Cerebellar Stroke - experience/treatment/recovery

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!

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

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

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.

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.