Jennifer Lyster had come to accept that horrendous headaches were a way of life. As a child, a teenager and well into adulthood, every time she laughed, she’d have blinding pain. Each time she bent over, she’d experience excruciating and lasting pounding. She would pay the price of sheer agony for hours after cheering her children on at a game.
Doctors were of no help. She was told by her chiropractor that the pain was tension headaches, and was later diagnosed by a Fresno neurologist as having chronic migraines. She tried medication after medication, but nothing worked, even Botox injections every three months.
“I kept telling everyone that something was wrong,” Lyster said. “The pain was non-stop daily, and felt like a sledge hammer bashing into the base of my skull. I began falling, and even broke my wrist in a fall. I had facial numbness and tingling, vision issues, full weakness to the left side of my body.”
Finally, her primary care physician sent her to another neurologist, and this time, she got her answer. After her MRI, Lyster learned that she had Chiari Malformation, where the cerebellum (which is walnut-shaped and should remain in the skull area), was dragging into her spinal canal and causing persistent pain. Brain surgery was her only option.
Armed with a diagnosis, her next step was finding the right neurosurgeon.
The first was located in Fresno, but had never performed this type of surgery. So she went online and found that Cedar Sinai in Los Angeles specialized in the surgery, but after meeting with the surgeon, she learned he had only performed it five times in the last 10 years, with an average success rate.
“My husband (Shane) and I just weren’t comfortable with that,” Lyster continued. “I didn’t want someone practicing on me. This was brain surgery and a very delicate operation.”
Then, quite by chance, through friends she heard about an Oakhurst resident with the same diagnosis and Dr. Lawrence Shuer at Stanford, who had performed this type of surgery an average of 30 to 40 times annually. After meeting with Shuer, and deciding to place herself in his adept hands, Lyster underwent the four-hour surgery on Nov. 5, 2015.
She remained in the neurosurgery ICU ward for five days before returning to her Oakhurst home and young children. The separation was hardest on her youngest, Isabella, who was almost 5 at the time. During the six-month recovery period, Isabella could often be found laying with her mother on the couch.
At 41, Lyster’s life is dramatically different today.
“I still have head pain, but it’s a different kind of pain,” Lyster said. “It’s recovery pain. The Chiari disappeared the day after my surgery, but the recovery period while my nerves grew back together was rough. The headaches are now manageable, becoming fewer with less pain.”
Free from debilitating pain, Lyster, has been able to return to something she loves - floral design - opening her shop, Enchanted Florist, on Sept. 15. Lyster has worked as a floral designer on and off for 16 years.
“The timing seemed so coordinated, like it was God’s plan for it all to come together,” Lyster reflected, “... the opportunity to open a shop at the same time I was healthy enough to return to work. I’ve been given such a gift, a blessing from God. This is not just something I love doing but something I should be doing.”
As for her headaches, she said, “My hope is that one day, I will be headache-free. My friends and I were just talking about this last night, it’s just remarkable what a difference a year can make. I now have mild-to-moderate headaches almost weekly, manageable with 800 milligrams of Ibuprofen ... I’ll take these headaches any day over what I used to experience. Now, I can go every other month or so without one of those bad headaches where I need to take Percocet.”
Lyster once believed being diagnosed with Chiari was a one-in-a-million shot, but has since become aware that it’s actually more common than she had originally thought.
“I’ve met two others up here who have it,” Lyster said. “We’re even starting to see this condition on medical television shows. My advice to anyone who has been diagnosed with Chiari is get a second and third opinion. Listen to your internal instincts and don’t stop. Make sure whatever neurosurgeon you choose has performed many of these specialized surgeries before. You don’t want someone poking around in your brain, practicing on you.”
Even though Lyster admitted that she’s a little uncomfortable telling her story and that all the attention is hard for her, she hopes it may prove beneficial.
“If I can help someone suffering from chronic pain or Chiari to understand that there could be answers out there, then it’s all worth it,” Lyster added. “There’s a reason all this happened, and maybe this shop is my platform to share my story.”
Lyster has been married 13 years to Shane, and has six children. Along with her floral shop, she runs a gift shop, where she sells Shabby Chic refurbished furniture.
Enchanted Florist is located at 40368 Highway 41, Oakhurst, (559) 683-5455.