Cerebellar stroke experience, treatment, recovery - want to dialogue

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’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 had my first cerebellar stroke in 2018.I didn't "fit the stroke profile. "I was hit with extreme vertigo and nausea (no headache). Nothing showed on the CT scan but it did show up on the MRI the following day. All symptoms resolved in a few hours, no deficits. Five years later ( 3 months ago) I had my second cerebellar stroke. Same symptoms, hospitalized for 5 days. Now after 3 months the nausea is gone and the unbalance is very slowly improving. I use a cane (walker for the first 2 months). Dizzy when I turn my head. PT has helped and I'll be doing balance work from now on. Retraining the brain! I wish my doctors had emphasized the importance of this and I didn't need to resort to "Dr. Google" for information. In the process of testing to see if we can find out what is causing these strokes. Best wishes to everyone.

I am now 62 yrs old. Had my stroke in 2011. Had the same symptoms, except for the vomiting part. I had major headache (11:45 pm, ??) and had a hard time figuring out how to dial ph no.'s, could not stand enough to change clothes, hardly. Fell into a chair when got to lower level in house and watched the walls bounce up and down for a few minutes (this was the strangest part for some reason and not sure why I remember it). My son took me to ER, was told also that I had Vertigo and sent home. Next 2 days I still had major headache, felt slightly dizzy, so when to local clinic and just happened to have traveling MRI truck there that day and did a scan, just to rule out a possible stroke. It did show a Cerebellar Stroke did happen. Then of course everything changes and we tried to figure out the cause, which we never were able to confirm.
I suffered with headaches everyday for over a year I think, as soon as I opened my eyes in am, they would start. Does anyone else suffer from this?
Until a one day I thought maybe I was having a TIA, that spooked me alittle and stopped at a different clinic for fear it was happening again. After telling him the whole story, he prescribed propranolol. Which really helped, in my case.