This series of blogs isn’t meant to elicit sympathy but hopefully to inform and create awareness. Thank you in advance for your thoughts.
Well, it’s been 14 weeks since what I’ve come to call ‘the incident’. I finally got in to see the neurologist for my follow-up appointment, mind you, getting the appointment itself was an experience.
The hospital discharge papers said the office of the neurologist would contact me within six weeks, for an appointment. When six weeks came, then seven weeks, I called the neurologist’s office myself. They advised that the call comes from the Stroke Prevention Clinic, and the doctor sees me there. They also advised it could be another 4-6 weeks before I heard from them. If I were making an appointment with the neurologist’s office directly – well they were booking in 2017.
OK, I get it. They have done all of their tests and have a handle on what you’re dealing with, however, I didn’t. I was extremely lucky in that I didn’t need any therapy after leaving the hospital. While that was a good thing, it also left me very much at disadvantage. Those receiving therapy or aftercare of any type, have people who deal with stroke patients all of the time. The patient, or their caregiver if they are incapacitated in any way, are able to ask questions as they arise. I didn’t have that opportunity. I was home alone during the week, with my partner arriving Friday evening and leaving Sunday. I took care of myself, slept a lot, tried to do a bit more each day, and basically let my body heal itself. Impatiently, I might add, but I got there.
A month after I was discharged, I was finally able to focus and retain the information in the spiral bound booklet they gave me on recovery. While it explained some things, like the depression I felt was starting (to be expected in situations like this), it also resulted in questions coming to mind….and no-one to ask for answers. Upon hearing it might be another 4-6 weeks before I got the call, and possibly longer for the appointment itself, I called my family doctor. I’d seen him three weeks after I was discharged but, at that time, my mind really hadn’t gotten to the point where it could think of questions I might have. I figured he’d be able to answer the basics for me…and that’s all I needed right now.
The nurse in his office actually gave me my opening for why I was there. As she accompanied me to an exam room, she asked if I was there to talk to him about the results of my follow-up six week CT scan. Sure! Yeah, that’s why I was there. I made myself comfortable and waited for him to walk in. The conversation went something like this:
Me: “So I understand you have the results of my CT scan.”
Dr: “Yes I do, and things look good. It shows you had stoke.”
Dr: “It was a bleed.”
Dr: “It was in the cerebellum.”
Dr: “The bleed has reduced a bit and the edema is greatly reduced. That’s what they were really concerned with.”
Me: “What’s an edema?”
Dr: “Swelling…of the brain.”
Me: “I had swelling of my brain and no-one bothered to tell me? Could that have caused the stroke?”
Dr: “No. The swelling was a result of the stroke, and it’s pretty much gone. The bleed itself will take quite a while to absorb.”
Well, the edema explained a few things, for me anyway. It explained why, when I first returned home and took a quick step, or turned my head, or attempted to lay down, all on my left side, I was immediately overwhelmed with nausea and would…well, I’d do what you do when you’re extremely nauseous, and I’d do it immediately. It was nice to finally have an answer for this, rather than my visualization of blood sloshing around where it shouldn’t be and causing this to happen. Sorry for the graphic description there but I’m a visual person and that what I pictured happening. I would visualize a puddle on the back of my brain and try to lay down or move so as not to put too many ripples on the puddle…I sure didn’t want waves!
My main question for my doctor was regarding pain medications. I’d been advised to take a specific over-the-counter medication for the arthritic pain in my knees. Could I still do that? If I had a headache, what should I take? I’d gone many weeks without anything, and actually had no knee pain during recovery. I knew I was really getting better when the knee pain returned. My brain had stopped having to focus totally on its own repair, and could focus on other areas of interest.
I was advised to stop any over the counter pain medication other than Tylenol products. For my specific type of stroke, a bleed, they didn’t want to me ever take anything that could thin my blood. Most times they want you taking Aspirin etc., specifically because it thins blood and allows it to move past partial blockages etc. In my case, they didn’t want a bleed to run more freely, should this happen again.
Well, I try to keep my posting time to half-an-hour so, the visit to the neurologist will have to wait until next time. Hey, I had to wait…you can too!