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.

@avmcbellar

Hi @acoylenp01 It is a long road to recovery but I’m glad to hear you are determined to fight back. Having a positive attitude certainly helps. Yes, I had the same issues with dizziness and balance. My AVM ruptured in the cerebellum where 5 vessels were connected. I had 3 surgeries before my AVM was repaired. I too tried to find answers online but I couldn’t find any valuable information. Since my medical team had no answers I relied on myself to learn what worked for me by trial and error. At first I had no balance and needed someone with me at all times. I sat in the wheelchair for transportation. I was exhausted after 2 hours. My legs felt like lead. I tried to keep active with what little I could do physically. I gradually improved to a walker then cane. Now I can walk in the house without any device but need a cane outside for unleveled surfaces like the lawn and gravel. Be persistent with physical activity no matter how difficult the dizziness gets. It’s not easy. Along with sitting exercises, I try taking supplements. I do as much as I can tolerate. Let me know if you have any specific questions I can help you with. I did experience losing my taste. I became hypersensitive to the sweetness in foods. I had lost my appetite because all foods tasted overly sweet to me. The doctors had no idea why but after 3 years I recovered on my own. Good luck. I am glad to hear from you and remember I am happy to share what worked for me. I do not drive. With my husband’s support I continue to be positive to try different things.

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Thank you so much! Hearing these stories of recovery is the BEST medicine because as you point out, a positive attitude is the most important thing to hem facing this diagnosis- I appreciate very much your willingness to share your experiences and advice with me and I will definitely reach out – already have a question for you: have you tried vestibular therapy?
Thanks again ❤️

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@acoylenp01 No, I have not tried vestibular therapy. I am seeing my PCP this Monday and planning to ask. I tried finding an EMT md who has the experience but could not find anyone nearby. Will let you know. I have had physical therapy in an outpatient and home health care setting. It helped me to progress from wheelchair to cane. I plan to have more home care PT to learn to ambulate outside my new home on uneven surfaces. Has any doctor recommended the vestibular therapy to you? While I was in the ICU no one mentioned anything to me. After a month, during my follow up check up with my neuro surgeon, he told me to do as much PT for walking as I could tolerate. I always have pushed myself to do the home tasks of cooking, cleaning, and laundry. I do get tired but plan my tasks with intermediate breaks. Just 5 months after my AVM rupture I was a volunteer tutor for a semester. I started doing the tutoring again and plan to be a substitute teacher.

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Hello!! I'm A Stroke Survivor Too. I Suffered My Stroke During A 6 cm Tumor Removal In 2002 How R U Doing??

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Hi @strokesurvivordynamo, I am wondering how you are doing and what type of treatments you underwent recently, if any. I had a cerebellar aneurism 4 years ago and am still struggling to find answers for my recovery which has been a long slow progress so far. My aneurism also brought on my neuropathy as a result of one of my surgeries. I hope you are doing well in dealing with your stroke.

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Thank y'all for sharing. Very informative sharing.

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On Feb 21, my husband had a cerebellar stroke (posterior lobe, ischemic with a hemorrhagic conversion and considerable brain swelling).

All things considered, his physical recovery has been remarkable. For example, he is cycling 30 miles a day. But, there are cognitive deficits that his primary care physician says are indicative of Cerebellar Cognitive Affective Syndrome.

Has anyone had experience with this? Is continued healing possible at this point? From what I’ve read online, there don’t seem to be any available treatments. Is that correct?

Thanks in advance for any input others may have!

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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.

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@avmcbellar

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.

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@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.

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@cerebellarstrokespouse

@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.

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@cerebellarstrokespouse I am so sorry for all you and husband are going through. It is common with cerebral stroke victims to have personality changes. Perhaps seek an evaluation from a speech therapist or occupational therapist. If they cannot offer help with exercises they may be able to direct you to a professional who can. I don’t know if a doctor using neuroplasticity can offer assistance. You may want to research neuroplasticity in your area. I believe that a psychiatrist will treat with drug therapy. Use extra caution when experimenting with drugs.

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@cerebellarstrokespouse

@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.

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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.

Liked by avmcbellar

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@hammondm99

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.

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@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.

Liked by avmcbellar

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@cerebellarstrokespouse

@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.

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Sounds like your husband is making great progress! Awesome that he is able to get that much time in the bike seat so soon after the stroke! My advice is make sure he focuses on the gains he makes, don't let him get frustrated or worry about the challenges or setbacks he has had to endure since the stroke. He sounds like the kind of guy where it will just take time and repetition to get back close to where he was pre-stroke. For what it is worth, I have been playing guitar for the past 35+ years and I totally lost the ability to hold a pick, find the strings and have any sort of rhythm after my stroke. It's been (a short) 30 months since my stroke and I am probably 80% of the way back to where I was with the guitar. I am going through one of those periods where I make a lot of progress in a short period, so I am having fun! I am sure with a lot of work, I will get close to 100% in due time. Amazing how the brain adapts!

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@trkuk

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.

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@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.

Liked by avmcbellar

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@snoopyrn

@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.

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Hi @snoopym, thanks for reaching out.

Very frustrating – almost like being thrown out on to the street. Are you are in the US? Here in the UK groups are not really meeting due to COVID – in fact there were no groups in my area anyway, unless I wanted to join a group for patients in their 80's

Regarding Vertigo, it went fairly quickly – I did have some issues with depth perception on my left side and patterned objects, for example if I were to put a cup on a table, I would continue to try and put it down even though it already was, if that makes sense. This happened only with my left side for about a month. I then had a really weird thing that when I was travelling ( as a passenger ) in a car and the car stopped, for me it felt like it was still moving for a few seconds afterwards.

I found that my Neurologist was somewhat dismissive, he would sit there saying that the clots were not that bad and you could not possibly have had these issues, blooming idiot!

My memory is not what it was and my eyesight was definitely worse afterwards.

How is your vertigo, is it all the time? How are you managing?

Liked by avmcbellar, snoopyrn

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@trkuk

Hi @snoopym, thanks for reaching out.

Very frustrating – almost like being thrown out on to the street. Are you are in the US? Here in the UK groups are not really meeting due to COVID – in fact there were no groups in my area anyway, unless I wanted to join a group for patients in their 80's

Regarding Vertigo, it went fairly quickly – I did have some issues with depth perception on my left side and patterned objects, for example if I were to put a cup on a table, I would continue to try and put it down even though it already was, if that makes sense. This happened only with my left side for about a month. I then had a really weird thing that when I was travelling ( as a passenger ) in a car and the car stopped, for me it felt like it was still moving for a few seconds afterwards.

I found that my Neurologist was somewhat dismissive, he would sit there saying that the clots were not that bad and you could not possibly have had these issues, blooming idiot!

My memory is not what it was and my eyesight was definitely worse afterwards.

How is your vertigo, is it all the time? How are you managing?

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@trkuk I’m in the US. I’m a nurse at the hospital where I was treated. The only useful information I was given was by the stroke coordinator RN. She advised me to only go to the grocery store for a couple items or I’ll be overwhelmed. I didn’t think that would be true, but it’s a stressor. I found a Facebook group called SASS (Seriously Awesome Stroke Survivors) that’s based in Nashville (where I live), but they also no longer have live meetings. We did do a Zoom yoga session that was nice. This forum has been nice because so many on here are going through the same things. Even though our stories and recoveries are all different, we can relate to each other. The stroke neurologist did say recovery would be a rollercoaster, and he wasn’t kidding. He said he would’ve never known I had an event by talking to me, and that I didn’t need follow up (I saw him one month post). However, I’m going to ask to be referred to our balance center to have inner ear and eye tracking tests done. I’ll get some bouts of dizziness if I do a lot of turning and sometimes vertigo that hits out of nowhere (not as often though). It’s been almost 10 weeks, and I do feel better than I did. I have no deficits as far as memory and motor skills, and my concentration has very much improved. I had migraines before and they are continuing, along with other types that are frequent. I’ve read on here that some continue to have vertigo 2.5 years later….yikes! It’s so scary when it happens since the dizziness was my only symptom. My fistula is closed, so you’d think that would give me relief since that’s what caused the event, but it’s still so new. I’ll have a repeat angiogram in the Spring also. I’ve had a few CTs and MRIs since September, and I’m told they look good. The anxiety has been the worst part of all this, but I have gotten better. This year, even the last few months, have been hard. I had another health scare in June (blood clot caused from oral contraceptives), lost my dad in July suddenly, and then my latest incident. I have found a therapist which is helping, and last week I started an online Tai Chi course (I read it’s been helpful with other stroke patients, and also with migraines). I’m able to workout, but I try to not do too much in one day. I’m definitely grateful to have come out of this as good as I have. This all happened 5 days before my 44th birthday, and I’d had no major health issues aside from having my appendix out and the dAVF that wasn’t supposed to be aggressive. I’m so much more appreciative of life and the things I have now.

How are you? Thank you for responding, it’s helpful to be able to talk to others who have experienced this. I participate in another online group called AVMsurvivors.org and a lot of people on there are from the UK. It’s nice to “meet” you!

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