Cerebellar stroke experience, treatment, recovery - want to dialogue

I suffered a Cerebellar Stroke in Dec 2015 in my 40s and am interested in connecting with other cerebellar stroke survivors to share our experiences, testing/therapy options, struggles on the path to recovery.

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Profile picture for midnightsun18 @midnightsun18

I wouldn't mind some insight. My spouse age 42 suffered a stroke I was told Left Inferior cerebellum and middle cerebral. We have been separated so I have no details on the events leading up to it. He is currently paralyzed on the right side, can only say no, yeah and uh. Responds to questions with headshakes which lead me to believe he understands. Has shown emotion (sadness, I mentioned our dog died). His health wasn't the best leading up to this, he is not overweight just didn't eat well and take care of himself. Its been 13 days, I wouldn't mind some information on where you began and how you progressed. I don't know what to think, although he does have an infection in the heart which he is received 6 weeks antibiotics for and may need a heart valve replacement in the future.

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@midnightsun18 - you mentioned your spouse from whom you were separated at the time had a stroke. Not sure what your marital status is at this juncture, but wondering how he is doing?

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Profile picture for neverquit72450 @neverquit72450

Thank you!
I’m learning…. We have no choice!!

I’m sorry to hear your story. I am very empathetic to everyone that has had to endure this struggle. Although I know everyone has their own set of challenges, I feel for every one that has to accept their “new life”. It’s terrible and it’s not fair…. I guess that’s life

I have still have some issues with dizziness/vertigo, but not as bad as it was in the beginning. My main struggle is ataxia and tremor which makes it very difficult and painful to walk and balance. I keep trying new things and praying for another miracle!!

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@neverquit72450 - wondering how things are going with some of the symptoms you'd mentioned you were dealing with, like ataxia and tremor?

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Profile picture for strokesurvivordynamo @strokesurvivordynamo

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.

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@goggmiller Hi there - you tagged me but I can’t see any comment. Perhaps it didn’t post. Please try again. Thanks.

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