1. < Stroke & Cerebrovascular Diseases

Cerebellar Stroke - experience/treatment/recovery

Posted by strokesurvivordynamo @strokesurvivordynamo, Apr 21, 2017

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.

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

yvonne119th | @yvonne119th | Feb 15, 2019
In reply to @rldawg "My husband, in his early 50's, had his stroke in September. I remember also being extremely..." + (show)
@rldawg

My husband, in his early 50's, had his stroke in September. I remember also being extremely fearful of a reoccurance.

I had also posted here asking how other survivors have lived or changes they have made since then, to prevent another stroke from happening. My husband has changed his diet and now works out more often.

He was told that the risk of a reoccurance is highest in the first month after the stroke, and then still elevated for the first year after. So we are still in the high risk zone.
i understand your fear, and it's normal to be scared. It's also common to feel depressed after a stroke. You came so close to death, after all.

For us it was a huge wake up call. I'm relieved every morning to know that my husband is alive and well. Every day with him is a precious gift, that came so close to have been taken away from me on the night of his stroke. He's made some other changes to his life as well, like spending more time with our child and being more assertive about what he wants. It's like we recognise that tomorrow isn't guaranteed and so we live more fully in the present.

A level of anxiety remains, of course, and I have started seeing a therapist myself for stress disorder. My husband himself is more or less back to work, back to normal. Cause of stroke is still unknown. I researched about strokes and read stories from survivors. There are good, evidence-based tips for preventing strokes out there.

The tests you have to undergo are unpleasant but should help to find the cause of the stroke. I empathise! I find waking up and counting my blessings, as well as going to bed with a grateful heart helps a lot.

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I am 45 years old. I had a cerebellar stroke in September of

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yvonne119th | @yvonne119th | Feb 15, 2019
In reply to @yvonne119th "I am 45 years old. I had a cerebellar stroke in September of" + (show)
@yvonne119th

I am 45 years old. I had a cerebellar stroke in September of

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2018. Im blessed to not paralyzed or facial dropping. My left side is my weak side. I have my balance and walking better on 5 months. Thank God

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placyhall | @placyhall | Feb 15, 2019
In reply to @yvonne119th "I am 45 years old. I had a cerebellar stroke in September of 2018. Did u..." + (show)
@yvonne119th

I am 45 years old. I had a cerebellar stroke in September of 2018. Did u recover from your stroke?

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Hi Yvonne! I’m Placy 50 years old, I had stroke 9/30/2018

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placyhall | @placyhall | Feb 15, 2019
In reply to @placyhall "Hi Yvonne! I’m Placy 50 years old, I had stroke 9/30/2018" + (show)
@placyhall

Hi Yvonne! I’m Placy 50 years old, I had stroke 9/30/2018

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I feel a bit better but my dr, told me a will take time to get better, TG now I can walk slowly, help my husband with cooking, laundry I get in better, only problem is my insomnia is bad, and I have very bad pain in my joints n muscles, get tired very easy, I can not drive or be on my own

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janc1947 | @janc1947 | Feb 21, 2019
In reply to @strokesurvivordynamo "At 48 and relatively healthy, I didn't fit the typical stroke profile. I have great cholesterol,..." + (show)
@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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Your symptoms of cerebellar stroke are similar to mine, Vertigo, vomiting and double vision. Happened about 18 months ago. I'm 71 and feel depressed because I'm afraid I have brain damage. Got to the hospital about 2 or 3 hours later, stayed 8 days with multiple MRI's, etc. Now just trying to stay connected. Keep your chin up. I hope you are feeling better soon.

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jmjlove | @jmjlove | Feb 25, 2019

Cerebellar stroke, 2017. Still not comfortable in my own skin. Still feel like I slog daily through a mud bog. I had a "large" right side stroke. The new me is quite unknowable....to me. I feel my world is alien and my place in it imprecise. Lost my left side function. Did therapy for a year. Very aggressive, which was my nature. If I could, I would. And I did. Within 3 months I was walking miles. Husband cut a path around the farm that was my walking path. Had an unexpected cling on. My left side developed a type of palsy, making buttoning, cutting hair, and my own nails nearly impossible. But...I digress, lol.

Wanted to know if anyone else has had a palsy develope AFTER, (for me, a couple months) the big event. Would love to write some happy clappy BS, but cant. Would have to lie. Won't do that. Also.....headaches, scary cerebellar head aches. Anyone?

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jmjlove | @jmjlove | Feb 25, 2019

Just to give further detail....the head aches are terrible. Can barely stand the feel of a soft pillow. Makes me fear another stroke on my horizon. Say it isn't so. 😉

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insulateret | @insulateret | Feb 26, 2019
In reply to @colleenyoung "Hi @strokesurvivordynamo, (I love your username.) Thanks for kicking off this topic. Given that cerebellar strokes..." + (show)
@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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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.

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2 replies
bermuda | @bermuda | Feb 26, 2019
In reply to @insulateret "When they admitted my husband to the hospital they diagnosed him with Ischemic stroke, but when..." + (show)
@insulateret

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.

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I am sorry for your husband. Cerebellum is where the stoke occurred which is also called the little brain at the lower back of your head and ischemic means the stroke was cause by a blood clot . I am almost two years since my cerebellum stroke(it was a clot too) . I still have mild balance issues. It takes time, some rehab, Physio too to help. I have spent a lot of time in the pool to strengthen the left side. I can’t believe I am still getting better after this time but it is small amounts. Don’t be discouraged- it takes time.

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supra865 | @supra865 | Feb 26, 2019
In reply to @jmjlove "Just to give further detail....the head aches are terrible. Can barely stand the feel of a..." + (show)
@jmjlove

Just to give further detail....the head aches are terrible. Can barely stand the feel of a soft pillow. Makes me fear another stroke on my horizon. Say it isn't so. 😉

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I had my stroke back in December 2015 and I've always had those headaches. whenever I lay on a pillow or rest my head on the wall it always hurts. my neurologist just put me on topamax and started me on SPG blocks. I did one and have two more. It's only been a week so I dont expect results this soon.

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