Cerebellar Stroke - experience/treatment/recovery

Hi @cerebellarstrokespouse I have had an AVM involving the cerebellum, the same part of the brain when one drinks so my balance is affected. I get dizzy with motion sickness. I have no cognitive deficits only physical. Because there are not many survivors, much is unknown. The doctors have no definitive treatment. So basically I have been learning on my own by trial and error for the last 4 years. Improvements are possible. Recovery is difficult but a very slow process. Each case is different. It seems your husband has made an amazing physical recovery. Perhaps there is therapy available to help cognitively. Would a speech therapist help with that? I would research where to get cognitive help then tell your doctor to write the order for your husband to get an evaluation. I hope this helps with your search to find answers. I wish you both well.

@avmcbellar, thank you for your quick and kind reply. I hope you continue to persevere and your recovery progresses. My husband’s PCP’s nurse summarized his issues as a decline in executive function. He expresses unprovoked anger at me, has a conversational style that is a monologue, is occasionally giddy, and shows much less empathy for hurting people than before the stroke. So, in that sense, the issue is affect rather than cognition. From what I’ve read online, there is mention of a drug therapy that is at best speculative. The only other option is a psychologist. But, my husband doesn’t see a problem and hasn’t listened to input from me or his siblings. I’m hoping someone here may have insight and experience, or be aware of emerging treatments and/or the best people in this area.

@avmcbellar, thank you for your quick and kind reply. I hope you continue to persevere and your recovery progresses. My husband’s PCP’s nurse summarized his issues as a decline in executive function. He expresses unprovoked anger at me, has a conversational style that is a monologue, is occasionally giddy, and shows much less empathy for hurting people than before the stroke. So, in that sense, the issue is affect rather than cognition. From what I’ve read online, there is mention of a drug therapy that is at best speculative. The only other option is a psychologist. But, my husband doesn’t see a problem and hasn’t listened to input from me or his siblings. I’m hoping someone here may have insight and experience, or be aware of emerging treatments and/or the best people in this area.

It's been a while since I have been out here, thought I would check in today and saw your post. I'll start off by saying this is my opinion only based on what I feel, and still feel to some extent. I had some issues with anger and empathy towards others for a few months following my stroke. As with your husband, I was able to progress fairly quickly getting to a point where people didn't notice the effects of my stroke. That being said, most things that were simple prior to my stroke were much harder for a while after the stroke. That had a way of making me angry and I probably took it out on my family at times. My opinion is, unless you are a person that has experienced a stroke, you really don't understand it and what it takes to get better. It's a life changing event, for some more than others, but you deal with the effects every day and life is more challenging than in the past. What I noticed is that you really are alone out there with dealing with your challenges. I get the feeling at times that people either think what you deal with is no big deal (you are not dying) or they just don't want to engage when you want to talk about the challenges. That had a way of impacting my empathy for others, unless you were in my direct family, I really didn't care what you were going through (my mother told me I wasn't being very nice on a few occasions!). In my case, that has improved over time as things get easier and life has gotten more normal for me. Having someone to talk to that has gone through a stroke and can relate helps.

@hammondm99, thank you for your reply. It helps to know that this is part of the process for many and that while nothing is certain, there is a good chance things will get better.

Just this morning, I got a sense of how things have changed for my husband. He explained how different it is to go on a 20-mile bike ride - he’s constantly conscious of the mental images flying by, the need to balance, and the need to watch for cars. All of these “dailyness” things used to be automatic.

Now that he’s back at work, he has had to back off cycling, to have the neuro energy to concentrate on a computer screen. He’ll work for a bit, then rest his brain, and work a bit more. Concentration is coming back, albeit slowly. He longs for the time when a two-hour bike ride is an invigorating start to the day, rather than a draining event that defines the day.

Thank you for taking the time to write. You articulated so well, why anger, etc. can be a response even when it seems to others that things are going well. Your post was a real source of encouragement to me and helped me to interpret what my husband had been telling me about his experiences.

Sorry for the long post...
I was 46 at the time no prior history..

Glad I found this thread. I had my stroke on July 5th 2018. None of the FAST symptoms at all. Apart from pain in my neck for about two weeks prior, which I put down to over doing the weights at the gym.

I woke up at 5am with a groggy type of feeling at the back of my head. Went to get a glass of water then all of a sudden the dizziness hit. It was beyond anything I can describe. Then I lost control of my legs and then vomiting arrived. My daughter heard my calls for help and my wife called the ambulance.

Next thing I know , I woke up in hospital. CT showed nothing, MRI showed stroke in left and right cerebellum , thalamus and parietal lobe.
Given a strong antihistamine for dizziness, it made me high. The dizziness went the next day but not completely. Apparently my speech was slurred but I do not remember this.

From what I was told, CT does not show cerebellum strokes too well because of the location near the bone, can anyone confirm this? Anyhow as a result the stroke was only discovered hours later, too late for TPA.

Further investigation and a bubble echo revealed PFO. Head and neck CTA and legs showed no concerns. Doctors put me on Clopidogrel and Statin, even though my blood appeared normal. Was sent home two days later although I was not ready to go home.

As I could walk and talk , no help was offered to me. Doctors were unsure ( or did not want to commit ) of what activity/exercise I could do. This is still the case today ( December 18 )

I feel well enough in myself but initially I was very tired, exhausted to be honest.

The biggest thing is that my mood has been affected, fortunately I have a wonderful wife!

I do get depressed but I force myself to get on with things, it is hard, some days I feel like checking into psych ward just for a break from reality for me and my family. I get easily distracted, once I remember something it is not an issue, it is more things like remembering to call someone, I will remember hours later or the next day. Very frustrating.

In October I started running again, something I used to do a few years ago. This has really helped with my moods but it is so hard. I am now doing 5k three times a week.

I am waiting for my cardio appointment in FEB 19 to confirm closure of the PFO, the main concern is recurrence of stroke until PFO is closed. The neurologist did not seem concerned but as I said to him, unless you have a stroke understanding the anxiety is rather difficult.

I just want to say to everyone, stay strong, find a distraction if you can, for me it helped but of course our journeys and experience are all unique to us. Don't let anyone ever judge you or tell you where you should be in your recovery.

@trkuk its been a while since your post, but we have some similarities in our stories. I had a cerebellar stroke in September, passed the FAST and other testing too. In 2018 I found out I had a dural arteriovenous fistula that wasn’t supposed to cause problems, but welcome to 2020. On 9/11/2020 I went to the ER with an odd dizziness coupled with severe anxiety. It was like I wasn’t in my body. I had a clot in the jugular bulb/sigmoid sinus, but no stroke. CT, MRI, and angiogram showed good blood flow to and from the brain, so it was decided I would come back later for the fistula closure. The surgeon said he wanted to further view the images to decide which vessel was best to embolize. Five days later I was back with the same symptoms, only this time I had an infarct. My fistula was closed the next day. You’re right, the anxiety after is excruciating. I, too, was a “walkie talkie” so I wasn’t given much follow up. I was told to join support groups, but they failed to mention the resources they gave me no longer met due to COVID. I wanted to know if you experienced vertigo at all afterwards.