Cerebellar Stroke - experience/treatment/recovery

I have had a Linq monitor in for a little over a year, it is inserted on my left pectoral. I had some slight discomfort for probably 8 months, more of a burning sensation. I think it may have been more due to the device pushing on the incision scar when I would lay on my left side, drive a car with the seat belt applying pressure to it. I started using Shea butter over the scar and it stopped.

I have a LINQ monitor but have not had any issues with it. I like knowing that it is there actually.

I have been off my computer for a while... Stroke was in October 2018 - I still cry in therapy - I have therapy (physical and occupational) 3 x week (2hrs) - balance continues to be a big issue, as well as being overwhelmed in certain situations. Everyone keeps telling me I need to see a neuropsychologist but I'm not so sure I could withstand a 4-6 hr testing and assessment... also, what should happen after that? do I just find out how brainless I've become and stuff bothers me? Or do they give you a path to success and recovery? Coping skills, etc? Does anyone have experience with neuropsychology? I am in Houston/The Woodlands (north) area... any suggestions?

I am not able to talk to anyone else except you guys too. No one understands...not even my husband. And frankly they either care too much or too little. I don't need to be babied, but I NEED HELP. I use my service dog for balance if in situations where I don't have someone I know to hang on to. No one understands (nor do I) how emotionally stressed I get. The other day I simply bathed, went to a dr. appt, and had therapy. I thought I was gonna faint. Hubby picked me up and I went home and slept for 2+ hours. WTH - I have never napped before this stroke and I feel the daily need for one now.
So, @hammondm99, I too find myself having huge issues in stores/venues that have a lot of fluorescent lighting. I think it's because if they are not covered they actually produce a strobe effect that my brain doesn't know how to process. I don't know... just a guess.
My therapist actually did an interesting test with me... told me to stand on a foam board - which of course was an epic fail... then she made me wrap up (swaddled) in a blanket and had me do the same thing - in utter amazement, I was able to stand.
Have you ever tried that?

I took Jeff swimming and it was amazing! I think it is worth trying anything that brings comfort, results or even a simple smile. Thanks for being here Wendy

A few months ago I had an MRI performed of my head at the request of my ENT. I had been referred to the ENT due to a significant loss of hearing in my left ear. What was found was a surprise. I had suffered a cerebellum infarct to my left cerebellum due to a dissection of the left vertebral artery. The stroke was not recent but after consulting with a doctor of the Inova Vascular and Vein Center and a Doctor of the Neurology Center of Fairfax, it appears that the stroke very likely occurred as a result of the ACDF surgery I had on June 7, 2017. After I woke up in the hospital room, I was at first able to walk unassisted however, later that night I began experiencing extreme vertigo, headache and projectile vomiting. This continued after I was discharged the next day. Once home, I was unable to walk unassisted, and fell and hit my head the first night home. My husband called the emergency number and was told not to worry it was just a reaction to the drugs. I was only able to walk with assistance. Gradually over the next few days I was able to start using a borrowed walker and gradually regained the ability to walk without assistance.

It was frightening to me that the stroke likely occurred while I was hospitalized. My General Practitioner told me that even if I had been taken to the Emergency room the first night I was home, they would have likely not diagnosed the stroke. Using a walker and a lot of support from my husband and friends I have recovered most of my physical abilities. I still get dizzy with certain motions. The vascular Dr. feels that this is probably due to the blood flow within the brain. I also have the Cerebellar tremor in my left side.

However, I have struggled to find Doctors that understand the Cerebellum. Most seem to still think it is only for body coordination. Nothing cognitive. I was finally able to schedule neurological testing at Johns Hopkins. This testing will occur the later half of March this year. I want to find a baseline of where I am now and perhaps be able to develop a plan for regaining some of what I have lost. Looking back over the last year and a half I can see changes in my cognition. My short term memory is shot. I search for words when having a conversation. Sometimes I forget a word even after using it 5 minutes before. Most of the time it is not like I have forgotten something, I just forgot how to access the information in my brain. I also have experienced depression.

I feel I dodged a cannon ball and didn't even know when it when it passed. Part of me is angry that the medical staff missed the signs. I spent much of the time since the stroke blaming myself for issues I was having. Hopefully, after the testing at Johns Hopkins I will have a solid plan for my recovery.

I had my stroke in June 2017. It was misdiagnosed as complications from the surgery I had just had. In October 2018 I had a head MRI, actually called an MRI Brain and IAC with and w/o contrast. This was ordered by my ENT to see if there were any reasons for my single sided hearing loss. This resulted in the MRI scanning the Cerebellum. Even after all this time, the Cerebellum showed the damage caused by the loss of blood to the brain.

So you can still get an MRI to see if there is damage to the cerebellum.

That is so awful. How is your recovery going? Yours is the kind of message that saves lives. I am interested in Your comment about the brain cell loss. I have made full recovery with no obvious deficits but I feel clumsy, dropping things a lot, and I tire so easily. My stroke was November 11, 2018. It was a left sided ischemic stroke.

My take is, if your body is telling you to nap, just do it. It took me a few months before I got past having to nap, I still do on Sunday if needed, my day to shut down!. I still make it a point to go to bed early so I can get a good 8 hours of uninterrupted sleep to be at my best the next day. If I don't get my sleep, my balance, speech, etc., is a little off. It was also exhausting for me to do a fraction of what I was able to do pre-stroke, took a lot of energy to get simple tasks done. If your stroke was anything like mine, things will improve, just takes time.

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.