Cerebellar stroke experience, treatment, recovery - want to dialogue

Hello @bille

I appreciate your contributions to our discussions on stroke. You must be very grateful that you have a correct diagnosis now and most importantly that you have a supportive family behind you. There are all types of therapies available (physical, occupational as well as cognitive) perhaps John Hopkins will be able to put you in touch of some of these therapies.

Have you had any of these therapies yet? When is your appointment at John Hopkins?

I had surgery to fuse C4-C5-C6. That night while I was hospitalized was the night I had the stroke. Everyone blamed the symptoms on my surgery and a reaction to the drugs. It was a year and a half later that an MRI done at the request of my ENT showed the stroke damage caused by an vertibral artery dissection at the surgery site.

Hello @hammondm99
I appreciate your update. It is so helpful to know how a positive attitude and working hard at recovery can make such a difference. You've accomplished a lot since your stroke and I applaud your victories.
I am interested in what you described as "brain flooding." Is that a typical post-stroke symptom? Do you still have that symptom when you are in a crowded or noisy place?

It's been a while since I posted, so I wanted to provide an update for those of you that may be new to this stroke thing and are wondering how others have progressed. I had my Cerebellar Infarct on January 6, 2018 at the age of 56, my cardiologist thinks it was due to an AFIB episode I had. I am a generally healthy and active guy, ran 3 marathons, 1 triathlon, 1/2 marathons, 100 mile bike rides through my early 50s. The stroke affected my right arm and leg, After the stroke, I was dealing with what I assumed was brain flooding when going to "busy" stores, in the machine room at work, walking down tight hallways, basically places where there was a lot going on around me, I would get anxious and couldn't wait to get out. I am right handed and struggled with the basic things, brushing my teeth, combing my hair, writing, holding a pen, using a keyboard and mouse, anything that required coordination with my right hand. I started playing guitar in my teens and could no longer hold a pick or keep the beat when strumming. My right leg felt heavy, stairs were a challenge. My balance was a bit off, though I was able to drive my car within a few weeks of my stroke and was back on my motorcycle once the weather allowed. I found myself at times putting the front brake on my motorcycle heavier than normal, but not too much, had to really think when using my right hand on the wheel in my car. I definitely had that "off" feeling, was worse towards the end of the work week for me, better after shutting down for the weekend. I did in home PT pretty heavily for 7 or 8 months and every day I saw improvement.

14 months later, I would say I am 95% of the way back to where I was pre-stroke. I still do a very limited amount of formal PT, but primarily keep myself busy daily doing things that require concentration, balance and coordination. I am somewhat of a mechanical guy and have had no issue working on cars, my motorcycle, my home, etc. I play my guitar almost daily and am very close to where I was before the stroke, expect to be 100% in due time as long as I keep practicing. I took a big step forward with my playing maybe 2 months ago, it just got much easier to play, my muscles were all of a sudden much looser. Brain flooding is almost non-existent these days, that seems to have subsided greatly in the past month. I still have a little bit of a stiff right leg when I get up in the morning. The stiffness mostly subsides once I start moving around, but I do feel my leg getting a little heavy by the end of the work week. My head is also a little cloudy by the end of my work day, which is usually 10 hours, clear in the morning. My speech slurs a little also when I get tired. People around me don't notice, but I do.

My cardiologist appointments are annual now. During my last visit, the doctor noticed I was having PACs occasionally and mentioned this could be the precursor of an AFIB episode. My PACs started lasting upwards of 20 minutes, so he put me on Metaprolol to make them less intense. I still get PACs on occasion, but they are less frequent and they only last a minute or so.

I know each person is different, but there is hope for recovery. I hope everyone out there has the same success that I have had. It took a lot of work for me, no cutting corners to figure out easier ways to do things, but the work is paying off.

I have mentioned this before as a reply, but I tried Propranolol about a year after my stroke. My stroke was in March of 2011. That 1st year I had headaches everyday, as soon as I opened my eyes in am. Had sort of an emergency visit in 2012, to a clinic I had never been to before and the Doctor recommended trying that drug, worked for my blood pressure and the headaches. Was amazing how much it helped me about a day after I started to take it. Have been on it since 2012 and it helped alot, they are not totally gone, but much better than it was, although in the last month or so again I have been getting more headaches again and they are worse (like what I had the 1st year after the stroke). Sometimes taking Advil in addition to Propranolol helps, but not always.
I also have that feeling of not quite being there so to speak, just kinda in a daze, sort of, can function and do my work, but have to try to focus on everything so much more than before. For me it is really hard to honestly say I enjoy much of anything, I personally think it is from having to focus so much on what used to be, simple enjoyable tasks. Also it might help to have a job that is NOT stressful, if there is such a thing.
One more note, I have a fusion between C-5 and C-6, some of the headaches could be from that also, but again I don't think there is a fix. I personally think a tiny clot formed in that area and moved to the Cerebellum. I say that because we never did figure out a cause or where the clot came from.
It would be interesting to know how many of us, still do not have a diagnosis. Would it not be interesting if the doctors surveyed survivors with the same kind of stroke and asked many of the questions we are all talking about, to see what is most common among the most people and then at least try to come up with a workable fix or steer us in a direction that might help us help each other. Remember time and money are a big part of everything. Many times nothing gets done because of those 2 items.
All that being said, I do believe that some days just suck more than others, but we are the one effected and it is still up to us to keep trying and never give up!! Keep the faith!

I do feel like that. I wonder if it because the way the brain is recording the activities. For me, there are times when I can't find a word or remember if we did something. Usually it is not that I can't remember, I just can't remember where my brain stored it. I do think I am depressed. It is funny, I told my GP that I was depressed before I knew I had experienced a stroke.

I am going to Johns Hopkins in a couple of weeks for Neuro-psych testing. I am really hoping that I will be able to get some idea of what in my brain is not working as it should and what, if anything I can do to improve it, or just as you said, accept that this is the new me.

I talk to my husband, and he can't be more supportive. He has been wonderful in all of this. But I think that everyone looks at the physical side and do not see the typical indications of a stroke so they have difficulties in understanding that I see things every day, that just don't work they way they used to. I feel like my brain aged a decade overnight.

Bille, I still feel like that, too. It's been almost 3 years now. I may have to accept this is the new me. I can only describe it as a surreal world. Still experience joy, sadness, still have enthusiasm, but it all feels less intense, less real. Truly don't feel depressed in as far as a medical/psychological sense goes. Just feel oppressed, like there is a weighted veil between me and everyone else. Intellectually I know nothing has changed. My husband and children love me. The grandkids are still adorable, still make me laugh, still thrill me....but somehow it is all.....less. I am the only thing that has changed.

Do you feel this way? It's a bit disconcerting to me. I used to jump in with both feet. Now I dip a toe in and consider if I'm up to it....whatever it is. My brain wasn't damaged in a place that affects emotions, but my emotional make up is altered. I am very grateful to be here for my loved ones.My stroke was large, damage was great. My comeback was good. Deficits manageable, for the most part, but living with this surreal feeling is probably my greatest challenge and no amount of work on my part can correct this.

The headaches are impossible to control and hard to endure. They taint everything I do. Not exactly wreck all pleasure, but put a slight pall on everything. Hard to slog through. How do others handle these headaches?

I still sometimes feel like I am looking out at things going on rather than really experiencing them 1st hand. It is weird.

I used ibuprofen up until last week when my neurologist put me on topamax.

How is your recovery going? Where you able to swallow right after your stroke? What helped with your dizziness and nausea ?
Thank you
My mom just had a stroke ... it is difficult to watch the struggle.
I am sorry that you had to go through having one.