Cerebellar Stroke - experience/treatment/recovery

Unlike yourself the only outward disability that I have are some balance issues and a stupid annoying leak from the left side of my mouth it kind a looks likes I’m always drooling. The drugs that they have me will sometimes will make me look like I’m a little spaced out, so I tell people if I look like I’m spaced out and drooling I’m really okay and no need to call ambulance!

Everything for me is cognitive, concentration and headaches. These are all hard to be seen outward to people and therefore they think that I’m OK from the stroke. I work in the IT field has a network admin which requires lots of concentration it seems like every day something is going wrong which really builds upon the headaches.

I wife is a physical therapist at some of the classes ithat she has gone to deal with neurology rewiring the brain after trumatic brain injuries. The last class so she came from they talked about learning to play musical instruments and art as a way to re-wire the pathways and help recovery. In the evenings when I get home I find myself coloring an adult coloring books a lot it helps me turn off the brain at the end of the day and it really calms me down and calms down the brain. I’m really considering trying to learn how to play a musical instrument next.

I really hope that things do get better for you soon.

Hello all. I am surprised I found this group! I am sorry to hear so many of you have experienced this kind of stroke! I am on here for my sake as much as my dads....cerebellar stroke survivor. He has a history of TIA last year and not one but two cerebellar strokes two weeks apart last one occurring two weeks ago. He is a spitting image of healthy. Only risk factors is PFO which will be closed in a week or so. Sooo hard to understand that someone so health can go through this, even for me as a healthcare provider! His main symptom is severe vertigo and nausea.....he still cannot turn abruptly or make sudden movements and moves and walks fairly slowly. He’s finally agreed to do some physical therapy, but those of you with severe vertigo as a symptoms, does it get better?! So hard to watch him struggle 🙁

I find there are times when a day off is a good thing! Hang in there!

Art therapy is good! My daughter actually does that for a living. They say singing is good too

How long ago was your fathers stroke? If you don’t mind me asking, how old is he. I’m 57 and had my stroke in August, the first month I the vertigo was real bothersome, I really didn’t like riding in a car or even standing up to fast. I was a very active person. Backpacking, cycling and all around outdoor guy. I’ve just now started back up with my personal trainer and we have been working a lot on balance which has helped a whole lot.

Keep the faith, and one day at a time.

Sorry for the long post...
I was 46 at the time no prior history..

Glad I found this thread. I had my stroke on July 5th 2018. None of the FAST symptoms at all. Apart from pain in my neck for about two weeks prior, which I put down to over doing the weights at the gym.

I woke up at 5am with a groggy type of feeling at the back of my head. Went to get a glass of water then all of a sudden the dizziness hit. It was beyond anything I can describe. Then I lost control of my legs and then vomiting arrived. My daughter heard my calls for help and my wife called the ambulance.

Next thing I know , I woke up in hospital. CT showed nothing, MRI showed stroke in left and right cerebellum , thalamus and parietal lobe.
Given a strong antihistamine for dizziness, it made me high. The dizziness went the next day but not completely. Apparently my speech was slurred but I do not remember this.

From what I was told, CT does not show cerebellum strokes too well because of the location near the bone, can anyone confirm this? Anyhow as a result the stroke was only discovered hours later, too late for TPA.

Further investigation and a bubble echo revealed PFO. Head and neck CTA and legs showed no concerns. Doctors put me on Clopidogrel and Statin, even though my blood appeared normal. Was sent home two days later although I was not ready to go home.

As I could walk and talk , no help was offered to me. Doctors were unsure ( or did not want to commit ) of what activity/exercise I could do. This is still the case today ( December 18 )

I feel well enough in myself but initially I was very tired, exhausted to be honest.

The biggest thing is that my mood has been affected, fortunately I have a wonderful wife!

I do get depressed but I force myself to get on with things, it is hard, some days I feel like checking into psych ward just for a break from reality for me and my family. I get easily distracted, once I remember something it is not an issue, it is more things like remembering to call someone, I will remember hours later or the next day. Very frustrating.

In October I started running again, something I used to do a few years ago. This has really helped with my moods but it is so hard. I am now doing 5k three times a week.

I am waiting for my cardio appointment in FEB 19 to confirm closure of the PFO, the main concern is recurrence of stroke until PFO is closed. The neurologist did not seem concerned but as I said to him, unless you have a stroke understanding the anxiety is rather difficult.

I just want to say to everyone, stay strong, find a distraction if you can, for me it helped but of course our journeys and experience are all unique to us. Don't let anyone ever judge you or tell you where you should be in your recovery.

Hi just read your post, I heard that the NHS may be changing this due to results of a later PFO study. Get in touch with your doctor and ask to be referred back to consultant.

Hi, My wife suffered a SAH stroke, in 2012. She was in intensive care for 5 days and at one point it was 50/50 if she would recover but anyone who knows my wife would bet on her. She is an inspirational person.

It was a very stressful time, she had a blocked vein which ruptured, and the veins that drain on her right side are now 100% blocked due to scar formation. Doctors believe it was the contraceptive pill that may have caused it.

I found her having a seizure when I went to go to bed, a sight I will never forget. It still haunts me today. When she came out of hospital she could barely walk a few meters and her tastes completely changed, she still won't drink coffee to this day, having been a big coffee drinker. It took her two years to eat tomatoes again.

When she came out of hospital she lost words and used sounds and shapes to identify words she had lost, so association played a big part in her recovery. 3 months later she started to finish her degree that she had just startred before the SAH, that was a tough year!

We managed to find a brilliant dooctor in the UK (private but did NHS, national health work ) who was progressive thinking.
She came off the anti seizure meds and after I wrote to a professor of neurology she got an appointment at Queens and came of anticoagulation in May 2013.

She is doing well but like you does not do crowds well and gets tired if too much is going on. Using tech is more of a challenge for her, she can do it but there is more of a learning curve. She is now on anti depressants which have really helped.

Intellectually she is still leagues above me. She always puts everybody before herself and has helped me with my stroke recovery in 2018!

I just wish i could give her more, that is my aim in life!

I am happy to find this discussion group. My dad had a lobectomy nov 20 to remove lung cancer then 11 days later was readmitted and diagnosed with a cerebellar bleed. He went home and 7 days later was readmitted. They found 9 new lesions. I say lesions because the drs cannot say for certain if these are bleeds or if the cancer has spread.
Is it common to have this many smaller bleeds after the first one?
Did anyone else have terrible hiccups?
Your stories are so unique and I am grateful you share them. Thank you!

Yes. still have some headaches, but Propranolol does help a fair amount. I wonder if most of us are not just frustrated, like with any other brain injury, maybe things can never be normal again? I think I have learned to except that, but does not mean I like it! I think I could personally deal with pain and etc, but what bothers me more is lack of enjoyment in anything I try to do for fun or my own personal pleasure. It is just like I am numb to the world going on around me.
No I do not really worry about another stroke. It bothers me that the Dr's were not able to tell me what caused the stroke and the being told each year that goes by, that I just have to live with it. Sorry, there is nothing we can do! I feel bad for the others posting on here that were effected much more by their strokes than me. I wish I could help others in some way, but I think our system might need to change first. Doctors just simply, do not have enough hours in the day to listen closely enough to what their patients are trying to tell them.
I feel like if I bring in a list (so I don't forget to ask about the main questions or concerns at a Dr visit), they look at us like, OK another one of these people bringing a long list of stupid questions! It is kind of disappointing for many of us, if that happens! I am beginning to think that we all have to figure a lot of these things out for ourselves, so we can help others in some way.
Throwing pills at things, is most likely is not a cure, it is just a temporary fix or bandage.
Sorry if I now seem like a winier, but I am a fixer type person that likes to fix and put stuff back together like it was when it was new and it doesn't seem like that happens much anymore!
I wish the best to everyone else posting on here, kept the faith and keep working at it! Maybe together we can figure out a better way to improve things for ourselves!