Cerebellar stroke experience, treatment, recovery - want to dialogue

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?

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

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.

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?

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.

@bille Thanks for sharing your experience! Everyone's input is what makes Connect a great place to learn and gain helpful information.

How are you feeling now, @bille? Have you had any post-stroke physical and/or cognitive therapy to help with these symptoms?

I hope you do not mind if I barge in here. I had a left cerebellar stroke almost two years ago. I didn't know it at the time. Mine was caused by a left vertebral artery dissection that occurred during cervical fusion, vertebrae c4-c5-c6. I had extreme vertigo and a terrible headache. However, after about a week of using a walker and cane, the balance issues started to dissipate. Still sometimes I tend to veer to the left, and stairs are still something I take my time on. I use hand rails a lot more than I did before the surgery. For me, the initial problems were all blamed on the surgery and the drugs since they did not know I had had a stroke. It wasn't until about 1 ½ years after that I had an MRI that caught it. I am of the opinion that at this point I have what I have. One of my neurologists said the occasional dizziness I get is probably due to the temporary lack of blood to the cerebellum and probably will never go away. I also tend to move a bit slower than I used to.

Anyway, I hope my experience helps.

Yes contact me. I have questions about balance.

Thanks for sharing, I had the exact experience. It has been 7 months now and I am greatful also. I have days of very unstable balance. I try balance exercises, and such. I was wondering if anyone else suffered a left side no reason stroke and how long the imbalances last?

I usually say to an unsuspecting person, I promise I won't ask you to do anything I have not done...
This is truth...however, I do neglect to say I have tried or done just about any and every trick to heal...why???
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Cuz I was worth it! You are too.
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THE ROAD TO HEALING IS DIFFICULT
AND IT IS SO WORTH THE TRIP.
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Bright Wings