Cerebellar Stroke - experience/treatment/recovery

I agree @hopeful33250. Having any online or call-in phone services for stroke victims would be better than getting cut off completely.

Wanted to check in with several of you who have talked about cerebellar strokes. I think your responses will be beneficial to all those in this discussion.

@ajp2019 - wondering if you have had a cerebellar stroke? If so, will you share a bit of your story and how you are doing now?

@bille - are you still experiencing some dizzy spells? How's it going with navigating stairs?

@incognito - how is it going with the dizziness, ”small lightning attacks,” brain cloud and brain flooding you talked about?

It's been some time I checked into this site and, although not asked, I thought I would respond. Just a little background, I had my stroke on January 6, 2018. Hit me out of the blue, had no underlying health issues at that time that I was aware of, healthy and active guy. Went through a barrage of tests over the past 2 years and my cardiologist can only assume my stroke was caused by an AFIB episode. He implanted a Linq loop recorder to monitor my heart and they have not seen anything unusual since the stroke. At this point, I see my cardiologist yearly and he would like to keep the loop recorder implanted until the battery goes dead or I have an AFIB episode. The plan would be to put me on blood thinners if I have an AFIB episode.

My cerebellar stroke left me with the typically challenges; balance was off, right arm and right leg did not work right, I was dizzy in certain situations (busy stores, hallways, in rooms where the is a great deal of stimulus such as heat, smells, noise, movement, etc.). I pretty much had to re-learn how to write, use a keyboard, tie my shoes, brush my teeth, blow my nose, walk down stairs with confidence, throw a ball, those type of things. Driving my car and motorcycle had some interesting moments, would suddenly jerk the steering wheel from time to time when driving my car with my right hand only, or I would apply the front brake on my motorcycle a little harder than needed from time to time. It wasn't to the point where it created a danger, just something I had to pay attention to for a while, something I had to focus on. Probably the thing that affected me most was that I have been playing guitar since my teens (58 now) and I lost my rhythm and could not longer hold the pick. My speech was also a little slurred, certain words would not come out right (thick tongue as my wife would say). I guess my stroke was pretty serious, but not as bad as what others have to deal with.

2 years later, I would say I am probably back 90% - 95% if I had to put a number on it. It didn't come back on its own, I had to work at it all of the time, still focus on things that crop up that pose a challenge, just a new way of life I guess. When things would plateau, I would work harder to make things easier, kind of stubborn I guess.

When I think of the things I still deal with today:

- My speech still gets a little off when I have a mentally challenging week, usually kicks in on Thursday, goes away on Friday night when I shut down a bit for the weekend. Sometimes my speech is off when I have a craft beer:-)
- My right leg is a little off when I get mentally tired. I notice it, but I'm not sure if anyone else does. I plan on making that better by jumping on my bicycle in a few months, just waiting for the snow to melt. I am confident I will be close to my old self by the end of the summer
- I still get a little dizzy or feel a little off in certain environments where there is a lot of stimulus, but nothing like it used to be
- Writing is still a little off, not much though, "O's and 0's still get me!

On this bight side, my right arm and hand coordination is mostly back. I spent 6 months last year working on a porch construction project at my house, best therapy there was for me and I still have all of my fingers! I didn't do so well bowling a couple of months ago, that felt weird, but was better by the end of the night. I did OK with Ax throwing this past weekend, didn't feel weird at all, but found myself throwing too hard, not sure if that was stroke related. I have also been able to mostly get back to where I was with playing the guitar. Created a custom pick that I used for a while then graduated to using a normal pick with Gorilla Snot (yes, that is the name of the product, google it, works well if you have trouble holding objects between your fingers) to help me hold the pick.

For me, things have improved greatly. I stopped thinking about the stroke all of the time in the last 6 months anyway, which is nice. Get's a little tiring worrying about having another stroke, thinking about what to do next to get better, etc. I was fortunate that I was able to work myself back to a somewhat normal state again, I know not everyone has that luxury. Hopefully my words add some hope for those new to this whole stroke thing.

Hi @hammondm99 It’s amazing you have come so far in your recovery. Glad to hear it. Keep being positive. I had a ruptured AVM effecting the cerebellum. I was told by my medical team that the same part of the brain gets effected when one drinks. I understand the difficulty in doing activities when the balance is off. I was not able to walk at first. Since then I constantly pushed myself to do exercises no matter how much dizziness it brought. I now can walk with a cane. I still have difficulty on uneven surfaces like the lawn, gravel, and dirt roads. Getting better has been a slow progress. It has now been over 3 years but I remain positive and keep trying. Basically I am learning on my own by trial and error. I was told by my medical team there are no answers because there are not many survivors. I gave up on asking so now I rely on myself to physically improve. I don’t think the doctors understand to help me. Thankfully you were healthy to be one of the survivors from your stroke. Keep up the good work!

Keep up the good work, focus on the gains!

Hello there!

I kicked this topic off a few years ago and haven't been active on here in a long time (apologies).

By way of an update, I recently shared my updated journey here:
http://strokeconnection.strokeassociation.org/Winter-2020/Finding-My-Own-Way/

Last year I met the 2 female paramedics that responded to my family's 911 call. I strongly encourage you to do the same! The Region of Waterloo Public Health wrote this article as a result:
https://medium.com/humans-of-paramedic-services/gratitude-on-the-road-to-recovery-a-stroke-survivors-journey-ce8b8cd391aa

In the 4 years post-stroke (left inferior cerebellar CVA Dec 2015) I've seen considerable improvements (mine are all cognitive - I never had any outward signs except when I was tired and would get a little wobbly). I've also engaged in some advocacy work with Heart & Stroke Canada which I've found really rewarding.

I am 100% me on the outside and 80% me cognitively. I had a Neuro Psych Assessment done back in 2018 which validated a lot of the issues I was having. It also confirmed that I am functioning well below my expected capacity, even though for the most part I fall within the low/normal range for the population, failing in a few areas entirely. This was helpful because friends would often say "80% you is like 100% for a normal person like me" and I'd get so frustrated.

Here is what has worked for me in my recovery:
- Binocular Vision testing/retraining to help with visual struggles, jumpy eyes, dizzy, inability to read without getting tired,difficulty reading/understanding, etc.
- Massage therapy monthly to help with headaches (mostly tied to balance and vision issues-suboccipital muscle in particular)
- Proprioception therapy (form of physiotherapy/vestibular therapy) for balance, coordination, stamina, learning where noise is coming from (eyes closed)
- CAP testing for hearing difficulties - if you struggle in noisy environments, can't keep track of conversations, can't keep up with fast speech, etc.
- Constant Therapy app for cognitive improvement - there is a one month free trial
- being comfortable with being uncomfortable - I push myself outside my comfort zone daily to help my brain create new pathways. Rest (when needed) then do it again. Repetition has been good for me. For instance, I couldn't stand being in a coffee shop (my volume is turned up to 10 now and everything is loud and I can't put background noise in the background). So I booked meetings every week in a coffee shop for 30 minutes, I'd put a radio on at work while I was trying to read, all things to challenge my brain to manage the noise. Now, I can tolerate more noise, including Disney World. When I'm cognitively tired before arriving at a restaurant, I will wear earplugs to drown out 33dB of noise. Continuing to challenge my brain has been the biggest step towards improvement for me.

I don't actively participate here anymore. If you're in Canada you can find me on the Heart & Stroke Canada, FB Group "Community of Survivors" - I was part of the initial group of survivors when Heart & Stroke Canada launched this in late 2017, now we have 2,000+ members and it is very active every day (granted you have all types of heart and stroke survivors so it's not specific). Through that group I met (in person) another cerebellar stroke survivor and it was an awesome experience. I'm also on the FB Group "Cerebellar Stroke" - a worldwide group with only 390 members that is hosted/moderated by survivors (not affiliate with an organization at all).

If you're on Twitter you'll find me @SharonDreher

Wishing you all continued recovery as you push for more!

Sharon

PS - @colleenyoung I'm not sure how to flag this for others to see it. Your help would be welcome. Thanks so much!

Congratulations for overcoming all that you have! Your hard work has sure paid off. Glad to hear from you. Keep up the positive attitude!

@strokesurvivordynamo, so great to see you back on Mayo Clinic Connect and to get an update. Your message is seen by everyone participating in this discussion and members following the Stroke group.
You'll notice that the group has really grown since you kicked it off back in April 2017. The discussion remains active with members supporting members.

I had a ischemic stroke 1 1/2 years ago. I worked hard at therapy and am fully recovered and happy. I do not think about having another stroke, it would not helped. Although they are not sure how or why this happened I have changed my life style by retiring, reducing hypertension and well my eating habits are not the greatest, I do try. There is hope after a stroke. Best wishes to everyone and their are people who understand. Then and now!

Hello All - I am 54, had a busy life practicing as an NP in Manhattan when I was suddenly struck (AVM hemorrhage) - the surgery team told me my cerebellum was “shot” - spent two weeks in the hospital then two weeks in rehab. I am now 6 weeks out. Ambulating with a walker, no driving. Need assistance up/down stairs and always someone with me. I can only endure one activity per day (food shopping, laundry, PT) before I am exhausted.
Grateful to be alive but sad that my whole world (and that of my family) came crashing down in 30 seconds! Will I ever be independent again? Cannot fund any info on prognosis. So happy I found this group page! Thank you