A smoother road ahead

IMG_0034This 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.”

Me: “Yup.”

Dr: “It was a bleed.”

Me: “Yup.”

Dr: “It was in the cerebellum.”

Me: “Yup.”

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!






The road is long

img_1634This series of blogs isn’t meant to elicit sympathy but hopefully to inform and create awareness. Thank you in advance for your thoughts.

I haven’t blogged in a while because, well, I’ve been healing. I’m back to work three mornings a week, up from two, and hoping to add more days as I move along. I am finding that the days I work in the morning, I’m pretty wiped for the rest of the day. The next day, I tend to sleep in late and not have much ambition. It’s frustrating for someone like me whose feet normally hits the floor by 7am, on my days off, and who is on the go from that moment until my head hits the pillow around 10 or 11pm.

I still haven’t had my follow-up appointment with the neurologist, even though the discharge papers from the hospital advised her office would be in touch within six weeks. Because I have no patience, when six weeks came and went, I called the office of the neurologist. It turns out the appointment isn’t made by her office, it’s through the stroke clinic, and they call me, although she sees me there.

As I’ve mentioned, I’m somewhat unique in that I didn’t need any after care, and as a result, I haven’t seen therapists and such who might be able to answer questions that have come up. My main questions were what could, or couldn’t, I take for headaches and for the arthritic pain in my knees. I’d had to postpone the scheduled replacement of my right knee due to the stroke and recent damp weather was not treating me very well. I’d continued to ‘grin and bear it’ but, not knowing when I’d see the neurologist, I really just wanted some direction. So, me being me, I made an appointment with my family doctor. I knew he had at least two reports from the multiple doctors I saw, or who saw me, while I was in the hospital, so it was my hope that he’d be able to answer these basic questions for me.

I arrived at my appointment, with my list of questions and Post-it notes stuck throughout the book on strokes the hospital had sent me home with . Nice of them to send the book but it took me over a month to even open it as my eyes couldn’t focus enough, and when they did, my brain didn’t want to retain the information. My doctor’s nurse mentioned he had the results of my last CT scan, so that’s what I opened the conversation with. He said it showed I had a stroke (yup), it was a bleed (yup), in the cerebellum section of my brain (yup) and there was also a brain edema (what?). Turns out, when the stroke happened, the trauma caused swelling on my brain. Gee….it would have been nice if someone had told me. This could have been why I had immediate and overwhelming nausea my first few weeks home when I made any movements to the left. The CT scan showed that the swelling had reduced greatly, this was done six weeks after I was released from the hospital, but there was still a fair bit of blood pooled from the bleed. I guess this takes quite some time to be reabsorbed but the swelling was what they were most concerned about. Uh…yeah! Me too!

Those who know me know I’ll be having quite the discussion with the neurologist, when I finally get to see her. I saw her in the hospital for a few minutes, but I spoke more with the other three doctors who took care of me than I did her. On the day she saw me, I believe it was the day I was released, she only spoke with me for a couple of minutes; basically to say she saw the MRI and MRA and I would be going home when the other doctor had completed the paperwork. Ah yes, the paperwork. I’ll be talking to her about that. The paperwork advised I would hear from her office within six weeks, as mentioned, it’s not her office that contacts me, nor is it within six weeks. We are now on Week 9, and still no call. Really, let’s be more realistic with the information provided!

I’ll also be asking her about the nystagmus. This is a symptom I had from the stroke, one that has never been told to me. The doctor who had me admitted showed the nurse how my eyes were rapidly moving from side to side. I paid attention and then did the research myself on what it was. I have not idea if I still have some of the nystagmus, although my vision is much better than it was in hospital. Nor do I know if I should have my eyes retested, or go with the prescription I’d received in May but hadn’t had filled yet.

We have amazing health care in Canada, compared to a lot of countries, but it is being stretched to its limits. A patient shouldn’t have to do their own research and look for their own answer; they shouldn’t have to wait months for follow-ups with a specialist. Nine weeks and that’s still waiting for the phone call, not the appointment itself!

I’m truly thankful my stroke wasn’t worse and that I didn’t need any after care, but the fact it wasn’t has left me extremely frustrated with finding my own answers and understanding my own healing process.