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.

Liked by ausian1967

@kanaazpereira

Hi @bermuda,

I moved your message to this discussion on cerebellar stroke as I thought it would be beneficial for you to be introduced to members who have discussed PFO closure and/or cerebellar stroke.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members.
I’m also tagging @gr82balive who has had an ICD implant and PFO closure, and may be able to share more insights.

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Hello @bermuda , as @kanaazpereira mentioned, I had a period of time where I encountered several health issues all within a seemingly short period of time. It all started with a heart attack at age 48, an episode of V-tach while in the ICU recovering from the heart attack, a couple of ischemic cerebellar strokes a couple weeks later, low EF as a result of heart damage, discovery of PFO hole, and then a bout with seizures. The seizures took me by surprise as they were about 18 months after the heart attack occurred, and by then I thought I had all under control. Because of the low EF, the cardiologist suggested several preventative options, "just in case" to potentially thwart other episodes. The ICD was suggested to be implanted in case my heart decided to go into ventricular tachycardia and would be there to shock my heart back into normal rhythm should it not return on its own. The PFO closure procedure was suggested as I they could see some bubbles passing through during the echo with IV contrast. With both the hole and low EF, the concern is that of a clot forming. I am on warfarin for life to also help prevent further clot formation and the likelihood of another stroke. I've not had any problems or issues resulting from the PFO closure. My seizures have been controlled with medication (Kepra). I've been issue free until late last year when my ICD fired off twice. Once while I was sleeping and I ddn't even know it happened until the device clinic called me and asked if I was doing ok. The second time it went off I was shoveling really heavy/wet snow. At that point, the cardiologist scheduled a visit and we discovered I was in a-fib. Had an electro cardioversion procedure done and since then in combination with some new meds, the a-fib has stayed away. The point of describing all this is; over 6 years ago prevention 'options' were provided and I am thankful I chose them. If it weren't for the ICD, I wouldn't be here today. The others in combination with meds I know have helped me from encountering any other issues. Of course there is not guarantee I won't suffer another stroke at some point down the road, but for now I am doing everything I can to minimize that risk. This year I turn 55 and I feel I'm in better health than I was leading up to my heart attack 7 years ago. Are you on any sort of blood thinner? I wish you well!

@strokesurvivordynamo

At 48 and relatively healthy, I didn’t fit the typical stroke profile. I have great cholesterol, am a non-smoker, a casual drinker, I don’t have uncontrolled high blood pressure, I’m not a diabetic, and have no family history of strokes.

If you’re like me, you’ve read the Heart & Stroke material and watched the ads on TV. We’ve been trained that if you think someone is having a stroke, act FAST and do the following:

Face – is it dropping?
Arms – can you raise them?
Speech – is it slurred or jumbled?
Time – to call 911 right away!

My daughter thought I was having a stroke when it was happening and administered the FAST test – I passed it. I could do all of these things! That test works for the majority of strokes but not all. A cerebellar stroke, like mine, accounts for only 3% of strokes. MY warning signs didn’t fit the profile.

Instead I had the Three Vs – Violent Headache, Vertigo, Vomitting. Any of these signs coming on suddenly without explanation, alone or especially together, are enough to call 911. Even if your symptoms go away, you need to see medical treatment as you could have had a TIA (mini stroke).

For every minute delay in treating a stroke, the average patient loses 1.9 million brain cells. That is terrifying! It was 4 hours before an ambulance was called to my home the night I had my stroke.

I had felt “off” two days before and paid my Doctor a visit because I felt so strange it worried me. I described it as “feeling like Alice in Wonderland and I didn’t belong”. I now know that sensation is called disassociation and is a sign of a cerebellar event.

My Doctor couldn’t find anything wrong and said maybe I was fighting a virus. So when I suffered my stroke, my family thought I had a bug and checked on me every 30 minutes as I continues to battle the Three Vs. Not until I collapsed on the bathroom floor did they fear the worst and dial 911.

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@strokesurvivordynamo Hello. Thank you for kicking off this topic. I haven't been able to find similar experience as my cerebellar stroke as mine when I searched the internet initially. Yours resonates with me. I am 49 year old female and suffered a cerebellar stroke on October 4 2018. I also didn't fit or have known risk factors; fairly healthy, nonsmoker, not diabetic, good cholesterol, exercises regularly and never had serious health issues. My blood pressure was high for me the morning I had the stroke. I had a sharp, the worst headache and experienced the 3Vs as you described (violent headache, vertigo, vomiting). My son called 911 and was taken and treated at the nearby hospital. CT scan did not show stroke, however, the MRI did. It was shocking for me and my family. I was lucky in that I didn't have physical deficits. I was in the hospital for 9 days mostly for observation, 2nd night, I had a re-bleed in the same area of my cerebellar (right). Again, very lucky in that 2nd stroke healed itself and no physical deficits. I stayed at the hospital to gain strength and stabilize my vitals. I suffered vertigo-like symptoms for quite sometime, dizziness, headache, unable to move neck/stiff neck and shoulders, and fatigue. I did brief PT at the hospital and continued at home. The doctors did the typical tests to determine root cause:
– Blood test, several including whether my blood type clots
– Heart: ultrasound including bubble test for PFO
– Heart: TEE for PFO
– Carotid ultrasound: arteries in neck
– MRA scan
One additional inquiry with a hematologist specialist reviewed my case and didn't have any further recommendation or test. So I am currently left with no root cause of my stroke 3 months ago.

I know I am very lucky to have survived and recovered remarkably. My question: Were you able to determine what caused your stroke?
And for everyone, are there any of you who have not been able to determine the root case of your stroke?
Thank you.

@elvieversion2

@strokesurvivordynamo Hello. Thank you for kicking off this topic. I haven't been able to find similar experience as my cerebellar stroke as mine when I searched the internet initially. Yours resonates with me. I am 49 year old female and suffered a cerebellar stroke on October 4 2018. I also didn't fit or have known risk factors; fairly healthy, nonsmoker, not diabetic, good cholesterol, exercises regularly and never had serious health issues. My blood pressure was high for me the morning I had the stroke. I had a sharp, the worst headache and experienced the 3Vs as you described (violent headache, vertigo, vomiting). My son called 911 and was taken and treated at the nearby hospital. CT scan did not show stroke, however, the MRI did. It was shocking for me and my family. I was lucky in that I didn't have physical deficits. I was in the hospital for 9 days mostly for observation, 2nd night, I had a re-bleed in the same area of my cerebellar (right). Again, very lucky in that 2nd stroke healed itself and no physical deficits. I stayed at the hospital to gain strength and stabilize my vitals. I suffered vertigo-like symptoms for quite sometime, dizziness, headache, unable to move neck/stiff neck and shoulders, and fatigue. I did brief PT at the hospital and continued at home. The doctors did the typical tests to determine root cause:
– Blood test, several including whether my blood type clots
– Heart: ultrasound including bubble test for PFO
– Heart: TEE for PFO
– Carotid ultrasound: arteries in neck
– MRA scan
One additional inquiry with a hematologist specialist reviewed my case and didn't have any further recommendation or test. So I am currently left with no root cause of my stroke 3 months ago.

I know I am very lucky to have survived and recovered remarkably. My question: Were you able to determine what caused your stroke?
And for everyone, are there any of you who have not been able to determine the root case of your stroke?
Thank you.

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Same here, I’m 57 in good health other than the stroke! I had mine on Aug 1, 2018. I was fortunate to not have any lasting physical deficits other than a small leak in the left side of my mouth. However, every since the stroke I have been suffering from ongoing migraines. The question I ask to other people on this forum does anyone else suffer from migraines post stroke. The doctors also have done many test and have not determine the cause of my stroke. My neurologist basically told me we will never know what caused it, my blood pressure does run a little high and I have a high stress job in IT and that could be a mitigating factor.

@kweber

Same here, I’m 57 in good health other than the stroke! I had mine on Aug 1, 2018. I was fortunate to not have any lasting physical deficits other than a small leak in the left side of my mouth. However, every since the stroke I have been suffering from ongoing migraines. The question I ask to other people on this forum does anyone else suffer from migraines post stroke. The doctors also have done many test and have not determine the cause of my stroke. My neurologist basically told me we will never know what caused it, my blood pressure does run a little high and I have a high stress job in IT and that could be a mitigating factor.

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Fortunately, no migraines here. I'm in the same boat as far as diagnosis is concerned, probably A fib created a clot that was released causing my stroke. I have an implant monitoring my heart and uploading my EKG daily, no recurrence of A fib over the past year. The chip implanted is good for another 2 years, maybe they will see something before it gets ex-planted. Even if it is A fib, I am thinking there is not much they can do besides put me on blood thinners.

I suffered a cerebellar stroke 2 weeks ago.. I had mild residual Paralysis on the right side but not much other issues and I guess I was extremely lucky.
I am very scared about long-term survival.
I've been scaring myself reading some of the stories and the percentage of people who die before the first year can anybody offer me any insight and two long-term survival to make me feel okay because I'm not right now….
I had a blood clot.
I was in the hospital for a couple of days but released and now I'm having many many tests to try and figure out where it came from although they think it was cardiac-related.
I need some encouragement please somebody help me

@elvieversion2

@strokesurvivordynamo Hello. Thank you for kicking off this topic. I haven't been able to find similar experience as my cerebellar stroke as mine when I searched the internet initially. Yours resonates with me. I am 49 year old female and suffered a cerebellar stroke on October 4 2018. I also didn't fit or have known risk factors; fairly healthy, nonsmoker, not diabetic, good cholesterol, exercises regularly and never had serious health issues. My blood pressure was high for me the morning I had the stroke. I had a sharp, the worst headache and experienced the 3Vs as you described (violent headache, vertigo, vomiting). My son called 911 and was taken and treated at the nearby hospital. CT scan did not show stroke, however, the MRI did. It was shocking for me and my family. I was lucky in that I didn't have physical deficits. I was in the hospital for 9 days mostly for observation, 2nd night, I had a re-bleed in the same area of my cerebellar (right). Again, very lucky in that 2nd stroke healed itself and no physical deficits. I stayed at the hospital to gain strength and stabilize my vitals. I suffered vertigo-like symptoms for quite sometime, dizziness, headache, unable to move neck/stiff neck and shoulders, and fatigue. I did brief PT at the hospital and continued at home. The doctors did the typical tests to determine root cause:
– Blood test, several including whether my blood type clots
– Heart: ultrasound including bubble test for PFO
– Heart: TEE for PFO
– Carotid ultrasound: arteries in neck
– MRA scan
One additional inquiry with a hematologist specialist reviewed my case and didn't have any further recommendation or test. So I am currently left with no root cause of my stroke 3 months ago.

I know I am very lucky to have survived and recovered remarkably. My question: Were you able to determine what caused your stroke?
And for everyone, are there any of you who have not been able to determine the root case of your stroke?
Thank you.

Jump to this post

Your story could have been my exact story I just post it on here for the first time tonight..

It happened to me just about 2 and 1/2 weeks ago I did not have a 2nd Stroke…
I'm seeing my neurologist probably next week.
I was not left with a lot of residual issues just mild Paralysis on the right side which I exercise daily to fight against..

I'm really scared about my prognosis because everything that I read on Google which I know is not good to do is telling me that a lot of people died in the first year.
I had a small blood clot in the cerebellum.
I have suffered from severe anxiety since this happened and I am petrified that I will die at the young age of 50 and leave behind my children.
What is the mean survival rate for this type of stroke if yours was mild. I did not ask my doctor about this and now I'm sorry but I did not because I'm facing The Weeknd petrified.

Can anybody offer any insight? In the hospital I have the bubble test echocardiogram and an MRI plus I also had cats cans of the neck and carotid artery with contrast.
I did not have the transesophageal echocardiogram yet I haven't scheduled for Friday and I'm really nervous about having it because it sounds horrible and invasive

@cailinalainn

Your story could have been my exact story I just post it on here for the first time tonight..

It happened to me just about 2 and 1/2 weeks ago I did not have a 2nd Stroke…
I'm seeing my neurologist probably next week.
I was not left with a lot of residual issues just mild Paralysis on the right side which I exercise daily to fight against..

I'm really scared about my prognosis because everything that I read on Google which I know is not good to do is telling me that a lot of people died in the first year.
I had a small blood clot in the cerebellum.
I have suffered from severe anxiety since this happened and I am petrified that I will die at the young age of 50 and leave behind my children.
What is the mean survival rate for this type of stroke if yours was mild. I did not ask my doctor about this and now I'm sorry but I did not because I'm facing The Weeknd petrified.

Can anybody offer any insight? In the hospital I have the bubble test echocardiogram and an MRI plus I also had cats cans of the neck and carotid artery with contrast.
I did not have the transesophageal echocardiogram yet I haven't scheduled for Friday and I'm really nervous about having it because it sounds horrible and invasive

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Anxiety is your enemy in this situation. I did the same thing going on line and reading all the negative but stopped it within a week. I am not the type of person who dwells on the negative. Be positive about the help you're receiving, follow everything the neurologists and physicians tell you to do. I visited with my family physician last week and got him dialed in on whats taken place and now feel good about having a team working with me to win this life challenge. My advice is to dwell on each day you wake up and focus on everyday being a good day. Im still dealing with some what i classify as mild brain fog and have started a diary for my team to work with.
I am eating right, doing cardio every day and focus on family and my work. Life is too short for anxiety! It's wasted energy. I really hope you find this information helpful.

@cailinalainn

Your story could have been my exact story I just post it on here for the first time tonight..

It happened to me just about 2 and 1/2 weeks ago I did not have a 2nd Stroke…
I'm seeing my neurologist probably next week.
I was not left with a lot of residual issues just mild Paralysis on the right side which I exercise daily to fight against..

I'm really scared about my prognosis because everything that I read on Google which I know is not good to do is telling me that a lot of people died in the first year.
I had a small blood clot in the cerebellum.
I have suffered from severe anxiety since this happened and I am petrified that I will die at the young age of 50 and leave behind my children.
What is the mean survival rate for this type of stroke if yours was mild. I did not ask my doctor about this and now I'm sorry but I did not because I'm facing The Weeknd petrified.

Can anybody offer any insight? In the hospital I have the bubble test echocardiogram and an MRI plus I also had cats cans of the neck and carotid artery with contrast.
I did not have the transesophageal echocardiogram yet I haven't scheduled for Friday and I'm really nervous about having it because it sounds horrible and invasive

Jump to this post

The only advice I can give you is… There is nothing to worry about, until there is something to worry about.

@cailinalainn

I suffered a cerebellar stroke 2 weeks ago.. I had mild residual Paralysis on the right side but not much other issues and I guess I was extremely lucky.
I am very scared about long-term survival.
I've been scaring myself reading some of the stories and the percentage of people who die before the first year can anybody offer me any insight and two long-term survival to make me feel okay because I'm not right now….
I had a blood clot.
I was in the hospital for a couple of days but released and now I'm having many many tests to try and figure out where it came from although they think it was cardiac-related.
I need some encouragement please somebody help me

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My husband, in his early 50's, had his stroke in September. I remember also being extremely fearful of a reoccurance.

I had also posted here asking how other survivors have lived or changes they have made since then, to prevent another stroke from happening. My husband has changed his diet and now works out more often.

He was told that the risk of a reoccurance is highest in the first month after the stroke, and then still elevated for the first year after. So we are still in the high risk zone.
i understand your fear, and it's normal to be scared. It's also common to feel depressed after a stroke. You came so close to death, after all.

For us it was a huge wake up call. I'm relieved every morning to know that my husband is alive and well. Every day with him is a precious gift, that came so close to have been taken away from me on the night of his stroke. He's made some other changes to his life as well, like spending more time with our child and being more assertive about what he wants. It's like we recognise that tomorrow isn't guaranteed and so we live more fully in the present.

A level of anxiety remains, of course, and I have started seeing a therapist myself for stress disorder. My husband himself is more or less back to work, back to normal. Cause of stroke is still unknown. I researched about strokes and read stories from survivors. There are good, evidence-based tips for preventing strokes out there.

The tests you have to undergo are unpleasant but should help to find the cause of the stroke. I empathise! I find waking up and counting my blessings, as well as going to bed with a grateful heart helps a lot.

@cailinalainn

Your story could have been my exact story I just post it on here for the first time tonight..

It happened to me just about 2 and 1/2 weeks ago I did not have a 2nd Stroke…
I'm seeing my neurologist probably next week.
I was not left with a lot of residual issues just mild Paralysis on the right side which I exercise daily to fight against..

I'm really scared about my prognosis because everything that I read on Google which I know is not good to do is telling me that a lot of people died in the first year.
I had a small blood clot in the cerebellum.
I have suffered from severe anxiety since this happened and I am petrified that I will die at the young age of 50 and leave behind my children.
What is the mean survival rate for this type of stroke if yours was mild. I did not ask my doctor about this and now I'm sorry but I did not because I'm facing The Weeknd petrified.

Can anybody offer any insight? In the hospital I have the bubble test echocardiogram and an MRI plus I also had cats cans of the neck and carotid artery with contrast.
I did not have the transesophageal echocardiogram yet I haven't scheduled for Friday and I'm really nervous about having it because it sounds horrible and invasive

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You may want talk to your doctors about your fears, they are the experts with hands on experience with these things, they should be able to help put things into perspective. The Internet has a lot of information and it is hard to determine what applies and I can see it causing anxiety. For what it is worth, your stroke sounds very similar to mine and I just celebrated a 1 year anniversary since I had mine. My cardiologist changed my appointments to annual in October and my Neurologist said no more visits were needed, so I guess that's a good sign!

I also went through a barrage of tests, multiple MRI's, stress tests, multiple blood tests, cat scans, echo cardiograms, sleep apnea tests and so on. My doctor was very clear in that he was looking to eliminate possible causes of the stroke, kept a positive light on things. It wasn't until 10 months after my stroke that they saw something they could treat that should reduce the chance of recurrence.
.

@phughes814

Anxiety is your enemy in this situation. I did the same thing going on line and reading all the negative but stopped it within a week. I am not the type of person who dwells on the negative. Be positive about the help you're receiving, follow everything the neurologists and physicians tell you to do. I visited with my family physician last week and got him dialed in on whats taken place and now feel good about having a team working with me to win this life challenge. My advice is to dwell on each day you wake up and focus on everyday being a good day. Im still dealing with some what i classify as mild brain fog and have started a diary for my team to work with.
I am eating right, doing cardio every day and focus on family and my work. Life is too short for anxiety! It's wasted energy. I really hope you find this information helpful.

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So much I really appreciate that reply..
I am trying not to be anxious but it has been really hard.
I'm still in the process of trying to find out on the investigation stage of what caused this and if I knew what caused that I would feel a lot better about my prognosis going forward.

It's the fear of the unknown and reoccurrence that is making me anxious.
I have drastically changed my diet completely and now do as much mild exercises I can until I build my strength up.

@phughes814

Anxiety is your enemy in this situation. I did the same thing going on line and reading all the negative but stopped it within a week. I am not the type of person who dwells on the negative. Be positive about the help you're receiving, follow everything the neurologists and physicians tell you to do. I visited with my family physician last week and got him dialed in on whats taken place and now feel good about having a team working with me to win this life challenge. My advice is to dwell on each day you wake up and focus on everyday being a good day. Im still dealing with some what i classify as mild brain fog and have started a diary for my team to work with.
I am eating right, doing cardio every day and focus on family and my work. Life is too short for anxiety! It's wasted energy. I really hope you find this information helpful.

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Thanks so much for the supportive words.
I have been a bundle of nerves.
Anytime I have a headache I think it's happening again or if I feel slightly dizzy or twinges in my right side.
I actually had a massive panic attack at the Weekend and I thought I was having a heart attack.
I was very close to calling an ambulance.
As you say anxiety does not help. I think I'm going to see somebody about my anxiety. Time is the great healer.
I'm a single mom so always worry all the time about who will take care of my children so when this happened I actually sat down and made plans for what to do in case something did happen which made my mind relax a little.

It's only the third week so I'll be happy when I have the first month over me.. will feel a little better.
My diet is super healthy now and I'm really high doses of cholesterol meds and diabetes medicine which I was not before. I'm also back at work which was very stressful the first day when I realized I couldn't type …I couldn't get my hand to work as well as it did before so I started crying hysterically and left.
I'm having my transesophageal echocardiogram on Friday wondering has anybody had this because I'm really nervous it sounds very invasive.
I've had bubble test ..cat-scans echocardiograms MRI's next week I'm going to have a stress test..
Thanks for all the support everyone

Hello all. First time posting since I had my cerebellar stroke. I had my stroke on 12/29/15 when I was 40. I was at work and out of nowhere I had the worst headache imaginable. At first I thought I was dehydrated or hadn't had enough coffee. I would tilt my head slightly and it would cause me to vomit. After about an hour of thinking I just had a bad migrane I told my manager I had to go home.They brought me to the office and held me there for a couple of hours while a supervisor okayed me to go home. My company drove me home as I couldn't drive. When I got home my wife gave me two Excedrin migraines. I layed on my couch but every time I moved my head I ran to the bathroom to vomit. After over a day in bed my wife took me to the emergency room where they found I had a massive cerebellar stroke on the right side. I spent 6 days at the hospital 5 of which were in the ICU.On my last day they did a TEE test and found a PFO in my heart. I had my PFO closed May of 2018. Since my stroke I never really fully recovered. I still get very big dizzy spells,headaches everyday,I even have a hard time watching fast moving movies or credits. I went for vestibular physical therapy but it really didnt work for me. I have balance issues especially in the dark. I went back to work 3 months after my stroke. I worked for two years after but my residual effects seem to always be with me. My job is outdoors,balancing on steps,walking uneven surfaces. Before my stroke I could work 16 hours without issues. Now I cant make it through 8 hours. Long first post and I appreciate all the good news from people still recovering.

@supra865

Hello all. First time posting since I had my cerebellar stroke. I had my stroke on 12/29/15 when I was 40. I was at work and out of nowhere I had the worst headache imaginable. At first I thought I was dehydrated or hadn't had enough coffee. I would tilt my head slightly and it would cause me to vomit. After about an hour of thinking I just had a bad migrane I told my manager I had to go home.They brought me to the office and held me there for a couple of hours while a supervisor okayed me to go home. My company drove me home as I couldn't drive. When I got home my wife gave me two Excedrin migraines. I layed on my couch but every time I moved my head I ran to the bathroom to vomit. After over a day in bed my wife took me to the emergency room where they found I had a massive cerebellar stroke on the right side. I spent 6 days at the hospital 5 of which were in the ICU.On my last day they did a TEE test and found a PFO in my heart. I had my PFO closed May of 2018. Since my stroke I never really fully recovered. I still get very big dizzy spells,headaches everyday,I even have a hard time watching fast moving movies or credits. I went for vestibular physical therapy but it really didnt work for me. I have balance issues especially in the dark. I went back to work 3 months after my stroke. I worked for two years after but my residual effects seem to always be with me. My job is outdoors,balancing on steps,walking uneven surfaces. Before my stroke I could work 16 hours without issues. Now I cant make it through 8 hours. Long first post and I appreciate all the good news from people still recovering.

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I had my stroke in Aug 2018, I'm battling daily headaches, balance is getting better but I work on it every day. I work in IT and I'm trying to get back to working a full 8 hours, 5 days a week. Best of luck to you!

All we can do is keep moving forward, and never backwards.

Anyone out there that has had s full left sided stroke with full recovery? I am getting a LINQ monitor and waiting scared on the table as I write this. They have found a small to moderate hole in my heart but are not convinced it was the cause for the stroke. I just turned 65. I am 110 lbs and was active until recently when I started having back problems.

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