← Return to Cerebellar Stroke - experience/treatment/recovery

Discussion
Comment receiving replies
@avmcbellar

Hi @steveinak oh so sorry to hear of your stroke. I had my AVM in September as well but 3 years prior. I have learned that strokes or aneurisms in the cerebellum region is not common at all. Finding a physician who has that specialty is very rare. I don't know where you live but your best bet would be to go online or start making phone calls to find your doctor. In Florida where I live I have not found such a physician. After a few years I decided to help myself using the trial and error method. While I was in the ICU(nearly one month) after my AVM, I had a team of physicians consisting of neurologists and neurosurgeons. I was disappointed to get a lot of uncertainties for answers. Like you, I was very active with routine physical exercises prior to my AVM. I wanted guidance in order to get back to my routines but instead I was left with many unanswered questions. I have come to realize there are not many survivors for finding answers. Another reason why answers are hard to come by is that there are so many locations for strokes to occur which can result in different deficits. May I suggest to start trying things yourself to find out what works best. Much of the generalized information regarding strokes can be found online. I don’t take any medications and don’t feel I need to. If you do, then you will be in need of a physician. I also found the Epely maneuver to be of no help. I do feel the imbalance in my ears. Have you seen an ear physician for an assessment? I have had physical therapy 3 different times in different settings, home care and outpatient. I initially was in a wheel chair. My recovery has been a slow progression but nonetheless I am able to walk now using a cane for unleveled surfaces like the lawn and graveled driveway. Indoors I do not need any device for walking. You were lucky to have been mildly affected. My symptoms limit my mobility with the muscle weakness, dizziness, incoordination, nausea and vomiting, motion sickness, and double vision. I exercise using a mini cycle and portable elliptical machines at 10 minute intervals. I wish I can do longer but my body can’t tolerate the heat. I do use a table fan each time. Perhaps slow increments will be tolerable. I would like to increase time and intensity using other exercises that I could do. Any recommendations will be appreciated. Perhaps we can help each other through our experiences. I will be happy to answer any questions you may have. Best wishes to you in finding answers for continued success with your recovery. Toni

Jump to this post


Replies to "Hi @steveinak oh so sorry to hear of your stroke. I had my AVM in September..."

Hi @avmcbellar, I too am sorry to hear of your AVM event. The unanswered questions are certainly frustrating. The brain, I guess, is just so complicated and vast and mysterious, there are just so many unknowns when it comes to stroke recovery. I am glad to hear that you are walking, with and without the aid of a cane. Mobility is certainly paramount to our well being. I did visit an ENT, and an Audiologist after my first stroke (misdiagnosed). I really don't believe I have anything terribly wrong with my vestibular system, save for the brain part. My PT has been great at quizzing me on various problems I have encountered, and whether they are vestibular or neurological. I think you are on the right track with your exercise intervals of just 10 minutes, that is key and it's great you are keeping that up. I am doing just 15 minutes at a moderate level on a stationary bike, and that's enough for me for now. It is frustrating, somewhat, for me because I lead a Spin class at a downtown gym for 8 years (2011-2018). That level of intensity is what I think I should still be able to do, guess I'm not 25 anymore, or 55 for that matter...LOL. I will also mention that I contacted a person here in Anchorage that ran a Stroke Support Group before COVID hit, and she recommended swimming to me, she said it saved her life. So, I grew up in the water in various places down in Texas, so I thought this might be the answer. I went to a local pool that had just opened up from COVID restrictions, and I did 2 laps and thought my head was going to explode. I got out of there and never went back, it was just too much head movement for my brain to deal with. If you have not looked at Brain.Rehab, you might want to give that a try. I got this website from the book, Stroke Rebel, by Linda Radestad. She and her Physical Neurologist started the website to help stroke survivors recover. It does cost $20 a month, but you can check out the website, and view the introductory video for nothing. The site, once you pay to be a subscriber, is mostly just an incredible number of videos of the Neurologist, and sometimes her too, talking about various aspects of stroke recovery. I have gotten some good information out of it, but the number of videos and the way they are organized is a bit overwhelming. You might want to check it out, just Google Brain.Rehab. If you do get a subscription and you decide it's not for you, you can cancel anytime.

Steve