← Return to Cerebellar Stroke - experience/treatment/recovery

Discussion
Comment receiving replies
@lisalucier

Wanted to check in with several of you who have talked about cerebellar strokes. I think your responses will be beneficial to all those in this discussion.

@ajp2019 - wondering if you have had a cerebellar stroke? If so, will you share a bit of your story and how you are doing now?

@bille - are you still experiencing some dizzy spells? How's it going with navigating stairs?

@incognito - how is it going with the dizziness, ”small lightning attacks,” brain cloud and brain flooding you talked about?

Jump to this post


Replies to "Wanted to check in with several of you who have talked about cerebellar strokes. I think..."

It's been some time I checked into this site and, although not asked, I thought I would respond. Just a little background, I had my stroke on January 6, 2018. Hit me out of the blue, had no underlying health issues at that time that I was aware of, healthy and active guy. Went through a barrage of tests over the past 2 years and my cardiologist can only assume my stroke was caused by an AFIB episode. He implanted a Linq loop recorder to monitor my heart and they have not seen anything unusual since the stroke. At this point, I see my cardiologist yearly and he would like to keep the loop recorder implanted until the battery goes dead or I have an AFIB episode. The plan would be to put me on blood thinners if I have an AFIB episode.

My cerebellar stroke left me with the typically challenges; balance was off, right arm and right leg did not work right, I was dizzy in certain situations (busy stores, hallways, in rooms where the is a great deal of stimulus such as heat, smells, noise, movement, etc.). I pretty much had to re-learn how to write, use a keyboard, tie my shoes, brush my teeth, blow my nose, walk down stairs with confidence, throw a ball, those type of things. Driving my car and motorcycle had some interesting moments, would suddenly jerk the steering wheel from time to time when driving my car with my right hand only, or I would apply the front brake on my motorcycle a little harder than needed from time to time. It wasn't to the point where it created a danger, just something I had to pay attention to for a while, something I had to focus on. Probably the thing that affected me most was that I have been playing guitar since my teens (58 now) and I lost my rhythm and could not longer hold the pick. My speech was also a little slurred, certain words would not come out right (thick tongue as my wife would say). I guess my stroke was pretty serious, but not as bad as what others have to deal with.

2 years later, I would say I am probably back 90% - 95% if I had to put a number on it. It didn't come back on its own, I had to work at it all of the time, still focus on things that crop up that pose a challenge, just a new way of life I guess. When things would plateau, I would work harder to make things easier, kind of stubborn I guess.

When I think of the things I still deal with today:

- My speech still gets a little off when I have a mentally challenging week, usually kicks in on Thursday, goes away on Friday night when I shut down a bit for the weekend. Sometimes my speech is off when I have a craft beer:-)
- My right leg is a little off when I get mentally tired. I notice it, but I'm not sure if anyone else does. I plan on making that better by jumping on my bicycle in a few months, just waiting for the snow to melt. I am confident I will be close to my old self by the end of the summer
- I still get a little dizzy or feel a little off in certain environments where there is a lot of stimulus, but nothing like it used to be
- Writing is still a little off, not much though, "O's and 0's still get me!

On this bight side, my right arm and hand coordination is mostly back. I spent 6 months last year working on a porch construction project at my house, best therapy there was for me and I still have all of my fingers! I didn't do so well bowling a couple of months ago, that felt weird, but was better by the end of the night. I did OK with Ax throwing this past weekend, didn't feel weird at all, but found myself throwing too hard, not sure if that was stroke related. I have also been able to mostly get back to where I was with playing the guitar. Created a custom pick that I used for a while then graduated to using a normal pick with Gorilla Snot (yes, that is the name of the product, google it, works well if you have trouble holding objects between your fingers) to help me hold the pick.

For me, things have improved greatly. I stopped thinking about the stroke all of the time in the last 6 months anyway, which is nice. Get's a little tiring worrying about having another stroke, thinking about what to do next to get better, etc. I was fortunate that I was able to work myself back to a somewhat normal state again, I know not everyone has that luxury. Hopefully my words add some hope for those new to this whole stroke thing.