Cerebellar Stroke - experience/treatment/recovery

@trkuk I’m in the US. I’m a nurse at the hospital where I was treated. The only useful information I was given was by the stroke coordinator RN. She advised me to only go to the grocery store for a couple items or I’ll be overwhelmed. I didn’t think that would be true, but it’s a stressor. I found a Facebook group called SASS (Seriously Awesome Stroke Survivors) that’s based in Nashville (where I live), but they also no longer have live meetings. We did do a Zoom yoga session that was nice. This forum has been nice because so many on here are going through the same things. Even though our stories and recoveries are all different, we can relate to each other. The stroke neurologist did say recovery would be a rollercoaster, and he wasn’t kidding. He said he would’ve never known I had an event by talking to me, and that I didn’t need follow up (I saw him one month post). However, I’m going to ask to be referred to our balance center to have inner ear and eye tracking tests done. I’ll get some bouts of dizziness if I do a lot of turning and sometimes vertigo that hits out of nowhere (not as often though). It’s been almost 10 weeks, and I do feel better than I did. I have no deficits as far as memory and motor skills, and my concentration has very much improved. I had migraines before and they are continuing, along with other types that are frequent. I’ve read on here that some continue to have vertigo 2.5 years later....yikes! It’s so scary when it happens since the dizziness was my only symptom. My fistula is closed, so you’d think that would give me relief since that’s what caused the event, but it’s still so new. I’ll have a repeat angiogram in the Spring also. I’ve had a few CTs and MRIs since September, and I’m told they look good. The anxiety has been the worst part of all this, but I have gotten better. This year, even the last few months, have been hard. I had another health scare in June (blood clot caused from oral contraceptives), lost my dad in July suddenly, and then my latest incident. I have found a therapist which is helping, and last week I started an online Tai Chi course (I read it’s been helpful with other stroke patients, and also with migraines). I’m able to workout, but I try to not do too much in one day. I’m definitely grateful to have come out of this as good as I have. This all happened 5 days before my 44th birthday, and I’d had no major health issues aside from having my appendix out and the dAVF that wasn’t supposed to be aggressive. I’m so much more appreciative of life and the things I have now.

How are you? Thank you for responding, it’s helpful to be able to talk to others who have experienced this. I participate in another online group called AVMsurvivors.org and a lot of people on there are from the UK. It’s nice to “meet” you!

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

@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.

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

@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 @trkuk thank you. The recovery is a slow progress but I am patient. Nice to hear from you. I understand you live in the UK. I have never traveled there. Are you near a city? I have lived in Greece and Australia before settling to the US. So I know of the village life and city life. I prefer quiet rural life but it all depends on the needs for which is better.
Definitely the depth perception is an issue for me. That is because of my eyes not aligning. As a result of the AVM I have double vision or diplopia which makes my nausea and motion sickness worse. Do you have any visual problems? In a stroke we experience a loss of nerves which control our muscles. It sounds like the muscles of your eyes are adjusting. How about doing eye exercises to strengthen the muscles. I did that daily for 4 months recently. It helped my eyesight but made the motion sickness worse because my eyes were slowly adjusting as I focused. The shifting of images caused more motion sickness because the change was not instantaneous. The nerves were too slow. You should try it in your case. I had gone to a neuro ophthalmologist to get my diagnosis. The muscles of one eye has difficulty with the motion inwards and downwards. So I get a different image in each eye, hence the diplopia. A prism does not offer any relief in my case. I was told for the eye surgery a slight adjustment will be made for the correction. If an over adjustment is made a prism in my glass lens could offer help. Fyi, I learned about the eye exercises on my own. The ophthalmologist told me about the surgery. From my experience the medical team does not know much about the complexity of the brain so I got NO answers especially when very few people survive this ordeal. Basically I have been learning on my own through trial and error. I do not rely on physicians to help my condition. Rather I may ask them questions. I feel all the physicians want to do is push medications. We know there is always a risk as well as a benefit. I am cautious because I do not need any more health issues. I know of people who had followed a recommendation from their doctor to take a medication. Now they have more problems as a result. I will be happy to answer any questions from my experiences. Wish you strength for a better recovery. Toni

Hi @snoopyrn I understand the patch allows the weaker eye to be used more so the muscles can get stronger. I’m sorry it gave you trouble through the years. Not much can be done after corrective surgery. I had read that the surgical results may change. As long as it is minor and not bothersome I would not do anything either.
Looks like you had different experiences.....cardiac, endoscopy, and urology. Nice! With urology research did you have a desk job and not on the floor with patients?

Usually the coil is done through the groin. I am glad it worked out for you. The headaches, sounds, firing from the feet can all be scary. It got to the point where I could tell in my brain of the new connections being made. It doesn’t happen as often now as it did in the beginning which makes sense.
If you find out anything helpful with the vestibular let me know. I had tried PT using vestibular exercises for balance but it didn’t work. Made me dizzier then had a migraine the next day. You too, hope you get better with each day. Toni

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.

Hi @snoopyrn I wish you luck with the botox injections for your headaches. For me I am not willing to take the risks of foreign substances in my body. I have been through enough without needing more issues. I am cautious. The injections would be multiple. I prefer to try other methods first before attempting medications. You as a nurse should know a medication always has risks. Wether to decide on a medication depends if the benefits outweigh the risks. Let me know of your recovery at the Balance Center as well. Wish you well. Toni