Cerebellar stroke experience, treatment, recovery - want to dialogue

Hi @nskinner5 I have had 3 surgical repairs of a ruptured cerebral AVM. The last 2 repairs were less invasive by going through my groin. Toni

Has anyone had endovascular correction of cerebral artery?

I have not had a stroke, but am at high risk with a severely narrowed rt. Cerebral artery.

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?

Hello all! I’m so grateful to have found this community. I had a left posterior cerebellar stroke in September. I’ll start by saying I was diagnosed with a dural arteriovenous fistula in 2018. I had a bruit in my left ear which lead to the diagnosis. It wasn’t supposed to cause harm, but two years later it did. It developed cortical drainage, which isn’t good. A couple months before the event, I was having increased migraines and I just figured it was stress. Labor Day weekend I got one, along with some slight dizziness and heaviness on the left side of my face. I felt better later. The next week I was hit with the awkward dizziness, like I wasn’t in my body, and severe anxiety. I went to the ER and hours later a CT revealed a clot in the jugular bulb. MRI showed no bleed or stroke, and I later had an angiogram so my fistula could be assessed. They said I had great blood flow to and from the brain, so they wanted to schedule me to come back to close it, and they wanted to decide which vessel to embolize. Well, five days later I was back with the odd dizziness. CT revealed the stroke. I passed all stroke tests during assessment. My fistula was closed the next day. I’ve had a repeat angiogram that says it’s still closed. A couple of recent CTs and MRIs show nothing new. My anxiety was horrible, but is improving. However, the dizziness flares up sometimes with no exact trigger. From what I read on here it’s common to experience this after, but it’s worrisome because that was my only symptom! My migraines and headaches are frequent, and I’m supposed to start getting Botox for them this month. I have no deficits other than the residual dizziness. My headache Neuro doesn’t think I need an inner ear work up, but a doctor in the ER suggested it. I’m going to the stroke neurologist next week to see if they’ll refer me to our Balance Center (I’m a nurse at the hospital where my doctors are).

I just wanted to thank you all for sharing your stories. While reading many of them it was like reading my own thoughts. Finally I’ve found a place that others know what I’m going through. I’m fortunate to not be any worse, but this has been a struggle. I’ve been in contact with a couple of people on here, and look forward to hearing from others.

@avmcbellar I’ve had strabismus since I was born 44 years ago. I had to wear eye patches as a baby. I had eye muscle surgery in 2004 and it straightened for a while, but it has slightly turned back in over the years. I have an astigmatism in that eye, so turning the eye in helps me focus, I guess that’s why it regressed a little. Only really noticeable when tired. Yes, each time I’ve had an angiogram it’s through the femoral artery/vein. The coil was also placed using this route.

I used to work in cardiac critical care, the I worked in endoscopy, now I’m in urology research. I’m hoping I can get my hospital to start it’s own support group. It’s a well-known facility, so I think it would be helpful.

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.

Hi @snoopyrn nice to hear from you! Mayo Connect offers a great way to learn of other members experiences and get answers to questions. Welcome aboard! I did notice the RN in your name but wasn’t sure if it stood for a nurse. You mentioned you work in the hospital. What is your specialty? Nice to know the staff to get better service.
The headaches were awful at first because they occurred more often about twice a week for me. Luckily they tapered off to where now I get them once a month. I was given a prescription for a pain reliever when I left the hospital ICU. Never was I told it was for headaches. I never did take that drug instead I tried Tylenol which did not work. What I did discover worked best was a bag of ice over my head. Sometimes I would sleep with the ice on my head. Recently, through another member recommendation, I tried a tea called “Shifa”. I purchased it through Amazon. I prepare it differently from the package directions. I freeze mine. When I feel the migraine coming on I take 2 cubes of the tea with a little water to sip slowly. The headache goes away. I was told the headaches were the result of the brain healing. Hopefully that belief is right.
I did not have a craniotomy. The surgeons were able to get to the AVM at the base of my skull. I have an incision scar at the back of my neck. I basically had a reverse mohawk haircut. I did not have the coils but I did get the Onyx glue to stop the bleed. I had a total of 3 surgeries for the repair. The last one being 5 months later. I did have a cerebral angiogram which showed the AVM did not reform. That was 3 years ago. The recovery has been a slow progress. In your case cant the any surgery or angiogram be done through the femoral artery?
Funny you mention strabismus. The AVM has left me with strabismus which has made matters worse with the nausea and motion sickness. I know exactly what you are talking about with the dizziness. Being thrown around like in a car is difficult. Staying still makes the dizziness go away. Did your strabismus not go away on its own? Usually that happens in children. If you do not have diplopia then your strabismus is very slight. As a result of my AVM I have palsy of the CN4. No prism can help so I will wait for the strabismus surgery. Hey, good luck at your doctor’s appointment. I will answer any questions you have. Toni