I ignored my back pain. 5 days later I almost lost my leg
I watched the fluorescent lights pass overhead as the ambulance attendants wheeled me down the hallway. An alert went out over the hospital intercom urgently calling the trauma team to the red pod.
A car accident? Heart attack? I wasn’t sure. Either way, it sounded bad, and I remember feeling sorry for whoever was going there.
It wasn’t until the doors to the red pod appeared and a team of doctors and nurses stood waiting, gloved hands in the air, that I realized the trauma was me.
Yet to be diagnosed with a little-known condition called May-Thurner syndrome, I was hours away from losing my leg and at risk of a pulmonary embolism stemming from a blood clot that began in my abdomen and ran down to the bottom of my ankle.
All I knew was that I couldn’t feel my leg, which had turned a dead grayish purple color, and was swollen to twice its size.
The medical team went to work.
Five days earlier
The year 2017 was a bad one. Our family lost two of its most beloved members in the span of five months and it had been a dark time.
It was the Fourth of July and to escape the sadness, we spent the day at the beach. It was hot and sunny, and I spent hours sitting by the ocean with my feet in the water.
When I woke up the next day with my lower back hurting, I chalked it up to the beach chair and a long car ride the day before.
At 49, I was coming to terms with all kinds of "new normal" aches and pains, hair loss and other perimenopause symptoms significant enough that my gynecologist put me on hormone replacement therapy a few months prior.
“I’m getting old,” I joked to my husband and took ibuprofen.
Like muscle pulls and all the other injuries I’d experienced after running or lifting something too heavy, I figured a good night’s sleep would remedy the back pain.
But the next morning, getting out bed was difficult. If anything, it was worse and the pain had spread into my hip and down my leg.
"Must be sciatica," I said to my husband.
I’d never had it before, but based on my consultation with Dr. Google, the symptoms matched, so I dismissed them.
Like the previous two days, the next day I woke up in pain yet again. I found myself limping.
“You should go to the doctor,” my husband said.
“For what?” I asked. “They’ll just tell me to rest and take Advil.”
Friday came and we had plans with friends that I couldn’t cancel. I doubled down on the ibuprofen and went out.
The decision to keep the date was a huge mistake. It was obvious that I should have stayed home and followed my self-prescribed advice to rest because the next morning I woke up in agony.
After getting up, I stood at the top of the stairs wondering if I could even make it to the bottom to get coffee. I hobbled down, then realized I wasn’t sure if I’d be able to go back up.
“Please let me take you to the doctor,” my husband said.
After spending much of the day working at my desk, I stood up and saw that one of the cabinet doors in our home office was ajar and leaned over to close it.
A jolt of searing-hot lightning shot up through my hip and back, bringing tears to my eyes. The pain made it hard to think.
My husband helped me up the stairs and I went to bed early, bringing a heating pad with me to try and take the edge off the never-ending throbbing.
I couldn’t get comfortable. I couldn’t sleep. I felt feverish.
Everything hurt so much I wanted to cry.
July 9, 2017
In the morning, I sat my way down the stairs, sliding from one to the next until I reached the bottom.
I limped into our living room, wearing a T-shirt and pajama shorts, when a fierce seizing sensation ran up the back of my leg. My mind went to a hoodie sweatshirt and someone pulling the neck drawstring as tight as it would go.
I tried stretching my leg but couldn’t move it. Standing nearby, one of my two daughters pointed and said, “Mom, your leg is really red.”
My vision swam and I felt tingly all over. Funny. Not right. Something was wrong. So wrong. My husband ran to call 911.
We lived in the country and waiting on the volunteer EMTs felt like a waste of precious time for whatever was happening.
Instead, we drove to the nearest emergency clinic, my leg swelling larger and larger, pushing through the holes of the torn jeans I was wearing. My toes turned from bright red to purple, then gray, in the 12 minutes it took to get there.
Soon there was oxygen up my nose, an IV in my arm delivering heparin, and a hushed conversation between my husband and the doctor about LIFE STAR flying me to a hospital with the necessary facilities to treat me. It was decided an ambulance would be faster.
I didn’t know what was wrong but judging from the size and the color of my leg, I realized that without immediate intervention, I would lose it.
“How long do I have?” I asked the doctor. Without hesitating, he answered, “Six hours.”
Not a day goes by that I’m not thankful for Dr. Parth Shah, a vascular surgeon at Connecticut’s Hartford Hospital whose rotation happened to fall on an early Sunday morning in July.
Would someone else have identified my rare condition as quickly?
Shah says that among the eight doctors in his group, all would have recognized the hallmark symptoms of May-Thurner syndrome, a congenital defect that’s present in 1 of 5 people, according to the Cleveland Clinic website, although most won't ever develop symptoms.
Outside of specialized vascular surgeons, however, I’m not so sure. Weeks after my recovery, I had a follow-up visit with my regular doctor, who had to Google the condition.
A vascular disorder, May-Thurner is described by the Cleveland Clinic as occurring primarily in the lower left abdomen and involving the iliac artery, which carries blood to your right leg, crossing over the left iliac vein, which brings blood to your heart from your left leg.
Born with the defect, a majority of people who have the crisscrossed artery and vein are unaware and unaffected.
However, in certain individuals, most commonly women between the ages of 20 and 50, the artery constricts the vein enough to reduce blood flow, much like pinching a straw and then trying to drink through it.
Over time, the compression can lead to blood clots in the leg and in the worst-case scenario like mine, the “straw” closes off completely and with nowhere to go, the blood begins to back up and pool.
“It starts swelling into the skin, into the tissue, then there is the blood clot on top of that,” Shah explains. “Once all the veins are clotted off, then it starts backing up into the tissue, which is where the blue discoloration and vein starts changing color.”
By then, there's no time to waste, according to Shah, who says patients have between six and eight hours to seek treatment before the limb is lost or worse, a piece of the clot breaks off and travels to the lungs, resulting in a pulmonary embolism.
Because I acted quickly, am fortunate enough to live near a large hospital and had a doctor who knew what was happening, I am among the lucky.
“If you’re remote and if this happened, the outcomes are different,” Shah explains. “Unfortunately, some patients do not make it in time.”
Missing the symptoms
Months later, I asked my primary care physician what he would have done had I come into the office complaining of back and hip pain.
He verified what I already guessed. I would’ve been sent home with a prescription of painkillers and orders to take it easy.
What could I have done differently?
Not much, according to Shah, at least not initially, given that May-Thurner in young and healthy individuals can be easily mistaken for other things like a pulled muscle or easily-dismissed leg pain.
"It’ll start out like that, then it’ll create some swelling, which initially may be very subtle," Shah explains.
“Any of us who are in that boat are not going to take it seriously initially because it’ll feel like, ‘Oh, this is a minor ache, something I must have done wrong, let me just rest it out,’” he says.
Had I been paying attention, I might have noticed swelling or discoloration in my left leg, both warning signs. And if I hadn’t been so consumed by our recent losses, I might have remembered the new back pain I’d been suffering occasionally since going on hormone replacement therapy four months earlier.
But like many women, I dismissed the symptoms. If anything, I was embarrassed, ashamed that my aging body was beginning to show signs of wear and tear.
I certainly never put two and two together that, along with an increased risk of stroke, taking the oral contraceptives can cause the blood to thicken, sometimes leading to blood clots and, in my case, significantly reducing blood flow through my congenitally crisscrossed veins.
Sitting in a beach chair for six hours, then riding in the car for another two, sealed the deal.
I spent two days in the ICU and a third in the hospital recovering from two procedures.
The first involved placing a specialized catheter in the back of my leg that simultaneously delivered what Shah calls a “clot-busting” drug called Alteplase along with low-frequency ultrasound waves to help break up the massive blockage.
The second was the insertion of a stent into my abdomen to keep the compressed vein open, hopefully guaranteeing that I won’t have a repeat performance at any point down the road.
It’s 96% effective in preventing a recurrence, Shah says, and I try not to worry about the other four.
Along with wearing compression hose under my clothes for months, my recovery included a long course of blood thinners, warranting a medical bracelet to alert paramedics that I could bleed to death if in a car accident or other serious injury.
Now, seven years later, I’m down to one baby aspirin a day and a blood thinner I inject into my stomach for flights lasting more than six hours when I travel.
Just in case.
What to know about blood clots
Anytime you notice an unusual swelling in an arm or leg, along with pain, tenderness, skin discoloration, or skin that's warm to the touch, it warrants medical attention.
“A hundred thousand people die and almost a million people will get a blood clot every single year," Leslie Lake, volunteer president of the National Blood Clot Alliance, tells TODAY.com.
And while men have a slightly higher incidence of developing blood clots, Lake says that women who get them consistently have worse outcomes.
“If a man and I present with the same symptoms, I’m more likely to die than he is,” says Lake, who suffered an unprovoked pulmonary embolism in 2018 at the age of 54.
“Women have unique risks related to blood,” she explains. “It’s one of the number one reasons for maternal mortality in the United States.”
Despite how common they are, Lake says, they’re often missed not only by those who get them, but by clinicians, too.
“That’s really scary,” she says. “I feel like people have a good handle on strokes and heart attacks for the most part. But ask them about blood clots and very few people could probably tell you the signs and symptoms or how to treat them.”
According to the National Blood Clot Alliance, common risk factors for blood clots include:
Hospitalization for illness or surgery
Trauma, such as a car accident or other injury
Injury to a vein
Hip or knee replacement surgery
Cancer and cancer treatments
Use of birth control pills or hormone therapy that contains estrogen
Family history of clots
Confinement to a bed or wheelchair
Sitting for long periods of time, especially with legs crossed
Age 55 and older
As far as May-Thurner goes, Lake says symptoms of the disorder include swelling of the leg, skin discoloration, ulcers, open sores and pain.
Left untreated, it can — and has — resulted in limb loss, because, like me, other women tend to dismiss their symptoms, often waiting until it’s too late to get help.
“Then the tricky part is finding people who actually know what they’re doing in the space,” Lake says.
While I think that fate might have had a hand in my positive outcome, it’s Shah who comes to mind when I look down at my left leg.
I'm thankful it’s there and, more important, that I’m still around to use it.
I usually cry at least once during our annual checkups. Not because I’m sad, but because I’m grateful.
“Thank you so much for being the one who knew what was going on,” I tell him every time we meet. "Thank you for saving my leg."
And, like always, he always responds with a smile, “That’s my job.”
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This article was originally published on TODAY.com