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.

@kkglasman

I had a cerebellar stroke about two months ago at age 51. I had a violent headache which I took for one of my migraines (the worst I had ever experienced). I then started experiencing vertigo (which I have never had) and then I became ill and vomiting. My wife suspected a stroke and called 911. I was tested in the hospital but they released me with no diagnosis of a stroke. Four days later I went to my Neurologist because I was having balance issue and numbness/tingling issues and he sent me for an MRI, which is when he found the stroke and checked me back into the hospital. I have sense gained most of my balance and coordination back (still have my moments) but I still have some numbness/tingling on my left side. They didn't find anything that caused the stroke, they have me on a heart monitor in case that could have been the cause but my chronic migraines/cluster headaches may have something t do with it as well so they are trying to control those as well. A very scary/traumatic experience and I feel very fortunate that I did not suffer a worse fate.

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Hi @kkglasman , I joined this group last year after my husband had a posterior inferior cerebellar infarct with pretty much the same symptoms as you. He was also 51. I thought he'd eaten something wrong the evening before! Good on your wife for recognising the signs, since they aren't the typical ones for stroke. My husband couldn't walk for a few days but recovered quickly in the hospital. As far as I know they only gave him aspirin and some statins. Despite extensive testing, same as in your case they did not discover the cause. They put a cardiac monitor for a day, discovered I think some leakage in his heart valves. But the cardiologist said it wasn't a concern, and I don't know whether to get a second opinion. We suspect he also suffered two transient ischemic attacks a couple of years prior, during which he experienced sudden but fleeting split vision. These episodes only lasted a minute or so each and he thought he was having vision issues but the opthamalogist just dismissed them as his sight tests turned out ok.

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@jmjlove

Ok. So. I feel a book coming on. Lol. If its TL…then DR. Just been thinking about my stroke. It will be 3 years in May. I was 57 years young. Was the day before mothers day. Happened around 6:20 am. Was at my kitchen counter and just happened to look at my clock. Being definite on time allowed for getting the TPA shot. Well, that and no bleed. If it helped much, I couldn't say for certain. Other than eyesight issues cleared up rather quickly. The left side experienced ataxia, not so much weakness as a lack of control, still struggling with that.

Anyway, this is not so much about the event, as it is about NOW. I got all the therapy I needed. Considering the size of stroke, and location, cerebellum, recovery was actually pretty good. As of now, most likely, many would not be able to tell. I mean, many people walk with a limp. Many walk with a slight stagger…(but they've been drinking, lol.) Many go out with less than lovely hair. Now that one does bother me.

Still finding my way back to Kansas. Still a bit flat emotionally. Still can't stop the tremor in left side which came well after the tsunami in my head. The tremor is most active when trying to stand still, hold a drink, do my hair, hold anything still. I find my shoulder blade hopping, left side, my leg bouncing, my arm twitching, knee giving out, repeatedly. Getting the @#%$ beads out of the silly putty is STILL a challenge. If I stumble, most likely I fall. Lost the natural reflex that will help regain balance. Gone. Still bite my tongue and cheek. Still can't appreciate a simple thing like a tasty meal. But most grieveous, still feel like an alien in my own skin. And THAT is the worst daily reminder of this life sucking, life altering, life suckin, (oh did I say that already???? Lol.) event.

Where have I gone? The me that felt enthusiasm. The me that enjoyed dinner guests. The me that played baseball with the littles. Drew and colored with them. The me that thrilled with each and every birth on the farm. Celebrated each childs milestones, and each of their childrens' milestones. The me that loved fresh air and exercise. The me that read voraciously, pursued learning because I loved it. The me that put pride and energy into refurbishing furniture, homes, planted huge gardens, canned and planned. Thrilied with a visit from relatives, and to relatives.Yep, that lady. She was so much fun. You might have liked her. Haven't seen her for about 3 years….and I miss her.

I know I have to move on. And I do. But I've changed, and not for the better. Oh no. But still, gotta make the best of life, such as it is. Do others feel this discombobulated? You know, I've never really talked with other stroke survivors. Maybe that's why every time I write a post it's 2 pages long. Maybe. JMJ. Blessings to all.

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Dear TMJLove
I’m responding to your note, because your symptoms are most like mine . Except I’m 75 and that’s way older … about 15 years ago I stayed with a friend in the Hamptons in LI . Everything seemed fine , I slept on her sofa and wanted to get up to use the bathroom. Well, I couldn’t, everything was spinning, I couldn’t get up . She callled 911 and the Ambulance took me to The Hampton Hospital. After a bunch of tests they found a cavernous malformation on the left side of the brain deep within, never allowing any type of Surgery. I stayed in the Hospital for about a week and could not ambulate. Unfortunately I also have two Cardio issues, I have an MVP and diastolic dysfunction, but no Cardiologist will treat me for heart failure because my ejection rate is still high . In the last year I had 3 falls, out of nowhere I fall . I fell on Cement each time, the Neurologist says “ oh and you had a stroke in your Cerebellum that’s why you feel dizzy all the time . On March 24 th I fell outside a Restaurant after we ate, I’m 5’5 and weigh 145 pounds so I’m not overweight. On Monday I went to my Neurologist she did a Doppler, an MRI and an eeg , everything normal, but my headaches persist and at times I have difficulty reading. Today I saw my Cardiologist, I’ve been with him for 30 years, he put me on a one month monitor and took loads of blood… we shall see, meanwhile I like to show my Gratitude to this Group, May we all heal and enjoy Spring, Thank you for reading this. Lizzy

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I am 64 year old female, working nurse up until this point. I had my stroke 7 days ago and am home today.

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@jmjlove

@phughes814…Thanks….I think, lol. Just noticed your oneliner. And I liked it. 😊 Yeah, I'm here. But different. Believe me, each and every day I am grateful. Each new day is an opportunity to improve…and I don't mean only physically. As I make my way through my mental mud bog, I do not do great things, but if I can just do the little things well, I am satisfied…or should be. Blessings.

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JMJ I gave up on worrying about the next event or occurence. Its of no benefit to us. I focus on the positive things to life however little they may be at times. It has been 7 months since being diagnosed with Basilar Artery Stenosis and am so busy I don't have time to look back. I love my family, enjoy my work and live by the advice of my medical team and so far it's working. I am grateful for each day and if I can be of help to those around me thats what means the most to me. By the way, you have inspired me.

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Hello- Hello. I am a Mentor for Mayo Clinic for Lung issues/cancer. I also chime in the depression/anxiety group. Please welcome @brightwings. She has been in another group but probably will fit in better here. Thank you

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Hello, I am Bright Wings. I have been active here at mayo clinic connect since last year. I was getting off my antidepressant of 33 years and was still having withdrawal symptoms months later.
I also write in a group for multiple sclerosis.
But now I need to be here. And I am terrified.
As a young nurse I put a LAW in place that if I had a full on disabling stroke and got put in a nursing home I would choose to die. That policy is still firmly in place, I see.
As a result of going cold turkey when withdrawing from effexor, I had a full on brain event caused by nightmares from the withdrawal.
I dragged myself and my foot to the door, left hand clenched and useless, while drooling.
I completely recovered in less than an hour.
I am here because I had another brain event Thursday. Different this time. But I see it as a huge warning. I will come back and post about this new event in a bit.
So this is my story. I will get to reading. Bright Wings
I see you are here with me @merry, thanks

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@phughes814

JMJ I gave up on worrying about the next event or occurence. Its of no benefit to us. I focus on the positive things to life however little they may be at times. It has been 7 months since being diagnosed with Basilar Artery Stenosis and am so busy I don't have time to look back. I love my family, enjoy my work and live by the advice of my medical team and so far it's working. I am grateful for each day and if I can be of help to those around me thats what means the most to me. By the way, you have inspired me.

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@phughes814
Oh my gosh I am so happy to read this. You sing the same song I do and it makes me feel in good hands. Thank you so much.
I too an too busy and REFUSE to live in fear, but I am afraid right now. And its better to recognize this than ignore it.
I know that by taking an action I am more in control of my life. So I came here cuz I have very pointy ignored this field cuz of my fear as a young nurse.
I'm 68 years old now. Worked hard to recover from issues that started in childhood. Now this….Bright Wings

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@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.

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This is a follow on to my previous posting about going through cognitive testing at Johns Hopkins. I had the testing on Friday March 22nd. I had purposely not done any Googleling of what the tests were. I did not want to skew the results. The Dr. said that was a great decision. My husband and I were taken into an office and introduced to the Psychologist and the MD that would be reviewing the results as well as conducting some of the testing. I gave them my binder that contained all the test results from the various MRI scans and other tests given since I had the stroke. This they reviewed while I was in testing and returned at the end of the day.

The tests began with both of us being interviewed together to describe what happened. They also explained that the testing could not tell what, if anything, was lost since they had nothing to compare it to.

The Doctors were interested in what I experienced as well as my husbands perspective. This was a give and take session that probably lasted the better part of an hour. Then we were separated. I went with the Dr. that was going to give my tests. My husband was also given some forms to fill out giving his assessment of any changes he saw after the stroke. This was very interesting because in the final report they explained the difference between how I judged I did versus how Rob (my husband) judged I did.

My testing took about 7 hours with a break for lunch. I was placed in an office with the Dr. giving the tests. There were many tests in the battery. The tests were given orally or written. Only one test was done with a computer. I will not go into the various tests themselves. After the testing we were told we would get the results in about two to three weeks. The final report was 6 pages long and was an excellent benchmark of where I currently stand.

For me this was very important not only because of the stroke, but also because my mother had dementia. Now if I have another brain event or indications of dementia, I can be tested again from any facility that is certified for giving these tests. Since they are extremely standardized I would be able to compare my results to see if anything had changed.

In the conclusions they made recommendations to my General Physician for follow up. For me they recommended a sleep study, and treatment for depression. I am very glad I went through this battery of tests and highly recommend them for anyone who needs a benchmark of where you are cognitively.

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@ocala88

I am 64 year old female, working nurse up until this point. I had my stroke 7 days ago and am home today.

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@ocala8
What were your symptoms and what's going on now? Bright Wings

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@jmjlove

Ok. So. I feel a book coming on. Lol. If its TL…then DR. Just been thinking about my stroke. It will be 3 years in May. I was 57 years young. Was the day before mothers day. Happened around 6:20 am. Was at my kitchen counter and just happened to look at my clock. Being definite on time allowed for getting the TPA shot. Well, that and no bleed. If it helped much, I couldn't say for certain. Other than eyesight issues cleared up rather quickly. The left side experienced ataxia, not so much weakness as a lack of control, still struggling with that.

Anyway, this is not so much about the event, as it is about NOW. I got all the therapy I needed. Considering the size of stroke, and location, cerebellum, recovery was actually pretty good. As of now, most likely, many would not be able to tell. I mean, many people walk with a limp. Many walk with a slight stagger…(but they've been drinking, lol.) Many go out with less than lovely hair. Now that one does bother me.

Still finding my way back to Kansas. Still a bit flat emotionally. Still can't stop the tremor in left side which came well after the tsunami in my head. The tremor is most active when trying to stand still, hold a drink, do my hair, hold anything still. I find my shoulder blade hopping, left side, my leg bouncing, my arm twitching, knee giving out, repeatedly. Getting the @#%$ beads out of the silly putty is STILL a challenge. If I stumble, most likely I fall. Lost the natural reflex that will help regain balance. Gone. Still bite my tongue and cheek. Still can't appreciate a simple thing like a tasty meal. But most grieveous, still feel like an alien in my own skin. And THAT is the worst daily reminder of this life sucking, life altering, life suckin, (oh did I say that already???? Lol.) event.

Where have I gone? The me that felt enthusiasm. The me that enjoyed dinner guests. The me that played baseball with the littles. Drew and colored with them. The me that thrilled with each and every birth on the farm. Celebrated each childs milestones, and each of their childrens' milestones. The me that loved fresh air and exercise. The me that read voraciously, pursued learning because I loved it. The me that put pride and energy into refurbishing furniture, homes, planted huge gardens, canned and planned. Thrilied with a visit from relatives, and to relatives.Yep, that lady. She was so much fun. You might have liked her. Haven't seen her for about 3 years….and I miss her.

I know I have to move on. And I do. But I've changed, and not for the better. Oh no. But still, gotta make the best of life, such as it is. Do others feel this discombobulated? You know, I've never really talked with other stroke survivors. Maybe that's why every time I write a post it's 2 pages long. Maybe. JMJ. Blessings to all.

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@jmjlove
I came to this group today for the first time because I had a second brain event thursday. I have been reading since I got here.
Oh Darling, I am sitting here weeping after reading your struggle to find yourself after this earth and life shattering event.
I am crying for you and for me. I am struggling to breathe right now. I am an empath and didn't have my shield up. Ok I am back to myself now.
The depth of your pain is so deep, rarely have I experienced much this in others but I recognize it because that is how deep my own pain WAS because of extreme childhood abuse.
I was also crying because you stated my deepest fears. To lose my life as I know it because of a stroke after all the work of changing the effects of the events of my childhood and taking back my life completely would destroy me or that is my fear anyway.
However, I am a 68 year old woman who choses to be in control of her life. I do it well too. I teach others how to take back their lives also. I think I am going to start a new group titled TAKE YOUR LIFE BACK. Yes, but not today.
I have been on a 33 year journey to erase EVERY EFFECT of my abuse and last year I finished that journey. I mention this because I remember what helped and teach all those skills to others.
I invite you to click on my name and look for a recent post speaking about I AM THE GRACEFUL LIGHT.
I use that when I am feeling my worst, which has been often lately cuz of a multiple sclerosis relapse and other things happening in my life.
When I am the Graceful Light, I stand straighter and do not fall as much because I glide, not walk.
Anyways, for what it is worth, I am with you, sending much caring your way. I am also sending a tiny rainbow. That is yours to keep forever. It has sticky on the back of it so I hope you put it on your sleeve so you can see it move with you. It will give you light. You need that right now.
I invite you to draw a rainbow, post it on the wall in front of you and look at it often. It WILL bring you happiness often and you will get many dumps of good brain chemicals that will bighten your mood. I promise…
.
Bright Wings, stick with me baby cuz we are both going to feel better.

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@brightwings

Hello, I am Bright Wings. I have been active here at mayo clinic connect since last year. I was getting off my antidepressant of 33 years and was still having withdrawal symptoms months later.
I also write in a group for multiple sclerosis.
But now I need to be here. And I am terrified.
As a young nurse I put a LAW in place that if I had a full on disabling stroke and got put in a nursing home I would choose to die. That policy is still firmly in place, I see.
As a result of going cold turkey when withdrawing from effexor, I had a full on brain event caused by nightmares from the withdrawal.
I dragged myself and my foot to the door, left hand clenched and useless, while drooling.
I completely recovered in less than an hour.
I am here because I had another brain event Thursday. Different this time. But I see it as a huge warning. I will come back and post about this new event in a bit.
So this is my story. I will get to reading. Bright Wings
I see you are here with me @merry, thanks

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Ok, I have been reading for hours. I have used up all my energy and have to stop.
I wrote notes of things others said that I relate too.
I am experiencing brain flooding right now and I will be back.
Bright Wings who is not as scared now.

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@brightwings

@phughes814
Oh my gosh I am so happy to read this. You sing the same song I do and it makes me feel in good hands. Thank you so much.
I too an too busy and REFUSE to live in fear, but I am afraid right now. And its better to recognize this than ignore it.
I know that by taking an action I am more in control of my life. So I came here cuz I have very pointy ignored this field cuz of my fear as a young nurse.
I'm 68 years old now. Worked hard to recover from issues that started in childhood. Now this….Bright Wings

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I wake up everyday in a positive state of mind, I always have. My wife of 40 years doesn't understand how i do it but nonetheless its who I am.
In October of 2018 I was on the road for work when the first symptoms occurred, light headedness and my right side carotid artery throbbing I sat down and it went away a few minutes later so I ignored it. The next morning I went to the jobsite to meet with my crew and before I saw anyone the symptoms returned but with dizziness and this is what scared me. After taking an aspirin I had one of my guys take meet to a local Hospital where they performed a CT scan. A few hours later I was informed of the blockage in my brain. I was 59 at the time and for the first time in my life concerned about mortality. I didn't tell the physician but I flew home the next day because my family was in Arizona and if something was going to happen I wanted to be with them. I went to work the next day and sat down with the two owners I work for and they jumped in immediately to help me and I will always be grateful to them for being by my side.
Two days later the symptoms returned and again I found myself in the emergency room. Another scan, am MRI and several hours later I'm being informed of the several mini-strokes that have occurred two I was aware of and the rest completely shocked me. I was completely unaware there were no symptoms. I was released that day with prescriptions and a plan yet still thinking it was only a matter of time before the big one occurred. I googled that night and confirmed it a big mistake. I was more frightened yet concerned about how I was going to prepare my family for what could eventually occur. I felt like time was running out.
I met with my neurologist two weeks later and after informing him of my new found medical profession he realized I had been Googling and immediately asked me to stop. He was right, its of no benefit to us we aren't the physicians they are. From that point on I became the model patient following their direction and am on the positive road to recovery.
As I write this article I am sitting in a lawn chair alongside my wife of 40 years and my oldest daughter watching my youngest daughter coaching special needs children in a game of soccer. The lights have just come on and its an awsome sunset. Life doesn't get better than this!

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@phughes814

I wake up everyday in a positive state of mind, I always have. My wife of 40 years doesn't understand how i do it but nonetheless its who I am.
In October of 2018 I was on the road for work when the first symptoms occurred, light headedness and my right side carotid artery throbbing I sat down and it went away a few minutes later so I ignored it. The next morning I went to the jobsite to meet with my crew and before I saw anyone the symptoms returned but with dizziness and this is what scared me. After taking an aspirin I had one of my guys take meet to a local Hospital where they performed a CT scan. A few hours later I was informed of the blockage in my brain. I was 59 at the time and for the first time in my life concerned about mortality. I didn't tell the physician but I flew home the next day because my family was in Arizona and if something was going to happen I wanted to be with them. I went to work the next day and sat down with the two owners I work for and they jumped in immediately to help me and I will always be grateful to them for being by my side.
Two days later the symptoms returned and again I found myself in the emergency room. Another scan, am MRI and several hours later I'm being informed of the several mini-strokes that have occurred two I was aware of and the rest completely shocked me. I was completely unaware there were no symptoms. I was released that day with prescriptions and a plan yet still thinking it was only a matter of time before the big one occurred. I googled that night and confirmed it a big mistake. I was more frightened yet concerned about how I was going to prepare my family for what could eventually occur. I felt like time was running out.
I met with my neurologist two weeks later and after informing him of my new found medical profession he realized I had been Googling and immediately asked me to stop. He was right, its of no benefit to us we aren't the physicians they are. From that point on I became the model patient following their direction and am on the positive road to recovery.
As I write this article I am sitting in a lawn chair alongside my wife of 40 years and my oldest daughter watching my youngest daughter coaching special needs children in a game of soccer. The lights have just come on and its an awsome sunset. Life doesn't get better than this!

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@phughes814
Thanks for sharing that. I too am a very positive person. And I also respect that a disabling stroke is the one thing I am truly afraid of.
I love the picture you present, sitting with your family enjoying life. Thank you for sharing this wonderful story with me. Bright Wings

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@brightwings

@phughes814
Thanks for sharing that. I too am a very positive person. And I also respect that a disabling stroke is the one thing I am truly afraid of.
I love the picture you present, sitting with your family enjoying life. Thank you for sharing this wonderful story with me. Bright Wings

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It makes me realize once again, living the life you want is all about choice. BW

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Hello all- I'm Merry and am a Mentor for Mayo Connect. I'm mostly on the Lung Cancer and Lung Health and Anxiety and Depression. Although I will peek in on other sites from time to time.I am on here for the first time because I led @brightwings here. I know that you have met her by now. I thought to myself that, hey, I should be on here too.
About 2 1/2 years ago I started to have very weird experiences. I had double vision and large black holes when my eyes were open.I needed a new neurologist and I met with a PA. She was just terrific. She picked up some signs and had me get a head CT scan. Because of her astuteness she saved my life. There was more than 50% stenosis in my right common artery. Although it took me quite a while to get into see a doctor at MGH (Mass General Hospital) where I am treated for all major illnesses, I finally got an appt and after many many tests I was scheduled for a stent.
I have a history at MGH because I am a 22 year lung cancer survivor. My first lung cancer was treated by a surgeon at RI hospital and when he moved to MGH I followed him. I am a 4 time survivor of what is called Multifocal Adenocarcinoma of the lungs. This means that I get more than one nodule at a time. They are indolent and when they change they have to come out.
I will read posts here, but I'm sure that this is a site that I should be on. This Friday I have my 2nd year follow-up. And yes, I am nervous.

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