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.

Cerebellar stroke, 2017. Still not comfortable in my own skin. Still feel like I slog daily through a mud bog. I had a "large" right side stroke. The new me is quite unknowable….to me. I feel my world is alien and my place in it imprecise. Lost my left side function. Did therapy for a year. Very aggressive, which was my nature. If I could, I would. And I did. Within 3 months I was walking miles. Husband cut a path around the farm that was my walking path. Had an unexpected cling on. My left side developed a type of palsy, making buttoning, cutting hair, and my own nails nearly impossible. But…I digress, lol.

Wanted to know if anyone else has had a palsy develope AFTER, (for me, a couple months) the big event. Would love to write some happy clappy BS, but cant. Would have to lie. Won't do that. Also…..headaches, scary cerebellar head aches. Anyone?

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Just to give further detail….the head aches are terrible. Can barely stand the feel of a soft pillow. Makes me fear another stroke on my horizon. Say it isn't so. 😉

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@colleenyoung

Hi @strokesurvivordynamo, (I love your username.)
Thanks for kicking off this topic. Given that cerebellar strokes account for less than 10% of all strokes, this is an important discussion group to form so that survivors can share their road to recovery together. Can you tell us a bit more about your story? What impact has stroke had on you? Did your stroke affect the left or right side? How is rehabilitation going?

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When they admitted my husband to the hospital they diagnosed him with Ischemic stroke, but when they discharged him the diagnosis was Cerebellar Stroke, acute. He has Stage 3 chronic kidney disease, is diabetic and high blood pressure. He came home from the hospital yesterday afternoon and is still suffering from very bad balance issues. Even with the walker.

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@insulateret

When they admitted my husband to the hospital they diagnosed him with Ischemic stroke, but when they discharged him the diagnosis was Cerebellar Stroke, acute. He has Stage 3 chronic kidney disease, is diabetic and high blood pressure. He came home from the hospital yesterday afternoon and is still suffering from very bad balance issues. Even with the walker.

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I am sorry for your husband. Cerebellum is where the stoke occurred which is also called the little brain at the lower back of your head and ischemic means the stroke was cause by a blood clot . I am almost two years since my cerebellum stroke(it was a clot too) . I still have mild balance issues. It takes time, some rehab, Physio too to help. I have spent a lot of time in the pool to strengthen the left side. I can’t believe I am still getting better after this time but it is small amounts. Don’t be discouraged- it takes time.

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@jmjlove

Just to give further detail….the head aches are terrible. Can barely stand the feel of a soft pillow. Makes me fear another stroke on my horizon. Say it isn't so. 😉

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I had my stroke back in December 2015 and I've always had those headaches. whenever I lay on a pillow or rest my head on the wall it always hurts. my neurologist just put me on topamax and started me on SPG blocks. I did one and have two more. It's only been a week so I dont expect results this soon.

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@supra865

I had my stroke back in December 2015 and I've always had those headaches. whenever I lay on a pillow or rest my head on the wall it always hurts. my neurologist just put me on topamax and started me on SPG blocks. I did one and have two more. It's only been a week so I dont expect results this soon.

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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?

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@insulateret

When they admitted my husband to the hospital they diagnosed him with Ischemic stroke, but when they discharged him the diagnosis was Cerebellar Stroke, acute. He has Stage 3 chronic kidney disease, is diabetic and high blood pressure. He came home from the hospital yesterday afternoon and is still suffering from very bad balance issues. Even with the walker.

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Insula, when I came home, balance was gone, I still had terrible vertigo, still vomitted, and had to work very hard to get to the point where I could use the walker. But, I was 57, in good health, and progress was made quickly. Well, took a couple months, but progress was made every day. Once he gets better with walker, he will be inspired to keep working harder until he can walk without it. You are, as of now, at the most overwhelming point. That will pass to just a memory as he begins therapy and makes progress. God bless!

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@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?

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My headaches are constant but when i lean or lay on any surface hard ir soft it hurts more. My stroke occurred on my right cerebellum.

Liked by jmjlove

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@supra865

My headaches are constant but when i lean or lay on any surface hard ir soft it hurts more. My stroke occurred on my right cerebellum.

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Hi how are you? My caverneus is in brain stem. I had a hemorrhage on 9/30/18

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@supra865

My headaches are constant but when i lean or lay on any surface hard ir soft it hurts more. My stroke occurred on my right cerebellum.

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Right side here too. Left side affected. Little control over limbs, but still had strength. Kinda strange. But the headaches, they have done nothing but get worse. Do most people with this type stroke end up with these headaches? What do you use for painrelief? Aside from the injection treatment you are receiving, if you dont mind me asking?

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@janc1947

Your symptoms of cerebellar stroke are similar to mine, Vertigo, vomiting and double vision. Happened about 18 months ago. I'm 71 and feel depressed because I'm afraid I have brain damage. Got to the hospital about 2 or 3 hours later, stayed 8 days with multiple MRI's, etc. Now just trying to stay connected. Keep your chin up. I hope you are feeling better soon.

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How is your recovery going? Where you able to swallow right after your stroke? What helped with your dizziness and nausea ?
Thank you
My mom just had a stroke … it is difficult to watch the struggle.
I am sorry that you had to go through having one.

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@jmjlove

Right side here too. Left side affected. Little control over limbs, but still had strength. Kinda strange. But the headaches, they have done nothing but get worse. Do most people with this type stroke end up with these headaches? What do you use for painrelief? Aside from the injection treatment you are receiving, if you dont mind me asking?

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I used ibuprofen up until last week when my neurologist put me on topamax.

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@jmjlove

Just to give further detail….the head aches are terrible. Can barely stand the feel of a soft pillow. Makes me fear another stroke on my horizon. Say it isn't so. 😉

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I still sometimes feel like I am looking out at things going on rather than really experiencing them 1st hand. It is weird.

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@bille

I still sometimes feel like I am looking out at things going on rather than really experiencing them 1st hand. It is weird.

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Bille, I still feel like that, too. It's been almost 3 years now. I may have to accept this is the new me. I can only describe it as a surreal world. Still experience joy, sadness, still have enthusiasm, but it all feels less intense, less real. Truly don't feel depressed in as far as a medical/psychological sense goes. Just feel oppressed, like there is a weighted veil between me and everyone else. Intellectually I know nothing has changed. My husband and children love me. The grandkids are still adorable, still make me laugh, still thrill me….but somehow it is all…..less. I am the only thing that has changed.

Do you feel this way? It's a bit disconcerting to me. I used to jump in with both feet. Now I dip a toe in and consider if I'm up to it….whatever it is. My brain wasn't damaged in a place that affects emotions, but my emotional make up is altered. I am very grateful to be here for my loved ones.My stroke was large, damage was great. My comeback was good. Deficits manageable, for the most part, but living with this surreal feeling is probably my greatest challenge and no amount of work on my part can correct this.

The headaches are impossible to control and hard to endure. They taint everything I do. Not exactly wreck all pleasure, but put a slight pall on everything. Hard to slog through. How do others handle these headaches?

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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.

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