← Return to Cerebellar Stroke - experience/treatment/recovery

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@colleenyoung

Hi @strokesurvivordynamo, (I love your username.)
Thanks for kicking off this topic. Given that cerebellar strokes account for less than 10% of all strokes, this is an important discussion group to form so that survivors can share their road to recovery together. Can you tell us a bit more about your story? What impact has stroke had on you? Did your stroke affect the left or right side? How is rehabilitation going?

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Replies to "Hi @strokesurvivordynamo, (I love your username.) Thanks for kicking off this topic. Given that cerebellar strokes..."

At 48 and relatively healthy, I didn’t fit the typical stroke profile. I have great cholesterol, am a non-smoker, a casual drinker, I don’t have uncontrolled high blood pressure, I’m not a diabetic, and have no family history of strokes.

If you’re like me, you’ve read the Heart & Stroke material and watched the ads on TV. We’ve been trained that if you think someone is having a stroke, act FAST and do the following:

Face – is it dropping?
Arms – can you raise them?
Speech – is it slurred or jumbled?
Time – to call 911 right away!

My daughter thought I was having a stroke when it was happening and administered the FAST test – I passed it. I could do all of these things! That test works for the majority of strokes but not all. A cerebellar stroke, like mine, accounts for only 3% of strokes. MY warning signs didn’t fit the profile.

Instead I had the Three Vs – Violent Headache, Vertigo, Vomitting. Any of these signs coming on suddenly without explanation, alone or especially together, are enough to call 911. Even if your symptoms go away, you need to see medical treatment as you could have had a TIA (mini stroke).

For every minute delay in treating a stroke, the average patient loses 1.9 million brain cells. That is terrifying! It was 4 hours before an ambulance was called to my home the night I had my stroke.

I had felt “off” two days before and paid my Doctor a visit because I felt so strange it worried me. I described it as “feeling like Alice in Wonderland and I didn’t belong”. I now know that sensation is called disassociation and is a sign of a cerebellar event.

My Doctor couldn’t find anything wrong and said maybe I was fighting a virus. So when I suffered my stroke, my family thought I had a bug and checked on me every 30 minutes as I continues to battle the Three Vs. Not until I collapsed on the bathroom floor did they fear the worst and dial 911.

@colleenyoung
Ischemic stroke – left inferior cerebellum

I HAD ONE OF THESE AND A MONTH AFTER I STARTED GETTING NERVE PAIN I AM FOUR MONTH INTO

I am now 62 yrs old. Had my stroke in 2011. Had the same symptoms, except for the vomiting part. I had major headache (11:45 pm, ??) and had a hard time figuring out how to dial ph no.'s, could not stand enough to change clothes, hardly. Fell into a chair when got to lower level in house and watched the walls bounce up and down for a few minutes (this was the strangest part for some reason and not sure why I remember it). My son took me to ER, was told also that I had Vertigo and sent home. Next 2 days I still had major headache, felt slightly dizzy, so when to local clinic and just happened to have traveling MRI truck there that day and did a scan, just to rule out a possible stroke. It did show a Cerebellar Stroke did happen. Then of course everything changes and we tried to figure out the cause, which we never were able to confirm.
I suffered with headaches everyday for over a year I think, as soon as I opened my eyes in am, they would start. Does anyone else suffer from this?
Until a one day I thought maybe I was having a TIA, that spooked me alittle and stopped at a different clinic for fear it was happening again. After telling him the whole story, he prescribed propranolol. Which really helped, in my case.

Hello @livetheday. Welcome to Mayo Clinic Connect! What a scary thing to experience. Thank you for sharing it with us.

Do you find yourself constantly worried that you are having another Cerebellar stroke?

Are you still having the headaches? or has the propranolol helping with that?

No. Not really. Yes I still have some headache, like yesterday and part of today. Even with Propranolol I still get those sharp jabbing pains. I wish someone could tell me why this BP drug works for this? What are long term effects?I just get frustrated it never goes away, one doesn't even realize what normal is anymore, unless one I was real lucky to have a good day, close to what it used to be like, before the stroke.That being said, we all still have to figure out how to cope and make best of it.I think most people that were never diagnosed with a cause, just want answers or at least a likely cause.

Did your Doctors ever come up with a reason of what caused the stroke in the 1st place? Where did the clot come from? I had many tests checking for bad arteries/vessels, nothing seemed to look like an issue. They also did a mental eval of some kind, which surprised me a bit. Was it to see if I was just a whiner or making it up? I wonder if it would be at all helpful, if people that have had a stroke of this type created a list of common complaints/issues so to speak, to see what is relative/common to most survivors. Not sure if it would fix anything or help anyone, but we might somehow fell better knowing we are dealing with the same issues.

I have a few questions for others, that have had there stroke more than a few years ago.
1. Do you feel like it is harder to remember things in detail, more that a few days? I am almost 63, so I am sure age as something to do with it, but I find it helpful to write things down. I don't think I am explaining this quite correctly, but it is strange to me when one does not remember things that should give one pleasure or of having fun, like when on a vacation. For me everything is just like work. I wonder if it is because we have to focus so much more than we did before, just to preform our daily jobs, as we did before the stroke. Which is tiring in itself.
2. Does anyone else ever get sharp pains near the sides of your head? Just out of the blue, with no warning. Mind feel almost like an ice pick type, electrical shock. Will stop you in your tracks, for a few seconds, then it is gone. But was alittle nerve rattling the 1st few times.
The one thing I wish Dr.'s would not say after a few years is: " I think all this is just an after effect of your stroke, I think you just need to learn to live with things, as they are". That statement might well be true, I just don't want to hear it!
3. Do Dr''s ask you if you are depressed? Is that a side effect of any type of stroke? Seems likely, given how ones life changes in a heart beat. Maybe Dr.'s need to consider trying to treat people without giving them a pill all the time OR on the flip side again saying you need to live with it.
I did go to a Chinese herbalist type Dr a few months ago and he gave me some herbs and did acupuncture, that made a big difference at the beginning, felt so much better than what the normal has been, but now after a month or 6 weeks, it is kind of same old thing. It was also kind of expense, since insurance will not cover any part of this type of visit.
Remember, the important thing is to: KEEP THE FAITH!! Keep your chin up, keep looking for new answers and work through it! I am also a 41 year cancer survivor, so I am living proof you can't or shouldn't give up ever!

When they admitted my husband to the hospital they diagnosed him with Ischemic stroke, but when they discharged him the diagnosis was Cerebellar Stroke, acute. He has Stage 3 chronic kidney disease, is diabetic and high blood pressure. He came home from the hospital yesterday afternoon and is still suffering from very bad balance issues. Even with the walker.

I have not had a stroke, but am at high risk with a severely narrowed rt. Cerebral artery.