Cerebellar Stroke - experience/treatment/recovery

So much I really appreciate that reply..
I am trying not to be anxious but it has been really hard.
I'm still in the process of trying to find out on the investigation stage of what caused this and if I knew what caused that I would feel a lot better about my prognosis going forward.

It's the fear of the unknown and reoccurrence that is making me anxious.
I have drastically changed my diet completely and now do as much mild exercises I can until I build my strength up.

Thanks so much for the supportive words.
I have been a bundle of nerves.
Anytime I have a headache I think it's happening again or if I feel slightly dizzy or twinges in my right side.
I actually had a massive panic attack at the Weekend and I thought I was having a heart attack.
I was very close to calling an ambulance.
As you say anxiety does not help. I think I'm going to see somebody about my anxiety. Time is the great healer.
I'm a single mom so always worry all the time about who will take care of my children so when this happened I actually sat down and made plans for what to do in case something did happen which made my mind relax a little.

It's only the third week so I'll be happy when I have the first month over me.. will feel a little better.
My diet is super healthy now and I'm really high doses of cholesterol meds and diabetes medicine which I was not before. I'm also back at work which was very stressful the first day when I realized I couldn't type ...I couldn't get my hand to work as well as it did before so I started crying hysterically and left.
I'm having my transesophageal echocardiogram on Friday wondering has anybody had this because I'm really nervous it sounds very invasive.
I've had bubble test ..cat-scans echocardiograms MRI's next week I'm going to have a stress test..
Thanks for all the support everyone

Hello all. First time posting since I had my cerebellar stroke. I had my stroke on 12/29/15 when I was 40. I was at work and out of nowhere I had the worst headache imaginable. At first I thought I was dehydrated or hadn't had enough coffee. I would tilt my head slightly and it would cause me to vomit. After about an hour of thinking I just had a bad migrane I told my manager I had to go home.They brought me to the office and held me there for a couple of hours while a supervisor okayed me to go home. My company drove me home as I couldn't drive. When I got home my wife gave me two Excedrin migraines. I layed on my couch but every time I moved my head I ran to the bathroom to vomit. After over a day in bed my wife took me to the emergency room where they found I had a massive cerebellar stroke on the right side. I spent 6 days at the hospital 5 of which were in the ICU.On my last day they did a TEE test and found a PFO in my heart. I had my PFO closed May of 2018. Since my stroke I never really fully recovered. I still get very big dizzy spells,headaches everyday,I even have a hard time watching fast moving movies or credits. I went for vestibular physical therapy but it really didnt work for me. I have balance issues especially in the dark. I went back to work 3 months after my stroke. I worked for two years after but my residual effects seem to always be with me. My job is outdoors,balancing on steps,walking uneven surfaces. Before my stroke I could work 16 hours without issues. Now I cant make it through 8 hours. Long first post and I appreciate all the good news from people still recovering.

I had my stroke in Aug 2018, I'm battling daily headaches, balance is getting better but I work on it every day. I work in IT and I'm trying to get back to working a full 8 hours, 5 days a week. Best of luck to you!

All we can do is keep moving forward, and never backwards.

Anyone out there that has had s full left sided stroke with full recovery? I am getting a LINQ monitor and waiting scared on the table as I write this. They have found a small to moderate hole in my heart but are not convinced it was the cause for the stroke. I just turned 65. I am 110 lbs and was active until recently when I started having back problems.

Hi, @supra865 - welcome to Mayo Clinic Connect. Your story about being at work and vomiting every time you tilted your head sounds just awful. I'm glad your patent foramen ovale (PFO), or hole in your heart, was discovered and closed. It sounds very tough that you feel as though you've never fully recovered from your massive cerebellar stroke and that the vestibular physical therapy didn't work for you. Getting very big dizzy spells and headaches everyday has got to be really hard.

Are you still working at this point, then, @supra865, or have you left? Does your doctor have some next steps for you for rehab from your stroke?

@kweber - glad your balance is improving. Sounds like you are working hard at it. How are you contending with the daily headaches?

@lunnjoy - welcome to Mayo Clinic Connect. Trust that you will find this a caring and helpful community. I note you have the hole in the heart in common with @supra865. You mentioned getting a LINQ monitor and waiting scared on the table. Is your monitor in place now? Wondering if you would share more about what kind of stroke you experienced and what your exact diagnosis may be?

Yes I would like to share and find out of anyone out there has had difficulty with the LINQ monitor? I am already having it removed because I cannot tolerate it. Again , I am now awaiting that procedure as I have had no end of unpredictable spasms. My stroke was a full left sided stroke but I got the clot buster in time because I was with my daughter who is a Nurse Practioner. They have not determined for sure what caused the stroke. They said that the moderate hole they found was a possibility but they wanted to rule out Afib as well, which is why the LNQ monitor , but I cannot tolerate it.

@lunnjoy - That's unfortunate the LINQ monitor has not worked out for you and has been intolerable. If you'd be interested in sharing your experiences with it and reading the experiences of others, I'd encourage you to post in this thread about the LINQ monitor https://connect.mayoclinic.org/discussion/reveal-linq-insertable-cardiac-monitor/.

Glad your daughter got you help in a timely manner when you experienced your stroke.

Since the monitor is going to be removed, what will be the next step for you?

Hi Lisa, I went back to work 3 months after I got out of the hospital. But my symptoms never got better, I had a very demanding job on the railroad with odd hours,little to no sleep,working 12 hours and most of the time without lunch. I worked for 2 years after my stroke and it really took a toll on me. I worked for the railroad over 20 years and before my stroke I would be out at work 15-16 hours go to the hotel then back again for another 12 hours or so. After my stroke it was very hard to be there 8 hours,climbing the equipment,walking on rocks,and in every kind of weather. In june I stopped working there. A day after this past Christmas I suffered a mini stroke.And just this weekend had a migrane along with vomiting that kept me in bed for two days. I went for an MRI a week prior and it showed area of encephalomalacia in the inferomedial and posterior right cerebellar
hemisphere, with apparent small amount of hemosiderin my first stroke, punctate foci of T2-prolongation in the cerebral white matter. These are
nonspecific pattern, may be seen in the setting of migraines or other chronic
insults and developmental venous anomaly in the right parietal lobe.These last lines I copied and pasted from my MRI report. I see my neurologist next week.

I think I am going to go back to living. I got the monitor out today. I am switching from Coumadin to Xarelto, so no more weekly blood tests.