Cerebellar stroke experience, treatment, recovery - want to dialogue

Hi @acoylenp01 It is a long road to recovery but I’m glad to hear you are determined to fight back. Having a positive attitude certainly helps. Yes, I had the same issues with dizziness and balance. My AVM ruptured in the cerebellum where 5 vessels were connected. I had 3 surgeries before my AVM was repaired. I too tried to find answers online but I couldn’t find any valuable information. Since my medical team had no answers I relied on myself to learn what worked for me by trial and error. At first I had no balance and needed someone with me at all times. I sat in the wheelchair for transportation. I was exhausted after 2 hours. My legs felt like lead. I tried to keep active with what little I could do physically. I gradually improved to a walker then cane. Now I can walk in the house without any device but need a cane outside for unleveled surfaces like the lawn and gravel. Be persistent with physical activity no matter how difficult the dizziness gets. It’s not easy. Along with sitting exercises, I try taking supplements. I do as much as I can tolerate. Let me know if you have any specific questions I can help you with. I did experience losing my taste. I became hypersensitive to the sweetness in foods. I had lost my appetite because all foods tasted overly sweet to me. The doctors had no idea why but after 3 years I recovered on my own. Good luck. I am glad to hear from you and remember I am happy to share what worked for me. I do not drive. With my husband’s support I continue to be positive to try different things.

Thank you so much! I am particularly troubled by the changes this has brought to the lives of my husband and my three adult children - sounds like you were very instrumental in your husband’s recovery. I could not imagine being able to do any of those activities but I’m inspired and hopeful! Thanks for sharing, it’s so nice to meet you 🙂

Hi @acoylenp01, my husband had an ischemic stroke in the cerebellum 1.5years ago. He was 52 and seemingly healthy. Overnight it all changed, and I know how it feels!

It does get better. He was very down and angry for many months after the stroke. It was a turbulent time to weather through! But he was also determined to improve his condition, so he changed his eating habits, did more physical activity and challenged himself each day to retrain his brain. His ataxia is now completely gone, he cycles to and from work, swims and runs regularly. His calm, laid-back temperament is also back. The only issue remaining I would say is the insomnia... he continues to suffer from poor sleep. But he's come so far and I'm sure that little by little, it will also get better for you.

Sending you a big hug.

Hi AVMcerebellar- sounds like you and I had the same injury- I am inspired by your determination and courage- I want to fight my way back to “normalcy” - I have fallen twice and admit I am afraid now - I have no cognitive issues just extreme dizziness and imbalance- I look forward to any advice/suggestions you may have- thank you

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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

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!

@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.

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

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!