Until recently, dangers posed by osteoporosis in people with spinal cord injuries were, at best, an afterthought. “Physical Medicine and Rehabilitation didn’t get it,” says Dr. Douglas Garland of Memorial Orthopedic Surgical Group in Long Beach, Calif. “There are a lot of SCI fractures out there, but they are treated at local doctor’s offices or ERs. The numbers never make it into rehab records for study.” Garland recently completed a five-year osteoporosis and SCI study on where bone is lost, how much and how fast. His study challenges current testing methods. Most importantly, it provides an easy way to figure out fracture risk, and hopefully, avoid a break.

Garland’s background gives him unique insight into SCI and osteoporosis. The former director of neurotrauma in the department of surgery at Rancho Los Amigos Rehab Center is in his 30th year as an orthopedic surgeon. His background has driven 20 years of research on SCI and osteoporosis — and his current study ties all his experience together.

“The most crucial piece of information is this: With SCI, your bones get thinner (weaker) from the hip to the knee, and thinner still from the knee to the heel,” Garland says. “The longer you have been injured, the more fragile your bones become.”

Bone strength is expressed in bone mineral density. A “normal,” healthy 30-year-old measures 100 percent BMD. Osteoporosis starts when losing 32 percent of BMD puts you in the “fracture threshold.”  You run the risk of fracture from a fall, a missed transfer or a tumble out of your chair. A loss of 50 percent BMD is considered the “fracture breakpoint.” These really fragile bones can fracture from minor ovements like stretching, a simple fall from the chair, or even rolling over in bed.

In recent years the physical medicine and rehab community has become more aware of osteoporosis and SCI. It is becoming common for PM&R docs to order DEXA bone scans — low energy X-rays that measure BMD at the wrist, spine and hip – to monitor BMD in people with SCI, especially if they have had a fracture. Garland’s research shows this test is flawed. “DEXA scan software is based on postmenopausal women at the spine and hip because that is where they fracture. Also, menopause is systemic —  it affects all bones. But osteoporosis in SCI is regional, specifically from the knee on down, which is where most SCI fractures occur. The SCI spine doesn’t lose bone, and the hip doesn’t lose that much. So we rewrote the DEXA software and began measuring BMD at the knee and compared that to standard DEXA scan results,” says Garland. It turns out standard scans could be putting people at increased risk for fracture.

Garland’s research shows that BMD loss after SCI happens in distinct phases:  acute — the first four months after SCI; subacute — the next 12 months; and chronic — from about one and a half years on. The lumbar spine of the average male para loses about 10 percent BMD in the first one and a half years, then starts to rebuild, eventually reaching normal BMD over the next 10 years. The average male para’s hips lose about 25 percent BMD in the first one and a half years, but then stabilize.  Around 30 percent of paras start to gain back BMD in their hips — at present time no one understands why.

In the acute phase, the knee and lower leg lose bone fast — 1 percent a week for the first four months (16 percent). In the subacute phase, bone loss slows to 1 percent a month for the next 12 months (12 percent). Hence, in the first one and a half years post-injury, the average person with SCI has lost 28 percent of their BMD. In the chronic phase, bone loss slows to about 1 percent a year. This simple approach allows you to figure out BMD near the knee and below by adding up the years from each of three phases. If a person has been injured 20 years, add 16 plus 12 plus 18 for a 46 percent loss of BMD (based on a male para). Women and quads lose more BMD.

Around 30 percent of paras in the study showed some BMD gain. “Why some people gain BMD is still a mystery,” Garland says. “My studies have laid the groundwork, but this is just the beginning. I hope rehab centers and researchers adopt my DEXA software and continue to look for answers.”

Standard DEXA scans, on the other hand, can be dangerous. Say you’ve been hurt 20 years. This kind of scan can show the BMD in your spine is normal and your hips are above the osteoporosis level. You might feel confident that the bones in your legs are fine, no need to worry about falls or tumbles. In reality, though, your lower legs may be near the fracture breakpoint.

Be Careful, Be Safe
Mark Wellman, 49, a well-known climber from Truckee, Calif., has been a T12 para for 27 years. Despite Wellman’s extreme outdoor adventure lifestyle, he has never had a fracture. He would always taunt this writer (a T10 para for 24 years) whenever I tumbled out of my “city chair” with its short frame and small front casters. “Man, you gotta get a mountain man’s chair, it’s safer,” he’d chide. Wellman’s chair has a slightly longer front end (75 degree bend instead 85 degrees like mine), uses bigger front casters and Frog Legs suspension forks. His chair is more stable up front. He also has three degrees of camber on his rear wheels for lateral stability. He never falls out of his chair. After two minor chair tumbles resulted in two separate femur fractures, I’ve adopted Wellman’s advice and added camber and larger front casters. My next chair will have a slightly longer front end.

Wellman’s transfer technique should be gospel. “I treat every transfer like a climbing move. I make sure where my hand holds are, check where my legs are and make sure they won’t twist or get caught before I make my move.”

We can learn from others’ fracture incidents as well. Untuck blankets at the foot of the bed to prevent catching your feet while rolling over. Be mindful not to fall out of your chair while dressing. Use caution when stretching and ranging. Use finger strength to stretch legs and avoid twisting — a femur breaks easily when torque is applied.

Even if you do everything right, fractures can happen. “Anytime there is localized, unusual swelling in the leg, you should probably go in for an X-ray,” Garland says. Anecdotal symptoms following a fracture include sudden unexplained leg spasms, a feeling of unexplained anxiety, and dry mouth after a twist or fall.

Jim Knaub missed a handhold during a wheelchair-to-bed transfer and fell to the floor. “The next morning I was taking a shower and noticed my lower leg was moving, but the knee wasn’t.” Knaub, in Michigan on business, went to a local hospital. X-rays showed a spiral fracture of his tibia and fibula.   “The doctor came in and said because I was paralyzed it may not heal, and since I wasn’t using it anyway, amputation may be the best option. “I said, ‘Nope, not an option!'” The 53-year-old Knaub has been a T12 complete para for 30 years and knows how his body works. He boarded a plane, flew home to Long Beach and went straight to Dr. Garland’s office.

Knaub insisted he still needed to travel for business, so Garland ordered a custom plastic AFO brace that ran from the knee around the ankle to keep bones in place. But after four months, the bones had not healed, so Garland prescribed an Orthofix bone growth stimulator — a device that uses pulses of specific electromagnetic frequencies (PEMF) to stimulate bone growth.

Garland has done PEMF research as well.  His research concluded that bone growth stimulators are a safe and effective way to heal non-unions (bones that aren’t healing). Knaub used the bone growth stimulator, and his leg was fully healed in five months. The effectiveness of bone growth stimulators has not been lost on insurance companies, including Medicare. Most will pay for one if a fracture goes three months without healing.

Choosing the Right Doc
“You have to be your own best advocate and know more about your body than anybody else,” Garland says. “If you have the basic concepts down, you will recognize when a doctor doesn’t know what he’s talking about and when to seek a second opinion, like Jim Knaub did.” Garland says most simple fractures near the knee and lower leg can be splinted by a doctor and will heal on their own. Splints are preferable to casts so you can check skin integrity.

It is important to tell your orthopedist your bones are thin. If surgery is suggested, wherever a surgeon can use an IM Nail (a rod that goes down the center of a bone) is OK — this works on many femur fractures. Anything with a plate and screws is a bad idea. Putting screws into osteoporotic bone is like putting them into balsa wood — they won’t hold.

Candace Cable, 55, from Truckee, Calif., has been a T10 para for 34 years.  Assembling her chair from her SUV, Cable leaned on the frame, it slipped and she fell. “I looked at my left leg and thought, ‘I’m not that limber.’ I moved it and thought, ‘Oh no, I broke my frigging femur.'” Cable put her chair together, transferred and called a neighbor, who took her to a local hospital. “The orthopedic surgeon on call, Dr. Zissimos, was great. He hadn’t worked with SCIs, but he was resourceful. He said, ‘I don’t know exactly what to do but I will read up on SCI fracture treatment and get back to you tomorrow with a plan.'” The next day Dr. Zissmos put an IM rod in Cable’s femur, and the surgery went well.

“A friend of mine, a T10 para, had a broken femur that wouldn’t heal. He finally healed it with an EBI bone growth stimulator. So he lent it to me,” says Cable. “I showed it to Dr. Zissimos, he read up on it, contacted the company and told them I couldn’t wait three months for insurance. I needed it right away.” Cable got her bone growth stimulator immediately. Her femur was fully healed in 12 weeks, and EBI has another orthopedist with firsthand knowledge of its product.

It’s helpful to bring a PM&R doc into the picture when you have questions or concerns about healing a fracture. This writer broke his femur just above the knee from a chair tumble. It was being managed with a splint but the fracture was causing spasticity, which kept pulling it apart. I explained this to Dr. Holly Zhao, and she injected the spastic muscles with Botox, which really quieted them down. But I still had some spasticity. Dr. Zhao explained that even though I couldn’t feel it, pain from the fracture was causing spasms. She maxed my dose of baclofen and put me on a low dose of Oycontin to stop the pain signals. The spasms stopped and the leg healed.

With growing awareness of osteoporosis in SCI, people are asking for ways to treat it. Currently there are no proven treatments. Researchers need to understand the natural history of bone loss in SCI before they can test to see if a treatment works. This is one of many reasons why Garland’s study is so important. In the meantime, for those of us concerned about low BMD, Garland offers this advice: “Get 1200 mg of calcium and 800 IU of vitamin D daily. Bisphosphonates (Boniva, Actonel, Fosamax) may help. There is no proof they reduce fractures, but so far it’s the best we’ve got.”

“Most of all,” he says, “look at your transfers, your chair setup, and ways to avoid fracture risk in your daily life.”

• “Five-Year Longitudinal Bone Evaluations in Individuals With Chronic Complete Spinal Cord Injury,” Journal of Spinal Cord Medicine, 2008; 31(5): 543-550
•  CMF Bone Growth Stimulation, 888/624-5450; apps.djoglobal.com/bonestim
•  Biomet Osteobiologics, EBI, 973/299-9300; www.biomet.com
•  Orthofix, 800/535-4492; www.orthofix.com
•  Physio-Stim bone growth stimulator: www.bonestimulation.com/Physio_Pages/index.html.