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Cerebellar Stroke - experience/treatment/recovery
Stroke & Cerebrovascular Diseases | Last Active: May 5 11:27pm | Replies (515)Comment receiving replies
Hi @trkuk and @snoopyrn sorry to hear of your cerebellar stroke. I had a ruptured AVM (ArteroVenousMalformation) in my cerebellum. Basically i had a bleed in my brain about 4 years ago. It was totally repaired 3.5 years ago. My last surgical repair left me with neuropathy on the left side of my body. The cerebellum is the part of the brain that gets affected when one drinks so I have issues with balance and coordination. My vision did get affected. I have double vision for which I plan to have corrective eye surgery in a year when the surgery will be 100% covered by my medical insurance. My disability is physical and not cognitive.
Since my last surgical repair I have not seen a neurologist. Has the neurologist offered any help? I did not take medications before nor do I now. I don’t know if a medication was prescribed that helps with your stroke. What has helped your vertigo? Because of the double vision I often feel nauseous from motion sickness. Do you feel nauseous also?
At first because of the dizziness I used a wheelchair to get around. I relearned to take steps again with a walker. My brain has difficulty with depth perception so it is hard to balance or walk on grass and gravel. It is easier for me to walk on a level surfaces. Recently physical therapy has taught me to walk outdoors with a cane. I am able to do more now. My motion sickness limits my mobility. I am hoping to decrease that within a year so I can do more. Wish you both well. Toni
Replies to "Hi @trkuk and @snoopyrn sorry to hear of your cerebellar stroke. I had a ruptured AVM..."
Hi @avmcbellar good to hear you are making progress. Interesting that you mention the depth perception as my neurologist thought I was making it up - . With the cup thing, when I would put it down on a table, it was like the table was much further away. The really odd thing was that if there were a pattern on the table cloth it would be way worse, the same applied to reaching for things in cupboards and closets etc. I spent two weeks just sitting there practicing the things that weren't working properly and they kind of went away. I guess the brain does re-learn, it is a slow thing though, it helps that I am stubborn
@snoopyrn, mentioned about the dizziness when spun, I used to have a similar thing, if turned my head too quickly to look at something, the room would carry on turning, it was horrible. I spent two weeks slowly turning my head left and right and I got used to it but the sensation is still there in the background. However I can't go on swings, or anything that spins or even watch things that spin anymore as it makes me feel sick. Certain flashing lights or video games that my kids play really give me motion sickness now, which never used to happen.
One really strange and new thing, is that it feels like my eyes want to do their own thing, I mean left from right, have to consciously fight it so it is suppressed, which is scary as I assume it could get at any time. I spoke to my doctor and she thought nothing of it, well thanks for that. 🙂
So two years on, I can do most things, there are little reminders, but they a million miles away compared to what it was in the first six months. The thing is there is no magical time frame which we find hard to deal with.
I agree , the best thing has been this forum and the people on it - just amazing support and real understanding.
Please keep strong.
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@avmcbellar thanks for reaching out. The bad vertigo doesn’t happen too often, but it frightens me when it dies. About two weeks ago, I had a sudden spell along with nausea that was not fun. I took a Ubrelvy because I thought a migraine might be coming on. It helped for a bit, then it all returned. I’m a nurse at the hospital where my doctors are, so went to the ER and they did a CT and said it all looked good. They gave me meclizine, which helps a little. However, I read somewhere that if it’s post-stroke related then you should ride it out so the brain can relearn signals. Who knows?? I’m just always scared it’s happening again when I feel that. I had a dural arteriovenous fistula in the left posterior fossa that became aggressive and caused mine. A surgeon at the last hospital I worked at attempted to close it in 2018 but it didn’t work. He tried to use particles. He said right away it didn’t work, and the next step was Onyx, and if that didn’t work a craniotomy. Yikes! He said I was in no danger, but hello! I believe God led me to my current job so I could be where I needed to be when this happened. The fistula was closed with one coil where the occipital artery meets the sigmoid sinus. I figure since you had an AVM in that area you might know what I’m talking about 😊. I had a diagnostic angiogram about 3 weeks after (it was my original procedure date) and the blood flow was slowly normalizing and the fistula was still closed. I’ll have another in the Spring, and I’m praying it’s all still good. I have an appointment with my headache Neuro tomorrow, and I’m going to ask to be referred to our balance center to check for inner ear disturbance and also make sure my eye tracking is ok. I was born with strabismus in my left eye, and each time someone new dies an assessment I have to tell them that. I’ve been told that I have slight nystagmus in the left when tracking, but not bad. I’m desperate to find relief form that dizzy sensation since it was my only symptom, so it scares me. No one told me that it could happen for a period of time after! The balance center can also diagnose vestibular migraines, because that’s also a possibility. My friend cuts my hair, and the other day she wasn’t thinking and spun me around on the chair! I yelled her name and she immediately knew what she did. She felt bad, she wasn’t thinking. The feeling passed though.
I’m so glad I found this forum. My friends have been awesome, but it’s good to chat with others that have similar experiences. I hope you’re doing better every day.