Cerebellar Stroke - experience/treatment/recovery

Long story long- sorry... I had a left cerebellar stroke on April 10, 2018. I was 50 and athletic at the time. Awakening to extreme room spinning i fell out of bed onto the concrete floor. I called to my physician wife who helped me crawl to the bathroom. I was vomiting uncontrollably. At the time I was so disoriented that I did not realize that my left arm and leg were not working correctly. I knew my face was numb but that seemed unimportant at the time. The paramedics came and my wife and they had a phone conversation with an ER doc friend. it was presumed that I had a severe case of Benign Paroxysmal Positional Vertigo (BPPV) and the decision was made that I would remain at home. I had every single BPPV symptom. Spent a couple days at home trapped on the couch being very sick doing head manipulations intended to reposition the crystals in my vestibular system. On day three I struggled with my wifes help to get out to the car and headed to see the now available person who specializes in BPPV therapy. She looked at me for less than a minute and told me to go to the ER. I was headed there anyway to get some IV fluids- hadn't eaten or drank for 2 days. At the ER, a doctor friend administered some quick tests and advised a CAT scan. A while later while sitting on a gurney, I got to see my wife and two personal friends that are ER docks look at my imagery ( which was not visible to me).with ashen looks on there faces. My stoke had taken out the majority my left cerebellum and a very small portion if the right. It was then that I got the first ambulance ride of my life being transferred to another facility that has specializes in stroke recovery. As is the norn, I was required to remain still for a few (four) days which was utter torture. As that time wound down I did some hobbling with a walker and with assistance. I likened that walking to having had several strong drinks while walking with one high heeled shoe on- didn't really know where my left foot was. On day 6 or so I was transferred to rehab. it was here that i realized that I was one of the fortunate ones. I was 50, in good shape, and ready to try anything. Those around me were mostly older and affected in more severe ways. Over the course of several days I went from experiencing extreme nystagmus while hobbling to being able to walk somewhat effectively. I think I was the cause of great concern and challenge to the rehab staff. On day three of rehab we were supposed to take the elevator two floors up and I refused- demanding to take the stairs ( i live in a house with 32 stairs to the kitchen and i knew I needed to climb stairs to go home). My somewhat fearless PT agreed to let me do some stairs. We walked up two flights- it was not easy and I was really dizzy and my left leg was still pretty "off.". Once two flights up we turned around and my PT informed me that walking down stairs was actually a controlled fall. I looked down the stairs and experienced slot machine like vertical nystagmus. Determined, I worked my way down the stairs to my floor. I have spent a lifetime of engaging in various extreme athletics and that was the scariest thing I've ever done! While walking daily in the hospital I would pester the PT staff to go outside every time we passed a door. On day 9 in the hospital, the fearless PT (tired of listening to me) let me go outside and we walked around the block including a large set of stairs and some uneven surfaces. I can't thank her enough for having the guts to bend the rules and let me progress in that way (and get some fresh air). At about that time a really nice volunteer in his mid sixties stopped in and told me of his recovery following a cerebellar stoke he'd had at about the same age as mine. That was very reassuring. He then told me of the other two subsequent strokes he had had and how those recoveries were not as easy. WOW, that made me think. I was trying my hardest and making headway- the thought of starting that over from a greater disadvantage was pretty heavy for me at that time. I returned home and was able to begin my recovery in earnest. Lots of walks and lots of naps. I actually started mountain biking again but had a nystagmus related header crash and parked that bike. Road biking has been OK and I have done tons of that. I also have started to run once a week or so. As last fall approached I made the decision to buy a season pass at my local ski area- I 've had one every year since I was 8. I went skiing by myself the first time out and after laying into it pretty hard for 3 runs I found myself so disoriented and so nauseous that I had to gingerly snowplow down off the mountain and hobble to my car. Second time I went with my wife and daughter and got less dizzy and less nauseous The third time up I really went for it and again made myself sick and ended up laying on the asphalt in the parking lot recover enough for the trip home. Last Saturday I again went up by myself and really went for it hitting jumps and doing spinning aerial maneuvers etc. Amazingly my previous conditions had all but vanished! Skied again the next day with almost no side effects.

It has now been over seven months and I feel as if I still make improvements every day.

Must luckily, I had top of the line employer provided insurance when this thing happened and have been able to avail myself of lots of PT and a trip to the Mayo Clinic for some no BS follow up. The physician I saw at Mayo had the guts to tell me what i should and maybe should not do going forward- that was priceless. Had I followed what had seemed to be the initial advice from others to lay low and take it easy I would not have made so much progress.

I resigned from the job with the great benefits and was buying the great insurance coverage on COBRA for $800 per month just for me- not sustainable As my stellar insurance was winding down in December '18 I cornered my Chiropractor neighbor and asked him if there were specialties in chiropracty and if he thought he could help me. Miraculously he is a chiropractor who specializes in balance rehabilitation, specifically that involving the vestibular system. Over the course of a few visits he did a variety of tests of my vestibular system- some if which made me ill. The tests revealed that I still had severe nystagmus with left rotational activities. He prescribed some simple eye exercises. At first, A round of 10 simple exercises would make me ill and dizzy. Over the course of a month I seem to have gotten much better and, can now ski hard for Pete's sake.

As I improve, I now realize how much compensation I have been doing all these months. With improvement and less compensation I find that there are many small loose ends I have not been aware of. I have not yet accepted any "new normal."

BOTTOM LINE. ASK THE HARD QUESTIONS, DON'T TAKE NO FOR AN ANSWER, BE DEMANDING AND PERSISTENT WITH YOUR CARE GIVERS, BE OPEN TO TRY A VARIETY OF RECOVERY METHODS, YOUR WELL BEING AND OUTCOME DEPEND ON IT.

Others on this forum have eluded to being scared following their stroke - I understand this. I dwelled on recurrence for a while (especially after hearing the volunteer's story mentioned above) but seem to have let those concerns go over time. You only live once and you owe it to yourself (and the ones you love) to put aside your fears and do all you can do. My great concern going forward is the out of pocket costs of ongoing and future medical needs fo me and my family. Those of us who have had a stroke are now the poster children for coverage denial if pre existing conditions become exclusionary.

Long story long- sorry... I had a left cerebellar stroke on April 10, 2018. I was 50 and athletic at the time. Awakening to extreme room spinning i fell out of bed onto the concrete floor. I called to my physician wife who helped me crawl to the bathroom. I was vomiting uncontrollably. At the time I was so disoriented that I did not realize that my left arm and leg were not working correctly. I knew my face was numb but that seemed unimportant at the time. The paramedics came and my wife and they had a phone conversation with an ER doc friend. it was presumed that I had a severe case of Benign Paroxysmal Positional Vertigo (BPPV) and the decision was made that I would remain at home. I had every single BPPV symptom. Spent a couple days at home trapped on the couch being very sick doing head manipulations intended to reposition the crystals in my vestibular system. On day three I struggled with my wifes help to get out to the car and headed to see the now available person who specializes in BPPV therapy. She looked at me for less than a minute and told me to go to the ER. I was headed there anyway to get some IV fluids- hadn't eaten or drank for 2 days. At the ER, a doctor friend administered some quick tests and advised a CAT scan. A while later while sitting on a gurney, I got to see my wife and two personal friends that are ER docks look at my imagery ( which was not visible to me).with ashen looks on there faces. My stoke had taken out the majority my left cerebellum and a very small portion if the right. It was then that I got the first ambulance ride of my life being transferred to another facility that has specializes in stroke recovery. As is the norn, I was required to remain still for a few (four) days which was utter torture. As that time wound down I did some hobbling with a walker and with assistance. I likened that walking to having had several strong drinks while walking with one high heeled shoe on- didn't really know where my left foot was. On day 6 or so I was transferred to rehab. it was here that i realized that I was one of the fortunate ones. I was 50, in good shape, and ready to try anything. Those around me were mostly older and affected in more severe ways. Over the course of several days I went from experiencing extreme nystagmus while hobbling to being able to walk somewhat effectively. I think I was the cause of great concern and challenge to the rehab staff. On day three of rehab we were supposed to take the elevator two floors up and I refused- demanding to take the stairs ( i live in a house with 32 stairs to the kitchen and i knew I needed to climb stairs to go home). My somewhat fearless PT agreed to let me do some stairs. We walked up two flights- it was not easy and I was really dizzy and my left leg was still pretty "off.". Once two flights up we turned around and my PT informed me that walking down stairs was actually a controlled fall. I looked down the stairs and experienced slot machine like vertical nystagmus. Determined, I worked my way down the stairs to my floor. I have spent a lifetime of engaging in various extreme athletics and that was the scariest thing I've ever done! While walking daily in the hospital I would pester the PT staff to go outside every time we passed a door. On day 9 in the hospital, the fearless PT (tired of listening to me) let me go outside and we walked around the block including a large set of stairs and some uneven surfaces. I can't thank her enough for having the guts to bend the rules and let me progress in that way (and get some fresh air). At about that time a really nice volunteer in his mid sixties stopped in and told me of his recovery following a cerebellar stoke he'd had at about the same age as mine. That was very reassuring. He then told me of the other two subsequent strokes he had had and how those recoveries were not as easy. WOW, that made me think. I was trying my hardest and making headway- the thought of starting that over from a greater disadvantage was pretty heavy for me at that time. I returned home and was able to begin my recovery in earnest. Lots of walks and lots of naps. I actually started mountain biking again but had a nystagmus related header crash and parked that bike. Road biking has been OK and I have done tons of that. I also have started to run once a week or so. As last fall approached I made the decision to buy a season pass at my local ski area- I 've had one every year since I was 8. I went skiing by myself the first time out and after laying into it pretty hard for 3 runs I found myself so disoriented and so nauseous that I had to gingerly snowplow down off the mountain and hobble to my car. Second time I went with my wife and daughter and got less dizzy and less nauseous The third time up I really went for it and again made myself sick and ended up laying on the asphalt in the parking lot recover enough for the trip home. Last Saturday I again went up by myself and really went for it hitting jumps and doing spinning aerial maneuvers etc. Amazingly my previous conditions had all but vanished! Skied again the next day with almost no side effects.

It has now been over seven months and I feel as if I still make improvements every day.

Must luckily, I had top of the line employer provided insurance when this thing happened and have been able to avail myself of lots of PT and a trip to the Mayo Clinic for some no BS follow up. The physician I saw at Mayo had the guts to tell me what i should and maybe should not do going forward- that was priceless. Had I followed what had seemed to be the initial advice from others to lay low and take it easy I would not have made so much progress.

I resigned from the job with the great benefits and was buying the great insurance coverage on COBRA for $800 per month just for me- not sustainable As my stellar insurance was winding down in December '18 I cornered my Chiropractor neighbor and asked him if there were specialties in chiropracty and if he thought he could help me. Miraculously he is a chiropractor who specializes in balance rehabilitation, specifically that involving the vestibular system. Over the course of a few visits he did a variety of tests of my vestibular system- some if which made me ill. The tests revealed that I still had severe nystagmus with left rotational activities. He prescribed some simple eye exercises. At first, A round of 10 simple exercises would make me ill and dizzy. Over the course of a month I seem to have gotten much better and, can now ski hard for Pete's sake.

As I improve, I now realize how much compensation I have been doing all these months. With improvement and less compensation I find that there are many small loose ends I have not been aware of. I have not yet accepted any "new normal."

BOTTOM LINE. ASK THE HARD QUESTIONS, DON'T TAKE NO FOR AN ANSWER, BE DEMANDING AND PERSISTENT WITH YOUR CARE GIVERS, BE OPEN TO TRY A VARIETY OF RECOVERY METHODS, YOUR WELL BEING AND OUTCOME DEPEND ON IT.

Others on this forum have eluded to being scared following their stroke - I understand this. I dwelled on recurrence for a while (especially after hearing the volunteer's story mentioned above) but seem to have let those concerns go over time. You only live once and you owe it to yourself (and the ones you love) to put aside your fears and do all you can do. My great concern going forward is the out of pocket costs of ongoing and future medical needs fo me and my family. Those of us who have had a stroke are now the poster children for coverage denial if pre existing conditions become exclusionary.

Hello everyone, My husband and I are very new to this... he is 56yrs old and in great health but thursday at 1am he ready to punch the time clock at work... he had felt absolutely fine... when he stood up he felt week on his right side and nauseated my son in helped him to the car but he could hardly walk so he took him to er ... by the time he got there he could not open his eyes or even move without throwing up...his eyes would not focus they took his vitals and said it was vertigo and that his vitals were fine... they were very busy so they parked us in a room... a couple hours later we saw the doctor he took a preliminary Ct scan and an MRI and checked his heart....they were still calling it vertigo but since nothing was helping him to stop throwing up they said they would admit him and preform ultrasounds on his neck and heart and sent him for another more detailed MRI... the next day they told us it had been a cerebral stroke... we are lucky..his left side is weak, he has problems writing and he talks with a very slight mumble if he is sitting in bed talking to you it is very difficult to tell that anything is wrong... However he has no balance and at this time cannot even use the walker...this is very new..but we have no insurance so they are talking about sending him home as soon as I can get a ramp for the home... they also said we would get OT and PT visits at least once a week... we know we are lucky but at this point we are so overwhelmed and lost in the whole process...any advice is welcome

My husband just had a cerebellar stroke in February. He is still struggling with an upset stomach.

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.