TULSA, Okla. — A relatively new sleep implant surgery has revolutionized life for a Bixby family after more than a decade of sleepless nights.
Most people either deal with sleep apnea or know someone who does. It’s a disorder that prompts you to stop and start breathing in your sleep.
Taylor Parks, 20, is a bubbly, young adult living in Bixby. She also has down syndrome. When she was about 6 years old, she was diagnosed with obstructive sleep apnea This diagnosis is common for people with down syndrome.
Obstructive sleep apnea is when certain parts of your body, like your nasal cavity, pallet, or tongue, get in the way of being able to take a breath when you’re asleep. The traditional treatment for this condition is a ‘continuous positive airway pressure,’ or ‘CPAP’ mask.
“We tried every single sleep mask,” Taylor’s mom Erin Parks.
Parks said it was tough enough to get her young daughter to keep the big, bulky mask on, but also, “kids with down syndrome, their bridge of their nose is a lot smaller and it’s just kind of a little bit flatter, so the bridge is different, so the mask doesn’t sit on the way that it should.”
Parks joked she could have opened up her own store with all the masks they tried. “We were like what, a night’s sleep? What is that, right?” Parks said as she laughed.
Parks said because of Taylor’s lack of sleep, she would act out or fall asleep during the day. Her nighttime sleep patterns were so messed up, she even started sleepingwalking. Parks had to use a baby monitor well past her daughter’s first few years, so neither one was getting a good night’s rest. “I mean it’s truly like a stop, and then yeah it’s very scary as a parent,” Parks said describing when her daughter would struggle during the night.
Parks said Taylor didn’t sleep through the night until she was around 12 years old. Still, it wasn’t consistent. Eventually, in her early teens, her mom decided to take a break from the masks altogether. “We’re just going to let her get what kind of sleep she can,” her mom explained. However, she knew this wasn’t a long-term fix. Parks said, “when you have sleep apnea and you’re not treating it, it puts a lot of problems with your organs.”
Then at a down syndrome conference in 2019, Parks heard about a surgery to treat obstructive sleep apnea that replaces the need for the CPAP mask. It’s called Inspire. The medical term for it is a ‘hypoglossal nerve stimulator.’
Parks eventually met with ear, nose and throat Dr. Spencer Voth in Tulsa. He specializes in sleep medicine and first performed the surgery about 10 years ago. He currently performs it at the St. Francis Outpatient Health Center. So far, he’s completed the surgery about 70 times. “It’s the only device out there that treats obstructive sleep apnea, surgically, only FDA-approved device,” Voth told FOX23.
FOX23 spoke with a representative with Inspire. He told her when the FDA first approved the device, it was for patients 22 and older. In 2020, the FDA bumped down the approved age to 18. That representative said Taylor was the first 18-year-old to have the procedure done in Oklahoma. She was also the first person with down syndrome in the state to ever undergo the procedure.
When Dr. Voth performed Taylor’s surgery in June 2020, he said it required 3 incisions. He implanted a battery inside her chest that is expected to last at least 11 years before it needs replacement. Now, he said the procedure has improved to just 2 incisions with the same battery life expectancy.
“There is a sensor in the rib cage, along with the battery…that’s implanted into the chest wall, when the sensor senses you breathe in, it tells this battery to create a stimulation which goes to another wire that’s around your hypoglossal nerve and so every time a patent inspires or breathes, it’s pushing the tongue forward and the pallet forward removing the obstruction.”
Dr. Voth said if a CPAP mask isn’t working, like in Taylor’s case, Inspire is the best solution right now for obstructive sleep apnea patients. Other options, he said, for some people include using wires or sutures to change someone’s anatomy or having your tonsils removed.
It is important to know not everyone with sleep apnea can have this surgery.
Dr. Voth said in order to qualify for the procedure:
- · You have to fail at using a CPAP mask
- You need a certain BMI
- · You have to complete a sleep study and sleep endoscopy
- This also only treats obstructive sleep apnea, NOT central sleep apnea
Parks said a downside to the procedure is that Taylor cannot have a chest MRI because of the implanted battery. She’s needed one since having surgery, so they’ve had to work around that.
Using Inspire is now a part of Taylor’s bedtime routine. It’s as easy as turning on your TV. Taylor uses a remote to activate her stimulator and she is good to go for the night. Then, she just turns it off in the morning.
Voth said, “Patients are generally very happy with, spouses and partners are usually ecstatic as well, getting a good night’s sleep is life changing.”
Parks adds getting up in the morning is easier now, Taylor’s sleep-related behavioral problems are gone and there’s no longer any risk of organ damage.
“I have that assurance that she is getting quality sleep and all of the functions of all the organs and things that affect sleep, that she is getting the sleep that she needs,” Parks said.
Parks said Taylor went through about 5 days of tough recovery time post-surgery. She said the hardest part was trying to keep her daughter still while the incision in her neck healed.
Dr. Voth said the improved, two-incision surgery is now less painful with a quicker recovery.
An Inspire representative said this procedure is covered by most insurances and Medicare. Almost 25,000 people have had the surgery.
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