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
Your story touched my heart so much. In so many ways.
I am of the Vietnam war age. I know what my friends endured over there to be spit upon when returning home. The horrors they saw and in many cases but not all, participated in.
Your husband went thru a lot and I honor him. Please share that with him.
It sounds like you made an unbearable situation bearable one trick at a time. Good for you. It sounds like you have a great mind to figure this out so far with so little help. VA was useless in those days.
I appreciated you sharing your story and realized you have accomplished MY DREAM.
I had set up a huge dream family when I was 8. I would have a very large family with oddles of grands, greats and great, great grandchildren. My children did not cooperate in my dream and that's the way it is. I have one grandson out of 3 children of my body.
However, my family also spreads across 5 continents with children of my heart. I feel so blessed by that. I have shared my heart with hundreds of folks across the world. We each have been blessed in our lifetimes.
I worked hard to honor my feelings what ever they were. On the hardest days, I would find one moment of joy and I would put it in my pocket and take it out at the end of the day with any others I collected and realized it was a pretty good day. Some days were just too difficult to categorize any other way. Small baby steps get you a long way.
I have the gift of sharing what worked for me to others who have known great pain cuz it takes one to know one.
On the days that were just too difficult to bear, I learned I had the best day when I honored the pile of crap that was on my plate that day. I became greatful cuz you truly have to know the bad or worst to FULLY appreciate the best.
I am happy for you, you rock!
Bright Wings
Thank you for your blessing it means a lot.

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@jmjlove

@brightwings…..just found your lovely note to me. Sounds like you've perfected empathy, but I find those that have suffered much, and I don't mean just physical, are deeply empathetic. I ve spent 41 years married to a man 100% disabled by PTSD (marine, Vietnam War veteran) diagnosed unemployable. Ate stress morning noon and night. Abusive when triggered. Spent life desperate to avoid triggers. Learned to recognize the steps leading to meltdown, learned to cut it off, if possible. Poor hubby. Poor family. Neither husband or I even knew what we were dealing with for first 35 years of marriage. It was obvious he wasn't "normal", but it wasn't until a very stressful event occurred that he was convinced he absolutely had a problem that he absolutely could not control. Long story short. He went to VA. Was considered a classic case of severe debilitating PTSD. Received long overdue counseling, was put on disability. With no need to be reevaluted…which is normally mandated every one or two years at the VA Best thing that has happened in our 41 years together. So, abuse, due to little fault of his own, if you understand PTSD at all….is managed by finally having the tools to deal with his through the roof anxiety, phobias, and temper. Do you wonder about how much the abuse and stress contributed to your stroke later on? I do, but it really doesn't matter at this point. Sounds as though you've learned the art of making lemonade from lemons. You really do sound so "bright".

Life may have been bitter, but it was also sweet. My husband has always been supportive (when he wasn't having a meltdown) faithfull 100% always, protective, and a seeker of truth. He taught our 6 kids history, politics, economics, intelligent debate and the art of arguement ( as in debate). Provided a moral standard, work ethic, self sufficiency, problem solving. He is an electrician, artist, writer, inventor, musician. Together we managed to produce a photographer, composer of 16th century style sacred music/teacher of gregorian chant, two graphite portrait artists, a soprano, a tenor, a baritone singer. Website designer, engineer, builder/designer, business entrepeneur, farmer, and those married homeschool their own kids, just as we did. Most of the kids have more than one skill. NOh WAY was I smart enough or talented enough to make any of the above happen. Together hubby and I worked to create a home environment that allowed for developing talents. God gave them gifts. We did not.

Why tell the above? Certainly not to boast, because as I've said, no way can I make those things happen. And certainly I can't provide the talent and the level of skill needed to master those arts. I mention all the above to outline what my life was filled with BEFORE stroke. AFTER stroke my most thrilling accomplishments were buttoning my shirt, doing the ties on my shoes, putting my hair in a pony tail. My joy now is rocking my grandkids (14 of them), listening to them prattle, watching them draw and paint, play organ and piano. I still have life to live, thank God, but it's not at all what I imagined for my golden years. How about you? We're you prepared? Or foresee trouble down the road? I don't whine about it…does no good…and is annoying. My participationin life now is according to abilities on any given day. Life has been greatly simplified, that's for sure, which isn't all bad, lol. But, when you've spent your life working hard and producing…don't care if it's only raising animals, growing your own food, canning, or refinishing furniture…and you're reduced to relying on others, and just doing little things, it takes much mental adjustment, don't you think?

Thank you for your kind note. Again, my letter sounds like I'm tooting my horn. My kids got in trouble, caused heartache and disappointment, like most kids, but life was just so colorful and rich. My lesson to be learned is to explore the little noticed riches in life. To appreciate that which I may not have properly appreciated. My kids stepped up and took care of me, which is to be valued much more than a special skill. My husband will go to any lengths to see I get what I need. And each day, to wake up to another day and another chance to be a better me is a priceless gift. I want to be properly grateful and learn to look ahead instead of brooding over what is no longer. Really. Mental ruts are torture. You sound like you are excited and thrilled to share with others your excitement and pleasure of life.So very happy for you! God bless you! JMJ

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I am remembering my girlfriend's husband rolling out of bed screaming "incoming" huddling by the side of the bed in terror. This went on until he passed 4 years ago.
Our minds can be powerful tools or blockers, it just depends on finding the right key to use to unblock the challenges in front of you and never, never giving up. Smiling at you Bright Wings

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@brightwings

@jmjlove
Your story touched my heart so much. In so many ways.
I am of the Vietnam war age. I know what my friends endured over there to be spit upon when returning home. The horrors they saw and in many cases but not all, participated in.
Your husband went thru a lot and I honor him. Please share that with him.
It sounds like you made an unbearable situation bearable one trick at a time. Good for you. It sounds like you have a great mind to figure this out so far with so little help. VA was useless in those days.
I appreciated you sharing your story and realized you have accomplished MY DREAM.
I had set up a huge dream family when I was 8. I would have a very large family with oddles of grands, greats and great, great grandchildren. My children did not cooperate in my dream and that's the way it is. I have one grandson out of 3 children of my body.
However, my family also spreads across 5 continents with children of my heart. I feel so blessed by that. I have shared my heart with hundreds of folks across the world. We each have been blessed in our lifetimes.
I worked hard to honor my feelings what ever they were. On the hardest days, I would find one moment of joy and I would put it in my pocket and take it out at the end of the day with any others I collected and realized it was a pretty good day. Some days were just too difficult to categorize any other way. Small baby steps get you a long way.
I have the gift of sharing what worked for me to others who have known great pain cuz it takes one to know one.
On the days that were just too difficult to bear, I learned I had the best day when I honored the pile of crap that was on my plate that day. I became greatful cuz you truly have to know the bad or worst to FULLY appreciate the best.
I am happy for you, you rock!
Bright Wings
Thank you for your blessing it means a lot.

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@brightwings …Yep, crap on a plate, lol! , That's exactly what the day brings. I go to bed and hope I won't be dished up the same old crap tomorrow. But, half the time it's my attitude. Then I have to adjust. Thanks brightwings. You are a ray of sunshine, bit so real, too. I don't like saccharine. Life ain't that sweet. It's tough, but with consolations along the way. I prefer sundhine over gloom, but gloom happens. Gotta make peace with it. Don't have to like it, though. Sounds like you make your own sunshine! Good for you, and thanks for sharing it! Am glad you have family to love and be proud of. Really. Hope you get to see them, though I'm sure you communicate plenty. Blessings. JMJ

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@jmjlove

@brightwings …Yep, crap on a plate, lol! , That's exactly what the day brings. I go to bed and hope I won't be dished up the same old crap tomorrow. But, half the time it's my attitude. Then I have to adjust. Thanks brightwings. You are a ray of sunshine, bit so real, too. I don't like saccharine. Life ain't that sweet. It's tough, but with consolations along the way. I prefer sundhine over gloom, but gloom happens. Gotta make peace with it. Don't have to like it, though. Sounds like you make your own sunshine! Good for you, and thanks for sharing it! Am glad you have family to love and be proud of. Really. Hope you get to see them, though I'm sure you communicate plenty. Blessings. JMJ

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Oh, I have been thru my share of crap, both mine and others. It is all about our feelings. But to honor them, you first have to recognize them.
When I started seeing my 4th therapist, she would ask me how I was feeling. Often I had no clue. Truth…
So she would pick up this piece of paper I learned to HATE.
IT was full of little faces showing different feelings. How did I ever go thru all those years of therapy and no one realized I didn't know how to feel anything but sad or happy.
Well, with great resistance, I learned to feel inside myself what the face of the little kid felt. It was horrible!!!! To be in my 50s and realize all this was so stunning.
What a great little actress I became as a kid. Keep everyone happy. This was my job.
I just didn't know how to handle relearning how to feel. It sucked big time.
One foot in front of the other, blah, blah, blah.
But long story short, by sticking with it, I did learn how to be happy or sad and even angry. I honored myself for whatever I was feeling.
Good for you all. Keep on keeping on, cuz no matter how bad things are today, it will be different tomorrow. That's something you can count on..
Attitude is everything……Bright Wings

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Will some one with a computer please Google, NPR, From Gloom To Gratitude.
please then post the link here.
Thru my 33 year journey to take back my life from the extreme abuse I grew up in, I have learned to accomplish these 8 tips and live a fairly joyful life. You can too.
I hope you each print them out and do them everyday. I promise it will make your life sweeter.
Bright Wings.

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I usually say to an unsuspecting person, I promise I won't ask you to do anything I have not done…
This is truth…however, I do neglect to say I have tried or done just about any and every trick to heal…why???
.
Cuz I was worth it! You are too.
.
THE ROAD TO HEALING IS DIFFICULT
AND IT IS SO WORTH THE TRIP.
.
Bright Wings

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@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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Thanks for sharing, I had the exact experience. It has been 7 months now and I am greatful also. I have days of very unstable balance. I try balance exercises, and such. I was wondering if anyone else suffered a left side no reason stroke and how long the imbalances last?

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Yes contact me. I have questions about balance.

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@lvon

Yes contact me. I have questions about balance.

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I hope you do not mind if I barge in here. I had a left cerebellar stroke almost two years ago. I didn't know it at the time. Mine was caused by a left vertebral artery dissection that occurred during cervical fusion, vertebrae c4-c5-c6. I had extreme vertigo and a terrible headache. However, after about a week of using a walker and cane, the balance issues started to dissipate. Still sometimes I tend to veer to the left, and stairs are still something I take my time on. I use hand rails a lot more than I did before the surgery. For me, the initial problems were all blamed on the surgery and the drugs since they did not know I had had a stroke. It wasn't until about 1 ½ years after that I had an MRI that caught it. I am of the opinion that at this point I have what I have. One of my neurologists said the occasional dizziness I get is probably due to the temporary lack of blood to the cerebellum and probably will never go away. I also tend to move a bit slower than I used to.

Anyway, I hope my experience helps.

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@bille Thanks for sharing your experience! Everyone's input is what makes Connect a great place to learn and gain helpful information.

How are you feeling now, @bille? Have you had any post-stroke physical and/or cognitive therapy to help with these symptoms?

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@hopeful33250

@bille Thanks for sharing your experience! Everyone's input is what makes Connect a great place to learn and gain helpful information.

How are you feeling now, @bille? Have you had any post-stroke physical and/or cognitive therapy to help with these symptoms?

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Nothing physical. A month ago I went through Cognitive testing at Johns Hopkins. It was interesting. They recommended I go through a sleep study, and treatment for depression. I have completed the study, but have not yet gotten the results.

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@bille

Nothing physical. A month ago I went through Cognitive testing at Johns Hopkins. It was interesting. They recommended I go through a sleep study, and treatment for depression. I have completed the study, but have not yet gotten the results.

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If it were me, @bille, I would ask specifically about what type of cognitive/physical and/or occupational therapy might be helpful. The treatment for depression is a good idea, especially where brain damage has occurred, however, it is important to try to maintain these other systems in the body that were affected by the stroke.

Will you give that some thought?

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@hopeful33250

If it were me, @bille, I would ask specifically about what type of cognitive/physical and/or occupational therapy might be helpful. The treatment for depression is a good idea, especially where brain damage has occurred, however, it is important to try to maintain these other systems in the body that were affected by the stroke.

Will you give that some thought?

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Yes I will. Cognitively, I see things that have slipped. However I still tested very well. As they said at the outset, the tests could not show what I lost, just where I am now. I now have a baseline to test against in the future should I need it. My Mom had some form of undiagnosed dementia before she died. At least I have a baseline.

I am trying to take things with one focus at a time. For the longest time it seemed I had a different Specialist every day. My GP and me can then take the next steps for depression, i.e. drugs/counseling. I also need to see a urologist about incontinence.

So one day/step at a time.

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@bille

Yes I will. Cognitively, I see things that have slipped. However I still tested very well. As they said at the outset, the tests could not show what I lost, just where I am now. I now have a baseline to test against in the future should I need it. My Mom had some form of undiagnosed dementia before she died. At least I have a baseline.

I am trying to take things with one focus at a time. For the longest time it seemed I had a different Specialist every day. My GP and me can then take the next steps for depression, i.e. drugs/counseling. I also need to see a urologist about incontinence.

So one day/step at a time.

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@bille
This sounds like a good approach. Especially "one focus at a time."

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Ya know, I'm really beginning to hate all the doctors and therapists involved in my care, especially since my stroke and aneurysm. Well, it's really not the doctors I hate. It's the divided and subdivided care. I miss the days when I went in, saw my primary, once or twice a year, she ordered my bloodwork, called with results. Bam. Done for another year. Now, every specialist I see has my med list wrong, or not current, insists on weighing me, even if i was there the week before, wants follow up visits and tests run. Then follow up visit to find out test results.

Many things can be monitored by my primary. Tests can be ordered by my primary, information passed on. Im going in so many different directions. I know I should be grateful, but instead I find myself very annoyed. I realize my needs are more complicated, but I still prefer that the specialist visits be kept to bare minimum. Am I just sour grapes??? How much of this is really necessary, how much is about liability…. and is my primary care doc being squeezed out of the loop? I feel like i'm being outsourced. There has always been specialists, I get that, but geesh, there's a specialist for every part of my body. Just wish I had a doctor to take care of all of me, except when truly necessary.

There. My rant is over. I feel better. Anyone one else feel like me?

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