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.

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

@maryar

Did you ever get answers here? I also would like to connect to someone that has "been there" as I has so many questions and find so few answers.

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Hi. I am the same but I got some help with eyes jumping and balance problems. Did u get help yet?

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Good Evening , my mother had a cerebellar stroke a month ago. She is 86. It seemed to effect her memory and speech , mostly her memory . Her balance is off she has to use a walker.. my question to you is. Do you regain your speech and memory. Can you recover from this kind of stroke.. if so what kind of therapy would you suggest and how long did it take to recover. I thank you for your help. Connie

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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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Did your Doctors ever come up with a reason of what caused the stroke in the 1st place? Where did the clot come from? I had many tests checking for bad arteries/vessels, nothing seemed to look like an issue. They also did a mental eval of some kind, which surprised me a bit. Was it to see if I was just a whiner or making it up? I wonder if it would be at all helpful, if people that have had a stroke of this type created a list of common complaints/issues so to speak, to see what is relative/common to most survivors. Not sure if it would fix anything or help anyone, but we might somehow fell better knowing we are dealing with the same issues.

I have a few questions for others, that have had there stroke more than a few years ago.
1. Do you feel like it is harder to remember things in detail, more that a few days? I am almost 63, so I am sure age as something to do with it, but I find it helpful to write things down. I don't think I am explaining this quite correctly, but it is strange to me when one does not remember things that should give one pleasure or of having fun, like when on a vacation. For me everything is just like work. I wonder if it is because we have to focus so much more than we did before, just to preform our daily jobs, as we did before the stroke. Which is tiring in itself.
2. Does anyone else ever get sharp pains near the sides of your head? Just out of the blue, with no warning. Mind feel almost like an ice pick type, electrical shock. Will stop you in your tracks, for a few seconds, then it is gone. But was alittle nerve rattling the 1st few times.
The one thing I wish Dr.'s would not say after a few years is: " I think all this is just an after effect of your stroke, I think you just need to learn to live with things, as they are". That statement might well be true, I just don't want to hear it!
3. Do Dr''s ask you if you are depressed? Is that a side effect of any type of stroke? Seems likely, given how ones life changes in a heart beat. Maybe Dr.'s need to consider trying to treat people without giving them a pill all the time OR on the flip side again saying you need to live with it.
I did go to a Chinese herbalist type Dr a few months ago and he gave me some herbs and did acupuncture, that made a big difference at the beginning, felt so much better than what the normal has been, but now after a month or 6 weeks, it is kind of same old thing. It was also kind of expense, since insurance will not cover any part of this type of visit.
Remember, the important thing is to: KEEP THE FAITH!! Keep your chin up, keep looking for new answers and work through it! I am also a 41 year cancer survivor, so I am living proof you can't or shouldn't give up ever!

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I’m 31 and I had a stroke June 30. I had no normal symptoms and drs thought it was a panic attack until hours later. I ended up having brain surgery. One of my arteries exploded. My eyes were full of blood. I still have constant nausea and vertigo.

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@hopeful33250

Hello @atthewall and welcome to Mayo Connect

I am so glad to hear that someone has an understanding of the combination of the neck stiffness with the possibility of a cerebellum stroke. Even though it has been several years since this incident you must be relieved as the possibility of a diagnosis and treatment might be on the horizon.

When you will be seeing the stroke specialist? Will you post again and provide an update?

Teresa

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NHS is National Heatlh Service, the British universal healthcare.

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@louisef

Hi. I am the same but I got some help with eyes jumping and balance problems. Did u get help yet?

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How did you get help, especially with the jumping eyes? Do you have light sensitivity and if so, do dark glasses help even indoors? Thank you for your response.

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@elizabethmm

How did you get help, especially with the jumping eyes? Do you have light sensitivity and if so, do dark glasses help even indoors? Thank you for your response.

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Hi. Doctors suck. Most of them. The only 2 dr who helped me were a developmental optometrist and an Otologist. to locate eye dr. go to covd.org
No other type of eye dr has the training or equipment to diagnose and help. My glasses have prisms and binasal blocking. If the doctor knows what that is then that is the right one. If they look at you like you are crazy that that is not the right doctor. My place is OCVT in austin, tx. It doesn"t cure problem but lessens the nausea, vertigo & such. Vision therapy hasn't helped. I wear sunglasses ALOT. always when outside in daytime, even if cloudy. Usually leave them on if I have to go into a store with bright lights. My gym has alot of windows and skylights. I wear sunglasses in there. I also have vestibular damage that affects balance. The best person I saw was dr. James Kemper in Austin, tx. Specifically what he is is a ear nose and throat doctor who is in otologist. Basically he specializes in the ear. There is a test called a posturegraph. You hang from the ceiling in a harness and they move the floor and the wall around to see if you lose your balance or not. I was hanging from the ceiling by the time my test was over. Private message if you want to talk more.

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I am 50 years old and I've recently suffered a stroke in the cerebellar in May 2018 . I had a TIA in Oct 2015 in which no explanation was found but now with further searching after my proper stroke I have a PFO (Patent forume oval) 3 months on and still get tremors, headaches, clumsiness with left arm, dizziness and weird feelings in my head . When does it get better ?

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And the NHS no longer comission the closure of PFO's to prolong my life but I can get a boob job for £5000 of a gastro band done cos I'm over weight from eating too much, there just no logic ....

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@pizza68

And the NHS no longer comission the closure of PFO's to prolong my life but I can get a boob job for £5000 of a gastro band done cos I'm over weight from eating too much, there just no logic ....

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Hi. Sorry you have this. My cerebellar stroke happened in 2013 at 43, after the chiropractor tore my vertebral artery. I am in the US, but I know all about how insurance companies are sometimes worse than a stroke. Doctors suck for the most part. I had a constant raging headache for about 4 months. I was prescribed narco and slept about 16 hours a day. Now I get headaches only f I do too much.
The brain fog lifted after about a year and I quit taking zofran. I was taking it for vomiting/nausea but it left me in a fog. I had debilitating nausea, vertigo and eye pain. It took about 12 doctors and 2+ years to get to the 2 roots of my issue. I don't know if this is what you have, but here is my info in case anything sounds familiar.

1. My eyes do not relay images to my brain correctly. It is because they are not perfectly alined and don't work perfectly together. And they move erratically instead of where I want them to go. The ONLY thing that helped is finding a neuro developmental optometrist. Also called a neuro optometrist. NOT opthamologist. My eye place is OCVT in Austin, Tx. Covd.org can help you find a Dr and has some good patient resources. They can't cure but helped to reduce nausea, vertigo and headaches.

2. My inner ear on one side is damaged. So it gets weird signals from my eyes AND it doesn't work right anyway. I went to "balance" therapy, physical therapy and nothing helped. Look up Vestibular Disorders Association. Good resource. Finally, I found an Ear Nose & Throat dr who is an Otologist. He did some hearing tests, and then the BEST part. He did a test called a posturograph. You are in a harness (for safety) then they move the floor and walls around to see if you can keep balance. I was hanging from cieling on the harness at the end. Depending on how you react to specific movements, he can tell where why and how you are messed up. My guys name is Dr. James Kemper in Austin tx if you want to see his specifics for comparison.

Because of 1&2 above, I am still a little clumsy, appear drunk sometimes and really can'T do any simple chores without lots of rest breaks.

If easier you can contact me directly by private message.

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