Q. I’m 26 years old, a T4 complete para for eight years. My thighs are skinny due to muscle atrophy, but my lower legs are fairly “normal” looking. Last month I had to spend seven days in bed letting a small scrape heal. During bed rest my legs and feet got super skinny, and I noticed they were about half their usual weight. When the “normal” look of my lower legs returned after my first full day in a chair, I realized it was due to swelling. Is this something I should be concerned about? And if so, is there anything I can do about it?
A. Kristi, chronic swelling of the lower legs is usually referred to as dependent edema, and yes, it is something you should be concerned about. It can lead to serious problems, including pressure ulcers and soft tissue infections like cellulitis. Dependent edema is common in people with SCI and other neurological conditions that affect the muscles. Left unchecked it can get progressively worse. Fortunately, there are ways to reduce and manage edema — the sooner you take steps to control it the better.
Cherisse Tebben, family nurse practitioner and certified wound care nurse at Craig Hospital, explains that when leg muscles flex, they help pump blood back to the heart. When leg muscles aren’t flexing because of SCI or other neurological problems, blood and fluid start to pool in the veins and tissues of the lower leg and cause edema.
Chronic edema puts tension on the skin, causing it to become more fragile and prone to splitting and cracking. Edema also creates pressure that reduces blood flow, which slows delivery of antibodies and healing agents needed to fight infection and heal a wound. This creates an environment where a minor incident such as a scratch or bug bite could lead to cellulitis, or progress into a pressure ulcer.
Tebben cautions that any new swelling — especially if it is in just one leg — or swelling associated with redness, should be immediately evaluated by a doctor to rule out a blood clot, fracture or infection.
To control edema, avoid adding extra salt to food — sodium causes the body to retain fluid. Also be sure to stay properly hydrated to help flush the system. Dehydration causes the body to hold on to fluid and will make edema worse.
Other things that can make edema worse are hot tubs, hot baths and sunburn because they cause a local stress response.
Xiomara Acosta, a registered nurse at Craig Hospital’s outpatient clinic, says that getting regular cardiovascular exercise — if you have the muscle movement — is very helpful in reducing edema. Pushing your chair, riding a handcycle, anything that gets the heart rate going on a regular basis will help push blood through the legs.
Unless advised by a doctor who is well versed in SCI, be wary of taking diuretics like Lasix (drugs that increase urine output) to reduce edema, advises Acosta. “Diuretics disrupt the sodium/potassium balance. I know someone who had Lasix prescribed for edema and he ended up in the hospital because it threw off his sodium and potassium so badly.”
A key to reducing edema is to elevate the legs above the heart whenever possible. Put pillows under the legs while sleeping in bed, lying on the couch, or relaxing in a recliner.
If edema goes away with elevation at night and stays down during the day, your job is done. If it returns during the day, try wearing knee-high compression stockings (about $25 a pair). Put them on when edema is down, in the morning. They won’t help if the legs are already swollen. And they should only be worn during the day, not during sleep.
Compression stockings are rated in mmHg — millimeters of mercury – starting with 15-20 mmHg. Proper fit is important — too loose won’t help and too tight can cause pressure problems. They can be properly measured and purchased over the counter at most medical supply stores and many pharmacies. Tebben says many insurance companies, and Medicare, will pay for compression stockings with a doctor’s prescription.
If 15-20 mmHg compression stockings don’t keep edema at bay, a doctor may prescribe progressively higher grades, all the way up to 50-60 mmHg. Anything over 15-20 mmHg should be properly fitted by a physical therapist or orthotist.
Another option that Tebbin and Acosta use for stubborn cases of edema is a sequential compression pump, also known as a lymphedema pump (around $1,300).The pump consists of sleeves that run from the foot to the knee and compress and deflate in a programmed sequence that gently works edema toward the heart. The pump, a prescription item, is covered by many insurance companies and Medicare. Acosta says Craig uses the Lympha Press Petite Basic care system.
After proper training by a therapist, the person with edema takes the pump home and uses it for one hour every day. “It has been like a miracle for us,” says Acosta. “We see improvement after the first hour. I put one person on the pump who had really bad edema and pressure ulcers that wouldn’t heal for 12 years. His edema went down and his ulcers completely healed within six months.”
Still another option to treat edema is lymphedema massage. “It doesn’t matter if it is paralysis or a lymph problem, we start with neck massage because that is where the lymph system drains,” says Christine Musante, certified lymphedema therapist at John Muir Medical Center in Concord, Calif. “Then we go to the top of the thigh and gently massage in an upward direction and sequentially work our way down to the toes and back up. It is a very gentle upward stretch and release of the skin. Done right, the massage doesn’t create any redness or indentation of the skin or tissue. The massage is so light, most people are skeptical and say, ‘how is this helping?’ The edema reduction by the next session turns them into believers.”
After the massage the therapist applies compression wraps and leaves them on — hopefully until the next session. Three sessions a week is ideal. On average, SCI-related edema usually takes about four weeks of therapy. Part of the treatment is to teach the client or their caregiver how to do the massage and apply the compression bandage in order to manage an edema flare-up.
Staying ahead of the curve is always best, Kristi. Sounds like you are catching your edema at any early stage. Best of luck, and keep us posted.
Advice in this column is supported by Craig Hospital’s SCI Nurse Advice Line, a toll-free hotline for people living with SCI, a community service partially funded by grants from the PVA Education Foundation, Craig H. Nielsen Foundation, and Caring for Colorado Foundation. For non-emergency nursing information about SCI health, call 800/247-0257 between 9 a.m. and 4 p.m. Mountain time. If you have a health question, contact Bob Vogel at firstname.lastname@example.org.
• Guide to levels of compression stockings; www.thelaserveincenter.com/compressionlevels
• Jobst Compression Stockings; www.jobst-usa.com/en/products/page.html
• Lymphedema pump, Lympha Press USA; www.lympha-press.com/petite-basic-system.html
• Sigvaris Compression Stockings; www.sigvaris.com/en/patient/life-for-legs.htm
• T.E.D. Stockinge; www.tedhose.com