Before I continue with my stroke story itself, I have a related update – the results of my CT angioscan two weeks ago (ugh, way too long since updating) and my appointment with my neurology doctor this past week. Blood flow in the brain is continuing to improve, but, the area where I bissected the artery still has no blood flow in it. The surrounding tissues have apparently compensated for this by contributing blood flow. But, it is disappointing and kind of scary that this area – the one where loss of blood flow gave me a stroke – still has no blood flow. The doc said it could heal in a month, in a year, years from now, or… never. But, she says it’s OK, the blood flow is adequate with all the compensatory blood flow that surrounding tissues are contributing. Still, for me, it’s kind of a mixed bag. And also, it’s kind of scary, as it makes me think there’s still a clot around that injury that could break free and float up into my brain and cause a regular type of stroke. I need to e-mail her and ask if that’s a risk. My next CT and follow up appointment will be in 3 months. I continue to take aspirin daily as a blood thinner.
I told her about gaining 10 lbs in 2 weeks after leaving the hospital and she agreed that that was something to take seriously. She did not, though, have any idea what it was, but speculated it could be a cortisol response to the stress. This was actually something I should have thought of, as I’ve come to believe that I have a stronger than average cortisol response. It’s starting to back down a little so I will give it another month and if it’s not resolved, I will connect back with her. So that’s the current medical landscape for this particular stroke survivor.
By the way, PSA here: did you know that stroke kills twice as many women as breast cancer? Basically if you experience, or see any one experience, anything that seems neurological like dizziness, slurred speech, inability to recall dates/people/events, facial droop, paralysis on one side – please call 911 immediately. I’m not sure it would have helped me, but also I was very lucky that my symptoms weren’t that strong.
So, the Part 1 of my stroke story is here. I forgot to mention in Part 1, though, overnight and in the morning I had several episodes of hiccups, coming out of nowhere. This was weird and pretty out of the ordinary for me. It turns out this is a symptom of the type of stroke I had, due to its location in the back of the brain; the classic stroke you’re familiar with occurs in the front of the brain, and doesn’t typically involve this symptom. A lot of my symptoms were not what we think of as typical stroke symptoms, which is part of why I wasn’t sure I needed help. The hospital’s ultimate answer on this: anything that’s unusual for YOU, and which may seem neurological in nature – call 911 and let a health care professional decide if you do or don’t need care. Don’t make this decision yourself.
So, after realizing I couldn’t swallow, which finally made me realize I needed medical care, I then waited over ninety minutes for my husband to arrive to the Namastay House, where I was staying. (This was my choice – now I see it was a mistake, I should have just called 911). While waiting, I checked my face for facial droop and now, alarmingly, I definitely saw some. This, along with being unable to swallow, scared me. Eventually my husband arrived and I was scattered and panicky. He was really spare and did not seem able, really, to process what was happening… at all. I showed him my facial droop and asked if he saw it too. He didn’t! This just made me angry. I clearly had a lot of facial droop on my right hand side. He said he couldn’t see it. This really frustrated me. I felt like I had to advocate myself, for my health, to the very person who should be advocating for me. Instead of getting that support, I was left feeling like I was having to fight him to recognize my problems. Maybe this was an overreaction. Maybe not. Maybe he’s just not at his best under stress and this type of scare.
Then, I was worried about insurance and getting care out of network, since we were out of state. I had my husband call the insurer to get advice and clearance on where to go and what to do. My husband was a little flabbergasted by this, but didn’t really express this. He calls the insurer and goes through some motions with them, and then tells me we just need to go to urgent care, it doesn’t matter if we’re in-network. I, meanwhile, don’t want to get stuck with some crazy bill because we haven’t done the right thing with insurance. We waste maybe 20 minutes doing this.
We got to the urgent care and told the intake receptionist my symptoms. She got a funny look on her face and didn’t ask us to write down anything, didn’t give us anything for intake, nothing like that. Instead, she got up from her chair and went and got someone else, to tell them what we had just told her. A nurse called us back. I told him what had happened, and it was difficult – I was hoarse, and talking was demanding. Having to repeat myself was tiring and a little annoying. After I had unloaded this second time, the nurse told us we needed to go to a hospital, that I needed a CAT scan, and that’s where I’d get it. My problems were beyond the scope of the services they offer in urgent care.
My husband now tells me he had thought I might need to go to the hospital. Oh.
So, we ask the nurse how time-sensitive it is – do we need to go to the local hospital, like NOW, that’s 10 minutes away, or is it medically reasonable to drive back to our home town, which is a little over an hour away. If we go home, and if I’m admitted to the hospital, I’ll be in-network, satisfying my concerns about cost, and satisfying my husband’s logistical concerns about having me being in a hospital, and the relative ease of seeing me, etc. The nurse tells us that it sounds like we’re outside the six-hour window for a stroke drug, so he thinks it’s OK for us to drive back to Greenville. So, we proceed to do this. (Later, my neurology nurse practitioner tells me this was TERRIBLE advice, that I needed to get to a hospital right away – this is standard protocol for strokes, I think which this nurse seems to have known I had.)
At this point, I start processing for the first time that I’m not just going to a hospital, but I actually may be *admitted* to the hospital. This thought had not yet occurred to me. I realize if we go right now, my husband will likely have to come back to Asheville and pick up, and not only that but pack up, all my stuff, which is sort of strewn around a shared house, not to mention making the long round-trip drive. Not knowing what my own conditions and demand would be, this didn’t sound great. I suggested that instead of going straight to the hospital, we go pack up my stuff together, quickly, and take it with us, to save him that trip. I can always just cart it right back if I get to go back to yoga teacher training, right? We realize this leaves my car, so I text my sister (who lives locally there) and ask if she can come get the key to take care of the car if needed.
We get back to the Namastay House and I stumble around packing up not just my clothes and books, but things like dumb food items. My priorities were clearly slightly off! We spend maybe 15 minutes doing this, then wait around a few minutes for my sister, who was supposed to be arriving any minute. She finally gets there and things had already been weird between us lately, and this was sort of an awkward and scary moment, me seeing myself as so unsteady and unbalanced and kind of fried, and her seeing me this way (I’m the older, by 10 years). She takes my car key and tells me her fiancé and she will be moving the car right away, and I feel grateful and taken care of. In terms of this detour back to Namastay House instead of going straight to a hospital, I guess we probably spend an extra 45 minutes total making this trip, packing up, etc., which I mention because looking back, I see I wasted a LOT of time getting care, even once I decided I needed it. I am still processing this aspect.
We drive to the hospital in our town, which happens to be in the building adjacent to where my husband works. He pulls up to the ER entrance and I stagger out of the car. I am really, truly staggering at this point, not just unsteady but really struggling to get to something to hold onto to be able to stand on my own two feet. I can barely walk the few steps from the car to the door. After I stand, everything is spinning, and I am outrageously dizzy. As I head for the entry door, I’m so off kilter that register some disbelief that I’m doing this on my own two feet, that no one is helping me! I reached the door and I grab the rails attached to it, and just hold on and catch my breath there for a minute. An older man is approaching the doors from the inside with a wheelchair, and he maneuvers it around and it looks like he is going to go out the door past me. To part of me, this makes sense: I’m getting around on my own two feet, that must be for someone who needs it. But part of me is outraged: don’t you see me?! Where’s my ***ing help? Where is my husband, anyway, why isn’t he helping me? The man with the wheel chair pauses next to me, and then I realize the wheel chair is for me. Oh, thank God. I feel like I’m barely standing, even with my death grip on the doors. He wheels me back to intake, and I climb on to a hospital gurney. They ask me my name, address, symptoms, etc., and I sigh and I’m annoyed and frustrated because talking is DIFFICULT. I wonder why my husband isn’t stepping in and talking for me? Not only that, the intake nurse often can’t hear me, or gets distracted by something else, and keeps asking me to repeat myself. This continued to happen over and over throughout the day – I probably had to tell my story and my symptoms to 10 or 12 people there – and it became just SO frustrating and annoying. It mystified me: I thought, “Can’t people hear and see how hard talking is for me?! Is this person REALLY not even trying to listen?” Even my husband continually asked me to repeat myself. Are you fucking kidding? It was kind of a big deal for me to get those words out the first time, at all!
Then, though, those few times he did try to help tell my story, when asked when and how “it” happened, he kept describing this happening in “a yoga class.” I had been saying (accurately) that I’d been in an intensive yoga teacher training for the prior two and a half weeks. Being “in a yoga class” sounds pretty different “an intensive teacher training lasting weeks”, which is what I was trying to get him to say. Even so, though, I couldn’t point to a specific event that happened in training, I could only report that I’d been doing yoga intensively for two and a half weeks and yes, had done more aggressive postures, and for much more time, than I usually do. But saying this happened to me “in a yoga class” was just way, way off the mark and really seemed to me to convey the wrong impression. Writing this up, though, I wonder if I over-reacted? I do think he should have expressed himself differently but I guess I was pretty agitated that day. Which may be understandable…
I also couldn’t swallow, remember, and that got pretty uncomfortable, with saliva pooling in my mouth. Before too long, they gave me a suction wand, like they use at the dentist. Everyone was lighthearted about it but later, they made a big deal about needing and having to use a suction wand, and that that evidenced what rough shape I was in. I guess being lighthearted about it at the time was to keep me from worrying, but honestly it made me think my situation was not that uncommon or that big of a deal.
In the ER I met with person after person after person, and had to keep retelling my story to each and every one of them. This got exhausting and frustrating, went on over several hours, and looking back I’m wondering why I wasn’t getting any actual medical care sooner. After a few hours, I think, I finally got a CT scan, and that got read pretty quickly and then we finally got somewhere: the ER doc came in and said the CT scan showed that I had bissected my right vertebral artery. I can’t remember if it was this doc or the neurosurgeon I saw later that told me that I had actually injured the artery in three different places. The ER doc told me the most common source of this injury to this artery was through chiropractic adjustment of the cervical spine (the cervical spine is basically the neck portion of the spine; crazily, I had just learned about the spine for the first time in yoga teacher training). He said this also sometimes happens to “little old ladies” at the hairdressers, hanging their heads over the shampoo bowls. So keep that in mind!
I had no idea, though, how I injured it! Not just once, but three different times, and once bad enough to bissect the artery!? I instantly recalled a class where we as we held a pose, we were looking up and back, and the teacher told us to look back one more ceiling tile, i.e., hyperextend our necks a little bit more. I remembered doing handstand prep and telling the teacher I felt weight on my neck, because I thought you weren’t supposed to; she replied, “you will.” Was that it? I recalled doing a shoulder stand and getting assistance to get higher into the shoulder stand – I was in more like half should stand on my own. And then I held there. Was that one of the injuries? I recalled doing plow pose, which I don’t usually do these days, and holding it for a bit. We did fish pose one day, and I held that for a while, and I really haven’t done that asana much in the past year. Was that it? Who knows?
I met with a nurse practitioner as one of this stream of people and I think it was her that told me that, as a result of the injuries to the vertebral artery, I had had a PICA stroke. She told me this was an unusual type of stroke, with different symptoms than a “classic” stroke because the PICA artery is bilateral, i.e., meaning it operates on both sides of the body, so you don’t have the more classic stroke symptom of arm or leg weakness on just one side of the body. Also, the location of the PICA stroke being on the back (posterior) of the brain was different than a classic stroke, which apparently happens in the front of the brain. This means it causes different symptoms, and this was why the F-A-S-T test didn’t really pick up the stroke symptoms, and when I googled PICA stroke later I found an article mentioning how the classic F-A-S-T stroke test just isn’t very “sensitive” to detecting a PICA stroke. Essentially, it requires some expertise and observation of the symptoms by a health care professional with experience with this type of stroke. Also apparently one symptom of the PICA stroke is the hiccups! And also the nausea and vomiting, which I had had both in my initial “event” and overnight.
I had arrived at the ER around 2 pm, and finally ended up getting transfer orders to get admitted and moved into the hospital at a little after 7:00. It was a long five-plus hours, with telling and re-telling my story, repeating myself, correcting my husband, being unable to swallow, etc. But between all these things, there was also a lot of down time, a lot of waiting, so I spent a lot of time on my cell phone checking Facebook, playing games, looking at Instagram, etc. It was kind of a surreal combination of the completely mundane and the mind-bendingly novel.
I wasn’t just admitted to the hospital then, I was admitted to the Neurology and Stroke ICU. This was all kind of freaking me out. On the one hand, I’m my normal self checking Facebook, but on the other, I can’t swallow, and when I stand up, I can’t really walk. It really was a strange and disorienting combination of completely normal parts of life and completely abnormal new activities, peppered all along with people regularly looking at me with horror. I couldn’t understand. Also, I hadn’t slept at all the night before (what with the dizziness, nausea, vomiting, hiccuping, etc.) and this added to my low mood and exhaustion.
Sometime around the time I was being moved to the ICU, I began to be able to swallow again. I hadn’t eaten in about 24 hours and I was hungry! I asked if I could get something to eat and was initially told yes, but then was told no by the neurology doc or nurse practitioner. They needed to see me first. Ugh!
I met with the doctor and nurse practitioner a litte later and they “authorized” a milkshake, so my husband went out to McDonald’s and got me one. It was great, I was really hungry and it hit the spot, and it was also (I won’t lie) a comfort food on a very uncomfortable day. Later I looked up the nutrition facts and learned that that large strawberry shake has 130 grams of carbs in it. I would NEVER have guessed the carb count was so high! Lesson learned. If faced with getting a milkshake again, I’ll definitely get a smaller one. It was the only thing I ate all day, but still, that kind of sugar level is not what I want for myself, especially in a state of distress, meaning my body needs NUTRIENTS not garbage, which is what sugar is. If only I’d had some protein powder to toss in, then it might have been redeemed a tiny amount — there’s only 11 gram of protein in this shake, which to me is a shameful, tiny speck of protein compared to the utterly whopping level of carbs. In case you occasionally indulge in this, be aware. I know I will be.