Cerebellar stroke experience, treatment, recovery - want to dialogue

@bille

It sounds as if you have some good goals for your appointment and that is important. You can make the most of your appointment time.

Are the cognitive problems your main concern or are there other physical limitations you would like to address?

Thanks I will post once I get done. My understanding is the report will be several weeks after the testing. I will post about the process as well as the results. I have several concerns I hope I can find guidance on. First, Long before my stroke, I had CRPS on my left side. This resulted in nerve damage that is treated by Lyrica. Lyrica can cause some cognitive issues. Secondly my mother had dementia. We are not sure exactly what age she was when she started to get it. She was very good at covering. Lastly, I want to have a benchmark of where I stand cognitively. Then I hope I could always be retested in the future to see if anything is changing for the worst.

@bille

I hope you get some good help at John Hopkins. Here is some information from the National Stroke Association regarding strokes as well as support groups, just click on the link,
https://www.stroke.org/we-can-help/
You and your husband might find it helpful to read through the website and become familiar with the information provided there. There is also a way you can input your city and state and find support groups. Support groups will help you realize that you are not alone, much like here on Connect.

I look forward to hearing from you again. Will you post an update after your appointment?

Bille, could you explain the cerebellar tremor for me. I have always called the shaking in my left side, especially and mostly when I attempted to do a task, small things, like removing money from wallet, carry a drink, hold a paper plate while using right hand to put food on, always referred to this as a palsy.

This out of control shaking did not appear until a month or more after stroke. It just appeared. I was scared thinking I may have had another stroke without realizing it. It is uncontrollable and annoying as heck, mostly shows itself when using left hand to do little things. Also have tremor throughout left side when simply trying to stand still. What's up with that???

Anyone have any idea what makes this happen? I think another poster besides us has mentioned this. Would love to know more about this nasty clingon.
Thanks 🙂

A few months ago I had an MRI performed of my head at the request of my ENT. I had been referred to the ENT due to a significant loss of hearing in my left ear. What was found was a surprise. I had suffered a cerebellum infarct to my left cerebellum due to a dissection of the left vertebral artery. The stroke was not recent but after consulting with a doctor of the Inova Vascular and Vein Center and a Doctor of the Neurology Center of Fairfax, it appears that the stroke very likely occurred as a result of the ACDF surgery I had on June 7, 2017. After I woke up in the hospital room, I was at first able to walk unassisted however, later that night I began experiencing extreme vertigo, headache and projectile vomiting. This continued after I was discharged the next day. Once home, I was unable to walk unassisted, and fell and hit my head the first night home. My husband called the emergency number and was told not to worry it was just a reaction to the drugs. I was only able to walk with assistance. Gradually over the next few days I was able to start using a borrowed walker and gradually regained the ability to walk without assistance.

It was frightening to me that the stroke likely occurred while I was hospitalized. My General Practitioner told me that even if I had been taken to the Emergency room the first night I was home, they would have likely not diagnosed the stroke. Using a walker and a lot of support from my husband and friends I have recovered most of my physical abilities. I still get dizzy with certain motions. The vascular Dr. feels that this is probably due to the blood flow within the brain. I also have the Cerebellar tremor in my left side.

However, I have struggled to find Doctors that understand the Cerebellum. Most seem to still think it is only for body coordination. Nothing cognitive. I was finally able to schedule neurological testing at Johns Hopkins. This testing will occur the later half of March this year. I want to find a baseline of where I am now and perhaps be able to develop a plan for regaining some of what I have lost. Looking back over the last year and a half I can see changes in my cognition. My short term memory is shot. I search for words when having a conversation. Sometimes I forget a word even after using it 5 minutes before. Most of the time it is not like I have forgotten something, I just forgot how to access the information in my brain. I also have experienced depression.

I feel I dodged a cannon ball and didn't even know when it when it passed. Part of me is angry that the medical staff missed the signs. I spent much of the time since the stroke blaming myself for issues I was having. Hopefully, after the testing at Johns Hopkins I will have a solid plan for my recovery.

Yes that make sense. You never will be the same. You will be better. You dont need to think about the future. Just make it through each day.

At 48 and relatively healthy, I didn't fit the typical stroke profile. I have great cholesterol, am a non-smoker, a casual drinker, I don't have uncontrolled high blood pressure, I'm not a diabetic, and have no family history of strokes.

If you're like me, you've read the Heart & Stroke material and watched the ads on TV. We've been trained that if you think someone is having a stroke, act FAST and do the following:

Face - is it dropping?
Arms - can you raise them?
Speech - is it slurred or jumbled?
Time - to call 911 right away!

My daughter thought I was having a stroke when it was happening and administered the FAST test - I passed it. I could do all of these things! That test works for the majority of strokes but not all. A cerebellar stroke, like mine, accounts for only 3% of strokes. MY warning signs didn't fit the profile.

Instead I had the Three Vs - Violent Headache, Vertigo, Vomitting. Any of these signs coming on suddenly without explanation, alone or especially together, are enough to call 911. Even if your symptoms go away, you need to see medical treatment as you could have had a TIA (mini stroke).

For every minute delay in treating a stroke, the average patient loses 1.9 million brain cells. That is terrifying! It was 4 hours before an ambulance was called to my home the night I had my stroke.

I had felt "off" two days before and paid my Doctor a visit because I felt so strange it worried me. I described it as "feeling like Alice in Wonderland and I didn't belong". I now know that sensation is called disassociation and is a sign of a cerebellar event.

My Doctor couldn't find anything wrong and said maybe I was fighting a virus. So when I suffered my stroke, my family thought I had a bug and checked on me every 30 minutes as I continues to battle the Three Vs. Not until I collapsed on the bathroom floor did they fear the worst and dial 911.

I have not had any therapies yet. I will be tested at Johns Hopkins March 22nd.

Hello @bille

I appreciate your contributions to our discussions on stroke. You must be very grateful that you have a correct diagnosis now and most importantly that you have a supportive family behind you. There are all types of therapies available (physical, occupational as well as cognitive) perhaps John Hopkins will be able to put you in touch of some of these therapies.

Have you had any of these therapies yet? When is your appointment at John Hopkins?