Cerebellar stroke experience, treatment, recovery - want to dialogue

@avmcbellar, thank you for your quick and kind reply. I hope you continue to persevere and your recovery progresses. My husband’s PCP’s nurse summarized his issues as a decline in executive function. He expresses unprovoked anger at me, has a conversational style that is a monologue, is occasionally giddy, and shows much less empathy for hurting people than before the stroke. So, in that sense, the issue is affect rather than cognition. From what I’ve read online, there is mention of a drug therapy that is at best speculative. The only other option is a psychologist. But, my husband doesn’t see a problem and hasn’t listened to input from me or his siblings. I’m hoping someone here may have insight and experience, or be aware of emerging treatments and/or the best people in this area.

Hi @cerebellarstrokespouse I have had an AVM involving the cerebellum, the same part of the brain when one drinks so my balance is affected. I get dizzy with motion sickness. I have no cognitive deficits only physical. Because there are not many survivors, much is unknown. The doctors have no definitive treatment. So basically I have been learning on my own by trial and error for the last 4 years. Improvements are possible. Recovery is difficult but a very slow process. Each case is different. It seems your husband has made an amazing physical recovery. Perhaps there is therapy available to help cognitively. Would a speech therapist help with that? I would research where to get cognitive help then tell your doctor to write the order for your husband to get an evaluation. I hope this helps with your search to find answers. I wish you both well.

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.