Cerebellar Stroke - experience/treatment/recovery

I am having trouble finding a good doctor that understands my loss of mental capacities. Is there a particular search or way to find a good neurologist in my area that understands about a cerebellar stroke. It's pathetic but I feel like most neurologists barely know anything about them ... do I just need to call around, or what??? cause I am sure their staff doesn't get it and will just say 'yes'. My doctor since I had the stroke doesn't even understand why I am still having issues...physically I am getting better and only suffer when overstimulated - but he doesn't even understand that... and he thinks I should be fine mentally and that it doesn't make sense...really, you idiot - sorry, but he is worthless.

I totally sympathize with you. I believe outside of motor control issues, most Doctors have very little knowledge of the impacts Cerebellar strokes have. I finally went to Johns Hopkins for a "Neuropsychological Evaluation". It was a standardized comprehensive battery of tests checking memory, logic, et al. Besides testing me, they also interviewed my husband. At the beginning they stressed that they would not be able to tell me what I lost, but rather could ascertain my neurologic health compared to my peers.

They identified a number of areas, primarily they recommended a sleep study, and treatment for depression. The sleep study was negative, but the treatment for depression has made a huge difference in the quality of my life.

The other fantastic thing coming out of this is I now have a solid and comprehensive benchmark. This testing is very standardized so in the future I can be tested against my own benchmarks. That is comforting to know.

I don't know where you live but you or your Doctor should be able to find a facility that can perform the testing on you. Not any facility can do this since it requires specific training on how to give the tests.

I hope this helps.

I am 44. My blood pressure and cholesterol have always been good. Honestly very healthy. I had a cerebellar stroke August 30, 2019. My neck had been extremely sore and tight the week before. That day I didn't feel exactly normal, but not anything too out of the normal. Things didn't taste the same as the normally did. I walked outside with my husband and all of a sudden, I had extreme vertigo. Luckily he was near me and slowed my fall when I collapsed to the ground. I couldn't walk, he helped me in. I was so dizzy which then lead to constant vomiting and I sweat was rolling off of me like crazy. I finally said I needed to go to the ER the following afternoon. The swelling was so extreme the hospital staff was amazed that I wasn't in a coma. They think that the clot reached my brain by a PFO. I go to the cardiologist tomorrow to see if that needs correcting. I'm very nervous to have it closed and nervous not to. I'm so blessed in the fact that I don't have any physical problems that are noticeable to the public. But I have odd side effects. Some vertigo, very tired. Shopping makes me feel crazy weird. And it's hard to deal with people expecting me to be back 100% because I look normal. My anxiety is over the top. Now I have panic attacks and honestly don't want to leave the house. Have you experienced these same issues?

Hello, it’s been a while since I visited this site and have just noticed your entry. I had the same symptoms as you experienced at the time of the stroke and reached one year after my stroke on Halloween. I still experience severe tiredness, occasionally feel a little off balance and just feel a “ bit off “ on occasions which often last a week or so. I consider myself so lucky to have survived without any outward symptoms and yes, I get a little annoyed when people expect my to do things as if nothing has happened. Supermarkets remain difficult for me to visit, I get what I need and get out. Driving, I’m fine and confident I’m safe. The main reason I got in touch was the PFO. I had the same, a PFO and, in my case a ASD and had them closed under four months ago. Surgeon bagged them both with the same amplatzer device. I feel no pain at all, I feel no difference inside but I am hugely pleased that I have had this route for blood clots reaching my brain firmly closed off. In my opinion, if you are suitable for this procedure, grab it with both hands would be my advice. It’s reassuring to know its there and working and the heart specialist has kept my on clopidogrel as well, as he says, it’s a belt and braces job. Stroke team at the local hospital have now discharged me from their care and Im grateful for a second chance given that it could have been a lot worse. I still marvel at this amazing PFO closure procedure. I sincerely hope all goes well for you whatever you decide.

Thank you from the bottom of my heart for sharing this. It is so "validating" to know that someone else experiences the similar symptoms. Your descriptions seems a whole lot like my experience. I was just reluctant to reach out because alot of persons have it so much worse than mine. I feel like I would be complaining because there are so many much worse off. My experience has been more in my "thinking" and "cognitive" than the outside obvious injury. I do have a little bit of trouble with my right three fingers on my right hand and my right arm, shoulder, hip and foot, but for the most part, I am ambulatory. I am not going to list everything but I would say that most I deal with balance in a car when riding, I drive to the right because I think my perception is off. I get overstimulated so easy even in menial tasks. If too many things are going on, like tv and telephone call and someone talking, I can't have good perception because my mind is too busy. That's when my speech suffers the most. I can be doing fine in the morning when I wake, and a phone call come in and I answer and immediately my speech will be dysartric. My neurologist says its called "flooding" and I just have no filter/buffer. Forget the grocery store. Too many people. I will stop at that because I feel like I am complaining again. I promise I'm not, it's just things I wonder if someone else deals with. I apologize.

I want to thank you for your positive words and encouragement. That means so much. I appreciate it. I would like to say that I am a very positive person and my "faith" has helped me in so many ways. AND the fact that I just try to "make light" of myself when I do something that seems a little crazy. I try to make fun of myself. The Word says "laughter" is good like a medicine so I focus on laughter. I love to laugh.

Many thanks.
Barbara

@brightwings and to all others... yesterday I did it! I did the free grocery store pickup all by myself! I have a lot of trouble with crowds but this pickup at the grocery I did it successfully so now my husband doesn’t have to drive me to the grocery and go in with me! Praise God I did it!!

Thank you for you’re reply. I talked to the cardiologist yesterday and he recommended that i have the pfo closure procedure. From everything I’ve heard, the recover process is simple. The grocery store is slowly getting better and I have more confidence now when driving. It’s safe for me to drive. I think I’m being overly cautious. Doctors also discovered that I have cervical spinal stenosis. They say it’s unrelated to the stroke, but my severe neck pain started the week I had the stroke and it’s still painful. Did you experience neck pain?