Connect
← Return to Cerebellar Stroke - experience/treatment/recovery
Discussion
Cerebellar Stroke - experience/treatment/recovery
Stroke & Cerebrovascular Diseases | Last Active: May 5 11:27pm | Replies (515)Comment receiving replies
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!
Replies to "I am brand new not only to this site, but to discussion boards of any kind...."
I am chasing an old diagnosis of white matter disease, at age 40, radiology called it as ms, but neurologist said no. For why I am prone to ischemic cerebella’s strokes on left side. Two tias and two acute strokes since 2022. So you mentioning Ms really struck a bell to me. I definitely have bad experience with anyone wanting to check stroke once looking at my chart on epic. Not sure this new technology has helped either of us. Balance has been my common disability with each event. This time I gave up the walker on my own, but legs feel like jello, do not feel like I will fall because cautious. I do not even see a neurologist till 4/24 and stroke was 3/7. So annoying.
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.
My husband had a cerebellar stroke 3 yrs ago come June. He didn't have the classic FAST symptoms. It was two weeks until he got the Dx (would have been longer if I hadn't pushed past the PCP) and had more damage in the meantime. The vertigo has worsened. The neurologists agreed that FND/functional neurological disorder (the brain sending and receiving messages incorrectly) likely explains why the symptoms are greater than the brain damage accounts for. I've been reading online for almost three years. This dx is our first ray of hope. Therapy has begun, but it should've started sooner--and he's not convinced it's the way to go. But he agrees the advice to use muscle relaxation and deep breathing does help. One neurologist agreed with my comment that there could be PPPD/persistent postural perceptional dizziness present. The psychologist said that therapy for FND and 3PD are similar. At the final/one-year appt, the vascular neurologist only said he was making a referral to the psych dept. He didn't say why, so we assumed it was for coping strategies or depression (of which there are no symptoms). But there are daily head pains--with no relief from the headache neurologist's many prescriptions and injections. So again, these are likely due to FND. I share these in case it can help anyone else get relief sooner than later.
Connect
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?