Doctor Nearly Dies From the Rare Condition He’s Spent 15 Years Researching

David Williams, MD, has been researching cerebral venous thrombosis since he’s been out of medical school. Little did he know the condition would affect him on a much more personal level. (Photo courtesy of David Williams)

As coincidences go, this was a doozy.

It’s late July of this year and David Williams, MD, a 44-year-old emergency medical physician living in Maui, is boarding a plane to Los Angeles, where he periodically comes to work and teach at the University of Southern California.

But by the time he arrives in LA, he’s not feeling great. He had picked up the rhinovirus from one of the kids he treated back in Maui, and he’s tired from having worked 14 shifts in 17 days. He decides to sleep it off and plans to hit the beach in the morning. He’s a surfer and the waves are supposed to be big.

At 11 p.m., he is struck with what he describes as a “thunderclap headache” — a pounder so severe he can hardly walk or see — and starts vomiting uncontrollably. He knows something is wrong with his head — maybe it’s an aneurysm? A tumor? — and he feels around until he finds his iPad. He is somehow able to FaceTime his fiancé, who hightails it over and drives him to Cedars-Sinai Medical Center. It’s a 20-minute drive from his home in Venice Beach, but at this time of night they do it in 10 (the one time LA traffic works in his favor).

A nurse Williams worked with years ago at a county hospital happens to be in the triage area that night. “Ddubs, you look like crap,” the nurse tells Williams.

They do a CT scan. Negative — no head injury. Because Williams had been exposed to several tropical diseases while treating patients in Hawaii, an infectious disease specialist is called in. The specialist thinks Williams may have meningitis, and he orders a spinal tap. The spinal tap rules out meningitis and other infections, but shows significant cranial pressure — and that’s when the fear and horror set in.

“At that point I knew it was an aneurysm or a clot, and I said to the infectious disease doctor, ‘Listen man, we need to fire up that MRI machine immediately. My life depends on it,’” Williams recalls to Yahoo Health.

The MRI images confirm that he has a potentially fatal disease called cerebral venous thrombosis — and no one is more surprised than Williams. The doctor had been researching the condition for 15 years, ever since his first year out of medical school when he treated a pregnant woman suffering from CVT at a local community hospital.

Cerebral venous thrombosis, also commonly referred to as cerebral venous sinus thrombosis, happens when a blood clot forms in the brain’s venous sinuses, blocking blood from draining out of the brain. It’s very rare —only around three to four people in one million get one each year, and it’s three times more common in women, according to a study that appeared in the American Heart Association journal Circulation, with pregnant women and women taking birth control pills being particularly susceptible. Other risk factors include obesity, thrombophilia (a fairly common blood clotting disorder), and being under 40 years of age.

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Williams clearly did not fit the profile. “I’m a fit, skinny male on no medications with no past medical history or family history for this disease, so it was last thing I thought I had,” Williams says. Besides, it would be just too ironic to come down with the disease you’ve devoted so much of your life to studying.

He now believes a perfect storm of factors caused him to develop CVT. “Living in Maui and commuting back to Los Angeles entails some significant trans Pacific flights — which is high-altitude exposure,” he notes. So looking back, “we believe that the frequent high-altitude exposure played a role, as did dehydration and fatigue and the virus I had.” And while it may seem unconceivable that someone so familiar with the disease didn’t immediately recognize it in himself, CVT is tricky to diagnose because it shares symptoms with so many other illnesses, and the symptoms themselves are so variable. Sometimes the onset of the disease is acute, like in Williams’ case, but other times people come in complaining of a mild headache or have no symptoms at all.

Williams’ clot is especially aggressive and deadly, stretching from his jugular vein (located in the neck) to his straight sinus (in the middle of the brain). He is beginning to fall into a coma. His family arrives and he communicates his wishes to them in case he fully loses consciousness and is no longer able to make decisions regarding his care. He tells them that if the doctors think he is dying, he wants a risky surgery called a thrombectomy to remove the clot. The attending neurosurgeon comes to meet with him, bringing both good and bad news. The good news: He has seen 100 cases of CVT — a staggering number for any neurosurgeon, given how rare the disease is — so he knows exactly what he’s doing. The bad news: He recommends a thrombectomy. In other words, Williams is dying.

“I was so sad,” Williams remembers, his voice thick with emotion. “I was 44 years old. I tried to be so healthy. How could this be happening?”

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He has the brain surgery (which is done, strangely enough, through the groin) on July 31, two days after arriving at the hospital. The mortality rate for CVT is 10 to 15 percent, but his clot is particularly aggressive, so he knows the risk is much greater.

When he wakes up after the surgery, the severity of his headache has decreased dramatically, going from a 10 out of 10, to about a 2 out of 10 — telling him the procedure has been successful. The neurosurgeon was able to remove most of the clot, but stopped when the surgery started to get dicey, as Williams had requested before going under. So there is still a bit of a clot left, but the blood-thinning meds are doing their thing to eradicate it. He spends 11 days in the hospital, where he suffers from double vision and has to relearn to walk.

Now, four weeks later, Williams is back home in Venice, recovering, and looking forward to finally being able to hit the waves again. He says he is going to return to studying CVT, now with a whole new perspective, and he continues to marvel at what happened to him.

“Years and years I have spent trying to educate physicians, as well as the public, about this disease,” he says, “and now I sit back and think it’s just too odd and coincidental [that it happens to me].”

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