When I left the rehab unit at Cedars Sinai Hospital in Los Angeles 18 years ago, newly paralyzed and completely freaked out, no one told me that if I didn’t exercise my legs regularly, they would freeze up at the joints and not straighten out. When I followed up with additional rehab work, they made no mention of this, either. So, sure enough, within months, if not weeks, both of my knees, especially the right one, locked in at a 30 to 45-plus degree angle and stayed there. We gave the crookedest leg a name: Crookie.

Many times since then I have been told by internists, neurologists, and even a rehab person or two that contracture — the shortening and tightening of leg muscles and therefore tendons at the knee, hip, or ankle — was an unsolvable problem (contracture of the hand is also not uncommon). You can stretch the affected joint, massage the muscles to loosen them, and even wear cumbersome braces, but the results will be from miniscule change to no change.

Then I met someone who knew what she was talking about.

As clinical director of International Center for Spinal Cord Injury at Kennedy Krieger Institute in Baltimore and also a professor at the Johns Hopkins School of Medicine, Dr. Cristina Sadowsky deals with contractures every day. She laughed when I first told her what others had said about my contractures. She fixes up people all the time.

Contracture is less common among those paralyzed in the last few years, simply because more health workers know about it, but according to Dr. Sadowsky, for people injured for 15-20 years or more, “I’d say that 99 percent have to deal with contracture.” The scary thing about it — at least scary to me — is that it can set in within two weeks of a spinal cord injury. To prevent it from doing so, you have to combat it from Day One.

The point of no return — meaning a contracture that probably won’t respond to any noninvasive therapy — is defined by the geometric angle of your knee or ankle. Anywhere from 90 degrees (i.e., a complete right-angle bend) to 30 degrees means you’re in trouble. At 30 degrees or below, you have choices. There are a fistful of measures you can take and get a positive response.

Contracture generally doesn’t cause pain or prohibit you from living life in a chair — so why bother about it? You’ve got a crooked leg or two — so what? Sadowsky says there are at least three compelling reasons for avoiding them or getting them fixed:

One, contracture alters the mechanics of sitting and lying and can lead to pressure sores or injury. At night, for instance, your legs splay outward and invite knee and ankle hot spots. Beyond pressure sores, your awkwardly positioned legs, say, are much more susceptible to injury. Dr. Sadowsky’s example: You’re lying on the couch with a severely bent knee and your 4-year-old niece decides to hop on for a ride. Crack! Broken bone.

Two, contracture alters the mechanics of transferring, especially with ankle contracture, which results in a dropped foot. Easy to get caught under a car door, especially if your bones are weak, easy to snap. Weak bones in general can prevent you from pursuing any kind of corrective therapy. First order of business: bone density test.

The third reason to address contracture is that it prohibits you from taking advantage of any of the coming technologies that might help you stand and/or walk or engage in standing exercise — standing braces, exoskeletons, gliders, standing chairs and other rehab options not yet invented. In my current condition, the only repositioning I could do is squatting a la Yogi Berra behind home plate.

My Quest for Getting Unbent

It’s the prospect of Reason No. 3 — missing out on new standing technologies — that led me finally take a first step and locate my own rehab specialist, Dr. Suzy Kim, currently at Rancho Los Amigos Rehab Center in beautiful, downtown Downey, Calif. Kim, herself a C7 incomplete quad from a diving accident while in medical school, had the same can-do attitude as Sadowsky. She examined me and announced right off that my level of injury was lower than I had ever been told, close to T12/L1, and this meant there was little chance that my leg and hip muscles would ever respond to functional electrical stimulation.

Now, the good news: In one leg, my left leg, my angle of contracture is such that I could very possibly correct it with a dynamic knee brace — meaning a brace where you can alter the angle and tension of prolonged stretching as your knee becomes more responsive. (There is also a more passive noninvasive therapy, called serial casting, in which you place your knee in a hard cast and replace the cast at a new angle as you improve.) In either case, my right knee, bent at about 45 degrees, wasn’t a candidate. Crookie would need surgery.

Standard contracture surgery involves what Sadowsky calls “Z-plasty,” a term also used in plastic surgery. Basically, a surgeon cuts the contractured tendon in a way that it can stretch out, and properly maintained, stay stretched, so your knee/ankle/hip stays straight. Kim called it “fileting the tendon.” Often the procedure cuts half of the tendon at one end and the other half at the other end, creating less resistance and more elasticity. Find a thick rubber band at home, cut it partially at both ends, and stretch it out. You’ll get the same result and feel like an orthopedic surgeon for a day.

Not knowing exactly how to proceed, I turned to some real-world experts. Mackenzie Clare is a 19-year-old college freshman from Leesburg, Va. A T4 complete para from a car wreck in 2005, she learned all about the value of stretching and standing in rehab. But, like most of us would do, when she got back home she returned to living the life of a kid and slacked off. A few years down the line her hips locked up and she began trying out the available therapies.

First was sustained, rigorous stretching. Under the guidance of Janet Dean, a nurse practitioner working alongside Sadowsky, Mackenzie even attended rehab camp in the summer to stretch and stretch and stretch. It made no appreciable difference. She also tried Botox injections, a common way to relax contracted muscles. Nada. Then they fitted her with “super cushy little leg braces” to slowly loosen her hips, but they led to blisters while sleeping, even while sleeping on her stomach. Cushy or not, she decided, they weren’t for her.

With her mother nudging her to try anything, she started standing upright with rigid full-leg braces on parallel bars. Again, with her contracture, she found this difficult, frustrating, and time consuming. Plus, the possibility of mastering these braces to the point that she could wear them in public mortified her. “I’d rather people stare at my chair than braces or a walker.” Again, for a teenager (and in fact for an old timer like me), this made all the sense in the world.

Surgery worried her, too. First there was the prospect of spending untold hours stretching after surgery. Without a rigorous regimen before school, after school, and on every weekend, there was the possibility that her hip tendons could become rigid again and the whole thing would be a waste of time.

In the end she chose not to have surgery. Her plan is to wait until a “cure” for SCI comes along, then get the surgery to prepare for it. “I wish my hips were straight,” she says, “but I don’t have time to focus on them right now. Maybe I can after college …”

Contracture therapy, either before or after surgery, demands the commitment of someone training for a marathon. But with that commitment, change can come.

Straighter is Better

Jamie Clendening is a 36-year-old new mom living in “the great little town” of Shippensburg, Pa. Born with spina bifida, she had to undergo back surgery three years ago to address her tethered spinal cord, a condition that was inhibiting growth and flexibility. The surgery is called tethered cord release, and it left her paralyzed from L3 down. She is expected to walk again, but for now she uses a wheelchair and waits for nerve tissue to regenerate.

Even though she was educated about the dangers of contracture from the very start, she suffered a setback when an infection put her in bed for 11 months. Along the way she developed pronounced contracture in her right hip, knee and ankle. It not only inhibits her leg movement, it’s painful.

Under the guidance of Sadowsky, she rededicated herself two months ago to strenuous contracture therapy. This involved a number of steps:

• 1. Stretching repeatedly during the day, not just a few minutes in the morning and/or at night;
• 2. Working out daily on a RT300 hand cycle equipped with functional electrical stimulation electrodes to stimulate muscle groups up and down her legs;
• 3. A trip to Kennedy Krieger every three months for Botox injections; and
• 4. Taking the drug, baclofen, for spasticity.

During this intensive two months, Clendening has seen, in her words, “a vast improvement” — greater flexibility in her affected joints and a decrease in pain in her hip. She is very optimistic that if she sticks with her therapy with yeoman dedication, her contracture will be largely gone, or at least significantly improved, in the next six months.

Talking to Clendening, you can sense that she has the right stuff to get the job done — limitless tenacity. Her doctors cannot tell her when she will walk again — the recovery from tethered cord release could be months or even years away. But she wants her legs ready and straight when that moment comes.

Which brings me back to my own case. I may not have Clendening’s tenacity or Clare’s pragmatism, but I am still going to jump into the pool. A month ago, under Kim’s supervision, I started daily therapy on my left knee with a dynamic leg brace. Now at six to eight hours a day, mostly when sleeping, and increasing the angle of tension gradually, I hope to make measurable progress in another month or two. If not, I’m looking at surgery for both knees.

Whether one leg or two, I plan to go under the knife sooner than later. Given my age, I don’t have a lot of time to fool around and I’m anxious to see if any device in the near future can change my life. Post-surgery, I will (hopefully) stretch my two straight legs everyday with the dedication of Clendening, go to bed at night admiring my beautifully unbent legs, and start shopping around for the latest standing gadget du jour.

I’m doing this whole contracture rigmarole for future returns on my investment. I’m betting that something is out there or will soon come my way and give me some change in physical status. Maybe not huge — a partial-weight-bearing standing device, for instance — or maybe something profound, a full exoskeleton that allows me movement I haven’t dared to dream about for 18 years.

Maybe I’ll get a standing wheelchair so I can just stand around, cocktail in hand, chatting it up at the next Hollywood party I weasel my way into. Or … God willing … maybe I’ll casually walk over to the bar in my Robocop-spiffy exoskeleton to order up a refresher. Wouldn’t that be grand?

Resources

People:
• Cristina Sadowsky M.D., Clinical Director, International Center for Spinal Cord Injury, Kennedy Krieger Institute, Baltimore, Md: Sadowsky@kennedykrieger.org
• Janet Dean, MS, RN, CRRN, CRNP, International Center for Spinal Cord Injury, Kennedy Krieger Institute, Baltimore, Md: dean@kennedykrieger.org
• Suzy Kim, M.D., Rancho Los Amigos National Rehabilitation Center and St. Jude Center for Rehabilitation and Wellness: skim5@dhs.lacounty.gov

Devices

• RT 300 Hand Cycle with FES: Restorative Therapies, support@restorative-therapies.com