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.

@hopeful33250

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

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Thanks. This is a great list.

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@bille

Thanks. This is a great list.

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I'm glad you like it, @bille! It really helps to direct discussions and introductions and gives the patient some control over how to conduct your concerns with a new doctor. I like anything that puts the patient in the driver's seat!

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@bille

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.

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Yep, sounds very similar to how my hand operates. I though I was an odd duck with this condition, but looking up tremor, I see it is a known side effect of cerebellar stroke. Thank you for your response. At no time have I had this insight as to the tremor I deal with daily. I also found out it is not unusual to have this develope weeks and even months after stroke.I have learned something that helps me understand me. Thanks again.

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@hopeful33250

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?

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From my reading, people with brain damage experience some anxiety when in places that have a lot going on. Did some research and it was referred to as brain flooding. I guess there is a lot for your brain to process (smells, heat, moisture, sights, etc) and rather than get overwhelmed, the normal brain ignores the inconsequential things and focuses on the things that could cause harm. I read that the brains of people with strokes or other brain injuries can’t selectively process like people without brain injuries and flooding happens. This has led to anxiety and getting light headed in my case. It is much better now, I still get it at times.

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So many times since my TBI I have had to leave a store, a social gathering or other public places because I cannot tolerate the noise,the stimuli, the constant changing activity, the lights or too many people talking at once. In a smaller group if a couple of conversations are going on at once I feel like shaking and am too distracted often to follow either group. Then I get angry, really angry…….which others do not deserve, so I don't take it out on them, but sometimes my husband gets it.

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@lakelifelady

So many times since my TBI I have had to leave a store, a social gathering or other public places because I cannot tolerate the noise,the stimuli, the constant changing activity, the lights or too many people talking at once. In a smaller group if a couple of conversations are going on at once I feel like shaking and am too distracted often to follow either group. Then I get angry, really angry…….which others do not deserve, so I don't take it out on them, but sometimes my husband gets it.

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For me, it has gotten better. I go into rehab mode when I feel this coming on, I start looking at things beside me while walking, food on shelves in the grocery store. the big machines at work, etc. It was tough at first, but I found this worked for me to bring the anxiety down when looking straight ahead. Surprisingly, I can go to concerts or parties and not have an issue.

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@thinkitseeitdoit

Has a anybody talked about depression, i know i had to get some help from my doctor to get over mine. I also have just come to realize as my 1 year approaches its harder and harder to stay excited and if i let it get me down it will. Im aware of it, i won't hesitate seeing my doctor if i need to. Its hard enough to recover from this stroke i don't want to fight depression.

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I haven't had issues with depression, but there were times early on where I got angry. I have a cousin a few years younger than I that had a stroke and that's the first thing he asked me when he stopped by a few days after my stroke to visit, so I'm assuming it is common. To this day, I try to focus on the gains I have made and am still making, keeps my focus on the positive, seems to work for me. I still pick that one thing that is difficult now and work at getting better at it. Once I master that one thing, I chalk it up as another win, keeps my spirits up. Just too much when trying to think about the big picture here with a singular focus of getting back to "normal", I'll take the 1000 little wins!

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@hammondm99

I do like what you said, "I'll take the 1000 little wins!" I wish that could be everyone's goal when they are recovering from a trauma!

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Exactly! That is why stores/malls are problematic ….too many things to see and too much head turning……yes that is how it is. Therapy has been helpful with head position and eye training.

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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

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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5:19 AM on January 6, 2018. I remember looking at the clock before the room started spinning. Funny how we remember the exact time!

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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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I don't know you JMJ but it sounds to me like she's still there. Enjoy every day you have.

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@phughes814

I don't know you JMJ but it sounds to me like she's still there. Enjoy every day you have.

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@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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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 Placy Hall. Yes you’re lucky! I had stroke 9/30/2018 I was in hospital for 2 weeks and 2 weeks in rehab, I Right side a was affected. But I have caverneus malformation in brain stem. That’s very scary because I can have other stroke at any time,because is in brain stem. I can’t have a surgery because is very dangerous😞 I still have the right side numb. When my husband scratch a hurt like is fireball over this side, my memory is not good, now I have fibromyalgia is bad. Sooo yes ones again you’re very like. Sometimes I don’t know where I’m, forget the water running, loosening everything ! I have on my hands. I’m scare living with the unknown, that at any time I can have other stroke or not. Good luck to you😊🙏🏻🙌🙏🏻

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