Cerebellar Stroke - experience/treatment/recovery

Hi @kkglasman , I joined this group last year after my husband had a posterior inferior cerebellar infarct with pretty much the same symptoms as you. He was also 51. I thought he'd eaten something wrong the evening before! Good on your wife for recognising the signs, since they aren't the typical ones for stroke. My husband couldn't walk for a few days but recovered quickly in the hospital. As far as I know they only gave him aspirin and some statins. Despite extensive testing, same as in your case they did not discover the cause. They put a cardiac monitor for a day, discovered I think some leakage in his heart valves. But the cardiologist said it wasn't a concern, and I don't know whether to get a second opinion. We suspect he also suffered two transient ischemic attacks a couple of years prior, during which he experienced sudden but fleeting split vision. These episodes only lasted a minute or so each and he thought he was having vision issues but the opthamalogist just dismissed them as his sight tests turned out ok.

Dear TMJLove
I’m responding to your note, because your symptoms are most like mine . Except I’m 75 and that’s way older ... about 15 years ago I stayed with a friend in the Hamptons in LI . Everything seemed fine , I slept on her sofa and wanted to get up to use the bathroom. Well, I couldn’t, everything was spinning, I couldn’t get up . She callled 911 and the Ambulance took me to The Hampton Hospital. After a bunch of tests they found a cavernous malformation on the left side of the brain deep within, never allowing any type of Surgery. I stayed in the Hospital for about a week and could not ambulate. Unfortunately I also have two Cardio issues, I have an MVP and diastolic dysfunction, but no Cardiologist will treat me for heart failure because my ejection rate is still high . In the last year I had 3 falls, out of nowhere I fall . I fell on Cement each time, the Neurologist says “ oh and you had a stroke in your Cerebellum that’s why you feel dizzy all the time . On March 24 th I fell outside a Restaurant after we ate, I’m 5’5 and weigh 145 pounds so I’m not overweight. On Monday I went to my Neurologist she did a Doppler, an MRI and an eeg , everything normal, but my headaches persist and at times I have difficulty reading. Today I saw my Cardiologist, I’ve been with him for 30 years, he put me on a one month monitor and took loads of blood... we shall see, meanwhile I like to show my Gratitude to this Group, May we all heal and enjoy Spring, Thank you for reading this. Lizzy

I am 64 year old female, working nurse up until this point. I had my stroke 7 days ago and am home today.

JMJ I gave up on worrying about the next event or occurence. Its of no benefit to us. I focus on the positive things to life however little they may be at times. It has been 7 months since being diagnosed with Basilar Artery Stenosis and am so busy I don't have time to look back. I love my family, enjoy my work and live by the advice of my medical team and so far it's working. I am grateful for each day and if I can be of help to those around me thats what means the most to me. By the way, you have inspired me.

Hello- Hello. I am a Mentor for Mayo Clinic for Lung issues/cancer. I also chime in the depression/anxiety group. Please welcome @brightwings. She has been in another group but probably will fit in better here. Thank you

Hello, I am Bright Wings. I have been active here at mayo clinic connect since last year. I was getting off my antidepressant of 33 years and was still having withdrawal symptoms months later.
I also write in a group for multiple sclerosis.
But now I need to be here. And I am terrified.
As a young nurse I put a LAW in place that if I had a full on disabling stroke and got put in a nursing home I would choose to die. That policy is still firmly in place, I see.
As a result of going cold turkey when withdrawing from effexor, I had a full on brain event caused by nightmares from the withdrawal.
I dragged myself and my foot to the door, left hand clenched and useless, while drooling.
I completely recovered in less than an hour.
I am here because I had another brain event Thursday. Different this time. But I see it as a huge warning. I will come back and post about this new event in a bit.
So this is my story. I will get to reading. Bright Wings
I see you are here with me @merry, thanks

@phughes814
Oh my gosh I am so happy to read this. You sing the same song I do and it makes me feel in good hands. Thank you so much.
I too an too busy and REFUSE to live in fear, but I am afraid right now. And its better to recognize this than ignore it.
I know that by taking an action I am more in control of my life. So I came here cuz I have very pointy ignored this field cuz of my fear as a young nurse.
I'm 68 years old now. Worked hard to recover from issues that started in childhood. Now this....Bright Wings

This is a follow on to my previous posting about going through cognitive testing at Johns Hopkins. I had the testing on Friday March 22nd. I had purposely not done any Googleling of what the tests were. I did not want to skew the results. The Dr. said that was a great decision. My husband and I were taken into an office and introduced to the Psychologist and the MD that would be reviewing the results as well as conducting some of the testing. I gave them my binder that contained all the test results from the various MRI scans and other tests given since I had the stroke. This they reviewed while I was in testing and returned at the end of the day.

The tests began with both of us being interviewed together to describe what happened. They also explained that the testing could not tell what, if anything, was lost since they had nothing to compare it to.

The Doctors were interested in what I experienced as well as my husbands perspective. This was a give and take session that probably lasted the better part of an hour. Then we were separated. I went with the Dr. that was going to give my tests. My husband was also given some forms to fill out giving his assessment of any changes he saw after the stroke. This was very interesting because in the final report they explained the difference between how I judged I did versus how Rob (my husband) judged I did.

My testing took about 7 hours with a break for lunch. I was placed in an office with the Dr. giving the tests. There were many tests in the battery. The tests were given orally or written. Only one test was done with a computer. I will not go into the various tests themselves. After the testing we were told we would get the results in about two to three weeks. The final report was 6 pages long and was an excellent benchmark of where I currently stand.

For me this was very important not only because of the stroke, but also because my mother had dementia. Now if I have another brain event or indications of dementia, I can be tested again from any facility that is certified for giving these tests. Since they are extremely standardized I would be able to compare my results to see if anything had changed.

In the conclusions they made recommendations to my General Physician for follow up. For me they recommended a sleep study, and treatment for depression. I am very glad I went through this battery of tests and highly recommend them for anyone who needs a benchmark of where you are cognitively.

@ocala8
What were your symptoms and what's going on now? Bright Wings

@jmjlove
I came to this group today for the first time because I had a second brain event thursday. I have been reading since I got here.
Oh Darling, I am sitting here weeping after reading your struggle to find yourself after this earth and life shattering event.
I am crying for you and for me. I am struggling to breathe right now. I am an empath and didn't have my shield up. Ok I am back to myself now.
The depth of your pain is so deep, rarely have I experienced much this in others but I recognize it because that is how deep my own pain WAS because of extreme childhood abuse.
I was also crying because you stated my deepest fears. To lose my life as I know it because of a stroke after all the work of changing the effects of the events of my childhood and taking back my life completely would destroy me or that is my fear anyway.
However, I am a 68 year old woman who choses to be in control of her life. I do it well too. I teach others how to take back their lives also. I think I am going to start a new group titled TAKE YOUR LIFE BACK. Yes, but not today.
I have been on a 33 year journey to erase EVERY EFFECT of my abuse and last year I finished that journey. I mention this because I remember what helped and teach all those skills to others.
I invite you to click on my name and look for a recent post speaking about I AM THE GRACEFUL LIGHT.
I use that when I am feeling my worst, which has been often lately cuz of a multiple sclerosis relapse and other things happening in my life.
When I am the Graceful Light, I stand straighter and do not fall as much because I glide, not walk.
Anyways, for what it is worth, I am with you, sending much caring your way. I am also sending a tiny rainbow. That is yours to keep forever. It has sticky on the back of it so I hope you put it on your sleeve so you can see it move with you. It will give you light. You need that right now.
I invite you to draw a rainbow, post it on the wall in front of you and look at it often. It WILL bring you happiness often and you will get many dumps of good brain chemicals that will bighten your mood. I promise...
.
Bright Wings, stick with me baby cuz we are both going to feel better.