Cerebellar stroke experience, treatment, recovery - want to dialogue

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

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.

@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 @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

@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 @snoopym, thanks for reaching out.

Very frustrating - almost like being thrown out on to the street. Are you are in the US? Here in the UK groups are not really meeting due to COVID - in fact there were no groups in my area anyway, unless I wanted to join a group for patients in their 80's

Regarding Vertigo, it went fairly quickly - I did have some issues with depth perception on my left side and patterned objects, for example if I were to put a cup on a table, I would continue to try and put it down even though it already was, if that makes sense. This happened only with my left side for about a month. I then had a really weird thing that when I was travelling ( as a passenger ) in a car and the car stopped, for me it felt like it was still moving for a few seconds afterwards.

I found that my Neurologist was somewhat dismissive, he would sit there saying that the clots were not that bad and you could not possibly have had these issues, blooming idiot!

My memory is not what it was and my eyesight was definitely worse afterwards.

How is your vertigo, is it all the time? How are you managing?

@trkuk its been a while since your post, but we have some similarities in our stories. I had a cerebellar stroke in September, passed the FAST and other testing too. In 2018 I found out I had a dural arteriovenous fistula that wasn’t supposed to cause problems, but welcome to 2020. On 9/11/2020 I went to the ER with an odd dizziness coupled with severe anxiety. It was like I wasn’t in my body. I had a clot in the jugular bulb/sigmoid sinus, but no stroke. CT, MRI, and angiogram showed good blood flow to and from the brain, so it was decided I would come back later for the fistula closure. The surgeon said he wanted to further view the images to decide which vessel was best to embolize. Five days later I was back with the same symptoms, only this time I had an infarct. My fistula was closed the next day. You’re right, the anxiety after is excruciating. I, too, was a “walkie talkie” so I wasn’t given much follow up. I was told to join support groups, but they failed to mention the resources they gave me no longer met due to COVID. I wanted to know if you experienced vertigo at all afterwards.

Sounds like your husband is making great progress! Awesome that he is able to get that much time in the bike seat so soon after the stroke! My advice is make sure he focuses on the gains he makes, don't let him get frustrated or worry about the challenges or setbacks he has had to endure since the stroke. He sounds like the kind of guy where it will just take time and repetition to get back close to where he was pre-stroke. For what it is worth, I have been playing guitar for the past 35+ years and I totally lost the ability to hold a pick, find the strings and have any sort of rhythm after my stroke. It's been (a short) 30 months since my stroke and I am probably 80% of the way back to where I was with the guitar. I am going through one of those periods where I make a lot of progress in a short period, so I am having fun! I am sure with a lot of work, I will get close to 100% in due time. Amazing how the brain adapts!

@hammondm99, thank you for your reply. It helps to know that this is part of the process for many and that while nothing is certain, there is a good chance things will get better.

Just this morning, I got a sense of how things have changed for my husband. He explained how different it is to go on a 20-mile bike ride - he’s constantly conscious of the mental images flying by, the need to balance, and the need to watch for cars. All of these “dailyness” things used to be automatic.

Now that he’s back at work, he has had to back off cycling, to have the neuro energy to concentrate on a computer screen. He’ll work for a bit, then rest his brain, and work a bit more. Concentration is coming back, albeit slowly. He longs for the time when a two-hour bike ride is an invigorating start to the day, rather than a draining event that defines the day.

Thank you for taking the time to write. You articulated so well, why anger, etc. can be a response even when it seems to others that things are going well. Your post was a real source of encouragement to me and helped me to interpret what my husband had been telling me about his experiences.

It's been a while since I have been out here, thought I would check in today and saw your post. I'll start off by saying this is my opinion only based on what I feel, and still feel to some extent. I had some issues with anger and empathy towards others for a few months following my stroke. As with your husband, I was able to progress fairly quickly getting to a point where people didn't notice the effects of my stroke. That being said, most things that were simple prior to my stroke were much harder for a while after the stroke. That had a way of making me angry and I probably took it out on my family at times. My opinion is, unless you are a person that has experienced a stroke, you really don't understand it and what it takes to get better. It's a life changing event, for some more than others, but you deal with the effects every day and life is more challenging than in the past. What I noticed is that you really are alone out there with dealing with your challenges. I get the feeling at times that people either think what you deal with is no big deal (you are not dying) or they just don't want to engage when you want to talk about the challenges. That had a way of impacting my empathy for others, unless you were in my direct family, I really didn't care what you were going through (my mother told me I wasn't being very nice on a few occasions!). In my case, that has improved over time as things get easier and life has gotten more normal for me. Having someone to talk to that has gone through a stroke and can relate helps.