Note: the following story includes explicit descriptions of medical conditions and procedures, plus an image and language that some may find disturbing. – Ed.
Kevin L. Hoover
Mad River Union
ARCATA/CAMARILLO – Having survived seven major heart surgeries before age 40 – more than any two or three average people might experience in a lifetime – Jessica McGuinty could reasonably expect to have put her medical adventures behind her.
But now, after battling a chronic heart condition to a standstill, she’s back in the operating room. And this time, it’s brain surgery – for still another frightening and excruciatingly painful disorder.
Family, her fiancé Chris, innumerable friends locally and followers globally are avidly tracking McGuinty’s wrenching, seemingly never-ending health odyssey. Now 43 and the founder and CEO of Arcata-based hair products manufacturer Jessicurl, McGuinty is Canadian by birth, and lives in Camarillo, Calif.
Awash in well-wishes and hospital visits, McGuinty is all too well-practiced at navigating life-threatening afflictions. That’s not making it easier, but neither is the four-inch incision in the back of her head tempering her abundant good humor and unwavering, often salty frankness about her medical details.
She’s just happy to have some prospects for relief with the new direction, even if it’s not immediately clear where it’s all going.
“I have no idea what’s going to happen,” she said cheerily. “It’s all new to me.”
On July 8 at Los Angeles’ Cedars-Sinai Medical Center, part of McGuinty brain was removed. That’s apparently OK – she’s got plenty more. The good news is, she’s feeling a lot better without it.
“It’s been painful,” McGuinty said of the surgery. “But no more painful than my daily migraines.”
McGuinty is being treated for Chiari (pronounced key-ARE-ee) Malformation, a rare disorder in which the cerebellum is partly pushed out of the bottom of the skull. This can cause all kinds of symptoms, many of which McGuinty has suffered from for years – hellish migraine headaches, blurred vision, nausea, dizziness and balance problems and incessant tinnitus. Left untreated, the progressive condition can end in paralysis.
It’s not known how rare Chiari Malformations are, since they are often not recognized or diagnosed. That seems to have been McGuinty’s situation, with her bulging brain causing a range of pains and problems as the undiagnosed condition worsened.
The disorder was revealed during an MRI, one that, it turns out, ought to have been done several years and many doctors ago. Three weeks after her recent diagnosis, she was under the knife.
Finally figuring it out
McGuinty’s condition had apparently been hiding, if not in plain sight, for more than a decade. Her first two-week migraine hit her in 2003, and might have been detected then, had any of her physicians recommended an MRI. Inexplicably, they didn’t.
Her reports of crippling migraines went unheard, and even forced her out of her beloved Humboldt on the assumption that the nearly inescapable moisture and mold here was inducing the relentless cranial agony.
In her new home of Oregon, McGuinty’s doctor said there was “no reason” to get an MRI. Years and innumerable migraine headaches later, the notion was further dismissed by physicians in SoCal, and even by a neurologist.
The routine but revelatory procedure finally came about almost by accident, following more inadequate care for an unrelated malady.
In Oregon, by way of working through the encyclopedia of life-threatening diseases, McGuinty had suffered an exploded appendix. There ensued a range of long-term side effects.
One that manifested over a year later was a large abscess on her hip, which her doctor at the time flippantly joked was her “new love handle,” leaving it effectively untreated.
Eventually, the painful, baseball-sized growth drove her to the Emergency Room, where she learned that the abscess was about to burst outward. With just one more day untreated, the bacteria-laden abscess likely would have burst outward through her skin.
After being hospitalized for a week, having to wear a drain at home for six weeks and as the crushing migraines continued, McGuinty sought out a new primary care doctor. She found one online, Dr. Sara Whatley, and made an appointment.
But the oft-misdiagnosed McGuinty had little confidence that another change of doctors would do any good, and called to cancel her appointment. At that moment, she now knows, her future health and prospects for recovery were hanging by the merest thread.
In a fateful stroke of luck, the doctor’s receptionist talked her out of canceling. She followed through with the appointment, albeit with an air of resignation. And this time, it really was different.
“Definitely do an MRI,” she was advised. McGuinty said she would, but didn’t expect any positive results. “Nothing works,” she told the doctor. “I don’t expect you to have any tricks up your sleeve.”
The new doc accepted the challenge. Within 10 minutes of returning home, McGuinty got a phone call with a referral to a brain surgeon in Ventura.
She turned that down, but pursued a search for a specialist online and found one. And not just any neurosurgeon, but Dr. Wesley King, a leader in treating the various forms of Chiari Malformation.
In a development she now deems “celestial,” she cold-called King’s office and made an appointment. Given King’s stature and popularity, that’s not something that usually happens. Even King was baffled as to how McGuinty had scored quality time with him.
“He’s like the guy,” McGuinty said. “He specializes in this condition. Everything just kind of lined up,” she said.
“All it takes is one person to do their job,” she added, referring to Whatley’s recommending the MRI and neurosurgeon.
King was optimistic, but realistic about McGuinty’s condition responding to treatment. “Nobody has migraines every day,” he told her. “However, the surgery isn’t a cure, it’s a treatment.”
He also told her that the Chiari-induced headaches are even worse than migraines, and deserve their own term. But as cruel fate would have it, she gets both kinds.
As McGuinty told her Facebook followers about King, “He won’t take a patient if he doesn’t think he can improve your symptoms by 80 percent, so THAT IS RAD! We love Dr. King. He’s done this thousands of times. It’s still scary as hell.”
What she called “the nitty-gritty of what they’ll be doing to my big ’ol noggin” is certainly no outpatient procedure. As described by McGuinty:
1. Cut out a piece of bone at the base of my skull to make room for my GIGANTIC brain.
2. Open this part of the brain called the dura to relieve the pressure that has been making everything so painful.
3. Cauterize the "brain tonsils" for which there is also no room. They have also been spilling out of my skull onto my spinal column and they gotta go! (I also didn’t know we had brain tonsils until this. Bodies are weird.) All of this is in the name of increasing the flow of cerebral spinal fluid. Currently it's all blocked up in there and it doesn't flow properly, thus contributing to the pressure and migraines.
4. Patch up that dura on the brain so it has room now. They'll just grab some tissue from somewhere.
5. Potentially shave or remove the C1 vertebrae.
The surgery went without incident, with McGuinty’s burgeoning brain pared back to something like normal proportions.
The next day, the irrepressible redhead impressed King as she does everyone else with sassy, fatalistic humor over her situation.
“I mean, it hurts but you still gotta make ’em laugh, you know?” she said.
"You're a real piece of work,” King told her. “I can't imagine you as a child if this is what you're like the day after brain surgery.”
“And you sir, have just been McGuinty’d,” she thought.
King asked about her pain situation. “It hurts like a mofo in my neck and skull,” she told him.
“Yes of course that's going to hurt, but how about your head?” he asked. “Do you have a migraine?”
“I was like, ‘Holy fuck, no. I don't!’,” she said. “I've not not had a migraine for so long I didn’t even realize that. So that was really super huge.”
Recovery and reflection
As she cautiously enjoys her improved health direction, McGuinty is reflective, but thankful and a little bitter all at the same time.
She got more affirmation that she was doing better when her fiancé told her something she herself couldn’t see. “The sparkle is back in your eyes,” he told her. “You’re back.”
“I do feel different,” she said hopefully. “I’m stoked that there is a light at the end of the tunnel, that I have access to such an awesome surgeon and that Chris is such a fucking amazing fiancé to put up with all my shit,” she said. “He has never once questioned me or disbelieved that someone can have so many migraines.”
But she has regrets – mainly that she didn’t demand more of the caregivers who didn’t recognize her disorder or the means to alleviate it, consigning her to years of thundering migraines and hopelessness.
“I’ve had lots of time to contemplate, ‘why, what’?” she said. “I’m so tired of chasing the cure, so tired of doctors, but I can’t give up,” she said.
“No other doctor ever has thought, ‘Hmm, maybe a fucking MRI would be a good idea since you have migraines every damn day!’ And there it was in black and white. It explains why I didn’t get better when I left Humboldt, why I’ve only gotten worse.”
That’s another bitter pill – that her move away from her moldy-beloved Humboldt home wasn’t necessary. “I moved away from the life I loved,” she lamented.
And, she now speculates, at least some of her many heart surgeries might have been triggered by her brain condition. Newly familiar with the symptoms of her Chiari Malformation, she wonders whether not just the migraines, but even the heart arrhythmia, might have had that as a root cause.
“It makes me so sad that I moved away,” she said. “Could that have been avoided if I’d had an MRI in 2005, when I’d only had the symptoms for two years?”
In still another bizarre wrinkle, McGuinty found out that her first cousin back in Canada also suffers from Chiari Malformation. Not only that, she was diagnosed on the same day as was McGuinty.
“It’s definitely genetic and more common than people think,” she said.
Her cousin’s journey from symptoms to diagnosis to surgery was much more direct than McGuinty’s, which she attributes to Canada’s four-decade old, publicly funded healthcare system. “She put up with this for two years and got her MRI,” McGuinty said. “Mine took 16.”
McGuinty is gaining relief via self-administered CBDs – non-psychoactive cannabis extract. It quells her nausea and makes the surgical pain more bearable.
“I puked my face off in the hospital,” she said. “I hate being stoned and I hate bandwagons, so I was slow to get on the CBD train. But this worked out like a charm.”
Watching, waiting, hoping
“It takes six months for everything to settle out,” McGuinty said about her spinal fluid and brain gaining proper balance. Her recovery will be non-linear, with some days worse than the day before, but with balance gradually returning.
“Everything is so jumbled up, but overall I’m doing great.” she said. “When you get your arms around the whole thing, it’s insane.”
Nonetheless, after suffering for so long, McGuinty is happy for her promising new direction. ”I have to test out my new brain,” she joked.
“This is the best news,” she said, laughing. “You know things have gotten pretty bad when brain surgery is the upside. Now I hurt in a good way, wth post-op pain. I can tell good things are coming.”
Looking at the realistic prospect of her near-lifelong afflictions finally being under control, McGuinty urges celebration, and bristles at the prospect of pity on any level. That’s simply not her jam.
"I don't want it to be, "Oh, poor Jess," she said. "I'm so leery of that."
The main reason McGuinty consented to having her medical issues written up in explicit detail is to keep others from going through similar years of pain and inadequate treatment. If just one person with the disorder gets properly diagnosed, she said, it will be worth it.
“You have to be your own advocate with doctors," she said. "If you feel like there’s something wrong, you have to push them. I didn’t, and finally just lucked out. But there are so many people out there who are undiagnosed.”
The fiery-maned entrepreneur thanked her social media followers for their care and support through her grinding medical travails. “Sorry this is so long and so jarring,” McGuinty told them. “JUST when they fix my damn heart, now brain surgery, eh? Can I ever give you guys a break?