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.

@jmjlove

Thank you for your reply, Supra. Are your headaches constant, or only when head is against something? Mine are all day always, but become unbearable with pressure applied, as with pillow, wall. Don't mean to pin you down, just trying to understand my own head, lol. Is this headache typical for this type stroke?

Jump to this post

I have mentioned this before as a reply, but I tried Propranolol about a year after my stroke. My stroke was in March of 2011. That 1st year I had headaches everyday, as soon as I opened my eyes in am. Had sort of an emergency visit in 2012, to a clinic I had never been to before and the Doctor recommended trying that drug, worked for my blood pressure and the headaches. Was amazing how much it helped me about a day after I started to take it. Have been on it since 2012 and it helped alot, they are not totally gone, but much better than it was, although in the last month or so again I have been getting more headaches again and they are worse (like what I had the 1st year after the stroke). Sometimes taking Advil in addition to Propranolol helps, but not always.
I also have that feeling of not quite being there so to speak, just kinda in a daze, sort of, can function and do my work, but have to try to focus on everything so much more than before. For me it is really hard to honestly say I enjoy much of anything, I personally think it is from having to focus so much on what used to be, simple enjoyable tasks. Also it might help to have a job that is NOT stressful, if there is such a thing.
One more note, I have a fusion between C-5 and C-6, some of the headaches could be from that also, but again I don't think there is a fix. I personally think a tiny clot formed in that area and moved to the Cerebellum. I say that because we never did figure out a cause or where the clot came from.
It would be interesting to know how many of us, still do not have a diagnosis. Would it not be interesting if the doctors surveyed survivors with the same kind of stroke and asked many of the questions we are all talking about, to see what is most common among the most people and then at least try to come up with a workable fix or steer us in a direction that might help us help each other. Remember time and money are a big part of everything. Many times nothing gets done because of those 2 items.
All that being said, I do believe that some days just suck more than others, but we are the one effected and it is still up to us to keep trying and never give up!! Keep the faith!

Liked by jmjlove

REPLY

It's been a while since I posted, so I wanted to provide an update for those of you that may be new to this stroke thing and are wondering how others have progressed. I had my Cerebellar Infarct on January 6, 2018 at the age of 56, my cardiologist thinks it was due to an AFIB episode I had. I am a generally healthy and active guy, ran 3 marathons, 1 triathlon, 1/2 marathons, 100 mile bike rides through my early 50s. The stroke affected my right arm and leg, After the stroke, I was dealing with what I assumed was brain flooding when going to "busy" stores, in the machine room at work, walking down tight hallways, basically places where there was a lot going on around me, I would get anxious and couldn't wait to get out. I am right handed and struggled with the basic things, brushing my teeth, combing my hair, writing, holding a pen, using a keyboard and mouse, anything that required coordination with my right hand. I started playing guitar in my teens and could no longer hold a pick or keep the beat when strumming. My right leg felt heavy, stairs were a challenge. My balance was a bit off, though I was able to drive my car within a few weeks of my stroke and was back on my motorcycle once the weather allowed. I found myself at times putting the front brake on my motorcycle heavier than normal, but not too much, had to really think when using my right hand on the wheel in my car. I definitely had that "off" feeling, was worse towards the end of the work week for me, better after shutting down for the weekend. I did in home PT pretty heavily for 7 or 8 months and every day I saw improvement.

14 months later, I would say I am 95% of the way back to where I was pre-stroke. I still do a very limited amount of formal PT, but primarily keep myself busy daily doing things that require concentration, balance and coordination. I am somewhat of a mechanical guy and have had no issue working on cars, my motorcycle, my home, etc. I play my guitar almost daily and am very close to where I was before the stroke, expect to be 100% in due time as long as I keep practicing. I took a big step forward with my playing maybe 2 months ago, it just got much easier to play, my muscles were all of a sudden much looser. Brain flooding is almost non-existent these days, that seems to have subsided greatly in the past month. I still have a little bit of a stiff right leg when I get up in the morning. The stiffness mostly subsides once I start moving around, but I do feel my leg getting a little heavy by the end of the work week. My head is also a little cloudy by the end of my work day, which is usually 10 hours, clear in the morning. My speech slurs a little also when I get tired. People around me don't notice, but I do.

My cardiologist appointments are annual now. During my last visit, the doctor noticed I was having PACs occasionally and mentioned this could be the precursor of an AFIB episode. My PACs started lasting upwards of 20 minutes, so he put me on Metaprolol to make them less intense. I still get PACs on occasion, but they are less frequent and they only last a minute or so.

I know each person is different, but there is hope for recovery. I hope everyone out there has the same success that I have had. It took a lot of work for me, no cutting corners to figure out easier ways to do things, but the work is paying off.

REPLY

Hello @hammondm99
I appreciate your update. It is so helpful to know how a positive attitude and working hard at recovery can make such a difference. You've accomplished a lot since your stroke and I applaud your victories.
I am interested in what you described as "brain flooding." Is that a typical post-stroke symptom? Do you still have that symptom when you are in a crowded or noisy place?

REPLY
@livetheday

I have mentioned this before as a reply, but I tried Propranolol about a year after my stroke. My stroke was in March of 2011. That 1st year I had headaches everyday, as soon as I opened my eyes in am. Had sort of an emergency visit in 2012, to a clinic I had never been to before and the Doctor recommended trying that drug, worked for my blood pressure and the headaches. Was amazing how much it helped me about a day after I started to take it. Have been on it since 2012 and it helped alot, they are not totally gone, but much better than it was, although in the last month or so again I have been getting more headaches again and they are worse (like what I had the 1st year after the stroke). Sometimes taking Advil in addition to Propranolol helps, but not always.
I also have that feeling of not quite being there so to speak, just kinda in a daze, sort of, can function and do my work, but have to try to focus on everything so much more than before. For me it is really hard to honestly say I enjoy much of anything, I personally think it is from having to focus so much on what used to be, simple enjoyable tasks. Also it might help to have a job that is NOT stressful, if there is such a thing.
One more note, I have a fusion between C-5 and C-6, some of the headaches could be from that also, but again I don't think there is a fix. I personally think a tiny clot formed in that area and moved to the Cerebellum. I say that because we never did figure out a cause or where the clot came from.
It would be interesting to know how many of us, still do not have a diagnosis. Would it not be interesting if the doctors surveyed survivors with the same kind of stroke and asked many of the questions we are all talking about, to see what is most common among the most people and then at least try to come up with a workable fix or steer us in a direction that might help us help each other. Remember time and money are a big part of everything. Many times nothing gets done because of those 2 items.
All that being said, I do believe that some days just suck more than others, but we are the one effected and it is still up to us to keep trying and never give up!! Keep the faith!

Jump to this post

I had surgery to fuse C4-C5-C6. That night while I was hospitalized was the night I had the stroke. Everyone blamed the symptoms on my surgery and a reaction to the drugs. It was a year and a half later that an MRI done at the request of my ENT showed the stroke damage caused by an vertibral artery dissection at the surgery site.

REPLY
@bille

I do feel like that. I wonder if it because the way the brain is recording the activities. For me, there are times when I can't find a word or remember if we did something. Usually it is not that I can't remember, I just can't remember where my brain stored it. I do think I am depressed. It is funny, I told my GP that I was depressed before I knew I had experienced a stroke.

I am going to Johns Hopkins in a couple of weeks for Neuro-psych testing. I am really hoping that I will be able to get some idea of what in my brain is not working as it should and what, if anything I can do to improve it, or just as you said, accept that this is the new me.

I talk to my husband, and he can't be more supportive. He has been wonderful in all of this. But I think that everyone looks at the physical side and do not see the typical indications of a stroke so they have difficulties in understanding that I see things every day, that just don't work they way they used to. I feel like my brain aged a decade overnight.

Jump to this post

Hello @bille

I appreciate your contributions to our discussions on stroke. You must be very grateful that you have a correct diagnosis now and most importantly that you have a supportive family behind you. There are all types of therapies available (physical, occupational as well as cognitive) perhaps John Hopkins will be able to put you in touch of some of these therapies.

Have you had any of these therapies yet? When is your appointment at John Hopkins?

REPLY
@hopeful33250

Hello @bille

I appreciate your contributions to our discussions on stroke. You must be very grateful that you have a correct diagnosis now and most importantly that you have a supportive family behind you. There are all types of therapies available (physical, occupational as well as cognitive) perhaps John Hopkins will be able to put you in touch of some of these therapies.

Have you had any of these therapies yet? When is your appointment at John Hopkins?

Jump to this post

I have not had any therapies yet. I will be tested at Johns Hopkins March 22nd.

REPLY
@bille

I have not had any therapies yet. I will be tested at Johns Hopkins March 22nd.

Jump to this post

@bille

I hope you get some good help at John Hopkins. Here is some information from the National Stroke Association regarding strokes as well as support groups, just click on the link,

https://www.stroke.org/we-can-help/

You and your husband might find it helpful to read through the website and become familiar with the information provided there. There is also a way you can input your city and state and find support groups. Support groups will help you realize that you are not alone, much like here on Connect.

I look forward to hearing from you again. Will you post an update after your appointment?

REPLY
@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.

Jump to this post

Strokesurvivor, your story is well written, which I appreciate. I found myself within it. Alice in wonderland is how I felt then, and to a much less degree, now.

Two weeks before my stroke my cerebellar region hurt so bad, I asked my son if my eyes looked right. They did, so I just endured never dreaming I was on the cusp of a full blown, knock down, punch in the head, stroke. Before stroke my head had been hurting terribly, but I just figured migraines. Didn't seek help, had no balance problems or loss of control.

Funny, when the #$@# hit the fan, all hit me at once. And I knew it was a stroke. Was at hospital about 45 minutes later. No bleed so received tpa. Only immediate help it gave was my sight significantly improved by day 2. All deficits I presented with, came home with me.

FAST did not apply. The 3 Vs among other things were there. And stayed, but vomitting cleared up first 2 weeks. My limbs on left had ataxia. When I moved them, it felt as though they were gonna float away. Could not make them do what I wished, though they remained strong, just disobedient, lol. Impossible to walk, use left arm. I could think, talk, with little difficulty.

Besides headache, everything hit at once. Had a strange sound in my head at onset. Similar to celophane crunching in my skull. Did you experience that?

What exactly we're your deficits, if you don't mind my asking? How long before you felt somewhat normal? Was it a large stroke? Just wondering what life is like now. Sounds like you have loving support at home.I do hope so. No fun going through. Much worse, alone. Blessings!

REPLY
@thinkitseeitdoit

Yes that make sense. You never will be the same. You will be better. You dont need to think about the future. Just make it through each day.

Jump to this post

Thinkit, while I enjoy a positive attitude like you have and hopefully I have, not having read all your posts, I wonder if you had a large or small stroke. With some of us, we will NEVER be BETTER than we were, physically. That is just not possible. I may become a better person, emotionally, spiritually..and if that's what you mean, I sure do agree.

Looking at this realistically, many of us are disabled. Some of us have even lost the ability to correct our balance. If we stumble, we go down. When we are in public, well me anyway, I appear as though I've had one too many, lol.

This may just be me and I mean this personally and as my take, but when people would, God bless them, say things like…you will be better than before…it strikes me as saccharine and unrealistic. Actually somewhat irritating as I continue to spill my drinks, stumble and fall, drag my left leg when tired, and my hair looks like crap because my left hand is so dysfunctional it would rather wreck my hair than subdue it. Can't clasp a barrette, can't help my right hand get the job done.

If I am being silly or overly sensitive, I don't mind being told. Surely, I don't want to discourage anyone from encouraging, but, again, just speaking for myself here, when I am told that type thing, that I will be BETTER, I feel as though the bewildering event I experienced and am still experiencing is being downplayed and I am being placated instead of more realistic acceptance of the new me. When people respond with honest acceptance of where I'm at now, I find that somewhat consoling and satisfying.

Forgive my many words, but struggling to explain why I object to your kind, but maybe incorrect thought or approach to encouraging stroke survivors. Maybe I'm just messed and wrong headed. Please feel free to respond….and correct me. Still trying so hard to understand the new me.

REPLY
@bille

A few months ago I had an MRI performed of my head at the request of my ENT. I had been referred to the ENT due to a significant loss of hearing in my left ear. What was found was a surprise. I had suffered a cerebellum infarct to my left cerebellum due to a dissection of the left vertebral artery. The stroke was not recent but after consulting with a doctor of the Inova Vascular and Vein Center and a Doctor of the Neurology Center of Fairfax, it appears that the stroke very likely occurred as a result of the ACDF surgery I had on June 7, 2017. After I woke up in the hospital room, I was at first able to walk unassisted however, later that night I began experiencing extreme vertigo, headache and projectile vomiting. This continued after I was discharged the next day. Once home, I was unable to walk unassisted, and fell and hit my head the first night home. My husband called the emergency number and was told not to worry it was just a reaction to the drugs. I was only able to walk with assistance. Gradually over the next few days I was able to start using a borrowed walker and gradually regained the ability to walk without assistance.

It was frightening to me that the stroke likely occurred while I was hospitalized. My General Practitioner told me that even if I had been taken to the Emergency room the first night I was home, they would have likely not diagnosed the stroke. Using a walker and a lot of support from my husband and friends I have recovered most of my physical abilities. I still get dizzy with certain motions. The vascular Dr. feels that this is probably due to the blood flow within the brain. I also have the Cerebellar tremor in my left side.

However, I have struggled to find Doctors that understand the Cerebellum. Most seem to still think it is only for body coordination. Nothing cognitive. I was finally able to schedule neurological testing at Johns Hopkins. This testing will occur the later half of March this year. I want to find a baseline of where I am now and perhaps be able to develop a plan for regaining some of what I have lost. Looking back over the last year and a half I can see changes in my cognition. My short term memory is shot. I search for words when having a conversation. Sometimes I forget a word even after using it 5 minutes before. Most of the time it is not like I have forgotten something, I just forgot how to access the information in my brain. I also have experienced depression.

I feel I dodged a cannon ball and didn't even know when it when it passed. Part of me is angry that the medical staff missed the signs. I spent much of the time since the stroke blaming myself for issues I was having. Hopefully, after the testing at Johns Hopkins I will have a solid plan for my recovery.

Jump to this post

Bille, could you explain the cerebellar tremor for me. I have always called the shaking in my left side, especially and mostly when I attempted to do a task, small things, like removing money from wallet, carry a drink, hold a paper plate while using right hand to put food on, always referred to this as a palsy.

This out of control shaking did not appear until a month or more after stroke. It just appeared. I was scared thinking I may have had another stroke without realizing it. It is uncontrollable and annoying as heck, mostly shows itself when using left hand to do little things. Also have tremor throughout left side when simply trying to stand still. What's up with that???

Anyone have any idea what makes this happen? I think another poster besides us has mentioned this. Would love to know more about this nasty clingon.
Thanks 🙂

REPLY
@jmjlove

Bille, could you explain the cerebellar tremor for me. I have always called the shaking in my left side, especially and mostly when I attempted to do a task, small things, like removing money from wallet, carry a drink, hold a paper plate while using right hand to put food on, always referred to this as a palsy.

This out of control shaking did not appear until a month or more after stroke. It just appeared. I was scared thinking I may have had another stroke without realizing it. It is uncontrollable and annoying as heck, mostly shows itself when using left hand to do little things. Also have tremor throughout left side when simply trying to stand still. What's up with that???

Anyone have any idea what makes this happen? I think another poster besides us has mentioned this. Would love to know more about this nasty clingon.
Thanks 🙂

Jump to this post

One of the neurologists I saw had me touch his fingertip with my fingertip as he moved his hand around randomly. When trying to do this with the side that had the stroke, my left, as my finger approached his finger it would start shaking, searching is how the neurologist called it. I do notice that I have a tremor more when tired, but that would be the same as most of my symptoms. There are some Youtube videos describing this better than I can.

Hope this helps.

REPLY
@hopeful33250

@bille

I hope you get some good help at John Hopkins. Here is some information from the National Stroke Association regarding strokes as well as support groups, just click on the link,

https://www.stroke.org/we-can-help/

You and your husband might find it helpful to read through the website and become familiar with the information provided there. There is also a way you can input your city and state and find support groups. Support groups will help you realize that you are not alone, much like here on Connect.

I look forward to hearing from you again. Will you post an update after your appointment?

Jump to this post

Thanks I will post once I get done. My understanding is the report will be several weeks after the testing. I will post about the process as well as the results. I have several concerns I hope I can find guidance on. First, Long before my stroke, I had CRPS on my left side. This resulted in nerve damage that is treated by Lyrica. Lyrica can cause some cognitive issues. Secondly my mother had dementia. We are not sure exactly what age she was when she started to get it. She was very good at covering. Lastly, I want to have a benchmark of where I stand cognitively. Then I hope I could always be retested in the future to see if anything is changing for the worst.

REPLY
@bille

Thanks I will post once I get done. My understanding is the report will be several weeks after the testing. I will post about the process as well as the results. I have several concerns I hope I can find guidance on. First, Long before my stroke, I had CRPS on my left side. This resulted in nerve damage that is treated by Lyrica. Lyrica can cause some cognitive issues. Secondly my mother had dementia. We are not sure exactly what age she was when she started to get it. She was very good at covering. Lastly, I want to have a benchmark of where I stand cognitively. Then I hope I could always be retested in the future to see if anything is changing for the worst.

Jump to this post

@bille

It sounds as if you have some good goals for your appointment and that is important. You can make the most of your appointment time.

Are the cognitive problems your main concern or are there other physical limitations you would like to address?

REPLY
@hopeful33250

@bille

It sounds as if you have some good goals for your appointment and that is important. You can make the most of your appointment time.

Are the cognitive problems your main concern or are there other physical limitations you would like to address?

Jump to this post

Mostly cognitive. I do have some physical issues. I have urge incontinence, I still get dizzy if I turn my head, stairs still scare me. The cognitive are more subtle but probably impact my life more than the physical issues. Overall, I am very lucky. The fact that I recovered as well as I have so far was luck. The stroke could have had a far more profound impact on my life. So I know I am lucky, I just wast to get the most recovery that I can.

REPLY

Hello @bille

Here is a recent discussion on Connect that you might find helpful before your appointment at John Hopkins. It is suggestions for how to get off to a good start with a new specialist. Some of the pointers are really helpful.

https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

REPLY
Please login or register to post a reply.