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.

@tigsmum

That’s me, but I was in my early 50’s . Sudden aneurysm ruptured in my head. 2 brain surgeries . I’m a survivor I know I am blessed but I’m really angry about how I the deficits I have been left with . Looking for someone who gets it!

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Hello @tigsmum and welcome to Mayo Connect!

I am glad that you joined Connect and posted about your aneurysm and the lingering side effects. Deficits left by this type of disorder are certainly difficult to deal with and it is understandable that you would be frustrated and angry.

Would you be willing to share more about these deficits in specific terms (like memory, attention, focus, speech problems, word-finding, physical problems with gait, balance or walking)?

By being a bit more specific other members can share how they have been helped with these deficits.

I would also encourage you to ask your doctor about neurocognitive therapy (different than physical therapy or occupational therapy). This type of therapy addresses the cognition issues of memory, speech difficulties, etc.

Will you post again?

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Theresa, thank you for your response. 2 aneurysms 1 suddenly ruptured Aug. 12 at 1110am, I was facing my wall clock in my office in the hospital, yep that’s where I was when it happened. I’m a nursing director. The next thing I can recall is mid October with a searing headache and vomit due to the resulting hydrocephalus. Then rehab... Ugh!

Deficits... constant vertigo, nausea, photo/phonosensitive, double vision, insomnia due to spinning at night, tinnitus (loud), short term memory failure, difficulty with complex problems especially math. Depth perception disturbances, rising in a car is hard especially when the driver is fast and the roads are winding.
Meclazine is NOT doing much, vertigo seems directly related to fatigue but haven’t figured out anything else yet.
Most of all I’m mad and sad about what happened and what I have become.

Thanks for reading this, I know there are those who are much worse than I and still more who did not live to tell their story.

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@midnightsun18

I wouldn't mind some insight. My spouse age 42 suffered a stroke I was told Left Inferior cerebellum and middle cerebral. We have been separated so I have no details on the events leading up to it. He is currently paralyzed on the right side, can only say no, yeah and uh. Responds to questions with headshakes which lead me to believe he understands. Has shown emotion (sadness, I mentioned our dog died). His health wasn't the best leading up to this, he is not overweight just didn't eat well and take care of himself. Its been 13 days, I wouldn't mind some information on where you began and how you progressed. I don't know what to think, although he does have an infection in the heart which he is received 6 weeks antibiotics for and may need a heart valve replacement in the future.

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dear @midnightsun18, how are you holding up? From what you wrote, I am pretty sure your spouse understands most if not all of what you are communicating. His ability to respond is however limited at this time. I think the thing that helped me cope with the situation was to read up about strokes, and stroke survivor stories. It helped me better understand what my husband could be going through, and what I needed to prepare myself for. It was also encouraging to read about how survivors rebuilt their lives after their stroke.
Additionally, it helped to understand how the damage in that particular part(s) of his brain affected him. The infarct in his left posterior cerebellum had led to ataxia on his right side.
It also helped when I spoke to his doctors to find out how he was going to be treated (what scans and for what reasons, what rehab etc), so I felt less lost.
How is your spouse doing at this time?
There are many of us going through the same thing. You are not alone x

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@tigsmum

Theresa, thank you for your response. 2 aneurysms 1 suddenly ruptured Aug. 12 at 1110am, I was facing my wall clock in my office in the hospital, yep that’s where I was when it happened. I’m a nursing director. The next thing I can recall is mid October with a searing headache and vomit due to the resulting hydrocephalus. Then rehab... Ugh!

Deficits... constant vertigo, nausea, photo/phonosensitive, double vision, insomnia due to spinning at night, tinnitus (loud), short term memory failure, difficulty with complex problems especially math. Depth perception disturbances, rising in a car is hard especially when the driver is fast and the roads are winding.
Meclazine is NOT doing much, vertigo seems directly related to fatigue but haven’t figured out anything else yet.
Most of all I’m mad and sad about what happened and what I have become.

Thanks for reading this, I know there are those who are much worse than I and still more who did not live to tell their story.

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Your feelings are all understandable, @tigsmum

You did not mention any follow up therapy (PT, OT or neurocognitive therapy) but given that you are a nursing director, I'm sure you are not leaving any stone unturned in your recovery. You might also considering some counseling with a psychologist who has expertise in treating brain surgery patients.

We also have a discussion on Connect called, PICS, https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/?pg=12#comment-65501. The Members here talk about recovering from post intensive care syndrome following major/emergency surgeries. A Mayo nurse facilitates this conversation. You might find it helpful as well.

Will you keep posting and let me know about your recovery progress?

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I recently suffered from a subacute cerebral infarct. (July 27, 2018) My syptoms were sudden and became worse over a very short period of time.

I was driving in between shifts at work. (I worked two jobs at the time.) I was at a traffic light, when I got this sudden sharp pain the the lower right hand side of the back of my head which then radiated through the entire right side into the front of my head. It was sudden but then went away, then came back, and went away again. I was confused by onset and retrieval of this pain. But after about an hour the pain was strong and constant. I had the occasional dizzy spell and queasy stomach, but never got overly concerned because as a teenager I was diagnosed with chronic migraines, and all of these symptoms I had with migraines. So i took some Advil, drank water and ate a little something with the hopes these things might help.

About 15 mins aftet eating I got the extreme urge to vomit, and once I was done I had extreme diffuculty with standing and walking. So I sat down at one of our tables (I am a chef) and laid my head down for a minute. I started to profusely sweat, became very pale, and had really bad shakes as well. I threw up a couple more times, at which time I contacted my wife to come pick me up. We went home, because I was still dismissing all of this as a severe migraine, and I laid in bed and fell asleep for an hour or two.

I woke up and immediately got sick again, and we decided i should go to the E.R.. When I got there I described my symptoms, and they immediately performed the stroke tests. (Arms up, follow finger with eyes, raise legs, rub heels on opposite shins, identified pictures, and read a list of words.) I passed all of these with no trouble at all. A CT was done and they located an abnormality, so I was admitted.

The next morning an MRI was performmed at which time I was diagnosed with the cerebellar stroke. Even with contrast they couldn't find and vessel blockages or damage. So I was sent to ICU for further monitoring for swelling or bleeding. All of which never happened so after a week or so i was sent to acute rehab to work on my walking. I was released in Just 2 days. I regained mobility really fast.

Now I still have random dizzy spells and i have a constant headache that I can't get to go away. The pain will lessen, but will never fully subside. I have difficulty working, because with me being a chef I have to be on my feet for hours in high heat and high stress environments. I'm very easily agitated, and have mood swings to a degree. And within the last few weeks I have had constant neck pain that causes the pain in my head to rise, which my primary Dr. insists is muscular. But I don't know whether to buy that or not.

I'm just wondering if I should be truly concerned about my neck pain or not. As well as how to deal with the agitation and mood swings. Thanks in advance.

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@tigsmum

Theresa, thank you for your response. 2 aneurysms 1 suddenly ruptured Aug. 12 at 1110am, I was facing my wall clock in my office in the hospital, yep that’s where I was when it happened. I’m a nursing director. The next thing I can recall is mid October with a searing headache and vomit due to the resulting hydrocephalus. Then rehab... Ugh!

Deficits... constant vertigo, nausea, photo/phonosensitive, double vision, insomnia due to spinning at night, tinnitus (loud), short term memory failure, difficulty with complex problems especially math. Depth perception disturbances, rising in a car is hard especially when the driver is fast and the roads are winding.
Meclazine is NOT doing much, vertigo seems directly related to fatigue but haven’t figured out anything else yet.
Most of all I’m mad and sad about what happened and what I have become.

Thanks for reading this, I know there are those who are much worse than I and still more who did not live to tell their story.

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Dear Tigsum, Thank you for your Post . I too was in the medical profession, for 4 decades !
I suffer from severe headaches, dizziness and Eye issues, most of all from severe loud Tinnitus!
When I saw my Neurologist five years back , he casually said “ well you had a Stroke in your Cerebellum “ ...
now I have two aneurysm in my head , they say we will keep an Eye on it . I’m scared out of my mind , I also no longer drive, dizziness does not allow it !
Today is a particularly bad day, I’m dizzy , I can’t walk straight, I guess they will do another MRI , though I’m told I should not request contrast as it leaves a residue of Metal in my brain ...
thank you for reading this, if anyone has a similar problem, please respond
Elizabeth

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@mary I've had one and I survived. Im 45 years old. Did ot stop u from walking?

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I have developed a puzzling sweaty/clammy feeling all the time. My clothes feel sticky on my whole body, night or day it feels the same. If I am cold it is cold sweat. My liver function is normal as are other blood counts except for sodium which always seems to be low for me. My clinic does not yet have any answers but suggested seeing Nephrology for ideas on low sodium. Anyone?

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Just curious, anyone dealing with "brain flooding" here, at least I am assuming that is what I am dealing with? I used to get a little out of sorts shortly after my cerebellar infarct when grocery shopping, too much going on around me with all of the people, stocked shelves, noise and so on, felt a little light headed and anxious. Shopping has gotten much better over the past 11 moths since my episode, but I still get like that when walking through the machine room at work. There are big machines here, different smells, lots of noise, moving parts, steam, aisles to walk in, etc. I get a little light headed and a little anxious, not too bad, but I do feel out of sorts and can't wait to get to an office area or my office. The feeling subsides fairly quickly, just curious if anyone else experiences this and if you were able to return to normal.

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@hammondm99

Just curious, anyone dealing with "brain flooding" here, at least I am assuming that is what I am dealing with? I used to get a little out of sorts shortly after my cerebellar infarct when grocery shopping, too much going on around me with all of the people, stocked shelves, noise and so on, felt a little light headed and anxious. Shopping has gotten much better over the past 11 moths since my episode, but I still get like that when walking through the machine room at work. There are big machines here, different smells, lots of noise, moving parts, steam, aisles to walk in, etc. I get a little light headed and a little anxious, not too bad, but I do feel out of sorts and can't wait to get to an office area or my office. The feeling subsides fairly quickly, just curious if anyone else experiences this and if you were able to return to normal.

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Dear @hammond99,
I suffered a Hemorrhagic Stroke on 05/04/01, and I absolutely suffer from excessive noise, strange smells, and am confused every time I go shopping, even when it's the exact same Grocery Store! I also have difficulty being in crowds! I find it very overwhelming and overstimulating, even 17 years after my Stroke! I haven't been able to work since my Stroke; as I was diagnosed with Epilepsy, 2 years post-stroke! I still feel these things, but it also depends on the person!

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