Ok.  I've been reading posts on here for a while but this is my first.  I was diagnosed in 2022. At the time it measured 10x6x6.   I just had my typical 6 month MRI and as of 3/24/25 it is now 12x8x8. I have been wanting surgery since I was diagnosed, I am one of those people who just wants it gone.   Anyway, I have most of the typical symptoms, legally deaf in my left ear, balance issues, I've literally had a headache for over a year, it's always there just usually mild, and then gets worse at times.  But I have had some odd things pop up that I think are related, but my neurosurgeon claims is not.   One is recurring double vision particularly when I'm tired or at night which makes night driving really interesting at times, and the other new symptom seems really odd, at night only and not all the time, I struggle sometimes to say what I want to say.   I know in my mind what I want to say, but I have to concentrate way more than I should to actually say the words.   Several years ago I had a pretty bad concussion from a traffic accident where I bounced my head off the steering wheel and the air bag did not deploy, for two weeks after that I had this exact same issue.  Then it was from the concussion, now I am wondering if it is somehow related to the acoustic neuroma.  Has anyone else had this type of issue?  By the way, the issue is just in speech, when I feel like that I still have absolutely no problem typing an intelligent text.  I will be talking with my neurosurgeon on Monday and I really want to push for having the surgery soon.  As a background, I am 56, but other than this tumor I am in very good shape.  I have a very active job, and until last year when the balance started becoming more of an issue I was one of those people that ran 5k's every chance I could.  So my overall health shouldn't be a factor in weather or not to have surgery.   

Hi,

Back in 2010 I had the Gamma Knife surgery and it was followed by growth. The dizziness I had post gamma knife was because of the balance nerve dying and it eventually stopped.

The ENT told me roughly 20% of people experienced growth post gamma knife. I had translab surgery in 2012.  My balance issues stabilized over the next several years leaving reduced balance and SSD as the long term effects.

The ENT and the Neurological surgeons both stated that the area was clean and the surgery very straightforward. They left a small tail to avoid other nerve damage. I have had many MRI's since and there has been no growth.

If I had this to do over I would do it the exact same way.

Hope this helps.

TSaff88

Hello everyone - It's been way too long since I have updated the forum.  I am doing this with the hope that it gives some people a little insight into these facial cramping/contractions that I am experiencing.  I am just over 3 years post CK.  I had little side effects (some light headedness) afterwards until 6 months post treatment.  That's when these terrible involuntary facial cramping/contractions started to occur.  Please read back to my previous posts to get the chronology of all I have tried to get better.  I am not thrilled to say that I am still going through it.  The good news is the "events" have lessened to 0-3 a day depending on the circumstances.  They can be triggered by sneezing, laughing, yawning, rubbing my eyes, but mostly by getting worked up emotionally or with exercise.  We believe the nerve is still swollen and gets triggered (it even happens in my sleep).  So, yes, this is better than the 20/day when it first started, but unfortunately, I don't see any permanent relief in sight.

I will keep you posted with any new updates or progress.

As always, if anyone has any questions please post here or feel free to DM me and we will connect!  Information sharing is very important!

Looks like I've been out of here for longer than I thought:  just an update, last MRI showed further degradation of the leftovers,  balance is really pretty good, but I do still have some minor issues occasionally: at this point, I'm to the point that "is this a residual symptom, or am I just getting old"?  Hearing has basically just settled into a woefully insufficient level, which I'm sure it will remain at.   Basically, no real changes for the last year and a half or whatever it was...and besides some additional hearing loss, not much different than it really was before this whole thing started..

Still no development of radiation-induced superpowers.  I'm starting to have my suspicions that the whole superpower thing is over-sold, and that I probably aren't going to get them..

My son saw a Neurosurgeon Dr.Philip Stieg in NYC today.

After reviewing all MRIs he was not willing to call my son's tumor a vestibular schwannoma. He said based on the MRI it has a very irregular pattern and felt it could possibly be a venous malformation or a cholesteinoma both also benign tumors that could have been there since birth.

Next steps recommendations were also to watch and wait and come back in 6 months for another MRI, DWI imaging and CT scan with thin cuts.

Dr was outstanding and made my son feel comfortable in that he wasn't going to die and he can live a normal life and go back to college and monitor his symptoms.

If down the line there are more symptoms or the tumot grows to the point they feel they need to be more aggressive with treatment we will make a decision at that point.

This has him and all of us extremely anxiety ridden and trying to get him to talk to a therapist as even myself this has been heart wrenching watching him go through this and worrying about my son.  I have been having panic attacks worrying about him but need to be strong for him as this will be something he will have to look after for the rest of his life.

Any others deal with crippling anxiety around these disgnosies?

Thanks