Cerebellar Stroke - experience/treatment/recovery

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 group.

I am like that after almost three years. I had two brain bleeds after a TBI during a car accident. Shopping brings it on, especially a store where one must scan items visually or be moving while looking around. First, my head feels like it is twice its size, tinnitus starts, my eyes feel blurry and I begin to feel completely overwhelmed with my shoulders tightening up. Often feeling sick to my stomach. I have a complication: my neck was also broken and a bony bridge never healed. Each day some part of it is given over to dizziness, although after this long the periods of not being dizzy are increasing somewhat.

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@maryar

Did you ever get answers here? I also would like to connect to someone that has “been there” as I has so many questions and find so few answers.

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Have you tried Binocular Vision therapy for the Nystagmus with your eyes? Are you working?

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@elizabethmm

My Stroke was about two years ago, I had no or little symptoms at the time, except that I suddenly was very dizzy and my Eyes didn’t go where I wanted them to go … today was an especially bad day, I had to leave a card store where I looked for cards, I got nauseous and dizzy, barely made it out of the store … anyone else with those Issues .?

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I find shopping overwhelming as well. My Neurologist told me it is called brain flooding – too much to process at one time. It makes me feel like I’ve run a marathan – I get exhausted and I can’t keep my eyes open – need to head home for a nap.

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@lakelifelady

I am like that after almost three years. I had two brain bleeds after a TBI during a car accident. Shopping brings it on, especially a store where one must scan items visually or be moving while looking around. First, my head feels like it is twice its size, tinnitus starts, my eyes feel blurry and I begin to feel completely overwhelmed with my shoulders tightening up. Often feeling sick to my stomach. I have a complication: my neck was also broken and a bony bridge never healed. Each day some part of it is given over to dizziness, although after this long the periods of not being dizzy are increasing somewhat.

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My Neurologist told me that my head and shoulders tighten because of Nystagmus in my eye – my head and shoulders are trying to hold my world in focus. I get a humming sound in my ears (sounds like the recycled air noise on an airplace) before the headache begins.

I have to shorten the amount of time I go out shopping and I used to love heading to outlet malls to shop-for-sport for a day. No longer!

it has improved from the early days after my stroke but I can maybe shop for a couple of hours at the mall but not during crazy busy times.

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I find it affirming of my experiences that people explain much the same going on with them. It is isolating to feel so Not Normal, but when others who have felt the same express themselves I think, “yes! That is how it is! Some else knows how it is!” Thank you people. Keep posting.

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

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@colleenyoung

How scary this must have been @strokesurvivordynamo. After 911 was called, what do you remember? What happened next?

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I HAD NO WARNING ,I HAD A HEAD ACH SINCE 3PM. THAT WAS THE ONLY THING BECAUSE I DON'T HAVE HEADACHES I collapsed GOING FROM THE KITCHEN INTO THE COMPETER ROOM WHERE MY SON WAS SITTING THE AMBULANCE CAME I REMEMBER THE AMBULANCE RIDE AND INTO THE HOSPITAL WHERE MY HUSBAND HAD TO SIGH A PAPER TO GIVE ME A SHOT I TOOK IT,GLAD I DID. IAM SORRY ABOUT THE CAP THE PAIN IN MY HAND IS BAD SO I SIGN OFF.

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On May 6th, 2015, I woke up just before 3 AM with the worst headache I ever had in my life. I was dizzy and it sounded like water was running in my left ear. Something was very wrong. My daughter was getting ready for bed, so I thought of calling out to her. I could think of her name, but I couldn't say her name. I could say my sister's name, so I found out how to open my door and called out to her using that name. After telling her something was wrong, she was going to call EMS. Being a guy and knowing it was really early in the morning, I suggested waiting five minutes and see if I felt better. She must have been seeing and hearing things that were abnormal too, because she said "No, I'm calling now." I didn't protest.

Within a half hour, I was in the local emergency department. They did a CT scan right away (which was negative) with some other tests, and although the word "stroke" wasn't used, the doctor gave me two choices for which hospital I wanted to be transferred to. Since he had a history with hospital with a neurosurgeon always on duty I went there, and it probably would have been by helicopter if it hadn't been foggy.

I was at the second hospital, a Level 1 trauma center, for about 15 minutes when a neurologist came in. He took a history and then went completely around my body with a pinwheel. When he finished, he said I had a cerebellar stroke, and a MRI later that day confirmed it.

I was in that hospital for five days, and I was in acute rehab until June 2nd. Then I had speech, OT and PT twice a week until October. I remember the first time I did PT in the hospital. It consisted of walking around the nurses station once with two guys bigger than me (I'm 6'1" and 230 pounds) and a walker. I was sweating profusely, dragging my right foot and thinking "It has to get better than this!"

I went from a fairly well coordinated 51 year old to looking and acting like I was drunk constantly. Now, that has improved greatly, but I'm a long way from what I would consider to be "right". My stroke occurred in the right superior cerebellar artery territory. I was right-side dominant. Although my right side feels completely normal, I can't make it function correctly and have intention tremor on that side, meaning it shakes uncontrollably when I get close to doing things with it. Oddly enough, the left side is medically "numb". I feel touch and pressure on that side, but I don't have sensation on the left side. It I want to feel how hot water is, I have to hold my right hand to a running faucet with my left hand. I couldn't drive for six months.

Today, I live as close to a normal life that I can. I drive, shop and travel. I can take care of myself. I wanted to go back to work, but I couldn't live with myself if I caused anyone to get hurt because I couldn't hold up my end of things. I was very lucky to have a job that I could retire from and be taken care of financially. I always grumbled about paying the health insurance premiums, but was very glad I had it when I needed it. I never counted up the bills for a total, but it had to be in the area of $100K. I paid $1,500.

You might ask if I was a candidate for TPA. I was. The problem was I went to sleep about 11 PM the night before. We didn't know if the stroke happened then, sometime in between or just before I woke up, and if it happened shortly after I went to sleep, the window for TPA would have closed. They have to go with the last time you knew things were good.

I had about half of the risk factors. Some days I had HBP, others I didn't. One hospital said years ago I had AFib, but the other hospital did a bunch of tests and couldn't find it. My diet was admittedly awful, and I was telling my girlfriend I was taking an aspirin each day, which I wasn't. My family history isn't good, either. My grandmother died of a stroke, my aunt probably died of a stroke, a cousin (who visited me in rehab) died of a brainstem stroke in January 2016 and my uncle died of a brainstem stroke two months later.

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My husband just had a cerebellar stroke in February. He is still struggling with an upset stomach.

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My partner had a stroke in February. He woke up in the middle of the night very nauseous and threw up the rest of the night. We thought he must have gotten food poisoning as we were out that night. I stayed home to care for him as he was too sick to move. The following day he seemed better…aside from a terrible headache and dizziness. I went to work, came home to him seeming better, but light sensitive. He held some food down, but still had trouble walking, he was so dizzy. We thought he was dehydrated. The next morning, his head still pounding, we went to emergency. They gave him saline and pain killers, but it was not improving. The took him in for a ct scan, which they told us showed a "mass" in his brain, and that they were doing a second scan with contrast to see what was going on. It was then they confirmed that he had had a brain bleed, and a brain shift, which was causing hydropathy. They then called for an ambulance to take him to RCH, where they inserted a shunt to relieve the pressure in his brain. We were in complete shock. He is a healthy 45 year old! Has never smoked, casually drinks, and was in good to average shape. There were no warnings at all.
He spent 10 days in hospital to ensure the spinal fluid was clear and not accumulating in his skull.
Home now for about 6 weeks. He is still dizzy, and feels, what sounds like from being described by some of you, as "disassociated". He gets tired and overwhelmed easily.
We are scared that this will never go away, and not sure what to do. He goes for his first follow up this week, with the neurosurgeon.

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