Sam Nicoll: When a Passive Functional Device Is the Right Choice
February 2020 Issue
As is the experience of many people who face a post-traumatic situation and amputation, Sam Nicoll found herself in a bit of a whirlwind.
Nicoll's trauma occurred just days after delivering her third son when she was diagnosed with Strep A.
"Three days after I had [my son] I was in an ICU at a local hospital," Nicoll says, "and I wasn't sure if I was even going to make it."
She spent a couple of months in the hospital in December 2014 then had numerous surgeries to try and regain function in her left hand, which was damaged by the infection. But it became clear that an amputation would be the best option. In September 2016, Nicoll underwent a left transradial amputation. It was then, like many people in similar situations, that she entered the whirlwind of post-amputation treatment without knowing or understanding her options or the pros and cons that come with each of them.
She was matched with a local prosthetist who fitted her with a myoelectric prosthetic hand in January 2017.
Unfortunately, it was not a good solution for her as she could not get it to function properly. When the hand worked, it worked well. But it had too many glitches that made taking care of a baby and two boys under ten difficult. "For various reasons, some less experienced prosthetists feel compelled to provide the most sophisticated externally powered prosthesis as a first device, rather than pursue a more conventional, measured, and collaborative process that would include provision of all types of prostheses, passive, body-powered, externally powered, and activity-specific," says Tom Passero, CP, founder and clinical advisor at Handspring, Middletown, New York. "This [a more comprehensive] procedure is much more likely to result in a positive outcome."
"One of the issues important to successful prosthetic care, particularly for upper-limb patients, for whom multiple prosthetic devices are indicated and supported as ‘standard practice' in resource materials and clinical journal articles, is that the clinician must listen carefully to patients. The clinician needs to give patients time and information to allow them to understand what they might need and encourage them to ask questions to learn more about their options," says Passero. He continues, "If these exploratory conversations don't happen, patients may be fitted with what the clinician and physician deem to be the best option but does not actually fit patients' lifestyles and functional needs, as was Sam's initial experience."
After two unhappy years with her myoelectric prosthesis, Nicoll started researching her options.
"In the beginning, I wasn't sure I wanted a passive hand because I used to say that it looked creepy," Nicoll says. "But the more I planned to get more comfortable in my situation, I started seeing all the benefits of having something I could just put on that just looked natural. I also, at the time, didn't have any clue, emotionally, how a realistic looking hand would make me feel. It absolutely raised my confidence."
After Nicoll conducted her own research and joined some amputee groups online, a new friend shared insight about her own journey, which gave Nicoll the strength to make some big moves. She decided it was in her best interest to instead be fitted with a passive functional hand.
Nicoll also made the difficult decision to switch prosthetists. She realized that this was a relationship she was going to have for the rest of her life and wanted to make sure she chose the right provider for her and her needs.
She found Handspring through her connections in the groups she joined, and she liked its holistic approach for patients who are in need of specialized care in upper-limb prosthetic rehabilitation.
Passero says he and his clinical team make time to listen to the patient. They then outline all the options and highlight not only what each prosthetic device's capabilities are, but also what its limitations are. And in that way, they are able to manage that user's expectations.
"Tom heard how I was feeling about the myoelectric hand I had and that I loved it when it was working but was frustrated when it was not," Nicoll says. "He also heard me loud and clear that I had really grown to want a passive hand and it was one thing that was really important to me. And so he said to me, ‘This is our goal, this is going to be the first thing we do for you, so let's make it happen.'"
Handspring has seen success, from an insurance reimbursement perspective, when expectations are set properly. Passero states that it is critical to provide a treatment plan that spells out all the steps that will need to be taken over the patient's lifespan. "The idea of a treatment plan, including all of the expected prosthetic technology that will allow the patient to return to an acceptable level of functional rehabilitation, prepares the payer for all requests for authorization that will take place further downstream," says Passero.
After the first meeting with Passero, Nicoll says she felt there was an urgency for everyone at Handspring to make sure she received the passive functional hand she needed.
Unfortunately, Nicoll's insurance company denied her claim four times in the span of one year, but Handspring continued to fight for approval, Nicoll says. "I feel grateful that they fought for me. When I got to Handspring and met the team, Erik Tompkins [CP] was introduced to me as ‘the gentleman who would be guiding me through the process.' He worked diligently to fit me for my new socket and also provided me with a wealth of knowledge. He was beyond supportive and emphasized that their job was to make me happy."
Nicoll was finally fitted with her Össur Livingskin passive functional device in early 2019.
"The whole process in general I found completely fascinating," says Nicoll. "Sitting there watching the artist paint the hand and do the sample, it's just such an incredible process. I love the way it looks; I wear it every single day, as where before it was like, ‘eh, maybe I'll wear the hand, maybe I won't.'"
No one device is going to fit every person in the same way and achieve the same goals it helps another person achieve. Even Nicoll didn't think she wanted something that looked so realistic, but over time learned what she needed for her everyday life and what would allow her to feel complete again.
"I mean for me, I have three boys, so it's easy to throw it on and off and not have to think. It literally met all my needs, and it's functional," she says. "Which is why it kills me that some of these insurance companies don't want to approve [a passive functional prosthesis]. It provides me with stability, it evens me out; I use it for multiple things. For me it's just been life changing because I went from being someone who sometimes used a prosthetic to someone who uses it every single day."
"I'll tell you, this has been everything I could have asked for and more. To be sitting in my car and having my artificial limb on the steering wheel but to feel like it's my hand. I mean it looks so realistic to me, not creepy at all," Nicoll says. "And it does make me feel more confident, it gives me a sense of peace; it's just really life changing for me."
Linda Calabria is a product marketing manager at Össur Americas, Foothill Ranch, California, focusing on the Touch Solutions product line of bionic products.