1. < Stroke & Cerebrovascular Diseases

Cerebellar Stroke - experience/treatment/recovery

Posted by strokesurvivordynamo @strokesurvivordynamo, Apr 21, 2017

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.

nskinner5 | @nskinner5 | Feb 25, 2021
In reply to @avmcbellar "Hi @nskinner5 the term cerebellum refers to the part of the brain called the cerebellum. Cerebral..." + (show)
@avmcbellar

Hi @nskinner5 the term cerebellum refers to the part of the brain called the cerebellum. Cerebral means the brain so the cerebral artery means an artery located in the brain. The cerebellum is more specific with location in the brain where as cerebral is general. I hope this helps. Toni

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My problem USA severely narrowed rt. Cerebral artery. I think I have had 2 tia’s. I plan
To go to Mayo Clinic in March. Hopefully, they can advise me on next best steps which
I hope is endovascular surgery to open up the artery with coils and stents. Nancy5

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steveinak | @steveinak | Feb 25, 2021
In reply to @avmcbellar "Hi @steveinak oh so sorry to hear of your stroke. I had my AVM in September..." + (show)
@avmcbellar

Hi @steveinak oh so sorry to hear of your stroke. I had my AVM in September as well but 3 years prior. I have learned that strokes or aneurisms in the cerebellum region is not common at all. Finding a physician who has that specialty is very rare. I don't know where you live but your best bet would be to go online or start making phone calls to find your doctor. In Florida where I live I have not found such a physician. After a few years I decided to help myself using the trial and error method. While I was in the ICU(nearly one month) after my AVM, I had a team of physicians consisting of neurologists and neurosurgeons. I was disappointed to get a lot of uncertainties for answers. Like you, I was very active with routine physical exercises prior to my AVM. I wanted guidance in order to get back to my routines but instead I was left with many unanswered questions. I have come to realize there are not many survivors for finding answers. Another reason why answers are hard to come by is that there are so many locations for strokes to occur which can result in different deficits. May I suggest to start trying things yourself to find out what works best. Much of the generalized information regarding strokes can be found online. I don’t take any medications and don’t feel I need to. If you do, then you will be in need of a physician. I also found the Epely maneuver to be of no help. I do feel the imbalance in my ears. Have you seen an ear physician for an assessment? I have had physical therapy 3 different times in different settings, home care and outpatient. I initially was in a wheel chair. My recovery has been a slow progression but nonetheless I am able to walk now using a cane for unleveled surfaces like the lawn and graveled driveway. Indoors I do not need any device for walking. You were lucky to have been mildly affected. My symptoms limit my mobility with the muscle weakness, dizziness, incoordination, nausea and vomiting, motion sickness, and double vision. I exercise using a mini cycle and portable elliptical machines at 10 minute intervals. I wish I can do longer but my body can’t tolerate the heat. I do use a table fan each time. Perhaps slow increments will be tolerable. I would like to increase time and intensity using other exercises that I could do. Any recommendations will be appreciated. Perhaps we can help each other through our experiences. I will be happy to answer any questions you may have. Best wishes to you in finding answers for continued success with your recovery. Toni

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Hi @avmcbellar, I too am sorry to hear of your AVM event. The unanswered questions are certainly frustrating. The brain, I guess, is just so complicated and vast and mysterious, there are just so many unknowns when it comes to stroke recovery. I am glad to hear that you are walking, with and without the aid of a cane. Mobility is certainly paramount to our well being. I did visit an ENT, and an Audiologist after my first stroke (misdiagnosed). I really don't believe I have anything terribly wrong with my vestibular system, save for the brain part. My PT has been great at quizzing me on various problems I have encountered, and whether they are vestibular or neurological. I think you are on the right track with your exercise intervals of just 10 minutes, that is key and it's great you are keeping that up. I am doing just 15 minutes at a moderate level on a stationary bike, and that's enough for me for now. It is frustrating, somewhat, for me because I lead a Spin class at a downtown gym for 8 years (2011-2018). That level of intensity is what I think I should still be able to do, guess I'm not 25 anymore, or 55 for that matter...LOL. I will also mention that I contacted a person here in Anchorage that ran a Stroke Support Group before COVID hit, and she recommended swimming to me, she said it saved her life. So, I grew up in the water in various places down in Texas, so I thought this might be the answer. I went to a local pool that had just opened up from COVID restrictions, and I did 2 laps and thought my head was going to explode. I got out of there and never went back, it was just too much head movement for my brain to deal with. If you have not looked at Brain.Rehab, you might want to give that a try. I got this website from the book, Stroke Rebel, by Linda Radestad. She and her Physical Neurologist started the website to help stroke survivors recover. It does cost $20 a month, but you can check out the website, and view the introductory video for nothing. The site, once you pay to be a subscriber, is mostly just an incredible number of videos of the Neurologist, and sometimes her too, talking about various aspects of stroke recovery. I have gotten some good information out of it, but the number of videos and the way they are organized is a bit overwhelming. You might want to check it out, just Google Brain.Rehab. If you do get a subscription and you decide it's not for you, you can cancel anytime.

Steve

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1 reply
avmcbellar | @avmcbellar | Feb 25, 2021
In reply to @steveinak "Hi @avmcbellar, I too am sorry to hear of your AVM event. The unanswered questions are..." + (show)
@steveinak

Hi @avmcbellar, I too am sorry to hear of your AVM event. The unanswered questions are certainly frustrating. The brain, I guess, is just so complicated and vast and mysterious, there are just so many unknowns when it comes to stroke recovery. I am glad to hear that you are walking, with and without the aid of a cane. Mobility is certainly paramount to our well being. I did visit an ENT, and an Audiologist after my first stroke (misdiagnosed). I really don't believe I have anything terribly wrong with my vestibular system, save for the brain part. My PT has been great at quizzing me on various problems I have encountered, and whether they are vestibular or neurological. I think you are on the right track with your exercise intervals of just 10 minutes, that is key and it's great you are keeping that up. I am doing just 15 minutes at a moderate level on a stationary bike, and that's enough for me for now. It is frustrating, somewhat, for me because I lead a Spin class at a downtown gym for 8 years (2011-2018). That level of intensity is what I think I should still be able to do, guess I'm not 25 anymore, or 55 for that matter...LOL. I will also mention that I contacted a person here in Anchorage that ran a Stroke Support Group before COVID hit, and she recommended swimming to me, she said it saved her life. So, I grew up in the water in various places down in Texas, so I thought this might be the answer. I went to a local pool that had just opened up from COVID restrictions, and I did 2 laps and thought my head was going to explode. I got out of there and never went back, it was just too much head movement for my brain to deal with. If you have not looked at Brain.Rehab, you might want to give that a try. I got this website from the book, Stroke Rebel, by Linda Radestad. She and her Physical Neurologist started the website to help stroke survivors recover. It does cost $20 a month, but you can check out the website, and view the introductory video for nothing. The site, once you pay to be a subscriber, is mostly just an incredible number of videos of the Neurologist, and sometimes her too, talking about various aspects of stroke recovery. I have gotten some good information out of it, but the number of videos and the way they are organized is a bit overwhelming. You might want to check it out, just Google Brain.Rehab. If you do get a subscription and you decide it's not for you, you can cancel anytime.

Steve

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Thank you, nice to hear from you Steve @steveinak. You have given me good information to follow up. I will check out the website. By the way, I was 53 when dealing with my AVM. Not only are we lucky to be survivors but we are lucky to also have no cognitive deficits. Our disabilities are purely physical. Hey, I don’t count forgetfulness. It happens occasionally due to aging, right😀? For the most part I have learned to rely on myself for answers. I have looked back since the onset of my AVM and at the timing of my symptoms. It was just last month I discovered the answers my doctors did not provide. Some experts they were. At the time of my AVM, while in the hospital, I did not know what to expect and wanted to learn from my doctors about what was necessary for my recovery. That was 4 years ago. What a disappointment my doctors have been for the recovery period. My PCP has not been able to answer basic questions either. Very frustrating. I am happy to report I have figured things out to finally help myself using online information and my symptoms. I began seeing my PCP last year for annual visits. I will see him next month again. I don’t plan on saying anything because he performs the routine labs which I use for determining my health status. Last year I was concerned with my increased fasting blood sugar. It resulted after my AVM. I asked why? It didn’t make any sense to me when I had been on the Keto diet for the last 4 months. He avoided my question so I got no answer. I will see my next set of results soon to determine my next move.
I am glad to hear you have found a helpful PT in Anchorage. I would imagine it would be difficult to find health care in that area let alone good health care especially with decreased mobility. I can understand swimming being difficult because of positioning the head. Back strokes would involve less head movement. How about standing to do water exercises? Have you found those to help?
I have issues with double vision due to my AVM. I believe proper eyesight is needed along with a healthy vestibular system in order to have balance. Proper eyesight allows for the correct positioning of the head. I have trouble all the time with balance which contributes to my nausea. Keep on being active. I have pushed myself. I believe it helps to regenerate nerve cells. 15 minute intervals is great. I try to do at least an hour on my exercise days. I do less on my off days. Do you exercise daily? Toni

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avmcbellar | @avmcbellar | Feb 26, 2021
In reply to @steveinak "Hi Amanda, Thanks so much for your response and thank you for moderating this group, your..." + (show)
@steveinak

Hi Amanda,

Thanks so much for your response and thank you for moderating this group, your efforts are definitely appreciated! In answer to your question regarding stall or regression, I hit the wall I have read about at about 3 months after my stroke. I noticed that I was moving much better at about 2 months after my stroke, than at 3 months and there after. For instance, at 2 months I was bopping down the stairs at almost a normal rate, not really requiring the aid of the handrail, now, almost a year and a half later, I move slowly down the stairs and I rely on the handrail. So, that's what I am referring to when I say I have regressed somewhat. I have read a tremendous amount about strokes since this occurred, as I'm sure many of the subscriber's here have. This 3 month plateau is mentioned in many articles and books. I have read two books on stroke recovery that were very helpful, "Stroke Rebel" and "Stronger after Stroke". This period after 3 months, often referred to as the chronic period, is what I am dealing with, as is probably everyone else that is a stroke survivor. I guess one of the frustrating things about it is that I am not able or allowed to work really hard, PT, exercising, etc., because if I over do it, I pay the next couple of days, but if I sit around for a day or two, I also pay for it the following days. So, you have to walk a fine line of not doing too much, or too little. Sorry, I don't mean to whine so much about it. I know, as far as strokes go, I am fortunate, I have no speech issues, no paralysis, no vision issues, no real cognitive issues, just balance and coordination issues mostly in my left leg and left arm. Also, just an FYI, I live in Eagle River, Alaska, just outside of Anchorage, another reply I had was not sure of my location, so thought I would add that. As I said previously, I have a great PT, and if I continue to work hard, but not TOO hard, I will continue to improve, albeit slower than the first 3 months. Thanks again for letting me vent, now I must practice my uke!

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Hi Steve @steveinak I understand. I have too felt regression. I was not keeping track in the beginning because I relied so much on the medical doctors to advise and give help. Little did I know. I thought they were the experts. I don’t know what the cause would be for the regression. Is it diet, too much or not enough activity? I did learn one thing though that survivors have an increased chance for developing glucose intolerance about 2 months into their stroke. That is because of the sudden inactivity. It is important to remain active to combat glucose intolerance. One way of doing this is to find an exercise to do for 10 minute intervals(or whatever time can be tolerated) and do as many intervals as possible throughout the day. I try to maintain exercise for at least 30-60 minutes each day. I immediately saw my symptoms improve and felt much better. Why couldn’t my doctors tell me this when I reported all my symptoms? Instead, they were baffled and gave no answers. I think we are the experts because we experience the health issues. I remember my doctors at first saying that most function will be regained within the first year. They were very vague. There is data to show a decline with physical progression in stroke survivors after so many months into their stroke. Then I started thinking. Is it the result of what their doctors advised? If they were told the very same with regaining physical function within the year, why would they continue to give it their all? They probably believed why bother and stopped. The data out there may show the decline simply because survivors stopped trying. Why is it many times we see reports on the news of people walking again after 3 years when their doctors told them they would never be able to walk? I believe the power of the mind in these cases, gives us the ability. We just need the desire and strength. After all, if we don’t try we may never know. Don’t give up! Toni

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strokesurvivordynamo | @strokesurvivordynamo | Jul 31, 2022
In reply to @lisalucier "Many of you have talked about your experiences with cerebellar stroke and therapy following it. It..." + (show)
@lisalucier

Many of you have talked about your experiences with cerebellar stroke and therapy following it. It would be great to hear an update from you, which I believe will be helpful and encouraging to other members in this discussion.

@strokesurvivordynamo - wondering if you are still doing the therapy exercises and how you are doing lately?

@maryar - how is the spasticity you were experiencing? Are you still doing the puzzles and word searches?

@elizabethmm - how are your headaches and the difficulties you were having reading? Did you and your cardiologist see any useful results from the one-month monitor you had?

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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?v=m0NI4LAN5ec) 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?v=lw3s9ae-AYM).

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.

REPLY
1 reply
susieqintx | @susieqintx | Aug 13, 2022
In reply to @hammondm99 "I thought it was just me, never discussed it with my doctors, great to understand why...." + (show)
@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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susieqintx | @susieqintx | Aug 13, 2022
In reply to @strokesurvivordynamo "A bit late with the reply but happy to update. My stroke was 6.5 yrs ago..." + (show)
@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?v=m0NI4LAN5ec) 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?v=lw3s9ae-AYM).

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.

Jump to this post

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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pek59 | @pek59 | Nov 9, 2022

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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1 reply
Amanda Roe | @amandajro | Nov 9, 2022
In reply to @pek59 "Age 63, 17 mos post stroke: The head pains are continous, mild to severe, with no..." + (show)
@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
1 reply
pek59 | @pek59 | Nov 10, 2022
In reply to @amandajro "Hello @pek59 and welcome to Mayo Clinic Connect. I am so sorry to read of your..." + (show)
@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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