Yesterday, I wrote about the cerebellar stroke I had ten years ago, when I was 47 years old, caused by a right vertebral artery dissection.

Today I want to talk about the recovery process. It was much longer and much stranger than I expected. And both cerebellar strokes and vertebral artery dissections are rare. There isn’t much out there about recovering from either one, except for big obvious disabilities. So I want to put my own experience out there.

I stayed in the hospital ten days (after being told they’d keep me overnight!) in order to get the right levels of blood thinner in my system. They had me on IV Heparin and were transitioning me to Coumadin. I learned that when you’re on Coumadin, you have to get your blood checked often (for me it was usually once a week), because either too thin or too thick can be life threatening. I was also told not to make sudden changes in the amount of green vegetables I ate, or other Vitamin K-containing foods, because that would change the amount of Coumadin I needed.

In the hospital, they had me walking around now and then. But I was in the telemetry ward hooked up to machines, so that was a production. I was also checked out by a physical therapist, an occupational therapist, and a neurologist and they concluded I didn’t have any permanent disability and didn’t need additional services. So I thought I could bounce back.

But I basically had three things that needed to heal: My cerebellar stroke, my vertebral artery dissection, and my general fitness level. And part of the problem with recovery was I didn’t know which symptom was from which thing or combination of things.

General Fitness Level

I liked to tell people that I didn’t have the stroke because my fitness level was bad, but having the stroke destroyed my fitness level. I was lying around in the hospital for ten days, and that can’t have been good for me.

But come to think of it, I’ve certainly had headaches in the past that lasted more than ten days where I didn’t do much — but was never as wiped out as I was after my stroke. I now suspect that the stroke itself made me woozy, light-headed, and tired when I stood up and walked around. After all, your cerebellum is your center of balance. I think my brain had to make some new connections simply to easily walk around in the world. Sure, I could walk a straight line when the neurologist asked me to, but being up and around for more than an hour or so had me wanting to go straight back to bed.

In my blog post from August 23, a month after the stroke, I wrote this:

However, the one symptom that’s lingering is something of a problem: If I stand for more than a few minutes, I feel “woozy” — not exactly dizzy, but headachy, weak, and faint. Sitting for awhile seems to relieve it, and lying down definitely does. I haven’t yet gotten in to see a neurologist (which is a whole other annoying story that I should skip!), but I suspect that’s a leftover from my cerebellar stroke. After all, when I stand my brain needs new connections to keep my balance. I tried to step over the baby pen in the nursery on Sunday, and almost fell over. I’ve never been terribly graceful, but now I especially need to take care!

(I stopped working in the church nursery for a while after that, because that incident scared me — I was holding a baby when I almost fell over.)

I was actually a little bit lucky about the timing at the beginning. I had previously requested time off in September to go to my brother Robert’s wedding in Oregon (and to see ALL of my twelve brothers and sisters!), and even though I’d used up all my sick leave, and was accepting donated leave, they let me use my annual leave for this instead of making me use it on sick leave. But also good was that I was able to mostly take it easy and take naps every day on that trip — thus getting much needed healing time. If I had been home, I was tired of being sick, and would have tried to go to work.

It was something like six months before I had a pay period where I worked the entire 80 hours. I used a LOT of donated leave, and was never told who was donating the leave. I am oh so thankful to my generous coworkers!

I did, eventually, overcome this. But it wasn’t nearly as simple as I thought it would be and took much, much longer than I thought it should. For a long time, even when I was back to work full-time, it was a strain to walk around the library “sweeping” for books left around, because that was just too much time walking.

However, two years later in 2013, I bought a condo by a lake and started getting up early to go walking, using a walking program from the book Walk Your Butt Off. After completing that program, I really did feel like my fitness level was back to my normal — but it really did take two years.

Could I have just done the walking program sooner? Maybe. But I physically could not have done the walking program at all in the first six months or so after the stroke. Maybe after that. As it was, two years later turned out to be enough to challenge me — but I ended up feeling like myself again, at least as far as energy levels.

Neck Pain

This one’s frustrating. But remember how I had a headache centered in my neck for four weeks before I had the stroke? (And the stroke happened after I went back on birth control pills.) Well, once I found out that pain was from a right vertebral artery dissection, now I knew exactly what a right vertebral artery dissection feels like. It was hammered into me over four weeks. And I know exactly what pain in my right vertebral artery feels like.

The vertebral artery dissection was explained to me as a kind of bruise on your artery. Then if a clot breaks off from it, that gets in your brain and causes a stroke. This is the most common reason for a stroke in younger people — though still very rare.

We have two vertebral arteries. This is because our necks are made to move. When we turn our head a lot in one direction, it can constrain one of our vertebral arteries, and the blood makes up for it going through the other vertebral artery.

I was told that I’d be put on blood thinners for six months while my vertebral artery healed. That would be to keep a clot from forming and to keep from having another stroke. Once six months were up, they decide whatever situation remains with my vertebral artery — that’s my new normal. Mine ended up being no longer blocked, but described in the MRA report as “diminutive.” So I’ve got one tiny vertebral artery and one normal.

But my neck pain didn’t stop when I had the stroke. Why would it? The blood thinners helped some, but for months, it hurt to turn my head when driving or to hold a telephone with my chin.

Strangely, when I continued to complain of neck pain, my neurologist decided to check if I had arthritis in my neck. Years later, a neurology intern told me that arteries don’t hurt.

This is STUPID! They know full well that vertebral artery dissections hurt. That’s the main symptom before a stroke happens. They also know that I have a teeny-tiny right vertebral artery. And I KNOW exactly what it feels like for my right vertebral artery to hurt. That continued pain I was having was exactly the same as the pain I’d had before my stroke — less sustained (not lasting four weeks, thank God), but in the same place.

Eventually, it did get better, but I still have flare-ups, and they always scare me. Oh, and at the beginning once I forgot to take a dose of Coumadin and then my neck started hurting. (You can’t tell me it’s not connected to my vertebral artery!)

It does turn out that lifting heavy weights — like books — with my right arm can aggravate it. I don’t know why this is so, but did read it somewhere. When I asked, my neurologist did tell me that vertebral artery dissection patients shouldn’t lift heavy weights — so he wrote me a note so that I could bring a wheeled cart to ALA conferences and the exhibit floor. I also started bringing a wheeled cooler to my job at the library to carry books back and forth, because using a tote bag wasn’t a good idea.

But all those precautions weren’t enough in January 2018. I went to ALA Midwinter meeting. I did use a wheeled suitcase on the exhibit floor — but on my way to the conference I lifted my heavy carry-on into the overhead bin on the plane. And later carried it up stairs onto a bus. That night, in a hotel room in Denver, my neck started hurting intensely. I laid awake, wondering if I should go to an E.R. I didn’t. I took some Naproxen, and the next day it settled down, and I didn’t have a stroke. Now when I fly in a plane, I look for a nice man to lift my carry-on for me.

About a month after that, I was shifting our Young Adult Fiction section at the library, spreading the books out over more shelves. I did a lot of lifting and twisting with my right arm — and again had right side neck pain. I made an appointment with the neurologist — and that was when an intern told me that arteries don’t feel pain. Grrrr. Anyway, I didn’t have another stroke and it got better.

Another way I can get neck pain is if I sleep with my head turned toward my left side so that my left vertebral artery is blocked. Unfortunately, I have my bed positioned in my room so that the sun comes in on my right side, and I often turn away from the light in my sleep and wake up with a headache. (I really should move my bed, but normally just use a blindfold, which sometimes falls off.) That always disturbs me — but I can usually change my position and turn my head toward my right side — and the pain will go away, thus proving it was indeed coming from blood going through that teeny-tiny artery. This does, however, make it harder to get out of bed on those mornings — I want to make the pain go away first. Though it’s usually fine after I get up.

Dizziness

Okay, if you have a stroke centered in your center of balance, you’re going to have trouble with balance. At first, I felt woozy if I stood up even for a few minutes.

That got better quickly, but I’d still have episodes where I’d be suddenly struck with dizziness — and every time, I thought I might be having another stroke — since vertigo was the main symptom of the first one.

After several false alarms, and more trips to the E.R. than were really warranted (but a stroke is traumatizing, and I was easily scared) — in December 2011, we discovered a new symptom. I had double vision if I looked up and to the right. My neurologist thought I must have had another stroke. He sent me to a neuro-ophthalmologist at Johns Hopkins.

The neuro-ophthalmologist told me that my double vision was Brown Syndrome, caused by inflammation, not by the stroke. I still wonder if there was actually some kind of nerve damage that was too small to show up in an MRI. But it doesn’t matter because there’s no treatment for it — I just close one eye when I look up and to the right and the double vision is solved.

More significant, he told me that these sudden bouts of dizziness were coming because my migraines had switched to vestibular migraines — where I got dizziness instead of head pain.

I was a little resistant to that diagnosis at first, but as I watched how the episodes behaved, they were indeed very much like migraines and came with a small amount of head pain. Did this happen because of the cerebellar deficit or because of low blood flow on my right side? There’s no way to really tell. But the wonderful news is that when my migraines got dramatically better about a year after menopause — these also got dramatically better. I haven’t had a vestibular migraine in a few years. I do still get regular migraines, but not very bad and not very often. And I am SO thankful. (I have gotten a lot of migraines since I was in fourth grade, so something like forty years of frequent headaches.)

I’ve had to make other accommodations over the years. For a long time, I was attending a church that met in a middle school auditorium — with a slanted floor. I found that if I was going to stand and sing or, worse yet, close my eyes to pray — I needed to hold onto the seat in front of me to give my brain another cue as to which way is up.

Now I almost forget that I have a cerebellar deficit. These are the things that are left:

— I now get car sick very easily. The simplest way to solve this is if we’re driving a winding road, I should be the one driving. If not, I’d better take the front passenger seat.

— Alcohol goes to my head more quickly than ever. I’m a small person, so I never could tolerate much alcohol, but now it seems like a sip will do it. That woozy feeling is almost like a vestibular migraine, in fact, and it’s just not pleasant enough to be worth it. I don’t drink much.

— Other things can affect me more than they would someone without a deficit. I had a nasty respiratory virus in January 2020 (probably too early to be Covid-19), and it hit with my ears being stuffy — and then I got incredibly dizzy with room-spinning vertigo.

This vertigo came on quickly — over about twenty minutes — but I did understand that it wasn’t the same as the instantaneous vertigo that happened when I’d had the stroke. It was alarming, and I eventually saw a neurologist when the virus and episodes of vertigo lasted six weeks — but the neurologist concluded (and I agreed) that the dizziness was caused by middle ear congestion and was just a lot worse for me because of my existing cerebellar deficit. My damaged cerebellum has adjusted to normal life, but this was something it couldn’t handle.

So all told — I consider myself very, very blessed to be so healthy after having a stroke when I was 47 years old. And after ten years, I’m feeling much, much better than after two years — so I’m here to say that healing happens!

Sure, there are still small deficits and I make small accommodations. But nothing is insurmountable, and I am so very glad to be alive!

Ten years ago today, when I was 47 years old, I had a stroke.

A friend has encouraged me to celebrate my Stroke-i-versaries (her word) because it’s a way to celebrate being alive!

I want to blog a little bit about it, because there’s not much out there on the web about recovering from a cerebellar stroke or a vertebral artery dissection, so ten years out, I’d like to give my perspective. I’ll highlight some take-aways as I go.

Don’t sleep on a plane without a neck pillow.

My trouble started when I went to ALA Annual Conference in New Orleans on June 24, 2011. Since I was flying in the middle of the day, I thought I wouldn’t want to sleep on the plane so I didn’t bring a neck pillow. However, my trip to New Orleans went through New York City, and on the second flight, I got really tired, so I tried to sleep with my head against the window. There was some turbulence, and my head and neck really hurt when I woke up. I thought I had just gone too long without eating, so I went straight to find food, but it wasn’t enough to get rid of the headache. At ALA, I made things worse by carrying multiple tote bags of heavy books all over the exhibit floor. I do remember that made the headache worse — and it was already centered in my neck, close to the shoulder where I was holding the heavy bags.

In the month that followed, I think at the beginning I had a couple days off from it, but then a headache developed that lasted for four weeks. It was centered in my neck, behind my right ear. I tried Maxalt. I had more than one doctor appointment. Nothing worked. I used up my sick leave, even trying to work through it most of the time. Working distracted me and was a way to bear it.

If you get migraines, you probably shouldn’t use birth control pills.

A doctor told me when I was young that migraineurs have a higher risk of stroke if they go on the pill, so all through my marriage, I hadn’t used it. But when I was 46 years old and divorced, I was getting frequent ovarian cysts, and a gynecologist wanted me to take birth control pills. I asked about the risk of stroke, but she said they’re lower dose now and it’s not a concern.

I was on the pill for three months, March through early June, and had no ovarian cysts. But I let the prescription expire. She told me to go ahead and get a refill and start the Sunday after my next period started.

I thought maybe being off the pill was causing the headaches. (I was reaching for any possibility.) I started it again on Sunday, July 24.

Don’t feel guilty about changing plans if you’re not feeling well.

I joke that the book Stonewall Hinkleman and the Battle of Bull Run saved my life. You see, it was the 150th anniversary of the Battle of Bull Run, and the site is nearby, and I’d been given tickets to a reenactment. But it was outside and you had to take a shuttle bus to the event — and the forecast was for 104 degrees that day.

The book is about a kid whose parents drag him to reenactments, which he hates and thinks are stupid. (Then he gets pulled back in time.) I thought about his perspective and thought about how I’d had a headache for a solid month and really didn’t want to go out in 104 degree heat — and decided to stay home and read the book instead. I didn’t go to church either, because the headache was really getting to me.

I don’t like to think what would have happened if I’d had the stroke that day instead of the next, out at a field in the heat at a crowded reenactment. So I’m very glad the book convinced me otherwise!

I did make a spinach casserole that night that used two bags of spinach. Later, I learned that spinach is full of vitamin K, which helps blood to clot. I still think the birth control pills were more responsible than the spinach, though.

The next day, I took my second birth control pill from the new prescription and went to work, scheduled 12:30 to 9. I was almost out of sick leave. I found an email that I wrote to a friend at 2:00 that afternoon, saying that the headache was still going strong after four weeks and I was thinking about going to the E.R. and begging them to give me some kind of shot for a temporary reprieve. But at least work helped me think about it less.

For dinner, I had some leftover spinach casserole.

If you get hit with vertigo that strikes instantaneously, it might be a stroke.

After dinner, I had a shift working on the information desk. In between customers, I was talking with Ivelisse, my coworker, and all of a sudden, the room started spinning.

I told Ivelisse, “I feel really dizzy,” and I must have showed on my face how bad it was, because she didn’t hesitate to tell me she’d help me get to the back. But then a customer walked up and asked for my help, and I couldn’t even look up the book on the computer — Ivelisse had to help him. I tried to close my computer windows before I went to the back and managed to get one closed, I think, but had to put my head down until she came back.

Ivelisse helped me get to the back and lie down on the couch in the break room, but I couldn’t walk straight and had to lean on desks and walls along the way. Once I laid down, if I moved my head the tiniest bit, the room started spinning again.

At first I hesitated, but when lying down didn’t help at all, I remembered that birth control pills can increase your risk of stroke, so I asked them to call 911. When the paramedics came, moving my head to talk to them made me start vomiting. I was also in a cold sweat.

Moving while in the ambulance also was awful, though they’d given me an I.V. for nausea.

I later learned that only 3-4% of people who go to the E.R. for dizziness are having a stroke — but a couple of signs that distinguish it are vertigo that strikes instantaneously and not being able to walk straight.

Maybe don’t tell the E.R. that you get migraines. Or don’t be a 47-year-old female.
The E.R. at Fairfax Hospital missed my stroke. By the time I saw the doctor, the dizziness had finally let up (about 45 minutes later). So technically that one was probably just a TIA — a transient ischemic attack. They did a CT scan and an EKG, but didn’t find anything. After I told them I’d had a headache for four weeks, they told me my migraines had changed.

This would be a dramatic change — I’d never vomited with a migraine except when I was pregnant.

They gave me a neurology consult and prescriptions for headache pills and anti-nausea pills and sent me home.

I learned later that CT scans only catch 26% of cerebellar strokes when they’re happening, because they’re surrounded by bone. In a small study of cases where the strokes got missed and the patients had another — 40% died with their next stroke, and 30% had permanent disabilities.

Don’t be afraid to ask for help.

I called my friend Marilynn and she drove me home from the hospital. I could hardly sit up. (I’ve often thought how they nicely use a wheelchair to help you out of the hospital when you’ve been admitted, but the time I really needed a wheelchair was that night from the E.R.)

The next day, Tuesday, I was too sick and out of it to fill the prescriptions or make a doctor appointment. I did send an email to friends telling them what happened and that it wasn’t a stroke or a tumor or heart problems, but asking them to pray. (I was still taking birth control pills.)

On Wednesday, I woke up without a headache for a little while! I thought it was from the Fiornal I’d been given, but enjoyed the reprieve. I made a doctor appointment for 9:20 the next day and thought if I felt good enough, I’d go to work after the appointment. I asked my friend Kathe to drive me to work to pick up my car. I told people at work that the doctors said I was fine and I planned to be back at work the next day.

If half of your face is tingling, call 911, for crying out loud!

I woke up Thursday morning, July 28, super dizzy, but not room-spinning. Just hardly able to stand up. I almost fainted when I went to the bathroom, and dived back onto my bed when I was done. Then I noticed my right side — both arm and leg — was tingling. Had I slept on them funny?

I laid there trying to figure out what to do. I didn’t want to call 911 because the E.R. had just sent me home. Besides, my son was sleeping in his room and I didn’t want to scare him. Besides, my room was messy. How could they fit their gurney in there? And I didn’t want to call them when I was in my nightgown.

But my dizziness got a little better, so I decided to get dressed and make breakfast and figure out what to do. I didn’t dare take a shower, but I managed to get dressed and then felt more able to face the day.

I made my usual morning oatmeal, lying down in between steps. Also lying down on the sofa, I called the doctor’s office to tell them I wouldn’t make my appointment. I talked to a nurse and I don’t know what I said, but she told me it would be fine to ask a friend to drive me to a military hospital — I didn’t need to call 911. Dear Reader, this was bad advice.

When I started eating my breakfast, I noticed that the right side of my whole face, including my lips, was numb, besides my arm and leg. Okay, I was going to the E.R.

Next I found a friend to take me. My friend Kathe, who lived a half-hour away, said she’d do it. I calmly told my son I’d be going to the E.R. Then I logged onto my computer to print a map to the E.R. for my friend. This was before we had cellphones, but I don’t know why I thought she needed this.

I discovered today that I even wrote an email to my small group asking for more prayer. Why did I do that? Here’s what I wrote:

Well, instead of going to my doctor appointment this morning, I’m headed for the ER at Fair Oaks. Would appreciate more prayer. The nurse at the doctor’s office said I could wait for a friend to pick me up, though that was before my whole right side started tingling again. Kathe’s going to take me.

I woke up this morning and got real dizzy when I went to the bathroom. Then my whole right side started tingling — arm and leg and even my face. I rested and managed to eat breakfast, got dressed, but didn’t try a shower. Cold sweat with the dizziness. Oh, and an intense right side headache, too. Anyway, I went online to print directions to Fair Oaks, but now think I will lie down until Kathe comes. I admit I’m freaked out!

About the time I finished writing that, it got bad enough again that I was getting scared. I finally figured out that I should probably call 911. But I called Kathe and she was only a minute away. So she helped me walk out to her van — I couldn’t walk straight again. I had to lie down in the back rather than sit in the front seat.

This time I went to Fair Oaks Hospital, and I’ll borrow from a post I wrote at the time to describe what happened:

And they got me in right away and looked me over. (Fair Oaks is a great hospital!) At first they didn’t seem very alarmed. They had access to the CT Scan that was done on Monday, so didn’t think it needed to be done again. But since I had that tingling on my right side (and that continued), they decided to do an MRI.

While they were doing the MRI, I was praying that if something was there, they would FIND it. Because I absolutely knew that I was not okay and I would have a really hard time believing these were new migraine symptoms.

Later, when they did send me for a CT Scan, I figured they must have found something. Sure enough, they told me I’d had a stroke, and they were going to admit me “overnight for observation.” Okay, I guess they tell you “overnight” at first to let you down easy! I was super glad I had taken the time to eat breakfast, because I didn’t get any food until after they admitted me at dinnertime. They did four tests that first day. I think the other two were a sonogram of my heart and an MRA (magnetic resonance angiography) of my head.

It took them a couple days, but they did figure out that the stroke was caused by a right vertebral artery dissection — basically a neck injury. I knew right away that it must have happened when I slept on that plane going to ALA Annual Conference. No wonder I’d had a headache centered in my neck ever since!

Oh, my son’s 17th birthday was the day after I went into the hospital. His dad had been planning to pick him up to visit on his birthday, so I told Tim to have him pick him up a day early. I felt awful about missing his birthday — I made a cake after I got home from the hospital.

I stayed in the hospital for ten days while they adjusted the IV blood thinner so I wouldn’t have another stroke. They sent me home with a prescription for Coumadin, a blood thinner. My small group leaders John and Lisa Maulella brought me home and took me to two stores to find the prescription. It was so hard to stand up long enough to fill the prescription!

And this post has gotten long enough. I do want to blog about the recovery process from the vantage point of ten years, but I’ll do that tomorrow.

Here are blog posts I wrote ten years ago, in the middle of it:

Journeys of Different Kinds
To the Hospital
Was I Scared?
In the Lucky Thirty Percent
The Road to Recovery