What should you do when you have a chronic, non-healing wound? I was faced with this life-threatening dilemma recently and had to undergo three major surgeries and spend six months in bed to close the wound.
Most of us seek out wound care specialists or clinics when a wound won’t heal. Treatment usually begins with bed rest or offloading, as if pressure is the sole cause and relieving pressure is the only remedy. Specialists often focus on topical treatments rather than doing a complete health history, lab tests, imaging procedures and nutritional screening to get to the underlying causes of non-healing wounds associated with spinal cord injury. But another approach is to take responsibility for your own care.
This does not mean that you are qualified to act as a doctor simply because you have had wounds. It means you must read, study, question nurses and doctors, and talk to others with SCI who have had the same problems in order to understand the underlying factors involved in skin breakdown and healing. Then you must seek out qualified nurses, doctors and other healthcare specialists with experience in treating SCI-related wounds. A comprehensive team approach is ideal.
Depending on severity, non-healing wounds sometimes require flap surgery — a range of reconstructive surgery options that require a plastic surgeon. While bed rest and offloading are critical to closing the wound, a more comprehensive protocol that ensures adequate blood supply, protein-rich nutrition, antibiotics, proper positioning, cleanliness, and a home support team is also required. The importance of all of these factors cannot be overstated, as evidenced by the relatively high failure rate of flap surgery.
Sometimes flap surgeries fail due to untreated underlying causes, such as undiagnosed osteomyelitis, or bone infection. Dr. Bruce Ruben, who owns and operates Encompass Healthcare and Wound Medicine in West Bloomfield, Michigan, is known for finding and treating underlying causes, not just symptoms. Other doctors often refer their patients with non-healing wounds to his clinic, which is known for attention to comprehensive care and complete wheelchair accessibility (see resources). Ruben has seen more than his share of osteomyelitis cases, but does not perform flap surgery himself.
While initial wound appearance may occur without osteomyelitis, Ruben says serious wounds often return because of the real underlying problem — bone infection. “When infection in the underlying bone is active, your body seeks a way to protect your life,” he says. “A sinus will open and wall itself off to get rid of the threat. That small superficial sore becomes the drainage port, your body’s way of expelling the enemy. But a wound will not heal and stay healed over infected bone. This is why aggressive IV infusion for several weeks before, and sometimes after, flap surgery is critical.”
Ruben says that even after active infection leaves, bacteria can remain dormant in bone marrow for many years. When our immune system is overtaxed for whatever reason, the dormant bacteria can “flare up,” become active once again, and another wound will appear, often in the same area.
A Classic Case
Mike Franz, 33, who has lived with C6 quadriplegia since 2001, experienced his first pressure ulcer three years post injury. “It was maybe nickel or quarter-size, only a few millimeters deep. There was some drainage, but it would go away with whatever the doctor prescribed — Santyl and a dressing, usually. Maybe Prisma, a collagen-enhancing wafer. But it came back every two or three years, even though I used a ROHO cushion and forced myself to take occasional down time.”
In 2014, the wound reappeared again. Same place — the right ischium — and same size. “I went to my usual doc, he treated it the same way. By Christmas it got a little worse. I wasn’t too concerned but decided to go to a different wound care clinic in a local hospital [Pontiac, Michigan] for another opinion. After that doc examined me, he said the wound was way worse than I had been told. I wanted to try hyperbaric oxygen therapy, but he said I wasn’t a candidate.”
The doctor began debriding and cleaning the wound. Over the next couple of weeks, it grew larger and deeper, which often happens with surgical debridement. “Then it began to tunnel and eventually went all the way to the bone,” says Franz. A wound vac was ineffective. His doc said he could do flap surgery and it would take three to four weeks to recover. “That didn’t sound right to me,” says Franz. “I had read at least eight weeks.” He decided to get a third opinion.
He went to Ruben, who told him he most likely had an underlying bone infection. “He was the first to suggest the bone could be infected,” says Franz. “I eventually decided to get a fourth opinion, and ended up going to a doctor from the University of Michigan for a biopsy and debridement surgery in May 2015, and sure enough, the bone was infected.”
His latest doctor prescribed IV Vancomycin for about four weeks prior to flap surgery and several weeks after. The wound, much larger now, required advancement flap surgery, where muscle and intact blood supply is slid from the back of the thigh and “advanced” to the ischial area to fill the open wound. After a week on a Clinitron sand bed in the hospital, Franz went home to spend another 10 weeks on an alternating air pressure mattress, with home health care nurse visits and help from his mother and brother. It has been about three years since the operation, and so far, no more problems.
“I learned my lesson,” says Franz. “You have to be super vigilant. If possible, get multiple opinions. My first doc wasn’t doing a good enough job. The second discovered it was much worse than we thought. The third, Dr. Ruben, said it was a bone infection. He was the only one to listen to me and my aides. The others would always say pressure, pressure, pressure. We knew something else was going on, too. Docs do make mistakes. You have to learn all you can and be an advocate for yourself. This is no minor procedure. It’s a big deal.
Recurring Flap Surgeries
Pete Smith, 67, a T4-5 para from the greater Dallas, Texas, area, has been a wheelchair user since he was injured in 1978, but he didn’t have a pressure sore until 2004. Since then, it has been one problem after another. “I’ve spent every summer in the hospital for the last seven years. I’m hoping to make it safely through this summer.”
With multiple flap surgeries under his belt, Smith finds it difficult to separate one from another, but they have one thing in common. With the exception of his first surgery in 2004, none of them lasted more than a couple of years. Complicating underlying causes included a broken leg, a broken foot and a fluid-filled hydrocele on his scrotum. Secondary complications from SCI often cause us to compensate while sitting. Altered posture can redistribute pressure and lead to a new pressure wound. And yes, Smith also had recurring osteomyelitis.
After discovering his first wound in 2004 — he noticed blood on his underwear — he went to a wound care clinic. “I didn’t even know I was sick or infected or had a wound on my right ischial area. It was an opening the size of a fingertip, but when the nurse probed it, she gasped, ‘Oh my God, I can put this in all the way to the bone.’ By the time they debrided it, I had a wound the size of my fist.”
They tried a PICC line for IV antibiotics, and a wound vac. “The seal on the wound vac kept coming off when I was on the toilet, so I had to have a colostomy just to keep it clean,” says Smith. According to Ruben, a wound vac rarely works on an area that is not static and unmovable and is also contraindicated when osteomyelitis is present.
Eventually, flap surgery was followed by weeks in a Clinitron bed for complete healing. “That first one in 2004 stayed healed until 2010,” says Smith. “Then it failed, and I had to have three surgeries from 2010 until 2011.” Since that time there have been more flap surgeries.
Why so many? Besides underlying complications, Smith has always been active and a hard worker. As a geologist, he would spend hours at his computer without moving, glued to his screen. “Once I spent 36 hours straight without sleeping until I got the work done. Another time, on vacation, I drove 24 hours straight through because my wife was anxious to get home. Let’s face it, I was stupid,” he says.
In his case, continuous pressure was a definite cause, since it drove vital oxygen-carrying blood out of the fleshy area over the bone, causing prolonged cell death. He tried a custom RIDE cushion, which is made of a molded, firm material to offload vulnerable areas, but it wasn’t comfortable for him as an active para. Sure enough, he got a sore in a new area. His therapists insisted he go to a power chair with tilt in space. He resisted but finally gave in.
Even with his history of recurring wounds and surgeries, Smith is grateful. “I love the idea of sharing all this,” he says, “if it can help others.”
When Things Go Right
Sometimes osteomyelitis is not a factor. Jenn Wolff, 47, of Waverly, Iowa, became a T7-L2 para from a spinal tumor and surgeries in 2003 and 2007. In August of 2017, she broke her right femur, which required a brace. Swelling and the weight of the brace changed her positioning, especially when transferring. In September, she noticed a wound on her right ischial area about 2 centimeters in diameter by 3
centimeters deep. “My wound doctor packed it with Aquacel antibiotic packing, we tried Medihoney, and a wound vac — but none of it was working.”
Since she had gone to the Mayo Clinic in Rochester, Minnesota, for her spinal tumor, she returned there in March 2018 for an MRI. No bone infection was detected, so she went home to Waverly and consulted with a plastic surgeon at the University of Iowa. “We talked about surgery, but we had really bad communication about how to care for the wound after surgery. I decided to go back to Mayo for a second opinion.”
Once at Mayo, things started going right. “Dr. Basel Sharaf and his staff were really good. They had me see a nutritionist, go to a wheelchair seating clinic, see a nurse specialist in SCI and get a colostomy for cleanliness. I chose a permanent one. The wound actually healed a little prior to surgery because of it,” she says.
She had surgery at Mayo in July. A wound culture at that time found E. coli, so they inserted antibiotic beads during surgery and followed up with IV antibiotics for a week while she was in a Dolphin bed (made by Joerns, see resources). Mayo has satellite clinics, so she was transferred to transitional care in New Prague, Minnesota, for another five weeks on a Dolphin bed. “The place itself did a fabulous job,” she says. When Wolff went home, to continue her healing she put an alternating pressure overlay on top of her memory-foam mattress. She is currently on a gradual return-to-sitting protocol.
“I learned that what worked for me was not spending so much time on the toilet [the colostomy helped reduce pressure and fecal bacteria]. Also, following the protocol — calculating protein needs, taking a nutritional supplement called Juven that’s specifically formulated to support wound healing, staying off the wound area and opting for flap surgery when it seemed the best option. Hopefully, I’m at the end of this. I’m healthier than I’ve been in a long time. I want to go back to work, but I want to take time for myself, too — take time to heal, go to physical therapy and regain strength.”
Laurie Rappl, 61, of Simpsonville, South Carolina, has been a T12 paraplegic for 38 years. Prior to her 1980 injury she got her doctorate in physical therapy and later became a certified wound specialist. She knows wound care clinics from the inside out. “They have little incentive to try alternate therapies,” she says. “They go with products they can get reimbursed for. But sometimes alternate treatments work.”
Having both personal and professional experience with wounds, Rappl is a proponent of not only certain alternate therapies, but also of alternating different therapies. The trick is knowing which therapies work best on different stages of a wound.
Like others in this story, she developed a pressure sore while fighting off complications. In 2017, breast cancer in July was followed by a broken femur in September and a large coccyx wound in November. “My body was weak from chemo, and lying on my back drove pressure to my coccyx. I never thought about it but always checked my ischials. Then I discovered the coccyx wound.”
Luckily, there was no bone infection. She had the wound surgically debrided, then went on home healthcare three times per week, with three weeks of wound vac, one week of platelet-rich plasma treatments and another three weeks of wound vac. “Eventually it got small, with minimal drainage, so we finished it off with collagen dressings, which works well for final healing, but sometimes takes longer than you would think. PRP is a gel (see resources). A nurse friend drew my blood, and I centrifuged it with home equipment, then coated the wound bed, filling up the cavity using a wide-mouth syringe.”
When she first noticed the wound, she said she was weaker than she had ever been. But she made wise choices and stuck to her protocol. “No way that wound should have healed in five months, but it did,” she says. Flap surgery was not needed.
PRP therapy is not currently reimbursable by Medicare, so only forward-thinking wound clinics might be willing to try it. As an experienced professional, Rappl directed her own care at home. “What worked for me was eating lots of protein and taking a nutritional supplement, offloading and alternating treatments — to keep the healing moving forward.”
This sampling of case histories illustrates that what works for one person may not work for another. Healing chronic wounds can be difficult, frustrating and very time-consuming. But with diligence, persistence, attention to underlying causes, educating yourself and seeking out qualified specialists and best options for treatment, it is possible to close wounds and keep them closed — and get back to living an active life.
• “Lessons Learned From My Wound Care Journey,” newmobility.com/2018/05/flap-surgery-journey/
• Clinitron Bed, hill-rom.com/usa/Products/Category/Hospital-Beds/Clinitron-RiteHite-Air-Fluidized-Beds
• Dolphin Bed, joerns.com/product/2457/Dolphin-FIS%C2%AE.aspx
• Encompass Healthcare, encompasshealthcare.com; 248/642-9800
• Flap Surgery, ncbi.nlm.nih.gov/pmc/articles/PMC4511039/
• Prisma (Collagen), woundsource.com/product/promogran-prisma-matrix
• Protein for Wound Healing, optiderma.com/articles/wound-healing-foods-supplements
• PRP and Wound Healing, ncbi.nlm.nih.gov/pubmed/25179658
• Santyl (ointment), santyl.com