After almost 10 months of steadily increasing neuro symptoms, KVUE reporter Jenni Lee is finally beginning to feel like herself again.
"It all started [in October of 2016] with me hearing my heartbeat in my ear," Lee said.
That symptom, also known as pulsatile tinnitus, was the beginning of a wave that would lead to other alarming signs like nausea and headaches, forcing her to take a leave of absence from work.
"On April 29, that’s when the double vision started. I couldn’t read the teleprompter," Lee said. "I had to cover one eye to read the teleprompter. I had to ad lib stories. I didn’t know what the interviews were. I had to roll with the punches. After the show, I went to Heart Hospital ER. I did a CT scan and that’s when they said I had Chiari Malformation 1. Your brain is sagging into your spinal cord. Go see a neurologist."
It was a diagnosis that left Lee and her family not only shocked but confused.
"I had no idea what that was. A lot of people don’t know either," she said.
Chiari Malformation 1 is a structural defect in the base of the skull and cerebellum that can affect people in their 20s and 40s. According to the National Institute of Neurological Disorders and Stroke, the condition can be the result of genetic mutations or a maternal diet that lacked certain vitamins or nutrients during fetal development.
"It was a lonely journey initially because there’s not that much information out there about this," she said.
According to the NIH, that’s partly due to the fact that some people born with the condition don’t show symptoms until they are in their adolescent years or adulthood, making it hard to estimate the number of children born with the disorder yearly.
And if Chiari Malformation 1 wasn’t bad enough, Lee also suffered crippling migraines. Both conditions left her confined to a bed in a dark room.
"It was frustrating for my husband … I think he said the worst part for him is that I was bedridden and he couldn’t help at all. He just watched his wife lay in bed suffering."
But when the days seemed like they weren’t going to get any brighter for Lee, a miracle happened.
"The only solution is brain surgery, which doesn’t even solve the problem. It slows the progression of the symptoms, which is called decompression surgery. It’s what I was looking at before my symptoms stopped."
Three weeks ago, Lee said she woke up feeling better. None of her doctors know why she went from consistent pain to none at all.
"It could still come back. The neurosurgeons say it will likely come back, and I will likely need brain surgery," she said.
But until that happens, she’s enjoying having the opportunity to live her life in full again.
"I’m so excited to go back to work! Honestly, I’m bored out of my mind at home," she said.
With the symptoms keeping her activities limited, the timing is perfect. She returned to KVUE to anchor Weekend Daybreak on Saturday, July 29 and Sunday, July 30.
"There’s only so much I can do. I’m excited to get back to work and see all of my friends at work – go back to making a difference by doing stories. It’s my livelihood. I love what I do. I do what I love. I got to get back at it," she added.
In the meantime, she’s counting her blessings and extending her gratitude to the community.
"The outpouring from the community has been tremendous. I do want to thank everyone that has reached out to me. Dozens and dozens of people – church groups have been praying for me. I’m just amazed and beyond grateful. I want to thank everyone who has prayed for me."
Now, she wants to raise awareness and help others who think they might be suffering from the same condition.
"For the people out there that don’t know what they have or don’t know what to do, there are support groups out there to reach out. Please know that you’re not alone."
For more information on Chiari Malformations, go here.
Tune into weekend Daybreak this weekend to see Jenni Lee break down her disorder with her neurologist. The show starts at 7 a.m. Saturday and Sunday.