The X-ray image above shows Sierra Neil’s jaw after 75% of the lower bone was removed to prevent the growth of a large tumor caused by fibrous dysplasia. Neil has been through five surgeries to remove the tumor, add a plate to hold her jaw together and now reconstruct the bone with grafts from other parts of her body.
(Photo submitted)
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Sierra Neil, left, is pictured with her daughter Raelynn, husband Jerred and son Carter. Neil learned she has fibrous dysplasia, a condition that causes cartilage-like tissue to develop in the place of normal bone, while she was pregnant with Raelynn.
(Photo submitted)
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Sierra Neil can’t wait for the day she can sink her teeth into a hamburger.
After losing 75% of her lower jaw and undergoing five surgeries, simply munching on a bag of potato chips will be anything but a small victory.
“I don’t know how you could go through something like this and not change in one way or another,” Neil said.
What began with jaw pain led Neil through a three-year journey of seeking a diagnosis, finding appropriate surgeons and fighting insurance companies.
“From the gate, it’s been a nightmare,” she said.
Neil, a 2008 Marysville High School graduate who lives in Union County with her family, said she first noticed something was wrong about four years ago, while she was pregnant with her second child, a daughter.
After experiencing mouth pain, she went to the dentist’s office, where her mother worked, for a check-up. Neil said they found that an area of her gums was “dark purple,” and she felt numbness in her lips.
While the symptoms were worrisome, Neil said the pain was subsiding so she decided to focus on her pregnancy and address her mouth after her daughter was born.
As it turns out, Neil said she was no longer in pain because a large tumor had eaten through the nerve endings in her lower jaw.
An initial biopsy led doctors to believe that the tumor was not cancerous and could be removed without complications.
Soon after, though, Neil said she received another call alerting her that the tumor was growing quickly enough that doctors were concerned it could move toward her neck, damage tissue and lead to more severe problems.
An oral and facial surgeon in central Ohio determined three quarters of her jaw and nine teeth would need to be removed. The tumor had grown in a way that essentially split Neil’s jaw in half, meaning a plate would also need to be added to hold her mouth together.
After the first surgery, Neil said the plan was to undergo another to reconstruct her jaw with bone grafts from her hip, then get permanent implants to replace her lost teeth.
While she prepared for the process ahead, Neil said she was desperate to put a name to the condition that was afflicting her.
Ultimately, doctors diagnosed her with fibrous dysplasia, a condition that causes fibrous or cartilage-like tissue to develop in the place of normal bone. Neil said hormonal changes during her pregnancy triggered her body to create the fibrous tissue that made up the tumor in her jaw.
“When I got the diagnosis, I was ecstatic because I at least had a name for what I had,” she said.
Still, Neil said there was a difficult journey ahead of her.
Trouble communicating with her initial surgeon and conflicting diagnoses from his office and Ohio State’s Head and Neck Oncology Program led her to seek treatment elsewhere – eventually, a specialist in North Carolina.
Although the specialist created a clearer treatment plan for Neil, she said it was complicated by the fact that her insurance company does not work with oral and facial surgeons.
After applying for a credit card specifically for medical procedures to cover the cost of her first two surgeries in Ohio, Neil said her doctor in North Carolina helped her fill out paperwork to allow him to become in-network under her coverage.
Neil said her insurance company initially communicated that surgeries completed would be covered.
After one reconstructive surgery, Neil said the insurance company reimbursed just $1,200 of a $30,000 procedure.
She said the insurance provider did not communicate exactly why her claim was denied but said it was initially approved because the procedure is covered except for when it is “placed” in the mouth area.
“Had it been anywhere else on my body, it would have been approved,” she said.
Neil said this led her to believe the insurance company classifies her surgeries as cosmetic, rather than medically necessary, simply because they involve rebuilding her face.
She said she is thankful that the surgeon is “doing the leg work” in helping her with a second appeal for one of her most recent surgeries but she isn’t sure it will have the outcome she desires.
“It’s a waiting game,” Neil said.
Neil said financial hurdles were only one of many things she had to overcome following her surgery.
She said she has spent a total of one year on a completely liquid diet, sometimes so sick of drinking fruit-flavored protein shakes that she resorted to blending pizza or a Big Mac.
Between a restricted diet and difficulty eating, Neil said she avoided sharing meals with friends or family.
Beyond that, she said feelings of depression were compounded by a struggle to adjust to seeing a new face in the mirror.
“I didn’t want to go anywhere because I couldn’t eat anything. I didn’t want to go out in public because I didn’t want anyone to see me,” she said.
Neil also worried about missing her baby daughter and her son’s childhood, who were only 3 months old and 3 years old at the time of her first surgery, while she worked toward her own physical and mental recovery.
“I felt like I missed a lot,” she said. “I was there, I just don’t remember it. It’s gone by in such a blur.”
Neil said she and her husband were always open and honest with their children about her health struggles, though it pained her to see them share her sadness.
“It’s heartbreaking when you hear your kid go, ‘Mommy, you have another surgery?’” Neil said.
Neil said she is thankful for a family that did all they could to support her, but she still often felt lonely and isolated, especially during the COVID-19 pandemic.
“I definitely went through depression and the constant feeling like we’re one step closer and then getting knocked back three more steps, that wears on you,” Neil said.
Near the one-year anniversary of her first surgery, Neil decided to share her story online.
She turned to YouTube to make videos explaining her symptoms, diagnosis, treatment and healing process.
“Nobody talks about that stuff because it’s sad,” she said.
Neil, though, wanted to balance the sadness with a dose of happiness.
Along with longer videos diving into her health, she posts shorter daily videos sharing positive messages. Neil, who was previously a high school American Sign Language teacher, said she was inspired by a gift from her students when she left for her first surgery – a positivity jar filled with uplifting and funny messages.
Over the past several years, Neil has found a community of people with similar experiences and made online friends living as far as Canada and the UK.
She has more than 900 subscribers to her online channel, Sierra CC Michelle, and her videos have more than 170,000 views.
Neil said her online community is just one of the comforts she’s leaning on as she continues to heal.
Now, she said she is focusing on being a stay-at-home mom and making up for what she feels like was lost time with her children.
Over time, Neil said she has learned to laugh again and find positivity even in painful situations, motivated by an inspirational phrase she stumbled upon – of course – on the internet: “You either get bitter or you get better.”
As she approaches her final surgery on Monday, Neil said she is ready to “put this negative part behind me” and use her story to uplift others.
“I’ve been in that deep dark place and don’t ever want to go back,” Neil said. “It’s changed me in a way where I look at life differently.”