Cerebellar Stroke - experience/treatment/recovery

I suffered a Cerebellar Stroke in Dec 2015 in my 40s and am interested in connecting with other cerebellar stroke survivors to share our experiences, testing/therapy options, struggles on the path to recovery.

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.

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@pizza68

And the NHS no longer comission the closure of PFO's to prolong my life but I can get a boob job for £5000 of a gastro band done cos I'm over weight from eating too much, there just no logic ….

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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.

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@rachelanne

Dear @hammond99,
I suffered a Hemorrhagic Stroke on 05/04/01, and I absolutely suffer from excessive noise, strange smells, and am confused every time I go shopping, even when it's the exact same Grocery Store! I also have difficulty being in crowds! I find it very overwhelming and overstimulating, even 17 years after my Stroke! I haven't been able to work since my Stroke; as I was diagnosed with Epilepsy, 2 years post-stroke! I still feel these things, but it also depends on the person!

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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!

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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!

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@jamienolson

Hello @livetheday. Welcome to Mayo Clinic Connect! What a scary thing to experience. Thank you for sharing it with us.

Do you find yourself constantly worried that you are having another Cerebellar stroke?

Are you still having the headaches? or has the propranolol helping with that?

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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!

Liked by jmjlove

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Hi, @gakimble. I wanted to add my welcome to Mayo Clinic Connect. I'm sorry to hear about all your dad's been through. How is he doing?

I also wanted to catch up with some of you who have mentioned experiencing strokes and see how things are going, like @hammondm99 @wendyruhl @kweber @trkuk? @pharmamom, how is your dad?

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@lisalucier

Hi, @gakimble. I wanted to add my welcome to Mayo Clinic Connect. I'm sorry to hear about all your dad's been through. How is he doing?

I also wanted to catch up with some of you who have mentioned experiencing strokes and see how things are going, like @hammondm99 @wendyruhl @kweber @trkuk? @pharmamom, how is your dad?

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Hi, thanks for the reach out.. I am doing well, although I do worry about another stroke so anxiety is an issue. A common theme seems to be that the medical profession can't be to specific as to anyone's outcome in particular. I have had varying opinions about me returning to exercise. I got fed up and am now running 5k three times a week whilst I wait to have a PFO closed, I did 98k in November and 76 in December, I am fortunate to be able to do this but I believe that finding anything to take your mind of the experience helps.

One thing I do experience is short term memory loss, but it is not specific, somethings I remember, but the doing stuff, remembering to make a call etc is what I have an issue with. I was wondering how many people have this?. It is strange because if you say to me you were going to call someone, I will remember, I seem to need a kickstart. I am having and issue remembering non important conversations.

Please contact me I am happy to share my experiences with anyone.

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@lisalucier

Hi, @gakimble. I wanted to add my welcome to Mayo Clinic Connect. I'm sorry to hear about all your dad's been through. How is he doing?

I also wanted to catch up with some of you who have mentioned experiencing strokes and see how things are going, like @hammondm99 @wendyruhl @kweber @trkuk? @pharmamom, how is your dad?

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I am doing well. I will hit the 1 year mark since I had my stroke this Sunday. Things have improved greatly since I had my stroke, big strides over the past month or so, but I am not 100% of the way back. The worst thing I am dealing with right now is a little bit of brain flooding. It seems like it affects me when I have to walk " between the lines", such as sidewalks, store aisles, walkways, narrow hallways, things like that. I seem to get a little anxious or lightheaded, hard to explain, but it is tolerable and manageable. It's not an issue when I walk in the road or wide open places. It has improved over the past year, but I am starting to think this may be the new norm. No issues driving my car or motorcycle, most other issues I have experienced are barely noticeable now or I am used to them.

I am very happy that much of my guitar playing ability has come back! The (pretty much) daily practice has had me focusing on the fine motor skills on my right side, I just picked up a stomp box (tap with your foot and it makes a drum or cymbal sound) for my daughter, who is also a musician, and this is allowing me to work on keeping the beat with my right foot while I play. Great therapy!

Similar to trkuk, I worry about having another stroke, It took a lot of work to get to where I am and I really don't want to go through it again. More importantly, I don't want my family to worry and I certainly do not want to cause hardship on their end because of my health. I know I am fortunate it was not worse, I try not to whine about it, but it kind of stinks having had to deal with this though. I may have already stated this in an earlier post, my apologies for being redundant, my cardiologist says my stroke was likely caused by periodic and infrequent Afib that caused a clot to form in my heart then it was pumped to my brain. I have had a number of tests and I am otherwise a healthy guy (have run 3 marathons, 1/2 marathon, Olympic distance triathlons, 100 mile bike rides, etc in the past 18 years). I have a Medtronic Linq device implanted in my chest that uploads my EKG everyday to the doctor's office. They noticed at my last visit a few months back instances where I had PACs and they prescribed Metaprolol to make them less intense. I can feel my heart beat through my chest when it happens, it usually only lasts a minute or so. I guess the theory is that PACs can trigger Afib, no Afib episodes yet, but I feel it is a wait and see thing.

I had a DVT in my leg 5 or 6 years back and the cardiologist I was seeing at the time diagnosed it as "my body being injured and it was healing itself" (I was laying a large patio, replacing windows on the 2nd floor in my house and was training for a 100 mile bike ride at the time, so it made sense to me). I am thinking now that it was due to an Afib episode also.

I do want to thank everyone that participates on this site. It has helped me a lot over the past months and I can only hope my experiences have helped others too. It feels good to talk to others that "get it", helps a lot to validate what I am going through!
.

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Maybe its just me, just curious to hear what others say. I keep telling myself that this stroke thing was not a big deal, try to focus on the gains I am making. I came to the realization last night that having a stroke was a big deal, pretty major thing to go through. I try to downplay or cover up any outward signs so others don't notice, more to keep them from being uncomfortable than worrying about what people think about me. I don't talk to anyone (except you fine people!) about what I am dealing with. I don't think anyone around me, including my family, understand that I deal with this daily, tend to suck it up as they say. For instance, every day I wake up and check to see if the room is spinning before getting out of bed, I have to hold on a little tighter to railings and think a little more when I go down stairs, I went to Hobby Lobby (could be any store) yesterday and had to deal with the anxiety I get when going into busy places, I took a walk with my dogs and had to deal with the whole lightheaded feeling for the last mile of my walk, then I went to bed thankful that I made it another day. It's been pretty much the same every day for the past year, getting better, but still the same. I keep myself very busy working on projects, hobbies and other activities and forget about the whole stroke thing a lot of the time and put on a good front when I can't so others don't notice when I am feeling the effects. I am hoping and guessing someday the thoughts will become an afterthought. Anyone else relate to this?

Liked by Wendy, jmjlove

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@hammondm99

Maybe its just me, just curious to hear what others say. I keep telling myself that this stroke thing was not a big deal, try to focus on the gains I am making. I came to the realization last night that having a stroke was a big deal, pretty major thing to go through. I try to downplay or cover up any outward signs so others don't notice, more to keep them from being uncomfortable than worrying about what people think about me. I don't talk to anyone (except you fine people!) about what I am dealing with. I don't think anyone around me, including my family, understand that I deal with this daily, tend to suck it up as they say. For instance, every day I wake up and check to see if the room is spinning before getting out of bed, I have to hold on a little tighter to railings and think a little more when I go down stairs, I went to Hobby Lobby (could be any store) yesterday and had to deal with the anxiety I get when going into busy places, I took a walk with my dogs and had to deal with the whole lightheaded feeling for the last mile of my walk, then I went to bed thankful that I made it another day. It's been pretty much the same every day for the past year, getting better, but still the same. I keep myself very busy working on projects, hobbies and other activities and forget about the whole stroke thing a lot of the time and put on a good front when I can't so others don't notice when I am feeling the effects. I am hoping and guessing someday the thoughts will become an afterthought. Anyone else relate to this?

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Hammondm99, exactly the same for me! Nearly every word! And I also find that when I am ina difficult way…family and friends may scoff and belittle my mentioning a TBI, because, you know I look so good and it couldn't possibly be that hard………they do not have a clue what it is like to be dizzy, lightheaded and unfocused and lurchy every single day for most or all of that day no matter what I am doing. Or how tiring the effort to continually cover it up is……..or how sick I get in every single store, or event all the time. Sometimes buying our groceries is such an effort that I feel like I will not make it the ten miles home to the lake. But you understand and the others here understand and our mentors get it …….that helps immeasureably. Thank you all for being here.

Liked by hammondm99, Wendy

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@hammondm99

Maybe its just me, just curious to hear what others say. I keep telling myself that this stroke thing was not a big deal, try to focus on the gains I am making. I came to the realization last night that having a stroke was a big deal, pretty major thing to go through. I try to downplay or cover up any outward signs so others don't notice, more to keep them from being uncomfortable than worrying about what people think about me. I don't talk to anyone (except you fine people!) about what I am dealing with. I don't think anyone around me, including my family, understand that I deal with this daily, tend to suck it up as they say. For instance, every day I wake up and check to see if the room is spinning before getting out of bed, I have to hold on a little tighter to railings and think a little more when I go down stairs, I went to Hobby Lobby (could be any store) yesterday and had to deal with the anxiety I get when going into busy places, I took a walk with my dogs and had to deal with the whole lightheaded feeling for the last mile of my walk, then I went to bed thankful that I made it another day. It's been pretty much the same every day for the past year, getting better, but still the same. I keep myself very busy working on projects, hobbies and other activities and forget about the whole stroke thing a lot of the time and put on a good front when I can't so others don't notice when I am feeling the effects. I am hoping and guessing someday the thoughts will become an afterthought. Anyone else relate to this?

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Hi Hammondm99, I think that having a stroke and the changes it makes to you as an individual is a very massive thing.
For me, I was focused on how impressive my recovery was but the hard part was realising, that there is more to it than that.

A question that I get asked a lot and my wife did after her SAH, is, are you better now? I found it at the time and still do, the most frustrating question. You are different after your stroke, not necessarily in a bad way, but just because I look well it does not mean my brain is better.

People used to look at my wife when she first volunteered in a tuck shop after she came home, she was a bit slow giving the change out and the looks she got were terrible. You almost wanted to wear a badge saying don't assume I'm stupid! …. I've had a stroke please be patient!

I think that is a problem as so far as brain related injury, ilness etc, if people can't see a physical maifestation then they assume you are fine. I would like to be fine but then accepting that this is the new me and I am happy with that and however that changes in the future is a big thing.

It is very worrying, stressful and sometimes depressing, I think this is normal.
Great news that you are playing guitar and please keep that up, I have always been rubbish at playing the guitair. It would have been cool to wake up with a new ability to play like hendrix but I got worse! It is interesting reading about your triathlons etc, I know a lot of retired professional athletes, these are guys that won vets world records, some have run 200+ marathons and in thier 60's some in thier 70's have all developed AFIB, very strange. Please keep in touch.

Liked by hammondm99

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@lakelifelady

Hammondm99, exactly the same for me! Nearly every word! And I also find that when I am ina difficult way…family and friends may scoff and belittle my mentioning a TBI, because, you know I look so good and it couldn't possibly be that hard………they do not have a clue what it is like to be dizzy, lightheaded and unfocused and lurchy every single day for most or all of that day no matter what I am doing. Or how tiring the effort to continually cover it up is……..or how sick I get in every single store, or event all the time. Sometimes buying our groceries is such an effort that I feel like I will not make it the ten miles home to the lake. But you understand and the others here understand and our mentors get it …….that helps immeasureably. Thank you all for being here.

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I agree with everyone too!! Even though I don't think my stroke was not quite as damaging as some of you, I still feel the same things. I think that is why I hate winter so much now and work is not fun anymore, it truly is work and then some! To bad we all couldn't go have lunch together someday! Take Care!!

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@trkuk

Hi Hammondm99, I think that having a stroke and the changes it makes to you as an individual is a very massive thing.
For me, I was focused on how impressive my recovery was but the hard part was realising, that there is more to it than that.

A question that I get asked a lot and my wife did after her SAH, is, are you better now? I found it at the time and still do, the most frustrating question. You are different after your stroke, not necessarily in a bad way, but just because I look well it does not mean my brain is better.

People used to look at my wife when she first volunteered in a tuck shop after she came home, she was a bit slow giving the change out and the looks she got were terrible. You almost wanted to wear a badge saying don't assume I'm stupid! …. I've had a stroke please be patient!

I think that is a problem as so far as brain related injury, ilness etc, if people can't see a physical maifestation then they assume you are fine. I would like to be fine but then accepting that this is the new me and I am happy with that and however that changes in the future is a big thing.

It is very worrying, stressful and sometimes depressing, I think this is normal.
Great news that you are playing guitar and please keep that up, I have always been rubbish at playing the guitair. It would have been cool to wake up with a new ability to play like hendrix but I got worse! It is interesting reading about your triathlons etc, I know a lot of retired professional athletes, these are guys that won vets world records, some have run 200+ marathons and in thier 60's some in thier 70's have all developed AFIB, very strange. Please keep in touch.

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I think the most frustrating thing I hear from people that have never had a stroke is telling me how lucky I am it wasn't worse. Lucky is the 20 something year old in Florida that won the lottery, I had a stroke, nothing lucky there! Yes, I am fortunate that it wasn't worse, but I wouldn't exactly call anything to do with a stroke lucky. When I was in the ICU for stroke patients, I saw a lot of people worse off than me, but I still had a heck of a time making it 20 feet from my bed to the bathroom and the nurse still had to keep a hold on me the entire time so I didn't fall over.

Thanks for the good words on the guitar. I have been playing since my early teens, part of life now, never going to give that up! I agree it would have been nice to open a new part of my brain and play like some of the legends!

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I had a PFO closure with an Amplatzer Occuluder device 3 weeks ago and I am wondering if anyone has had any post procedure symptons/concerns. I had a cerebellar stroke 17 months ago and post they found the hole. The procedure is to help cut down my risk of a second stroke – I am 63 and had a pretty good recovery but still getting a little better all the time.

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Hi @bermuda,

I moved your message to this discussion on cerebellar stroke as I thought it would be beneficial for you to be introduced to members who have discussed PFO closure and/or cerebellar stroke.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members.
I’m also tagging @gr82balive who has had an ICD implant and PFO closure, and may be able to share more insights.

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