“I can’t feel my hand,” I said aloud to myself. And then the right side of my face went dead.
I stood there frozen for a bit. I was confused. My friend who was next to me looked over and asked if I was ok. I had a hard time getting the words out. “I feel like… I’m having a stroke,” I managed to say.
“What do you want me to do? Do you want to leave? Should I call an ambulance?” he asked.
I stood there for awhile longer. I couldn’t think straight. I didn’t know what I wanted to do, I didn’t know how bad it was. I felt stoned. I said no, and pointed to the woman’s bathroom. I went inside and stepped up to the sink. I looked in the mirror. I remember thinking, “Is my face slumping?” It wasn’t. That’s good, right? My dead hand started to tingle. I splashed water on my face and just stood there for a bit. My hand was now engulfed in nearly unbearable pins and needles and my face began to tingle as well. I walked out of the bathroom where my two friends were waiting for me. They asked again if they wanted to take me to a hospital. I shook my head no, and instead we went back to my friend’s apartment. I laid on the pull-out couch and we watched Me and You and Everyone We Know (which is very good but very weird and might make you feel like you’ve had a stroke anyway). I felt better, but super hungover. That’s the only way I could describe it. Exhausted and kind of spaced out.
The next day I returned back to Bloomington/Normal where I was a grad student. I made an appointment at the student health center and told them what happened. The doctor said I needed to see a specialist. “Ok,” I said.
“I’m serious,” she said. “You can’t mess around with this.”
“Ok,” I said again.
She stared at me hard then pulled out her personal cell phone. “I want to watch you call a specialist and make an appointment.”
We were quiet for a bit, and then I spoke. “No,” I said. “I have crappy student health insurance. I’m not going to go see a specialist right now.”
She wasn’t happy, but she couldn’t force me to go. The truth was, I had been screwed over in the past by the health insurance game and I was probably more afraid of being hit with a life-changing bill than a life-changing stroke. I know that is stupid, I know it is. But it’s how I felt at the time. Besides, I felt better. If it was something serious, I would still be sick or something, right? I had suffered from terrible migraines since my teens. Maybe it was just some kind of wacky migraine? I went home.
Flash-forward two years later I was back in Chicago working for an international non-profit. The exciting story of the day was that there were mice spotted in the office. I was sitting at my desk when I felt funny. I can’t explain it, but I recognized the feeling, I knew what was happening. My left hand went numb, and then the right side of my face. I couldn’t speak. I remember looking down at the floor and there was a tiny, perfectly spherical mouse sitting under my desk. He was adorably cute, almost cartoonish. I remember thinking, “Is this real?” At that moment my boss came over and started talking to me. I couldn’t speak, I just stared at her. She knew something was wrong. “Don’t do this to me, Jill,” I remember her saying, “I don’t know what to do!”
She wanted to call an ambulance but I was cognizant enough to know that I didn’t want to be hauled off on a stretcher out of my office building, with the office trolls watching. I managed to wave her off and picked up the phone. I called home. My Dad answered, and I managed to say that I needed him to come get me. He understood and came right away.
On the way to the hospital, my hand and face started to tingle again. I felt the familiar exhausted hangover feeling and I knew whatever was happening was passing. In the ER, they did blood work and a CAT scan and MRI. Everything came back ok. They released me with referrals to specialists.
Armed with good insurance, the next several months were spent in and out of doctors’ offices at Rush University Medical Center, trying to figure out what was going on. I had a neurologist, a hematologist and a cardiologist. The people were extremely nice and professional, the technology was incredible. I felt I was in good hands.
One of the tests they did was called a bubble test. It’s a basic echocardiogram, where you see your heart on the monitor in front of you, pumping away. They then put an IV in you with saline that they pump with air, forming bubbles. They then shoot this into your arm and then watch the bubbles travel in your blood stream, through your veins, into your heart.
“And there’s the culprit,” said my tech. Sure enough, bubbles were pouring out of my heart in a place they shouldn’t be. “You have a hole,” she said.
Long story short, I was diagnosed with a patent foramen ovale (or PTO). Basically, when everyone of us are still in utero, our hearts have a flap-like opening that don’t completely close until shortly after birth. But for some reason, this doesn’t always close for everyone. Normally, if a small blood clot or other debris were to travel around one’s body and go into the heart, the heart would shoot it back out again. But if that flap never closed, the clot would be shot right up into that person’s brain, causing a stroke. Sometimes it’s a “big stroke,” like the ones we all know of, causing long-term damage. Or sometimes it’s a stroke which the symptoms only last an hour or less. That’s called a transient ischemic attack, or TIA for short, or “mini stroke” for cuteness.
Have you learned more than you thought you would about strokes in this blog?
So they told me I had a mini stroke. And that I had this hole in my heart from birth that never closed up. My cardiologist at Rush nonchalantly said “No problem, we’ll just pop in your chest real quick and put this screen in there to close it up, don’t worry, we do these all the time!” He said they used to have to crack the chest open and do full, open-heart surgery, but now they’ve developed a way to do this by going through the major artery in your groin or arm, like an angioplasty. No biggie! Technology! Progress! He literally was pulling on a pair of gloves as he told me this.
I remember when my Dad had a heart attack when I was in high school. He had an angioplasty and he was in the hospital for a week. Half of his lower torso was a deep, black-purple, bruised from his ankle to his groin. (“You should see my testicles!” he said, stoned from his hospital bed, “One normal, one purple, right down the middle!”) At one point, he started inexplicably bleeding from the incision and two nurses had to come in and climb up onto the bed and put their entire weight onto his groin to stop the hemorrhaging. I have never heard my father scream like that.
Maybe surgeons did these procedures all of the time and it was no big deal to them, but I didn’t have them all of the time, and it sure as hell was a big deal to me.
I looked at my cardiologist and said woah, woah, woah. This was a lot of info to take in. Was surgery really necessary? I mean, how common was this problem? How big was this hole? Or flap? Wait, was it a hole or a flap? I needed more information. My cardiologist just stared at me, confused. I told him I needed time to think and I left.
I began to do some research on my own. I started with Google. I learned that one in five people are born with PTOs. It’s fairly common. A lot of people live their whole lives having a PTO and never know. They never have any problems from it. But those who do have problems, like mini strokes (or… maxi strokes?) have BIG problems. And I had two mini strokes. Right? I had sonogram of all my limbs and no clots were found. So was it a clot? They couldn’t be sure. They said there was a chance, however, that it wasn’t a TIA at all, but a basilar migraine, which is basically a brain stem migraine that acts like a stroke. But it’s better to be safe than sorry, right? I should have this device put in my heart just in case. But then I read that no devices are currently approved by the FDA specifically for PFO closure. It was possible, in fact, for these devices to cause more harm than good. There can be infection. Future MRIs and CT images can be skewed. You might not be able to use a defibrillator if you need one in the future.
I read a lot. I went back to my doctor and talked about it. We decided that I would wait for the time being. They advised me to take precautions to avoid clots, so I started taking a baby aspirin a day and went off the birth control pill. They still thought I should close the hole, but ultimately it was my decision.
That was almost six years ago. Since them, I’ve been fine. My family, however, would sometimes get on me about it. “Shouldn’t you have that hole closed up?” they’d say. “I just would feel better if you did.”
My new primary doctor was awesome. I talked to her about it. She said I should talk to a new cardiologist. There had been a lot of progress in the past six years. I should reevaluate. She said that she had seen a lot of heart attacks and a lot of strokes in her time. “Both are bad,” she said, “but if given the choice, I would much rather have a heart attack than a stroke.” I made an appointment with a new cardiologist.
I had another series of tests including a bubble test to confirm that everything was the same. I thought and thought and thought. I had good insurance. was 35-years old now and had a daughter. I wasn’t getting any younger! I decided that if the doctor wanted to close up the hole, I’d close up the hole.
Last week I went to my appointment. I met with my new cardiologist at a different hospital. He sat down and pulled my medical history and test results up.
“I don’t think you need to do anything,” he said.
“What?” I asked. I couldn’t believe it.
He went on to explain that new studies had shown that closing a PFO doesn’t necessarily stop these “neurological episodes.” That’s what he wanted to call it. He said there was no hard evidence that it was a mini stroke. It could have been, but it also could have been a crazy type of migraine. Or, something else. “We just don’t know,” he said. “And if you’ve only had one or two with no evidence of clotting, I don’t see why we should put a foreign body into your heart.” He cited new research from the Mayo Clinic that came out a few years ago supporting this.
This was the first time a doctor had been saying what I had been saying all along. Why do this rather drastic procedure if we’re not sure? If we just don’t know?
If I had gone ahead and let my cardiologist back in 2007 do the procedure, the new study would have shown that it wasn’t the recommended procedure just a couple years later.
I left the doctor’s office in a bit of a daze. There had always been a little burden on my shoulder (chest?) that I “needed” heart surgery. Was I avoiding it because I was scared? Maybe. But much more than that was this feeling that it just wasn’t right. It didn’t add up. I have had many, many medical ailments in my life and have always followed medical advice. But this time was different. It felt rushed. Overly drastic. I felt uninformed of my situation or options, and moreso, I felt that my doctors were uninformed about my particular situation. “Surgeons want to cut,” my cardiologist told me. “Carpenters see all problems as nails and all solutions as hammers.” But not every problem IS a nail.
I am relieved I didn’t have the procedure done back in 2007. It worked out for me. It is very, very difficult to be your own health advocate. It is hard to get all of the information. To find time to get second opinions. I had to take so much time off of work just to go to all of these doctor appointments. I don’t know how people are expected to miss work/childcare/life and go get second and third opinions. Or pay for it, if their health insurance is less than stellar. There are those who choose dramatic treatments, like Angelina Jolie, and those who choose just as dramatically not have treatment. Whatever your choice, I hope we can all feel that it was our choice as individuals, and that we can feel informed and confident that we are making the one that works best for us.