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.

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

Profile picture for dorisanaya @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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Profile picture for nesita @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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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.

REPLY

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.

REPLY
Profile picture for pek59 @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/
Is there anything I can do to help you find what you need here?
Sue

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Profile picture for Amanda Roe @amandajro

Hello @pek59 and welcome to Mayo Clinic Connect. I am so sorry to read of your post-stroke symptoms and how they are impacting your quality of life. In order for you to connect with others who have been through a cerebellar stroke like yourself, you will notice I have moved your post into this existing discussion:
- Cerebellar Stroke - experience/treatment/recovery: https://connect.mayoclinic.org/discussion/cerebellar-stroke-experiencetreatmentrecovery/

Members such as @susieqintx @strokesurvivordynamo @avmcbellar and @nskinner5 may be able to come back to this discussion and share an update with regard to their symptoms, predominantly headaches they shared about.

What was done for your vertigo therapy and would you say your head pains are headaches or headache like pains?

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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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Profile picture for pek59 @pek59

Age 63, 17 mos post stroke: The head pains are continous, mild to severe, with no relief from headache neurologist (pills, nerve blocks, Botox) after 11 mos. Discharged from physical therapy 1 year ago due to regressing. The vertigo is constant and debilitating. Tried vertigo therapy for 3 mos this spring and felt worse. Quality of life is low. Wondering where to look for relief.

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Hello @pek59 and welcome to Mayo Clinic Connect. I am so sorry to read of your post-stroke symptoms and how they are impacting your quality of life. In order for you to connect with others who have been through a cerebellar stroke like yourself, you will notice I have moved your post into this existing discussion:
- Cerebellar Stroke - experience/treatment/recovery: https://connect.mayoclinic.org/discussion/cerebellar-stroke-experiencetreatmentrecovery/

Members such as @susieqintx @strokesurvivordynamo @avmcbellar and @nskinner5 may be able to come back to this discussion and share an update with regard to their symptoms, predominantly headaches they shared about.

What was done for your vertigo therapy and would you say your head pains are headaches or headache like pains?

REPLY

Age 63, 17 mos post stroke: The head pains are continous, mild to severe, with no relief from headache neurologist (pills, nerve blocks, Botox) after 11 mos. Discharged from physical therapy 1 year ago due to regressing. The vertigo is constant and debilitating. Tried vertigo therapy for 3 mos this spring and felt worse. Quality of life is low. Wondering where to look for relief.

REPLY
Profile picture for strokesurvivordynamo @strokesurvivordynamo

A bit late with the reply but happy to update. My stroke was 6.5 yrs ago (Dec 2015). A NeuroPsych Assessment in spring 2018 confirmed my cognitive difficulties with memory and executive function. It felt very validating to have those results. I’m 80% like the old me, but if we just met you might not even notice my struggles.

I’ve gotten very good at using compensatory strategies and having a better handle on managing my cognitive load to conserve energy.

In March 2021 I sustained a minor knock to the noggin but because I’d had 3 bad fall in the 15 months prior (one that left me with 2 tears to my rotator cuff), that little knock resulted in a serious concussion. It took me out of work for 8-months and back into Vision Retraining Therapy. I can’t say enough good things about the vision therapy - truly a life saver. After 7-months of therapy I was doing a gradual return to work and after 8 weeks was back to regular hours. Worth noting this recovery was as hard or harder than my initial stroke recovery - it really set me back.

Continuing to be comfortable with being uncomfortable has helped me sustain continued improvement.

I’ve chosen to focus my energy on using my story to positively impact health outcomes for others. I am a volunteer at the national level with the Canadian Heart & Stroke Foundation.

In 2019 I was an invited plenary panelist at Canadian Stroke Congress, (https://m.youtube.com/watch) and that same year my stroke journey was published by the Ontario Brain Injury Association magazine (OBIA Review).

In 2020 my story was published by the American Stroke Association (Stroke Connection Magazine). Then in 2021 I was a speaker at the Canadian Women's Heart Health Summit (https://m.youtube.com/watch).

I’ve been part of several advisory groups and working teams over the last few years. I was invited to contribute my stroke story to a book, along-side others, and it was published in 2021 (Not Your Dad’s Stroke ISBN: 9781039119109)

Honoured to share that in I was invited to be on the Community Consultation & Review Panel for Canadian Stroke Best Practices Recommendations Virtual Stroke Rehabilitation module, recently released: bit.ly/3NymlAm

I continue to volunteer for research opportunities to participate as a stroke survivor, and have recently been asked to be a patient partner on a research grant which I hope gets funded.

Wishing others continued recovery. Becoming involved and advocating for improvements to stroke care for patients (that come after me), has been very rewarding for me.

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A recent MRI Impression concluded Chronic infarction in the left peripheral cerebella hemisphere. Mild cerebral leukokraurosis, likely chronic microvascular ischemic changes.

My symptoms have developed over a period of years. They have gotten worse the last 3 years or so and I have balance problems. I have had numerous falls many with injury, daily headaches, memory problems, tremors, double vision and hearing loss with tinnitus. I can’t get into see a neurologist until November 23rd.

Can you shed any light on my situation?

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Profile picture for hammondm99 @hammondm99

I thought it was just me, never discussed it with my doctors, great to understand why. I find that it is more intense the more active or busy I am, not as bad when I have had a day to shut things down. It's been just about 6 months since my stroke, still get that tense feeling in my shoulders when this comes one, trying to learn how to relax and hoping it will go away at some point.

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A recent MRI Impression was: Chronic
infarction in the left peripheral cerebellar hemisphere. Mild cerebral
leukokraurosis, likely chronic microvascular ischemic changes.

I have had these symptoms, severe balance problems with many falls, memory issues, tremors, daily headaches, hearing loss with tinnitus and double vision. I can’t see a neurologist until November 23rd of November.

Can anyone shed light on this information?

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