Cerebellar stroke experience, treatment, recovery - want to dialogue

Hello, it’s been a while since I visited this site and have just noticed your entry. I had the same symptoms as you experienced at the time of the stroke and reached one year after my stroke on Halloween. I still experience severe tiredness, occasionally feel a little off balance and just feel a “ bit off “ on occasions which often last a week or so. I consider myself so lucky to have survived without any outward symptoms and yes, I get a little annoyed when people expect my to do things as if nothing has happened. Supermarkets remain difficult for me to visit, I get what I need and get out. Driving, I’m fine and confident I’m safe. The main reason I got in touch was the PFO. I had the same, a PFO and, in my case a ASD and had them closed under four months ago. Surgeon bagged them both with the same amplatzer device. I feel no pain at all, I feel no difference inside but I am hugely pleased that I have had this route for blood clots reaching my brain firmly closed off. In my opinion, if you are suitable for this procedure, grab it with both hands would be my advice. It’s reassuring to know its there and working and the heart specialist has kept my on clopidogrel as well, as he says, it’s a belt and braces job. Stroke team at the local hospital have now discharged me from their care and Im grateful for a second chance given that it could have been a lot worse. I still marvel at this amazing PFO closure procedure. I sincerely hope all goes well for you whatever you decide.

I understand your frustration, I have been "passed around like a Hot Potato" since I had what I was told was a Stroke in 2012. I lost the use of my Right side. (I have been a paralegal for over 40 years (real estate/probate law), I can no longer type, fine motor skill loss, cannot walk without cane, impaired Speech/Hearing.) My Primary Care Doctor says I have several things wrong with me (but he doesn't tell me what they are???) He just sends me to more and more doctors. My Employer removed my Existing Work Accommodations so I could no longer do my job (right before my 65th birthday) so now. I am also dealing with having to live on a 1/3 of my prior income and dealing with being passed around like a hot potato. My daughter's Primary Care tells her to "Go to the Emergency Room" when she has a problem, then the Emergency Room Doctor says "Go see your Primary Care." I think this is a bad joke! But doctors are making lots of money. Patients have very little recourse from my observations! Doctors have financial interest in Insurance Companies - that is severe problem for patient receiving quality care.

Thanks... and yes, I went through the Neuropsych eval. But I do not know the outcome yet. I am in NW Houston area. I might have ruined the test results they said because I couldn't complete in one day. I was fine when I entered the building in the morning and with the first round of testing I could hardly stand up and move...my balance was so off. I only lasted till about 2pm and I was so overwhelmed I just couldn't stay awake/finish. My neuro actually thinks it might all be due to lack of oxygen...I already have a cpap machine, but he wants me to do yet another sleep test. Mind you, my first sleep test was already done post-stroke.
Thanks so much for understanding...we'll see what they say.

I totally sympathize with you. I believe outside of motor control issues, most Doctors have very little knowledge of the impacts Cerebellar strokes have. I finally went to Johns Hopkins for a "Neuropsychological Evaluation". It was a standardized comprehensive battery of tests checking memory, logic, et al. Besides testing me, they also interviewed my husband. At the beginning they stressed that they would not be able to tell me what I lost, but rather could ascertain my neurologic health compared to my peers.

They identified a number of areas, primarily they recommended a sleep study, and treatment for depression. The sleep study was negative, but the treatment for depression has made a huge difference in the quality of my life.

The other fantastic thing coming out of this is I now have a solid and comprehensive benchmark. This testing is very standardized so in the future I can be tested against my own benchmarks. That is comforting to know.

I don't know where you live but you or your Doctor should be able to find a facility that can perform the testing on you. Not any facility can do this since it requires specific training on how to give the tests.

I hope this helps.

I am having trouble finding a good doctor that understands my loss of mental capacities. Is there a particular search or way to find a good neurologist in my area that understands about a cerebellar stroke. It's pathetic but I feel like most neurologists barely know anything about them ... do I just need to call around, or what??? cause I am sure their staff doesn't get it and will just say 'yes'. My doctor since I had the stroke doesn't even understand why I am still having issues...physically I am getting better and only suffer when overstimulated - but he doesn't even understand that... and he thinks I should be fine mentally and that it doesn't make sense...really, you idiot - sorry, but he is worthless.

Thanks - God bless you.

I notice the very tip of my tongue goes numb or won’t move into the correct position to pronounce a word at the end of the day. We get tired, our brains do also.
We are never going to be 100%.
I do shoot for the moon and take what I can get. It’s enough, but I never give up,
Listen to Andre Richelieu on you tube. Be proactive in giving yourself endorphins. Study endorphins also. It’s how I got to be this person after so much abuse and medical problems.

Bah I say. Go to u tube. Look up healing Hz.
Play this music in the background. Day and night.
You WILL BE IN CHARGE AGAIN.
If I listened to docs, I would be in bed for the rest of my life.
Google healing Hz. Then read a bunch of articles and trust your gut as to which one to listen to.
It works if you work it.

Yes, you are speaking about my symptoms now.
I’m great in the am and then as I go thru my day, my brain just can’t function at its normal page.
It gets better. Maybe because it gets tired???
I am using the thc/cbd recipe I posted and my, the results are tremendous.
It’s taking away my anxiety also.
No one would ever be able to tell I had a stroke unless I told them. Cuz I am that good now.

I had a stoke in May 2009 and if you met me for the first time, you wouldn't realize that 30 % of my cerebellum was damaged. The most challenging deficit that I have ( balance is ok on the flat, word recall is challenging sometimes and my speech goes off when tired) is the need to have, every single day, a sleep. I know when I need to lie down as I get a mild pressure headache, my speech starts to slur and I am tired. After 2-3 hours sleep, I wake up and feel just fine again. Does anyone else have this issue? I have been through two sleep studies and also seen a sleep neurologist at Mass General and was told that it may be as a result of where the stroke was and can take many years for this to go away. Thanks