Earlier this month, doctors in New York gave Wichita amputee Sondra Stieber a choice for her new bionic arm: she could look like a high-tech robot by simply sporting her sleek new carbon fiber arm or she could cover it with a flesh-colored glove that she could even paint to pretend she has fingernails.
“Heck, no,” she said, refusing the more natural-looking option. “I want it to look as ‘Star Wars’ as possible.”
That’s because she wants people to notice, ask questions and learn about the revolutionary procedure that is changing her life — one that she and her medical team at Ascension Via Christi hope can now benefit others in the area and beyond.
“It’s a game-changer for amputees,” said Trina Shockey, an Ascension physical therapist.
An Ascension team had been working with Stieber following her 2018 amputation when microsurgeon Joshua Linnell learned about osseointegration, a procedure that inserts a metal implant into a bone; in Steiber’s case, near her elbow. The implant becomes a permanent part of a patient’s body.
Then a myoelectric arm and hand can attach to the implant. The wrist moves along with each finger of the hand — including the thumb, which can move in an opposable way — for 14 different grips.
Physician S. Robert Rozbruch, the director of New York’s Hospital for Special Surgery Limb Salvage and Amputation Reconstruction Center, has been performing the procedure on people with leg amputations for several years. Stieber’s procedure is only the second time he did it for someone whose arm was amputated, and the technology already is more advanced than it was for the first one a year ago.
With the help of a sensor pack she wears on her upper arm, Stieber controls the bionic arm with her mind.
“Technically, it makes me a cyborg,” she said. She often giggles when discussing being a cyborg. “You’re part human, part machine.”
Though she’s already been on a long road to get the prosthesis, Stieber still has a long way to go in learning to use it, but she has help.
Accompanying her to New York was Ascension occupational therapy assistant Leanne Bath.
“It’s all about just trying to get functionality back and for her to able to achieve what she wants to achieve with it,” Bath said.
With the training she received in New York, Bath also will help colleagues along with helping Stieber.
“We have to kind of learn with her,” said Ascension occupational therapist Mike Reynolds.
“We can’t reach into our little bag of tricks because we don’t have any tricks,” he said of dealing with this new prosthesis. “We don’t even have a bag.”
They’re eager to try.
“It just completely opens up the possibility for future patients,” Reynolds said.
Stieber said she already knows of a double-amputee child outside of Wichita whose parents are watching what happens with her. She said they can’t travel regularly to New York for follow-up therapy after a prosthetic procedure but could come to Wichita.
With her willingness to share information about her new prosthesis and her drive to succeed with it, all of Stieber’s therapists agree that she is the ideal patient for it.
As Shockey put it, “It couldn’t have gone to a better person.”
A shot then an avalanche
Stieber’s amputation and adventure into cyborgland are merely the latest twists in her eventful life.
The former Haysville science teacher has eight children and two step-children. During summers and other breaks from school, she used to travel to places such as Central America and Israel to teach.
During a 2008 teaching trip to Israel, a U.S. marine shot Stieber, mistaking her for a threat. That set off an avalanche of medical problems, though Stieber didn’t immediately know it. A surgeon opted to leave in the bullet, and Stieber recovered.
An avid surfer, she was hitting the waves while on a combination vacation and humanitarian trip to Central America in 2017. The bullet dislodged, and the avalanche started. A massive hernia resulted from emergency surgery in Guatemala. At one point, Stieber said she was so sick, she dropped to 81 pounds. Bedridden, she said she was “just every possible thing but dead.”
While recovering, she fell out of bed and broke her clavicle. She was told to isolate her movements, and it would heal on its own. When Stieber’s hand started turning cold and purple, she didn’t think much of it because she has lupus and Raynaud’s syndrome, which sometimes cause that to happen.
By the time she knew something else what wrong, Stieber had developed hundreds of microscopic blood clots in her arms. Doctors began rounds of vascular surgeries.
“On the eighth surgery, my body just . . . said, ‘Enough.’ ”
Over several days, doctors tried to save her arm, but Stieber begged them to stop.
“It was so painful, I wanted to lose my arm. I could not imagine why they were torturing me and keeping it on. It was gangrenous.”
Stieber said amputation was a relief.
“Every day since then has just been about seeing what I could do next.”
A miraculous moment
Stieber told her therapists her goal was to get back on a surfboard.
“I love when a patient comes in, and I can tell they’re a real go-getter because that makes my job a lot easier,” Shockey said. However, she said, “I knew we had a long way to go before we could surf, that’s for sure.”
This was before the bionic arm was even an option. Shockey’s goal was to help strengthen Stieber, whose foot would drop due to previous strokes — she suffered a number before her lupus was diagnosed — and cause her to trip and fall. Shockey said even doing rehabilitation would cause stumbling issues because “that was her neurological system trying to keep up with all these changes.”
Stieber received a traditional prosthesis, which she describes as a barbaric hook that was inflexible, uncomfortable and could cause sores and infections.
She learned of the bionic arm, and the Ascension team swung into gear to get her ready.
Reynolds began tinkering with devices to help Stieber prepare for the arm. She said the New York doctors were so amazed at what he came up with, they requested one to keep.
The bionic arm is more than 7 pounds — compared to the average 3 pounds a lower arm weighs — which Shockey worried would be an issue.
“I half pictured them putting this 7-pound limb on her and her falling over.”
Instead, something miraculous happened.
“The minute they put it on her, it was like that’s what she needed. It’s part of her,” Shockey said. “I’ve never heard an amputee put on a regular prosthesis and tell me it felt like a part of them.”
After Stieber returned from New York on Wednesday, Shockey retested her balance with her new arm.
Previously, Stieber scored in the teens on a balance scale with a total possible score of 24. With intense therapy, she might hit 20. With her new arm, Shockey said Stieber scored 23.
“She gives me a lot of credit for that, but I think maybe we just needed to put an arm on it.”
Now, Stieber’s biggest battle is with relaxation. After she gets the bionic arm calibrated, relaxation is the key to getting her hand to do what she wants.
“If I’m not relaxed, all kinds of nerves fire,” Stieber said.
The result: Her bionic hand spins in circles with a little whirring noise.
“But if I relax and think, ‘Open hand,’ it just opens my hand.’ . . . So what I’m really doing is I’m training the arm, and the arm has artificial intelligence. Pretty soon, it learns that signal so well.”
Not soon enough. The other night, Stieber was dining out with family members, showing off how she could use the salt-and-pepper shakers. She said it’s hard to both relax and carry on a conversation, though, so while she succeeded with the salt, she couldn’t let go of the pepper. About that time, they had to change tables, so Stieber had to take the pepper with her.
Most people take for granted something as simple as shaking pepper, but Stieber said it’s about half a dozen isolated steps.
“Reach out, grasp it, pick it up, twist it, twist it back.”
Then there’s setting it back down.
“Eventually, I relaxed enough that I could think, OK, open my hands and drop the pepper.”
Physical and technological challenges aren’t Stieber’s only hurdles. Another huge one is her medical bills, which she said she will be paying for the rest of her life. She’d already accumulated much medical debt — more than a couple hundred thousand dollars, and that’s with some doctors donating their time — when the opportunity for the bionic arm arose.
Insurance paid for the first part of her procedure — the implant — but it wouldn’t pay for the arm.
A couple of friends, who want to remain anonymous, paid the last $53,000 to make the arm possible. Stieber’s gratitude and relief overcame her.
“I couldn’t stop crying,” she said. “I cried for two days.”
Now she wants to fight so others like her can get help.
“I don’t want anybody to have that crude, painful hook anymore. When this technology is out there, it doesn’t make sense to give somebody that awful device.”
She’s training to be an advocate for the Amputee Coalition of America, and she’s also an unofficial ambassador for the bionic arm.
Stieber said some people in her life have heard enough about her arm, which she said she understands. She said with her excitement and fear before she left for New York and with her battle to receive insurance, it was all she could talk about.
“It’s kind of like you’re on a political mission. . . . This isn’t what amputees deserve.”
Stieber said it’s almost universally taboo to look at someone’s missing limb or prosthesis, but that’s why she wanted hers to stand out — to make it accessible so it will be OK to have a discussion about it.
“I wanted to not try to cosmetically look like something other than an amputee. I’m pretty proud of being an amputee. I mean, it’s my story.”