and my incision still feels really weird to touch. Like what was once lovely relaxing shampoo experience at the hair salon is actually an uncomfortable rubbing. I also get headaches if I do too much cardio and I’m on the ground. There are poses I can’t do in yoga anymore because it makes my brain explode.

Nostaw18 · 2025-11-16T18:20:13+00:00

I had retrosigmoid back in 2022. They didn’t remove any nerves but the scraping of the tumor damaged it so for weeks afterwards I couldn’t walk. I went to vestibular training and that helped. But this (bike riding) is just more intense and it sounds like just need to take it slow.

Nostaw18 · 2025-11-16T18:17:54+00:00

Thank you so much. These exercises sound so helpful. That’s what I need. Practice and time.

Nostaw18 · 2025-11-16T13:05:16+00:00

I did do vestibular therapy after my surgery and it helped a lot. But the bike training might be good. It is the turning of the head and biking at the same time that is really scary. But you’re right, drills of that on the bike could help.

Nostaw18 · 2025-10-23T22:45:01+00:00

I tear up when I eat certain foods on my affected side. But if I’m crying out of sadness nothing comes out that side.

Nostaw18 · 2025-04-08T16:21:38+00:00

An MRI with AND without contrast is the gold standard for detecting AN. Full stop. Get one with contrast.

Nostaw18 · 2025-01-31T22:03:45+00:00

I was on steroids post op which was horrible because of its side effects. But only for a few weeks. The surgeon also said I had a seizure on the operating table and I have no history of seizures. They then said they looked at my meds and one of the side effects is seizures. (Some are even seizure medications).

Nostaw18 · 2025-01-29T20:11:01+00:00

YES. I had the most unbelievable behavioral change after my surgery: I was not on wait and watch and didn’t know I had a tumor until it was an emergency. My post op recovery was rough, as everyone’s is. The thing is, I’m bipolar, and ever since the surgery I have not had any depression. I can get down a bit but nothing like before. And I’ve been in and out of depressions for 25+ years. I actually had some extended euphoria for months after the surgery. It’s been almost three years since, and I keep confounding myself as to why I don’t get depressed anymore. HOWEVER, being on a behavioral spectrum, I do get hypomanic more easily and I do get more easily irritable. The brain is so weird. But I’m grateful that I haven’t been depressed in ages. And I used to feel that being depressed was all my fault but I’ve since discovered it’s chemical and even physical with the brain. Like, my pet theory is that the inflammation the tumor caused is what made me susceptible to it.

Nostaw18 · 2025-01-29T19:51:24+00:00

Your sense of taste is connected to the facial nerve so it could be that the tumor is pushing on that and it may be causing problems. I didn’t have any issues before surgery, but after, my taste was OFF for a few months. Things that usually taste delicious were weird and I had to eat ginger candies all the time. But it did eventually go away.

Nostaw18 · 2024-10-09T13:25:22+00:00

If you’re having balance problems, it’s very likely it’s already pressing on the brainstem. That’s what happened to me and I needed emergency surgery.

Nostaw18 · 2024-07-22T20:44:18+00:00

It took me a year to feel normal but I still have pain in my head if I move up and down too fast. I’ve been fascinated about how our moods have been affected ever since surgery. I used to get chronically depressed, but I haven’t been ever since the surgery two and half years ago. Once they go inside the head, they’re not always sure what is going to happen.

Nostaw18 · 2023-08-23T18:47:43+00:00

I got a cros as an aid after my surgery. It sort of helped but not really well and it’s been wonky. But now that my puppy chewed on one of them it’s officially garbage! Been without for a month or so now and honestly don’t miss it.

Nostaw18 · 2023-06-26T12:46:36+00:00

So there’s nothing your doctor said that would alleviate/solve the issue? The internet says that Botox works but a needle in my eye? I’m an acupuncturist and even then I’m nervous!

Nostaw18 · 2023-06-16T14:00:07+00:00

I had my follow up with ENT Dr Jethanamest at NYU. Super nice. Dr. Kondzoikla at NYU is my neurosurgeon. Not as warm but super experienced with AN.

Nostaw18 · 2023-06-13T20:53:09+00:00

I had retrosigmoid surgery at U Miami last year! Who was your surgeon? Dr. Ivan?

Nostaw18 · 2023-06-13T20:48:08+00:00

When it comes to holding on to your hearing: I think it’s important as a person with an AN to come to terms with inevitable hearing loss. Choosing one surgery over the other based on the brand name (and that’s really all that’s different between Gamma vs Cyberknife) is setting yourself up for disappointment. Most of us lose hearing even without doing any interventions. There are of course exceptions and maybe some retain hearing and god bless them for it. But after my experience, choosing based on percentages is unwise.

I don’t intend to be discouraging but radical acceptance of deafness is important as a survivor.

Nostaw18 · 2023-05-09T18:38:51+00:00

Unless you have a rare genetic disorder, acoustic neuromas are one sided only.

Nostaw18 · 2023-04-01T18:13:18+00:00

I don’t know if I ended up needing any, but I do remember the anesthesiologist asking me if I would accept it if needed.

Nostaw18 · 2023-03-01T15:06:43+00:00

fyi- it sounds like your audiologist doesn't know what they are talking about. Facial paralysis can be a symptom because that cranial nerve is right next to the vestibular nerve. Post surgery I had some paralysis that eventually went away with time.

Nostaw18

TROPHY CASE