Cerebellar Stroke - experience/treatment/recovery

I’m a Cerebellar stroke survivor and have been interested in “meeting” others who have had this experience. I’m a 71 year old woman who had my stroke in 2018, two weeks after having a perfect annual physical. Six years later, I am so thankful to be alive and able to accept the new life I now have. It’s taken me years to understand this is the new me. I still pray that I’ll learn new techniques to make my vertigo better, even though I know it’s impossible to be completely normal again. I look so forward to talking to others who have experienced a cerebellar stroke.

I am brand new not only to this site, but to discussion boards of any kind. Please forgive the long post, but there is so much to tell!! I had a massive left cerebellar stroke on 1/30/22 while on the golf course. I am a male in good shape/very active and was at the ripe age of 43 at the time- just 3 months from my 44th birthday. I did not have high cholesterol, high blood pressure, did not smoke… none of the “typical reasons”. After many, many tests they determined it was caused from COVID- I contracted COVID for the first time just 2 weeks prior to the stroke. I remember feeling VERY dizzy and disoriented while playing golf. My friend followed me back over to my house and he and my wife later told me I was pacing back and forth asking the same questions over and over (I remember none of that). My wife was finishing getting ready and was going to take me to the ER when I suddenly slid down the wall into the fetal position and was grasping the back of my neck. She called an ambulance. I was taken to the local ER … 👎🏻 Once the ER doctor found out that I had MS - (diagnosed 12/2014), he had tunnel vision even though my wife and mother were telling him they thought it might be a stroke, he would hear none of it. 16 hours later I was intubated and flown to a hospital in Little Rock where I had an emergency craniotomy because my brain had swollen to the point it was pressing on my spinal cord. I was in a coma for 3 days and stayed in the hospital a total of 34 days. The last 14 were doing in-patient rehab. I was told by several doctors and specialists that there was no medical reason I should be alive. I immediately began out-patient therapy once I got released. I made leaps and bounds from where I was up until about the 3-4 month mark. I couldn’t sit up without falling, then to a wheel chair, to a walker and then a cane. 4 months after the stroke I went back to work full time… I am a chemical sales rep and was VERY active at all of the plants I serviced. Since starting back to work and not doing the PT like I was I seem to have reverted some. First of all, I never lost memory, speech or much cognitive ability. I am VERY grateful for that! My deficits have mainly been physical- balance, ataxia, tremor etc. I have tried so many “things”- from pharmacological to adaptive devices, AFO, FES… none of it has helped. I am SO VERY frustrated. Not only because of not getting better, but also at the fact that doctors, specialists etc. seem to know zero!! Lots of times I’ve had to act as my own doctor-(weaning off of meds, trying new meds etc. ) I am a Type A personality and slightly OCD and control freak. Not a good combination to have while dealing with this crap!

I stop rambling for now. Please feel free to comment or ask any questions. I am an open book!

Welcome, @neverquit72450. Thank you for sharing your story with the community. Hearing "there is no medical reason you should be alive," had to be quite the harrowing experience in of itself.

Trying to balance patience and caution while being a Type A personality presents many inner difficulties as well.

@v8s, @hfp, @mb0926 all discussed having balance issues as well and may be able to share some more of their experiences and insights with these symptoms.

@neverquit72450 - Beyond trying to lobby for your physical health, have you found things to keep your Type A personality busy while you continue to heal?

I am brand new not only to this site, but to discussion boards of any kind. Please forgive the long post, but there is so much to tell!! I had a massive left cerebellar stroke on 1/30/22 while on the golf course. I am a male in good shape/very active and was at the ripe age of 43 at the time- just 3 months from my 44th birthday. I did not have high cholesterol, high blood pressure, did not smoke… none of the “typical reasons”. After many, many tests they determined it was caused from COVID- I contracted COVID for the first time just 2 weeks prior to the stroke. I remember feeling VERY dizzy and disoriented while playing golf. My friend followed me back over to my house and he and my wife later told me I was pacing back and forth asking the same questions over and over (I remember none of that). My wife was finishing getting ready and was going to take me to the ER when I suddenly slid down the wall into the fetal position and was grasping the back of my neck. She called an ambulance. I was taken to the local ER … 👎🏻 Once the ER doctor found out that I had MS - (diagnosed 12/2014), he had tunnel vision even though my wife and mother were telling him they thought it might be a stroke, he would hear none of it. 16 hours later I was intubated and flown to a hospital in Little Rock where I had an emergency craniotomy because my brain had swollen to the point it was pressing on my spinal cord. I was in a coma for 3 days and stayed in the hospital a total of 34 days. The last 14 were doing in-patient rehab. I was told by several doctors and specialists that there was no medical reason I should be alive. I immediately began out-patient therapy once I got released. I made leaps and bounds from where I was up until about the 3-4 month mark. I couldn’t sit up without falling, then to a wheel chair, to a walker and then a cane. 4 months after the stroke I went back to work full time… I am a chemical sales rep and was VERY active at all of the plants I serviced. Since starting back to work and not doing the PT like I was I seem to have reverted some. First of all, I never lost memory, speech or much cognitive ability. I am VERY grateful for that! My deficits have mainly been physical- balance, ataxia, tremor etc. I have tried so many “things”- from pharmacological to adaptive devices, AFO, FES… none of it has helped. I am SO VERY frustrated. Not only because of not getting better, but also at the fact that doctors, specialists etc. seem to know zero!! Lots of times I’ve had to act as my own doctor-(weaning off of meds, trying new meds etc. ) I am a Type A personality and slightly OCD and control freak. Not a good combination to have while dealing with this crap!

I stop rambling for now. Please feel free to comment or ask any questions. I am an open book!

I am brand new not only to this site, but to discussion boards of any kind. Please forgive the long post, but there is so much to tell!! I had a massive left cerebellar stroke on 1/30/22 while on the golf course. I am a male in good shape/very active and was at the ripe age of 43 at the time- just 3 months from my 44th birthday. I did not have high cholesterol, high blood pressure, did not smoke… none of the “typical reasons”. After many, many tests they determined it was caused from COVID- I contracted COVID for the first time just 2 weeks prior to the stroke. I remember feeling VERY dizzy and disoriented while playing golf. My friend followed me back over to my house and he and my wife later told me I was pacing back and forth asking the same questions over and over (I remember none of that). My wife was finishing getting ready and was going to take me to the ER when I suddenly slid down the wall into the fetal position and was grasping the back of my neck. She called an ambulance. I was taken to the local ER … 👎🏻 Once the ER doctor found out that I had MS - (diagnosed 12/2014), he had tunnel vision even though my wife and mother were telling him they thought it might be a stroke, he would hear none of it. 16 hours later I was intubated and flown to a hospital in Little Rock where I had an emergency craniotomy because my brain had swollen to the point it was pressing on my spinal cord. I was in a coma for 3 days and stayed in the hospital a total of 34 days. The last 14 were doing in-patient rehab. I was told by several doctors and specialists that there was no medical reason I should be alive. I immediately began out-patient therapy once I got released. I made leaps and bounds from where I was up until about the 3-4 month mark. I couldn’t sit up without falling, then to a wheel chair, to a walker and then a cane. 4 months after the stroke I went back to work full time… I am a chemical sales rep and was VERY active at all of the plants I serviced. Since starting back to work and not doing the PT like I was I seem to have reverted some. First of all, I never lost memory, speech or much cognitive ability. I am VERY grateful for that! My deficits have mainly been physical- balance, ataxia, tremor etc. I have tried so many “things”- from pharmacological to adaptive devices, AFO, FES… none of it has helped. I am SO VERY frustrated. Not only because of not getting better, but also at the fact that doctors, specialists etc. seem to know zero!! Lots of times I’ve had to act as my own doctor-(weaning off of meds, trying new meds etc. ) I am a Type A personality and slightly OCD and control freak. Not a good combination to have while dealing with this crap!

I stop rambling for now. Please feel free to comment or ask any questions. I am an open book!

I’m new to this site, in fact you’re the first person I’ve responded to since joining. I had my cerebellar stroke in 2018. I’m older than you , but I was also very active. I had just had a “perfect” physical before waking in the middle of the night to extreme nausea and dizziness. My husband immediately rushed me to our hospital. I went through 17 hours of heart tests before a doctor said my heart was perfect. He ordered a brain scan and reported I had experienced a cerebellar stroke. Of course I was out of the TPA time frame. No doctor has an explanation. I had to go into rehab facility and learn to walk. I lost 30 pounds due to my nausea. I’m blessed to be here, have no paralysis, but I’m left with vertigo and my own frustration of having to accept the new me. There are other issues that I’ve learned to deal with, but I am still trying to teach myself acceptance of my situation. I have found a few things that help me
and I can tell you a few things that trigger my vertigo. That’s why I joined this group. I’m hoping to get advice from others who are dealing with my issues. I wish you all the best. Hang in there. You’re young and I hope you can learn to manage this.

I think it is wonderful that your dizziness/vertigo isn’t as bad as it was in the beginning. I’m sure it’s not perfect, but just the fact that it’s not getting worse is very important. I wish I could say that. I think I’ve made a huge mistake by stopping my physical therapy. I took therapy for about 6 months after I was discharged from my rehab facility. After that I stopped doing my exercises because I thought I could just walk with my cane, or swim, and that would be enough. I think I was wrong. I need upper body strength and I need to work on endurance. I’m a little (5 years) late, but I’m going to get back to my exercises that my therapist gave me after I had the stroke. I thought they were too easy, but they gave me a whole body workout. Leg lifts, side steps, marching, arm lifts, getting out of a chair, reaching, (10 repeats). Anyway, I’d give anything to be able to say my dizziness is better. I hope I can get back to feeling as well as I did while doing my daily exercises years ago. I’m praying all of us going through this will find more miracles.

I too found that when I stopped doing physical therapy regularly, things seemed to go backwards…😒 It’s like everything else for me, I get motivated, then I fall off when I don’t see immediate results! I’m learning the hard way that this stroke thing doesn’t work that way. I’m sure you, like me, beat yourself up for stopping the regular PT. It feels like I worked SO SO hard for that gain and for it to be seemingly for nothing is heartbreaking! We’ll make a pact to start doing something- ANYTHING every single day and not to quit!

Regarding your dizziness/vertigo- I’m sure you’ve tried all the typical things- meclizine, scopolamine patch etc. Those seemed to make me worse! One thing that did eventually help me was vestibular therapy. Not only maneuvers but also eye tracking exercises and techniques etc. Something you may look into. If you’re like me, you’re constantly searching for anything.