Cerebellar Stroke - experience/treatment/recovery

I so agree. Life is precious. I died 5 times before I was 5. Each time God sent me back, saying "Susie you have to go back. I have things for you to do."
I spent years in bed, so many surgeries, so many medical bills. So much illness.
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I have worked hard to heal and now I simply pass on the help so many others have me.
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I have had an amazing life, as good as it was bad. I so appreciate feeling good enough to actively reach out to others and share my knowledge and repertoire of skills gathered during the years. I realize I do it well.
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We had 89 folks at my Tribal gathering. I have become an elder in the tribe. So many were working on domestic violence, I wonder if the full moon had anything to do with the pattern of trauma raised this weekend. Its amazing to watch the Sacred Plant Medicine work in folks, So much work is done in such a short time and folks who chose to work went home with a good chunk of healing under their belts.
I am just one of many who come to give back and help folks to healing the challenges in their lives.
I used to be such a Whiner, all my healing friends had to leave me....true story.
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Today I am not afraid to go kick an Arse if someone needs to adjust an attitude or see another side to things. I had mine kicked plenty.
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Thank you for the precious gift you gave me today. I will treasure it always and teach it to others. That was THE GIFT OF TREATING EACH DAY AS SACRED.
I do that, don't I...I didn't realize it. Thanks for pointing that out. Grateful, Bright Wings

Many of you have talked about your experiences with cerebellar stroke and therapy following it. It would be great to hear an update from you, which I believe will be helpful and encouraging to other members in this discussion.

@strokesurvivordynamo - wondering if you are still doing the therapy exercises and how you are doing lately?

@maryar - how is the spasticity you were experiencing? Are you still doing the puzzles and word searches?

@elizabethmm - how are your headaches and the difficulties you were having reading? Did you and your cardiologist see any useful results from the one-month monitor you had?

June 7th I passed my two year anniversary of the stroke. I am doing pretty well. I still get dizzy if I move my head certain ways. The Vascular Neurosurgeon felt this was probably the result of the blood getting to the cerebellar from other arteries. So that is probably not going to get better. However, the dizziness lasts only seconds.

At this point I have gone through a lot of testing to see exactly where I stand. Physically I am doing much better. I have lost weight and feel I have more energy.

Probably what made the greatest significance to me, was getting on an antidepressant. At some point after the stroke, I started falling into a depression that just made me not want to do anything. My world had become pretty small. That has changed. I am not 100% there yet, but it is certainly getting much better.

My dizziness turned into full blown “ Syncope “ I had 3 complete Fainting episodes in the last few months! The Cardio Monitor did not show anything of Significance as my Cardio says, even when my heart rate goes way over 90 I’m still in sinus rhythm which I don’t quite understand.. he now talks about an Insertion of a Loop Monitor but I’m thinking this through... still have severe dizziness.

I am so sorry to hear about your dizziness. I have a Medtronic LINQ recorder that was inserted two years ago just after my stroke. The insert procedure was simple and you don’t even notice it. I’ve had two afib sessions which has helped with the cardiologists making different medicine choices. It gives me piece of mind knowing my heart is being monitored. I will do anything to help my chances of not having a second stroke.

I have been doing cognitive, physical, and occupational therapy since my stroke in Oct 2018. I am still having issues with everything. The most frustrating part is intellectual. I WAS an extremely intelligent person - had a photographic memory as well as amazingly gifted in math. My husband also used to call me his walking dictionary because I could just picture the word and viola...no problems. Now I have to use spell check for everything. I screw up numbers left and right. I have big issues with processing everything. We get Hello Fresh so I have to read instructions and do what it says...I haven't gotten a meal right yet. I question if this is all due to my stroke... could my stroke have triggered something???

One thing I would like to mention. Perhaps it is the wrong board, but either the stroke or more probably the medicine regime I am on now have given my dry mouth at night. I tried various lozenges and gels some worked and some didn't, but I hated the taste of all of them. However, I started using Fisherman's Friend throat lozenges. It is not for dry mouth but it works as well if not better than the dry mouth gel. It is sugar free so it is tooth friendly. If I wake up with dry mouth at night, I just chew on one of the lozenges. This breaks it up and actually loads the teeth with it. So it gradually melts as I sleep.

So if you have dry mouth and hate the tastes of the various products for dry mouth out there, pick up a pack of Fishermans Friend. It will be with the sore throat section.

I thought I’d just give everyone a little update. Had a bout of nausea, shaking and feeling very much like some of the symptoms I experienced whilst having the stroke. It was so bad I had a night in the local hospital and consultant there started thinking’s it’s due to acid reflux. Well, I’ve had this for many years but never these symptoms so it’s getting checked out in the near future. Certainly, some acid reflux liquid when troubled has made a big improvement. My cerebellar stroke was deemed to be cryptogenic and I’ve been waiting for a PFO closure. Well, I had the procedure two weeks ago and they also found an ASD as well. Surgeon says he covered both holes with the device so I’m hopeful it’ll protect me from future blood clots. It’s an amazing op I was knocked out, left with two little puncture marks in my groin, one for the device insertion and the other for the scanning device. Ordinarily, this would have been placed down my throat but they couldn’t get it down due to what they think was acid reflux causing gullet to swell. I’m feeling good, headaches have reduced, no pain from heart whatsoever and, all in all, I’m happy that I was given the chance of having this operation. I haven’t seen a great deal written on the site about PFO closure but I think everyone with a cryptogenic stroke needs to ensure that the need for this protective device is checked out by their doctors . Anyway, that’s the latest everyone, I hope you’re all continuing to make good progress.

It's been a while since I posted, just started noticing something not long ago and wanted to see if anyone else is experiencing the same. I had my Cerebellar Infarct on January 6th, 2018. I have worked through many of the challenges you go through to get back to as normal of a life as possible, pretty much have gotten to the point where I am not thinking about the effects, worrying about having another stroke, etc. I have noticed over the past month or so that my right thigh has a spot about 1 inch wide pretty much the length of my thigh that is a little numb. My right side was affected by the stroke, so I am assuming it is related. Anyone have a similar issue?

Do you know what caused your stroke? I had my stroke effected right also on May 17, 2015 and don't know why. In 2017, I started having my right foot and ankle go numb or asleep and my doctor did a vein ultrasound where was found my veins want to spider had form new routes. (varicose veins) I am too young58 and can't have surgery for it because insurance says it is to look pretty so have to prove it by wearing compression socks. It helped. Now they are getting tight for me to wear and I have area around my groin that a cauterized star closer was put that hurts almost all time. Am to see dr. in two weeks about this and I am thinking I should be able to have the surgery for veins and get rid of these socks. They are a life saver for work and numbness but a pain to use.