EXCLUSIVE: Athlete who risked paralysis to have a life-threatening tangle of blood vessels removed from her brain is back to sports after ‘losing all her blood’ during 14-hour surgery
- Lindsay Vos, 31, of Michigan, suffers from a rare genetic condition known as HHT, which caused a large abnormal tangle of blood vessels to form in her brain
- The tumor-like mass, called an AVM, made Lindsay’s left side weak, gave her nausea and migraines and could have burst at any moment and killed her
- Because it was in the area of her body that controls her right side movement, most surgeons refused to operate
- In 2017, Dr Mark Bain at the Cleveland Clinic performed the dangerous surgery
- Lindsay’s AVM ruptured in surgery, and she claims she lost as much blood as her body contains
- When she woke, up Lindsay was paralyzed on her left side, but ‘smiling from ear to ear’
- Despite the odds, in less than three years, Lindsay is back to running, biking, basketball and one-handed pool with the brain injury patients she rehabilitates
Given the choice between a lifetime of headaches from a condition that could unexpectedly – but quickly – kill you, or brain surgery with a high risk of leaving half their body paralyzed, most people would hesitate to answer.
But it gave Lindsay Vos, of Ann Arbor Michigan no pause.
After an abnormal mass of blood vessels in her brain made life all but unbearable for Lindsay for years, she had a treacherous operation to remove the malformation in her brain, it burst in surgery, and she awoke completely paralyzed on her left side.
Once more unfazed, Lindsay took it in stride – and in the nearly three years since the life-changing surgery, the now-31-year-old has regained her own stride, beating the odds to walk, run, kayak and play one-handed pool in a remarkable recovery.
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In 2017, Lindsay Vos underwent a dangerous brain surgery to remove a tangle of blood vessels that could have burst at any moment and killed her (left, after surgery). She was left paralyzed on her left side – but in less than three years, Lindsay has regained nearly all function and is even running 5Ks (right)
For months, Lindsay just accepted her excruciating headaches as mere migraines, no different from what anyone experienced.
But some days the pain was so bad that in order to work at all, Lindsay had to draw the blinds and turn off the lights just to be able to tolerate looking at the computer screen. Her mother suspected that this was not ordinary and urged Lindsay to get an MRI.
When the results were in, the diagnosis was anything but commonplace.
‘Her first words were…you’re not gonna die, but…”‘ Lindsay recalls.
‘”But you have this thing in your brain – about the size of a baseball – this tangle of blood vessels.'”
Lindsay suffers from a rare inherited condition that causes arteriovenous malformations (AVMs) – tangles of blood vessels – to grow where they don’t belong.
The knots of blood vessels can form anywhere in the body. The one in Lindsay’s brain was encroaching on the area of gray matter that controlled motor function on her left side.
Lindsay, now 31, has always been extremely active, athletic, and positive. Even when doctors told her the risks of her surgery, she didn’t hesitate to go forward, committing to strengthening her body before the operation in preparation for the possibility of partial paralysis
While searching for a surgeon to remove the malformation from her brain, Lindsay (let) learned she suffers from a rare genetic disorder called HHT that causes these blood vessel tangles
Less than one percent of the population develops AVMs – usually in the brain or spine – over the course of their lives.
Often, there aren’t obvious signs of these dangers lurking in the folds of gray matter until they hemorrhage, or bleed out.
If the malformation is intact, it may cause headaches, seizures or weakness in one part of the body.
Once it begins to bleed, an AVM’s symptoms become more obvious. Headaches worsen, sufferers may be extremely weakened, even paralyzed, and their vision, speech and comprehension may start to go.
Just before her diagnosis, during her internship – where, incidentally, Lindsay was working with traumatic brain injury patients – signs of bleeding began to crop up.
‘I had slurred speech and left-side weakness, but I was too stubborn and thought: “I’m not missing my internship, I’ve got to get this done,”‘ Lindsay told DailyMail.com.
For years, Lindsay suffered migraines and horrible nausea, but tried to ignore it, determined to finish her internship. Once she learned of her condition Lindsay (pictured left, and right, second from right) wanted the arteriovenous malformation out of her brain immediately
If an AVM patient is lucky, the malformation is small, and sitting in a relatively negligible spot in the brain.
That was not the case for Lindsay. Her AVM was large, and precariously placed.
Her doctors monitored and treated the tangle of vessels by embolizing them, or injecting a glue-like substance through a catheter, to block of blood flew and reduce the risk that the mass would bleed out, from 2011 to 2014.
At last, Lindsay was scheduled for surgery, with the hope she’d awake with a more permanent fix.
But her initial surgical team took one look at Lindsay’s AVM and backed away.
‘They woke me up and said, “You’ll be permanently paralyzed,”‘ Lindsay says.
‘Most people would be like, “good, I’m not having brain surgery,” but I wanted this thing out of my brain.’
Most surgeons refused to remove the AVM – until Lindsay (right) met Dr Mark Bain (left) at Cleveland Clinic. Her performed her surgery in January 2017
During the agonizing waiting period, Lindsay’s father became very ill. He kept getting worse and worse, and no one could work out why.
Finally, one of his doctors suspected her father had a condition called hereditary hemorrhagic telangiectasia, a rare genetic syndrome that causes AVMs to form over and over, anywhere in the body.
Knowledge of her father’s condition galvanized Lindsay to find a surgeon that would remove the AVM from her brain, but she also lived in a state of fear.
‘They monitored my condition and hoped nothing happened, but I like to do a lot of activities on my own, like biking, kayaking and running,’ Lindsay said.
‘And I thought, “I’m going to just die and someone will find me dead”‘ if her AVM burst while she somewhere alone.
He saw hundreds of doctors but, by the time he was diagnosed, Lindsay’s father was too ill to be transported and treated. He died 11 months after his condition was identified.
An artery ruptured during Lindsay’s brain surgery and she had to be placed in a medically induced coma for some five days afterwards in order to allow the swelling to subside
Half of her hair had to be shaved so Dr Bain’s team could male a long incision to access her skull and the area of Lindsay’s brain where the AVM was (left). Despite having lost mobility on her left side, Lindsay was all smiles as soon as her breathing tube was removed (right)
Just before her father’s death, Lindsay met Dr Mark Bain, a neurosurgeon, and the only person who would agree to remove her precarious AVM, and her father, dying of his own slew of AVMs, told her: ‘good luck at Cleveland Clinic.’
At Cleveland Clinic, Dr Bain went over the risks of Lindsay’s surgery with her all over again.
‘Lindsay was unique,’ Dr Bain told DailyMail.com.
‘She’s been dealing with this so long that she knew what wanted: to be cured of this AVM. It was killing her. It was ruining her life.’
In preparation for the surgery – and what life with only half of her body functional might be like – Lindsay spent the next five months getting in the best shape of her life, eating a healthy diet and ‘partying less,’ she says.
Hoping to reduce the risks that Lindsay’s AVM would rupture in surgery, Dr Bain tried to block of one of the largest arteries feeding deep into the tangle of blood vessels with one last embolization.
At first Lindsay (pictured, center, with her family) had to use a wheelchair, but she progressed quickly
But the artery had too sharp a curve in it, and he was unable to snake the catheter around the bend. Dr Bain’s team woke Lindsay up and broke the news to her.
The failed embolization meant that she was in even greater danger of the AVM bleeding out and causing a stroke during surgery, which would likely leave her left side paralyzed.
‘Without blinking she was like “yes, lets’s do that,”‘ Dr Bain recalled.
‘She was so definitive on what she wanted to do, no matter what the cost. But it played out just like we thought it would.’
The entire tedious operation to sever and block each of the tangle’s blood vessels in order to remove them took place in January 2017, and lasted about 14 hours.
Before Lindsay’s hair had even grown back, she was on her feet and working toward walking
But once Dr Bain reached that large, central artery to the AVM, everything went from careful and methodical to a breakneck race.
The artery was fairly small, but highly pressurised and, when it burst, blood gushed out, into Lindsay’s brain, out from her skull and all over Dr Bain’s scrubs.
By Lindsay’s recollection, she lost the entire volume of blood in her body, which was replaced by transfusion during the surgery.
‘From what I was told, Dr Bain was wearing white scrubs and they were red all over,’ after the surgery, Lindsay says.
‘As they were rolling my gurney, they said everyone down the hallway was just crying,’ shocked by the sight of all that blood, Lindsay said.
But in the interim, Dr Bain and his team had managed to suction enough blood away to spot the exact source of the bleeding and top it.
As soon as she awoke from surgery, Lindsay says she was thinking about how she could learn to play one-handed basketball. Less than two years later, she was doing it (pictured, front left, with teammates)
Lindsay made it through surgery and was taken to the intensive care unit (ICU) where she was put in a medically induced coma for about five days. She’d suffered a major stroke and it was touch and go for awhile but, eventually, Lindsay stabilized.
‘As soon as the breathing tube came out, she was the happiest person, just smiling ear to ear,’ Dr Bain recalls.
‘I wasn’t sad, I knew the left side of my body didn’t work, but I was just like, “How am I going to be the best at wheelchair basketball? How am I going to get out of my mom’s car to go to the turnpike Starbucks?”‘ Lindsay recalls.
‘I knew I couldn’t swallow, so I asked, “where’s the ice cream?”‘
Lindsay’s relentlessly positive attitude has taken her far in the past two years, with the help of a physical therapy team whose outlook matched her own.
Lindsay’s physical therapists matched her own determination and never had her use a walker or cane. Before long she was walking down the aisle as a bridesmaid – unsupported
Lindsay hasn’t regained full strength in her left hand, but she’s back to kayaking with an adaptive paddle nonetheless (left). Before the AVM was removed, Lindsay worried she’d die doing solo activities like biking. Now she’s back to racing (right)
As she re-learned to walk, Lindsay never used a walker or cane – she just went from wheelchair to walking.
Her therapists said: ‘We’re not settling for that.’
‘I asked [one of the therapists] “why” on one of the first days I could walk again, and she said “there were too many pros to your situation. You’re young, you’re athletic, you know what to do from working in the medical field.
‘”The con was you’d had one of the worst kinds of strokes a person can have in their lives.”‘
But that didn’t stop Lindsay.
Already Lindsay is racing in 5Ks again (pictured), and in the future she looks forward to travelling – hopefully to Australia to see the Great Barrier Reef
Two years on, she’s not just walking independently, but running (including in 5Ks), biking, using an adaptive kayak, playing one-handed basketball and even becoming a one-handed pool shark while playing with the traumatic brain and spinal cord injury patients she works with in her job as a recreational therapist at Rainbow Rehabilitation Centers.
Lindsay has regained nearly full function on her once immobile left side, with the exception of her hand, which remains weak, despite some gains.
She’d like to get an adaptive device to assist her left arm, but so far her insurance has refused to cover it.
Other than that, life is pretty remarkably good, says Lindsay, whose future goals include accruing some paid time off to travel – specifically, to Australia, where she’d like to take a helicopter ride to see what’s left of the Great Barrier Reef.
‘The only thing I have trouble with is putting my hair up in a bun – I like my hair up when I exercise,’ Lindsay says.
‘It’s all too good to be true, my quality of life is so much better.’