Cerebellar Stroke - experience/treatment/recovery

Nothing physical. A month ago I went through Cognitive testing at Johns Hopkins. It was interesting. They recommended I go through a sleep study, and treatment for depression. I have completed the study, but have not yet gotten the results.

If it were me, @bille, I would ask specifically about what type of cognitive/physical and/or occupational therapy might be helpful. The treatment for depression is a good idea, especially where brain damage has occurred, however, it is important to try to maintain these other systems in the body that were affected by the stroke.

Will you give that some thought?

Yes I will. Cognitively, I see things that have slipped. However I still tested very well. As they said at the outset, the tests could not show what I lost, just where I am now. I now have a baseline to test against in the future should I need it. My Mom had some form of undiagnosed dementia before she died. At least I have a baseline.

I am trying to take things with one focus at a time. For the longest time it seemed I had a different Specialist every day. My GP and me can then take the next steps for depression, i.e. drugs/counseling. I also need to see a urologist about incontinence.

So one day/step at a time.

@bille
This sounds like a good approach. Especially "one focus at a time."

Ya know, I'm really beginning to hate all the doctors and therapists involved in my care, especially since my stroke and aneurysm. Well, it's really not the doctors I hate. It's the divided and subdivided care. I miss the days when I went in, saw my primary, once or twice a year, she ordered my bloodwork, called with results. Bam. Done for another year. Now, every specialist I see has my med list wrong, or not current, insists on weighing me, even if i was there the week before, wants follow up visits and tests run. Then follow up visit to find out test results.

Many things can be monitored by my primary. Tests can be ordered by my primary, information passed on. Im going in so many different directions. I know I should be grateful, but instead I find myself very annoyed. I realize my needs are more complicated, but I still prefer that the specialist visits be kept to bare minimum. Am I just sour grapes??? How much of this is really necessary, how much is about liability.... and is my primary care doc being squeezed out of the loop? I feel like i'm being outsourced. There has always been specialists, I get that, but geesh, there's a specialist for every part of my body. Just wish I had a doctor to take care of all of me, except when truly necessary.

There. My rant is over. I feel better. Anyone one else feel like me?

@jmjlove
I absolutely feel the same way. Only it sounds like you like your primary. The docs I loved and trusted are gone to retirement or to further their careers. Bright Wings

@jmjlove- Good morning. We haven't talked yet but I'm right there with you on this one. I'm a mentor for Mayo Connect, mostly in lung diseases and I also support the anxiety and depression group. I'm a 22 year lung cancer survivor and 2 years ago I had a few small mini strokes that effected my right eye. I had a stent put in and everything is fine now. I just had my annual testing and things look open and smooth flowing. Two years ago I also had my 4th lung cancer and between the two I was traveling to MGH (Boston) almost once a month and was bouncing around like you. Last year I was also followed very closely because I also needed to have a collapsed pulmonary artery repaired that had been nicked in my second lobectomy ten years prior. Finally in February of this year I was given a six month reprieve between CT scans for my lungs but still this doesn't account for the specialists at home.
I agree that things need to calm down with so many specialists but on the other hand isn't it great that science has improved techniques and treatments so well? When my artery collapsed my lung surgeon sent me to a pulmonary radiologist and he came up with a personalized remedy to fix the artery. My surgeon is now teaching that to his students. I did wind up having a stent placed and my breathing hasn't been this easy in a long time.
I ask some of my doctors if I can have any of the treatments through my pcp but some of them are too technical. Maybe you can ask for this too?

@merry....thank you for a thoughtful reply to this whiner. Sounds like the specialists involved in your care have served you well. Truly glad for you. I guess I really am just sour grapes. I too have issues, but I do long for the days when my Healthcare was simple, uncomplicated and managed, for the most part, by my primary care doc. God bless.

@brightwings...Lost my female primary due to retirement. Loved her, miss her. Now I have a male caregiver who is just great and has taken over treating me, and my pain, which keeps me out of pain management and yet another doctor. He is very modest in approach to pain meds, but has no attitude about me or my needs. He recognizes I am a normal woman, with a healthy happy lifestyle, who just happens to have constant, unfixable conditions. And I'm grateful. Yep. **she smiles**

@jmjlove
Thank you for your smile...
I lost my wonderful old male doc to retirement. He hung on working and helping folks finally and decided to live life...God bless that man.
Thank your doc for being careful. My foot doc put me thru 6 foot surgeries in 2 years. I ended up addicted to hydrocodone.
It took 2 years to get over the psychological addiction...and I did it. Hard as it was.
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A handy tool for body pain, muscles or skeletal, get an order for lidocaine cream. Then apply it to the areas that hurt. Numbs it right up. Add a small piece of plastic bag over the ointment. It makes the lidocaine cream sink in and stay there instead of rubbing off on your sock.
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Be aware the pain is still there, you just don't feel it...
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Too much physical pain gets stored in the body...
And will cause havoc later.
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Ok, headed to Silver Dollar City with my family tomorrow. Everyone is home with their mothers and big parks like this are almost empty. Its so much fun....
Picture me riding the big rides over and over tomorrow, free as the wind of this ailing body.
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Cuz sometimes we just have have to let go of it all and go have some fun.
Brightwings

@brightwings....about pain med. I get a script for each month, lasts around 17-20 days. Then I go 10 days without, so I never have to have mgs bumped up. Every month they work. I have 10 days med free to reset my body. During that time...well...it's hard, but worth the break. I've had therapy galore, have a tens unit, feels good in the moment, but nothing lasting. Have lidocaine stick on patches, not strong enough or go deep enough. I've never been one to expect no pain in my life. Pain happens. Made peace with that a long time ago. Tolerated it. Exercised through it. Powered through. Now I am ready for relief. I don't want my meds controlling me. So I chose the ten day break. Won't try and tell ya my body hasn't developed dependency. It has and I am reminded of that during the first 6 of my ten days off. But, without the help, holding my grandkids, going places with hubby, doing my own shopping...none of that gets done by me due to pain. At this point, I don't care that my pain is masked. I care more that I get to participate in life, rather than just being a bystander. Correct attitude? Maybe not. Is it a healthy way to deal with the pain? No, but is a life spent sedentary good for me? No. I made my choice. I want to move, keep busy at both work and play.

Truly, I am glad for all who function well without the double edge sword pills. Good for you. Oh! Happy Mothers Day!!!!
Sounds like you're gonna have a great time. Yahoo!