Jo Roe, a St. Louis Heroine

Not long ago, Jo Roe broke her leg as she slid in—safe!—to home base in a soft ball game. But that isn’t the injury that led to her amputation. In fact, Jo was already an amputee, and the leg she broke was her prosthetic leg, which she used to effectively steal second on one pitch, then third on the next, before breaking it as she collided with the umpire (who thankfully came out of the situation with nothing broken). Eight years ago, none of this would have been possible. Jo once weighed over five hundred pounds; she was employed in the nursing field, working a second job and going to school, but she knew she had to do something about her health. So, Jo lost three hundred pounds! Things started looking up.

But that was before the day her beloved dog jumped in the shower with her and Jo fell, breaking her foot and ankle in multiple places. The surgery and boot that were supposed to set the fragile bones failed, and they shifted, badly damaging her nerves. The result was a foot that hurt badly all the time for four-and-a-half years. There was shooting pain, sharp constant pain, burning pain, pins-and-needles pain; pressure, cold, heat, blowing air—it all hurt. After getting her weight down under two hundred pounds and beginning to do things she loved, now Jo had to get around on crutches or just stay home. For a while her employer’s disability insurance helped with the bills, but that ran out and she had to get on Medicaid while she waited to qualify for Social Security Disability. The pounds started coming back, the pain pills Jo hated taking made her feel drugged all the time, and there still wasn’t a time when she didn’t hurt. Eventually, depression set in, and Jo says it was the intervention of folks at the South Side Church of God who “saved my life.”

By that time, the situation with Jo’s foot had gotten much worse than she realized. It wasn’t just a pain syndrome caused by damaged nerves: her foot was purple, and some of her new friends realized that wasn’t right. Jo saw Dr. Woods in South County who immediately referred her to a vascular surgeon at St. Anthony’s Medical Center, Dr. Russell Kraeger. A lot of people are understandably shocked and resistant when they hear they need an amputation, but Jo’s response was typical: “Are you serious? I wanted this thing off two years ago!”

Kraeger amputated Jo’s leg below the knee in December 2006. It was on the acute rehab floor at St. Anthony’s that Jo met Manny Rivera, her new prosthetist from P & O Care. When he finally fit her with her first prosthesis she says she thought, “This thing fits like a glove! I have literally no pain.” Jo did go through some of the pain most amputees experience, like phantom sensations of her missing limb, but she says the more she walked the less she noticed. Jo quickly lost the walker they supplied in rehab and asked to be taught how to ride the escalator on their field trip to the South County Mall. Later, she took up softball and volleyball, walks more than three miles a day, and has lost another one hundred ten pounds since her amputation. Jo says the best compliments she and Manny could receive are the times people say to her, “I had no idea you didn’t have a leg!”

Patient Profile: Queen Still Loves to Travel

Patricia Queen has type one diabetes, but that isn’t why she lost her leg below the knee last year. Nineteen years ago she ruptured a disk in her back that nearly severed her sciatic nerve, leaving her paralyzed below her left knee. Still, Pat was able to remain healthy and active, wearing an orthotic brace and flying all over the country for her employer, the United States Postal Service.

It wasn’t until a trip to Las Vegas October 4, 2006, that things started to go terribly wrong. Suddenly, a bone stuck out the bottom of her foot. Pat couldn’t feel the pain, but she did see the blood and went immediately to the emergency room.

Pat was diagnosed with osteomyelitis in her left foot, which is a dangerous infection of the bone, and they treated her with antibiotics. Still, after returning to St. Louis, Ms. Queen’s temperature spiked and she ended up at Missouri Baptist Hospital being seen by vascular surgeon Dr. Ricardo Rao. He removed the dead tissue, but she failed to begin healing properly. So one day he came into her room and said, “I’m going to talk to you just like I would talk to my mother or my sister. You need to have an amputation. We can heal this, but it will take time, and it’s not an issue of when the infection will come back, but when.” Later, a plastic surgeon working with the hospital’s wound care center gave her an even graver assessment. Pat says she saw his face change from concern to horror before he said, “I just pushed a cue tip through a bone in your foot. There is no way we can ever heal this.”

On November 3, 2006, Pat Queen lost her left leg below the knee. But her amputation site began to develop gangrene because of her diabetes, and on January 3, 2007, she had a second amputation, this time just two-and-a-half inches below her knee. With such a short residual limb, it was a challenge for Manny Rivera, her prosthetist with P&O Care, to create a prosthesis that would protect her tibia or shin bone. A short limb is a short lever and so requires more force to do the same amount of work, so when Pat told her therapists she wanted to walk out of the hospital unassisted, they said, “We’re going to have to work you’re butt off to do it.”

On February 22, 2007, Pat stood on both legs for the first time. After four weeks of therapy, she was able to walk on even ground without a cane or walker. Since leaving the hospital, Pat has gained even more strength and has been able to move into a new prosthetic socket that allows her to bend her knee more than at first. Nothing is slowing her down. She has traveled over 30,000 miles, crisscrossing the United States in her car from Maine to the Grand Canyon and many other destinations.

Pat says the initial shock of amputation hit hard, and she definitely had to morn her loss. At 58 years old, she retired last June after 34 with the Postal Service. But it was the long healing process was the most difficult for Pat emotionally: “Getting used to not being able to do everything I wanted to do was the hardest,” she says. “Talking with other amputees online at [the social networking site] Less Than Four has helped more than anything else, and I love reading inMotion” a bi-monthly magazine just for amputees. Recently, Pat has even been able to talk on the phone and encourage some of Manny’s patients struggling with depression.

Pat’s strangest experience since becoming an amputee has been her phantom limb pain. “I hadn’t felt my foot for nineteen years,” she says, “but all of a sudden after the first amputation, I started feeling it itch or cramp. It was really weird, and the doctors couldn’t tell me why the feeling came back even through my leg and foot had been paralyzed.”

That pain has gone down some, but it’s still there a little. What Ms. Queen doesn’t have to deal with is pain from her prosthesis: “Manny’s work has just been amazing. Never ever have I had pain with that leg.” Besides having a prosthesis that fits well, Pat says managing her socks is most important. “I start the day with 6 socks and move up to 7 or more. I met another amputee who complained so much about his leg hurting, but he hadn’t been taught how to manage his socks.”

Pat has her health insurance through the Government Employee Health Association (GEHA), who covered her prosthesis and replacement socket. But Pat has been in touch with other amputees who have been denied coverage because of hidden caps in their group or private policies. So, Pat is supporting the efforts of the Missouri Coalition for People with Limb Loss and talking about the importance of prosthetic parity legislation in Missouri on her profile at http://www.lessthanfour.org/. Just search for Pat Queen.

American Healthfront

P&O Care recently appeared in a segment of American Healthfront on St. Louis NBC affiliate KMOV4. The two minute segment features two of our prosthetists, Jon Wilson and Greg Doerr, as well as two of their patients, Denise and Sharon.

Patient Testimonial: Denise

An amputee talks about her experience with P&O Care and what it's like to be a shoe-shopper and a mother of two.

She Glides on Ice

Earlier this year, P&O Care did a profile in The Care Digest on Janetta Roggers. Since then, these two videos of Janetta have been viewed over 16,000 times online. Always adventurous, Janetta is continuing to experiment with new activities, the latest being soccer.

The Walks the Mall

Hemicorporectomy Prosthesis Discovered

For Michael Mason's last story, he had to travel to Baghdad. His article "Iraq's Medical Meltdown" appeared in the July issue of Discover Magazine. This time, Michael came to St. Louis. He is working on a story about one of the most radical surgeries anyone could undergo: hemicorporectomy, which in plain English means the body gets cut in half, right below the belly button.

Last Friday, Mason was in town interviewing Dr. Frank Johnson at St. Louis University, who performs the procedure, and Jon Wilson, CPO, at P&O Care, who has developed a prosthesis that helps these amputees live normal lives. Saturday, he was on to Kansas City to visit one of their patients living with the device, John Neill. Shaped like a bucket and lined with ROHO cushions to distribute pressure, the prosthesis enables hemicorporectomy, or trans-lumbar, amputees to sit upright, walk with their hands, and even drive a car. Without it, they would be confined to a bed, where they could develop the same sores that often caused their amputation.

Jon Wilson’s abstract, “A New Concept in Prosthetic Interface Design For Hemicorporectomy Amputees Utilizing ROHO Comprehension Therapy: A Case Study for a Prosthetist’s Perspective,” received the prestigious Howard R. Thranhardt Lecture Honorarium for the American Orthotic and Prosthetic Association. Look for Michael Mason's story about hemicorporectomy in the September or October editions of Discover Magazine, which is currently read by about two million people every month.

Chance Encounter Lifts Two Amputees

Fifteen years ago, Denise Hoffmann lost her left leg above the knee during her freshman year of college. But a couple months ago, a chance encounter in the P&O Care waiting room enabled her to encourage a new amputee, Sharon Shutz. Sharon had just lost her leg when she was hit by a car in a St. Louis-area mall parking lot. Seeing and talking with another woman about the same age, with the same AK amputation from trauma and the same difficulties shopping for shoes and jeans, gave Sharon the courage to look forward to her own future with confidence. The encounter also excited Denise, who got to see new technology now available as her old prosthesis was wearing out.

Next month, Denise and Sharon will both be featured in a segment about P&O Care on American Health Front, a half-hour show about advances in medical technology. It will air after the evening news on KMOV 4, September 6, at 6:30 pm. It's the relationship that our prosthetists and orthotists develop with their patients, and sometimes the relationships they develop with each other, that we feel make P&O Care a special place.

The Fight for Prosthetic Parity Heats Up in Missouri and Across the Nation

Do working Americans who pay for health insurance deserve to walk again and return to work if a medical condition lands them with limb loss?

That’s the question before twenty-three state legislatures across the country. Parity laws require health insurance companies to cover prosthetic limbs when deemed medically necessary by a physician, without setting unrealistic price caps or once-in-a-lifetime clauses. When insurers fulfill their obligations, amputees are much less likely to depend on government services like Medicaid.

Medicare, Medicaid, and the Department of Veteran Affairs already provide the coverage required by parity laws. But a movement to cut healthcare costs has led some private insurers here in Missouri to place annual limits on prosthetic coverage, ranging from $1500 to $4000, not quite half the cost of a below-knee prosthesis.

Insurance companies and government payers have always used provider contracts with companies like P&O Care to dictate how much they will pay for different types of prosthetics. But these new caps are imposed directly on patients, regardless of their different needs. Individuals and employers shopping for health coverage should not be expected to know that $1500 is an unreasonable cap on prosthetic coverage. In essence, these insurers are advertising that they cover prosthetics, but when patients need that coverage, it isn’t actually paid for.

One of P&O Care’s own patients, orthopedic surgeon Dr. Matthew Bradley (picture above), has testified before the Oregon State Legislature on behalf of a parity law that seems likely to pass there this year. Now, Matt has plans to use his expertise to help work for parity legislation here in Missouri. Through a new committee, P&O Care is joining with individual citizens, prosthetic providers, and advocacy groups all over the Show Me State to get a parity law passed here in 2008.

Besides Oregon, six other states have already passed prosthetic parity laws, including Colorado Maine, New Hamshire, Rhode Island, California, and Massachusetts, where former Governor Mitt Romney was a key supporter. Missouri Governor Matt Blunt has announced that he is supporting Romney’s bid for President: Does that mean he might support prosthetic parity, too?

Kerth Langeneckert: Trucker, Harley Enthusiast, Amputee

Kerth Langeneckert drives a truck for a living and still loves to ride his Harley Davidson, but in 2005, he was involved in a motorcycle accident that left his left leg badly broken. After surgery, he developed an infection and eventually had to undergo an above-the-knee amputation. He describes himself as “being in a state of depression” after he lost his leg. After his prosthetist Dan Luitjohan made him a new leg, Kerth said, “It’s just good to finally get up out of a wheelchair or crutches and stand on two legs and actually walk on my own.”

Langeneckert’s insurance at the time of his amputation paid for his first prosthesis. His new leg even enabled him to go back to work driving a truck with a manual clutch. After two years, however, his residual limb has shrunk, causing the socket of his prosthesis, the part that fits over his leg, no longer to fit properly. A poorly fitting prosthesis is very painful and can sometimes lead to blisters, infection, and sometimes new amputations or death. Prosthetic limbs do show wear and most amputees experience some change in the size of their residual limbs and require new sockets from time to time. And a new prosthesis may be required, sometimes every 3 to 5 years.

The private insurance Kerth has with this new job won’t pay for him to get a socket replacement so his leg will fit. How was his employer, a trucking company, supposed to know that $2500 is an unreasonable cap on annual prosthetic coverage? Parity legislation (see cover story) is needed in Missouri so working amputees like Kerth Langeneckert can continue to live with the quality of life they deserve.

Nothing Slows Down Janetta

Janetta Rogers is one of the most vibrant and active eight-year-olds you could ever meet. And the fact that she wears two prosthetic legs has never slowed her down. Janetta enjoys strolling the mall, winning summer camp relay races, and even ice skating! Her YouTube videos below have already been viewed over 10,000 times. Her newest venture is playing on a third grade girls basketball team.

Born with a rare condition known as PFFD (Proximal Femoral Focal Deficiency), Janetta has worn a right above-the-knee prosthesis and a left below-the-knee prosthesis since she was one year old. Her prosthetist, Dan Luitjohan, sees her more often than most patients ot make adjustments as she grows.

The Amputee Coalition of America reports that roughly one out of every 200 Americans live with limb loss, with 82% due to diabetes and peripheral vascular disease. Comparatively, congenital-related limb dificiencies happen in only 26 out of every 100,000 births. In the US, this rate has remained stable over the past thirty years, while the rate of trauma-related amputations has decreased and the rate of dysvascular amputations has risen considerably.