Cerebellar Stroke - experience/treatment/recovery

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?

It has been awhile since I have posted and thought it would be a good time to do so. My stroke happened in May 2017 due to complications from cervical fusion surgery. I am mostly back to myself. If you asked my friends or husband they would tell you I am back completely. I know I still have residual problems some of which may pass and some I will just have to learn to live with. Most are minor annoyances, some had a larger impact on my life.

My Doctor started me on antidepressant meds that have worked wonderfully. I had gradually shut down after the stroke and no longer wanted to do my hobbies. I was very short with friends and really wasn't enjoying life like I should have. That has almost all gone away. I feel like I am waking up again. Things just seem brighter. I want to pursue my hobbies again. It is amazing, and I am very happy that this is being addressed.

My short term memory is still hit and miss. I find I search for words much more now than I did prior to the stroke. Some of this was probably due to the depression.

If I am by myself and working on my laptop, I am great. I may have to write more notes to myself, but I can still draw my creations in CAD before I build them. However, when I am in a group, I sometime find I am a bit slower than some. If a person rattles off a series of questions, I start to feel like I am drowning a bit. It is weird. Sometimes I just need more time to answer a question. It is not like I forgot the answer to their question, My brain just has trouble finding the path to where it is stored. I think this is very gradually getting better.

Physically, I still get dizzy spells. They do not last long but I never know when they are going to hit. Sometimes I will find I turn a little more than I planned when walking. Not much, just off setting. I have learned to reach out for support when this happens, This I think I may have to live with. I also notice when riding in a car as a passenger, sometimes I feel cars are coming much closer than they are. When this happens I tell myself that this is my brain's problem and the driver knows what they are doing, but I still cringe regularly when a car changes lanes ext to me. I think this is a depth perception issue.

I still have urge incontinence but I am seeing a Urologist and am making some headway in this as well.

Otherwise I am doing great. I have lost a lot of weight that I needed to, and I am starting to engage with all the things I used to love doing. I have a very supportive husband who is letting me reengage at the pace I want to.

So all in all I am very happy with my progress. Sorry to be so long winded.

Bill

Hi, @ajweb93, Your symptoms of vertigo, pain in neck etc were very similar to mine.
Short term effect for me were dizziness, tiredness, mood swings. When in a car, the sense of motion would last a couple of seconds after the car had stopped, a very weird feeling.

Long term, minor memory issues, more to do with daily things, as an example, putting the rubbish out, If I don't just do it, it won't get done until I suddenly remember about it again. Luckily I don't have vertigo. Crowds are ok. I don't seem to have a tolerance of people so much now, although I am working on it, my inner voice has accidently slipped out on the rare occasion.

My concentration is not what it was considering my previous job was in IT, I have decided to change career, when I do find a job 🙂 My grammar is not too hot anymore either.

Every now and then I get depressed, having witnessed my wife recover after her SAH I know these things are for the most part normal.

My point of view is that I am not 100% recovered or 100% better but that I am different now and this is the new me - for better or for worse. I relish the challenge and will make the best of life, because life is a gift that I still want to enjoy. I now go running and go to the gym (don't tell my cardiologist). I still enjoy a bit of wine now and then too.

Try not to concern yourself with peoples expectations, why are there expectations anyway? There is no time limit to this journey, My wife after seven years, still doesn't really like crowds, so we keep it to a minimum. You will improve with time, don't let anyone tell you otherwise, stay positive and if you need to make changes, then so be it.

This is a wonderful community with lovely supportive people, you are not alone.

Welcome Barbara. My symptoms resemble your also.
Bright Wings

Just wondering ... Being a retired RN have you ever heard of someone with a cerebellar stroke who has speech issues but in morning wake, at least most mornings, with no speech issues but somehow throughout the couple hours they are up doing things their speech goes “south” and stays “off” the rest of the day? It’s like it comes and goes.

Just wondering ... Being a retired RN have you ever heard of someone with a cerebellar stroke who has speech issues but in morning wake, at least most mornings, with no speech issues but somehow throughout the couple hours they are up doing things their speech goes “south” and stays “off” the rest of the day? It’s like it comes and goes.

I had a stoke in May 2009 and if you met me for the first time, you wouldn't realize that 30 % of my cerebellum was damaged. The most challenging deficit that I have ( balance is ok on the flat, word recall is challenging sometimes and my speech goes off when tired) is the need to have, every single day, a sleep. I know when I need to lie down as I get a mild pressure headache, my speech starts to slur and I am tired. After 2-3 hours sleep, I wake up and feel just fine again. Does anyone else have this issue? I have been through two sleep studies and also seen a sleep neurologist at Mass General and was told that it may be as a result of where the stroke was and can take many years for this to go away. Thanks

I have seen MANY doctors and still have no certain diagnosis. I have had nerve conduct study done on my tongue and my tongue is normal. I have issues with my jaw, sometimes my jaw quivers - I think that would be adversely impacting my speech (sometimes my jaw locks). Due to progressive nature of this issue, my speech has steadily regressed and is almost fully unintelligible now. I sure wish I could get proper help - very difficult not being able to verbally communicate. I was told to get Lumbar Puncture, but I have compressed Spine due to trauma and cannot get straight answer from Neurologist whether Lumbar Puncture is Contraindicated due to compressed spine?

I notice the very tip of my tongue goes numb or won’t move into the correct position to pronounce a word at the end of the day. We get tired, our brains do also.
We are never going to be 100%.
I do shoot for the moon and take what I can get. It’s enough, but I never give up,
Listen to Andre Richelieu on you tube. Be proactive in giving yourself endorphins. Study endorphins also. It’s how I got to be this person after so much abuse and medical problems.