Cerebellar Stroke - experience/treatment/recovery

@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

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.

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.

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.

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

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

Hello, my brother had a cerebellar stroke in March, 2018 at age 62. He still has ataxia in both arms and balance issues, can not walk without help. So is restricted to a chair and in a nursing home. Just wondering if anyone else has experienced bilateral ataxia, and if so, have you found any treatment for it that helps?? He gets very frustrated because he can not use his phone (does have voice activated Alexa for communication), or write, etc. His local doctor has finally said he would look into sending him to Mayo/Rochester to a movement disorder specialist--- Thank you for any information
Jackie Holm

Pain after Stroke
ALL meds have been tried and failed.
Neurologist informs me that there is no medicine or treatment for post stroke pain and that I cannot call it neuropathy.
It's "brain-Pain" sending constant "electrocution-like" waves of pain - eye lid, face, ear, shoulder, arm, hand and fingers - down into leg.
Doc calls it: Re-expression of original stroke.
All those areas feel like when your arm or leg fells asleep and then awakes with that 2-5 second numbness and pain.

Hello @pmorgigno, and welcome to Mayo Clinic Connect. Your pain sounds concerning, and I understand that you are frustrated.

First, you will notice I have moved your post into an existing discussion on stroke, which you can find here:
- Cerebellar Stroke - experience/treatment/recovery: https://connect.mayoclinic.org/discussion/cerebellar-stroke-experiencetreatmentrecovery/

What you share sounds similar to Complex Regional Pain Syndrome, which can occur after a stroke. Here is some information about it in case you might find it helpful:
- Complex Regional Pain Syndrome: https://www.mayoclinic.org/diseases-conditions/crps-complex-regional-pain-syndrome/symptoms-causes/syc-20371151

Have you heard of this before? Do the symptoms sound familiar?

As far as Doris’s mention of dementia later in life ... Our two vascular neurologists offered no information on dealing with any aspect of the stroke disease. After my husband had a cerebellar stroke, he had several months of sessions with a speech pathologist for cognitive/memory impairment. She (not the neurologist) recommended a neuro psychological evaluation. That report noted “major neuro cognitive disorder.” We weren't told what that means, and I assumed it was simply the term for the memory damage. (By chance, several months later, I read (at bhwa.com--Better Health While Aging) that it's the term for dementia. I believed that my husband was already dealing with a lot, so I didn’t tell him this. Later, when the topic happened to come up, I asked him if he’d want to know if he had dementia. He said, “No. I’m already dealing with enough.” After many hours of searching online over nine months, I finally read that when it's vascular/stroke-caused dementia, there is nothing to do about it. But at the same time of the evaluation, the vascular neurologist said, "It might not be MND." So we will see the neurologist at the nearest large medical center whose specialty is memory--to leave no stone unturned. And second opinions have been a real help in the past. (She's booked out until January 2024. Always ask to be on the “cancellation list.") Even if you don’t have the diagnosis yet, the Alzheimer’s Association provides master's-level clinicians on their 24/7 Helpline (800.272.3900). They can guide you. The person I spoke with was very good.