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.

@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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Hello @kleo4 and welcome to Mayo Connect

I can only imagine what a frightening experience this was for you and your partner. You mentioned that you are scared that this will never go away. What has your partner's doctor said regarding the recovery progress for this type of brain bleed? A lot of people have had good results with physical and cognitive therapy after a stroke or brain bleed. When you see the neurosurgeon this week, these are good questions to bring up.

Here is a link to a Mayo website that discusses stroke rehab, https://www.mayoclinic.org/diseases-conditions/stroke/in-depth/stroke-rehabilitation/art-20045172. Here are some other Mayo Connect discussions about strokes and brain bleeds that you might find helpful,
https://connect.mayoclinic.org/discussion/brain-bleed/ and https://connect.mayoclinic.org/discussion/cerebellar-stroke-experiencetreatmentrecovery/

I hope that you and your partner are able to put your fears aside for just a time until you have the opportunity to talk with the doctor.

I would love to hear from you again. Will you post again?

Teresa

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@hopeful33250

Hello @kleo4 and welcome to Mayo Connect

I can only imagine what a frightening experience this was for you and your partner. You mentioned that you are scared that this will never go away. What has your partner's doctor said regarding the recovery progress for this type of brain bleed? A lot of people have had good results with physical and cognitive therapy after a stroke or brain bleed. When you see the neurosurgeon this week, these are good questions to bring up.

Here is a link to a Mayo website that discusses stroke rehab, https://www.mayoclinic.org/diseases-conditions/stroke/in-depth/stroke-rehabilitation/art-20045172. Here are some other Mayo Connect discussions about strokes and brain bleeds that you might find helpful,
https://connect.mayoclinic.org/discussion/brain-bleed/ and https://connect.mayoclinic.org/discussion/cerebellar-stroke-experiencetreatmentrecovery/

I hope that you and your partner are able to put your fears aside for just a time until you have the opportunity to talk with the doctor.

I would love to hear from you again. Will you post again?

Teresa

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I just found this site, i had my stroke 10 months ago. What a rollercoaster ride. I ve got therapy and it takes awhile to get ready. Im glad i found this site, look forward to reading your experiences.

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Hi, I had my stroke 9/11/2017. It has been almost seven months now. I feel like I will never be the same again… I guess I think I am about 75% normal, if that makes any sense.

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@kleo4

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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Hi, I am scared of never being the same too! 7 months and I am still not the same. Better, but not the same. I spent two months in the hospital. I nap daily now and do about an hour of exercise five or six days a week. I do everything I think I can to help my body heal. I also had no signs or symptoms of stroke until I fell on the floor with one.

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@kleo4

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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It's a hard one to recover from, mine was 10 months ago. You will make progress but its slow. Everyone is different but you have to keep stretching the mussels, you will have set backs, for example i started shock therapy and lifting weights. My body went into defensive mode and i regressed for 3 weeks. The spasticity increased, but i kept working on it and it started to relax. It set me back but i think i will reach a new level. If you let it get you down it will. Things are bad but always can be worse. I suggest finding a pool. You got to build up your endurance, i would keep a few light chairs around, because i would be winded after a few minutes of walking. Now i can go 20 minutes plus. Last thought, your relearning everything, you have to do it over and over, no stress, eat healthy, you will see improvements. Im 57 and my eyes open, since i have to face the day, im going to hit it head on.

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@maryar

Hi, I had my stroke 9/11/2017. It has been almost seven months now. I feel like I will never be the same again… I guess I think I am about 75% normal, if that makes any sense.

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Yes that make sense. You never will be the same. You will be better. You dont need to think about the future. Just make it through each day.

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Hello @thinkitseeitdoit @maryar @mikejack

I want to thank you all for sharing your experiences about stroke and recovery. I know that this will be helpful to @kleo4 @gmike and others who come to this discussion group to understand that they are having similar experiences and feelings of others who have walked down this road of stroke recovery.

I would appreciate any of you sharing what therapy, advice, etc. that you have received that was the most helpful to you in your recovery. Was PT, OT, cognitive therapy involved in your post-stroke therapy?

I look forward to hearing from you again and helping me better understand the recovery process.

Teresa

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@hopeful33250

Hello @kleo4 and welcome to Mayo Connect

I can only imagine what a frightening experience this was for you and your partner. You mentioned that you are scared that this will never go away. What has your partner's doctor said regarding the recovery progress for this type of brain bleed? A lot of people have had good results with physical and cognitive therapy after a stroke or brain bleed. When you see the neurosurgeon this week, these are good questions to bring up.

Here is a link to a Mayo website that discusses stroke rehab, https://www.mayoclinic.org/diseases-conditions/stroke/in-depth/stroke-rehabilitation/art-20045172. Here are some other Mayo Connect discussions about strokes and brain bleeds that you might find helpful,
https://connect.mayoclinic.org/discussion/brain-bleed/ and https://connect.mayoclinic.org/discussion/cerebellar-stroke-experiencetreatmentrecovery/

I hope that you and your partner are able to put your fears aside for just a time until you have the opportunity to talk with the doctor.

I would love to hear from you again. Will you post again?

Teresa

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Thank you, Teresa. We are headed there this afternoon. I will let you know how it goes. Matt, my partner, is anxious about it, too. I hope we will get good news.

Karen

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Nobody told me anything, i checked out of the hospital after 14 days and crawled on my stomach to get around when i first got home. I had to learn everything all over again. I have my days filled with therapy, there is no guide book, you have to be pro active. If you want to know what therapies im doing and what I've found works the best for me, let me know. I got go i have another apptoiment at 1

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@hopeful33250

Hello @thinkitseeitdoit @maryar @mikejack

I want to thank you all for sharing your experiences about stroke and recovery. I know that this will be helpful to @kleo4 @gmike and others who come to this discussion group to understand that they are having similar experiences and feelings of others who have walked down this road of stroke recovery.

I would appreciate any of you sharing what therapy, advice, etc. that you have received that was the most helpful to you in your recovery. Was PT, OT, cognitive therapy involved in your post-stroke therapy?

I look forward to hearing from you again and helping me better understand the recovery process.

Teresa

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Has a anybody talked about depression, i know i had to get some help from my doctor to get over mine. I also have just come to realize as my 1 year approaches its harder and harder to stay excited and if i let it get me down it will. Im aware of it, i won't hesitate seeing my doctor if i need to. Its hard enough to recover from this stroke i don't want to fight depression.

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