10 Mos post cyberknife

[dizzyamI]

I don't feel any better post cyberknife than I did pre. Swimmy head all the time. Lots of migraine. Bouts of vertigo. Neither my radiologist nor my neuroENT says these symptoms are normal post cyberknife. That's quite puzzling since I see a few others here that have dizziness & headache. They say hearing loss is normal, but not balance problems yet the schwannoma sits on the 8th cranial nerve, which controls hearing & balance. HELLO!!! I don't get it.

[bri-82]

I was told by my neuro that post CK symptoms can appear very early and/or even years later and that there is quite a bit of variability among cases. The time that it takes for things to stabilize can vary widely too (if the radiation worked).

You are not alone. I am also 10-11 months post treatment CK and balance is an issue with some days better than others.

I hope this helps.

~BM

[dizzyamI]

Do you find you have 'swimmy head' most of the time? Do you find that visual stimulation makes it worse and lying down and taking a rest with your eyes closed helps? I do.

[bri-82]

I'm not sure what is meant by 'swimmy head' exactly, but lately I have a feeling similar to having been on a boat in rough seas and then stepping back onto dry land--my feet are solid but there is still ocean motion in my head. When I'm tired or if it's dark I have to be really careful. Thankfully I don't get nauseous with this.

I try to stay optimistic and do what I can to not dwell until the next MRI (which hopefully shows progress). But as I said previously, some days are better than others.

Have you spoken to your neuro about a possible Rx for your symptoms? She/he may be open to prescribing you a steroid or something else to help you along. I was on a steroid for 3 weeks and it helped (note that steroids have their own not so pleasant side effects).

~BM

[Hampshire82]

I was fortunate enough to find a neuro PT who specializes in working with people who have head things (tumors, etc). When insurance allows he works with me with exercises to regain my balance (my AN is on my balance nerve).

[donjehle]

Like Hampshire82, my neurologist recommended that I see a vestibular therapist who helped me to regain my balance from my acoustic neuroma.  She tested me when I first arrived at her clinic, and I fell five times trying to do her exercises (I had a safety harness on so I didn't get hurt).  After several weeks of vestibular therapy, she retested me, and I had better balance than most people my age.

Occasionally, I will momentarily lose my balance, especially when I am overly tired, but it does not last long, and I am able to recover quickly.  And that does not happen often when it used to happen every day.

So, I heartily recommend seeking out a qualified vestibular therapist (and not simply a physical therapist as most PTs are not skilled in helping people with acoustic neuromas).

[stevehernes]

Is it different now? How are you feeling? I’ve noticed that my overall well-being is closely tied to the amount of rest I get and the level of stress I’m dealing with. When I manage to balance these aspects effectively, my mood and productivity improve significantly. To help with this, I’ve been utilizing the support from https://academized.com/blog/guide-digital-arts-humanities. Their service has been instrumental in managing my academic workload, which has in turn reduced my stress levels. By providing valuable assistance with my papers and assignments, they’ve allowed me to focus on getting enough rest and maintaining a healthier balance in my life.

[DanFouratt]

Steve,

I am not a doctor but a CK patient. Prior to my CK procedure (9/21/23) I had loss of SSD, tinnitus, and an occasional bout of wobbliness not really vertigo.  The wobbliness could also have been my heart (stenosis) identified in Dec 2023.  Post CK I still have SSD, tinnitus, and an occasional bout of wobbliness.  Since OHS the (3/22/24) the wobbliness has disappeared. I was told CK would not improve my conditions the goal was to stop them from getting worse.  As of today that has happened. I was warned that the tumor may swell and that could cause some issues. The swelling could last 6 months to a year. I did have more stuffiness in my head the first couple of weeks after surgery but that disappeared and nothing since.