Cerebellum avm

Symptoms & Treatment Cyber Knife Radiation
21

I just saw this. Hope all is going well for you!

I had cyberknife for a cerebellar AVM about 8 years ago. The nidus bled, which was the first indication I had the AVM. First I had embolization surgery, and then the cyberknife was supposed to take care of the remainder. Unfortunately, it didn’t, so the AVM recruited new vessels and regrew. I knew that was possible, but at the time I didn’t really want to travel to have open surgery (there wasn’t anyone appropriate in where I lived). I had to have embolization done again a few months ago (I went to Cleveland Clinic), in order to remove as much risk as possible from the open heart surgery I was desparately needing. The surgeon took more radiation out of consideration, because that part of my brain had already been the field for theraputic radiation when I had cancer nearly forty years ago.

So anyway, the CyberKnife was pretty easy. No frames, too, just a custom mask. I had a lot of issues after the embolization with balance and fine motor control, but not after the Cyberknife. Everyone’s experience is different, though.

I hope you are doing well and that this works for you. Be sure to have follow-up over the years to see what its status is. as it does take a long time to scar shut. The pandemic delayed mine unfortunately, and then it was a very complicated situation due to other medical issues.

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22

Thank you for you response!
I’m sorry you had to go through this.Is it gone now?How are your motor skills?
I had cyberknife 3 days ago and all went smooth.
I’m on steroids now for 20 days and then I’ll have the usual check up MRI in 6 months.
I’m ok for now just feeling my head a little stiff i would say.

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23

I hope you are doing well now! I hadn’t been on this site for a very long time so I just saw this message and your questions.

I’m getting MRI/MRA follow ups every six months. The neurosurgeon wasn’t able to get through a couple of the very small feeder arteries during the embolization, but on the MRI you can’t see anything now. Of the AVM, I mean, I do have a significant hole in brain from all the treatments!

It took me 2-3 years after the first embolization to get back to “normal”. The part of my brain that’s affected controls balance, proprioception, fine motor, and coordination. Normal meaning good enough, not anywhere close to where I had been before.

Second time around, it’s been easier in some ways, and harder in others. Once I got over the initial vomiting and sea-sickness, I could walk if I held on to someone or something for balance. I still can’t walk on the treadmill hands-free, but as long as I’m touching someone or something I feel like I’m walking on solid ground again, instead of standing in a tippy canoe.

I have a lot of trouble writing, and some, typing. I can “draw” letters very neatly (and slowly) if I was watching the page intently. But I can’t, for instance, jot down an address while I’m on the phone. At least not where I can read any of the letters and numbers later!

I had a lot of therapy last year, hand therapy which only a little bit helpful, and physical therapy which helped a lot with balance issues. I have hiking poles, and if I remember to use them, I can walk pretty well in straight lines. The best thing that came out of hand therapy was putting little squares of stick-on velcro on certain keys on my laptop keyboard, like the “o” and the backspace, so I can find them easier. It still takes me forever to type things, but I think it’s getting better. Maybe?

I can’t complain because it’s all things that are annoyances for me but not the kinds of things that too many of people here have to deal with every day. Plus, I’m here to experience it. In the grand scheme of what could have happened, I have been very lucky.

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24

Hello again!
I can say I feel very good lately,no headaches,nothing..In the last MRI the AVM was still visible but the doctor said he thinks I’m safe.
You seem to have some struggles but I totally agree with you,and I think we should be thankful for what we have,there’s always worse…

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