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 Support Group.

@pek59

Thank you very much! I’m new to this type of thing, but I really did try to find the right category to post under.

Interesting question you posed (below). I specifically referred to “head pains” because they’re not like any type of headache (tension, cluster, sinus …). The headache neurologist is using a migraine diagnosis and treatment, but I wonder if that’s for insurance purposes, because the pains do Not match descriptions of migraine.

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@mia16401 Hello Maria, Welcome to Mayo Connect. I see that you are new here, so I will explain that how Connect is arranged.
Our discussion groups are by topic, and people who have a certain condition meet there and can chat and help each other. You wrote that you have had several strokes, seizures and TIA's and these have caused you to have communication and memory problems.
This is not something to be embarrassed or ashamed about – it is a medical condition.
There are some people on Connect who have recently had strokes and are dealing with the results, you can reach them by clicking this link and making a post:
https://connect.mayoclinic.org/discussion/cerebellar-stroke-experiencetreatmentrecovery/?pg=47#comment-771774
Is there anything I can do to help you find what you need here?
Sue

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My husband had a cerebellar stroke ( left side) 25 days ago . After 23 days in the hospital he was released.
The stroke affected the equilibrium part of his brain.
I am thankful that he has all of his senses, and is able to walk with the help of a walker.
The stroke symptoms are; headaches, dizziness, nausea and vomiting. He almost completed (one day left) the inpatient rehabilitation, he will continue next week the outpatient physical therapy.
He is eating, as we figure out what foods will stay in his stomach.
He has constipation due to so many medications. He is taking 9 medications including a medical patch, as these give him side effects too.
Thank you for reading.

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My husband had his stroke in June 2022. After a day of the worst headache of his life and vomiting, we went to see his doctor, who tested him for a stroke using the FAST technique. He didn't have any of the symptoms and was treated for a migraine. It made sense since I suffer from migraines & have those symptoms. After a couple of hours, his doctor called him to see how he was doing, when I told him he still had a terrible headache and was confused, he instructed me to take him to the ER as he could have a brain bleed; that was the diagnosis at the ER. He was flown to a stroke facility 100 miles away and had a Craniotomy the next morning to remove a 1/5" blood clot from his left side. At his last appointment with his Surgeon, he reported that my husband's brain has shifted back center as it should be. Thankfully, he's doing well. Physically, he's very strong. Some days he seems to get things mixed up; is this now how his brain works? Is it normal for him to have days that he has to "think harder" to accomplish a task and not so much on other days? Is it related to the task he's doing and past experience with that task? I'm seeking information to support him, help his brain get stronger. I also worry about dementia later on in life for him, how can we combat that? Thank you.

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@nesita

My husband had a cerebellar stroke ( left side) 25 days ago . After 23 days in the hospital he was released.
The stroke affected the equilibrium part of his brain.
I am thankful that he has all of his senses, and is able to walk with the help of a walker.
The stroke symptoms are; headaches, dizziness, nausea and vomiting. He almost completed (one day left) the inpatient rehabilitation, he will continue next week the outpatient physical therapy.
He is eating, as we figure out what foods will stay in his stomach.
He has constipation due to so many medications. He is taking 9 medications including a medical patch, as these give him side effects too.
Thank you for reading.

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Our experience is very similar- cerebellar stoke (right side) six months ago. We spent 22 days in ICU, then 14 days of inpatient rehabilitation, followed by outpatient physical therapy for a couple months. Little by little he was taken off the medications. The first few months were extremely hard for both of us but he kept working at getting better, going to therapy, exercising at home and he's improved tremendously; I didn't understand how I could help him at first and I still struggle. Don't give up hope, which is hard under our circumstances. With time your husband will continue to improve and be sure to take care of yourself while on this journey. Best of luck to both of you.

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@dorisanaya

My husband had his stroke in June 2022. After a day of the worst headache of his life and vomiting, we went to see his doctor, who tested him for a stroke using the FAST technique. He didn't have any of the symptoms and was treated for a migraine. It made sense since I suffer from migraines & have those symptoms. After a couple of hours, his doctor called him to see how he was doing, when I told him he still had a terrible headache and was confused, he instructed me to take him to the ER as he could have a brain bleed; that was the diagnosis at the ER. He was flown to a stroke facility 100 miles away and had a Craniotomy the next morning to remove a 1/5" blood clot from his left side. At his last appointment with his Surgeon, he reported that my husband's brain has shifted back center as it should be. Thankfully, he's doing well. Physically, he's very strong. Some days he seems to get things mixed up; is this now how his brain works? Is it normal for him to have days that he has to "think harder" to accomplish a task and not so much on other days? Is it related to the task he's doing and past experience with that task? I'm seeking information to support him, help his brain get stronger. I also worry about dementia later on in life for him, how can we combat that? Thank you.

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Hi Doris,

I'm glad your doctor followed up. I also passed the FAST test. I had a stroke in the cerebellum region of the brain in 2015. A Neuro Psych Assessment can help determine what deficits your husband has. Not sure where you're located, in Ontario/Canada mine was $4,000 back in 2018. It took me about 6-months post CVA to realize some of the struggles I was having (similar to your husband). I have struggles with Executive Function (memory, planning, etc.).

A specialized eye exam with a neuro optometrist was very helpful for me and diagnosed Post Trauma Vision Syndrome. I did vision retraining for a long time. I also had a Central Auditory Processing Exam with an Audiologist that helped me better understand why noisy/busy environments were overwhelming for my brain. I hope these testing options help you tease out more information.

I had Occupational Therapy and used the CONSTANT THERAPY (speech and cognitive therapy) App during my sessions, the OT had me download the App and use it at home instead. There is a free trial so he can try it out. It was very beneficial for me.

Sharon

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Hi Sharon,

Thank you! Your willingness to share this information is a blessing for all of us reading this.

I'll share this with my husband and hopefully he'll agree to move forward with the testing options. I've learned I need to be careful how I word things or he won't cooperate; and I'm careful not to tell him what to do, which is hard for me because I see him struggle and want to help him. The things you have experience are what we're working through. I'm excited to have the opportunity to move forward with learning more and in turn sharing what I learn with others as well.

We have a fairly high debt now from the bills not covered by insurance; I opted for the lower deductible this year in anticipation of more testing which hopefully will help with the costs. Regardless, it's important that we increase his chances of recovery and improve his daily living as much as we can.

With much appreciation,
Doris

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