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Camp Hope - Youngest burn survivors help prove that massage heals

As Nancy Keeney Smith can tell you, life can change in a split second.

On November 18, 1986, a typically cool and sunny late-autumn day in Gainesville, Florida, Smith, then 29, was riding her bike to work. Life was good—Smith was recently married, and had a job she liked as a disk jockey at a local radio station.

Without warning, a school bus driving on the shared road made an illegal turn into the bike lane, knocking Smith over, and dragged her some 60 feet down the paved road. The bus demolished her bike, and the friction from the road tore the skin from her left leg in a severe case of burn-like “road rash.”

With her husband of one-and-a-half years by her side, Smith spent the next six weeks in the burn unit of Shands Hospital at the University of Florida where she began the first of more than 30 surgeries, mostly skin grafts. She also underwent physical therapy and debridement—an immensely painful procedure where the non-living skin is surgically and chemically removed so that the skin underneath might have a chance to live.

Once home, Smith’s life returned to quasi-normal—she was able to stop the narcotic pain medication, she finished the physical therapy for range of motion, and she returned to work, although this time in marketing, which was less stressful than disk jockeying.

Normalcy returned with a vengeance with the birth of her children—a son in 1990 and a daughter in 1992. However, by this time, the grafted skin on her left leg had caused chronic lymphedema—swelling from accumulated lymphatic fluid. The doctors’ only recommendation was bulky compression garments and several hours of bed rest a day, a tall order for a working mother of two young children.

In frustration, Smith turned to a friend, a personal trainer who was also a student at the Florida School of Massage, for exercise suggestions. The friend, who had just taken a class in sports flushing (a drainage technique), had a better idea. She asked Smith if she would be a case study for her.

Smith hesitated at first. “With traumatic scarring, you’re very conscious of anyone outside your personal sphere seeing your injury,” says Smith. With doctors offering no other feasible alternative, she gave it a try.

After 20 minutes of massage, “the edema was flushed out for 24 hours and the color changed from red-purple to almost natural skin tone, a tone that I hadn’t seen in years,” Smith says. She’s had no surgery since, and was able to stop her daily dose of 2500 mg of ibuprofen.

“What If ?”

Over the next few years, she continued receiving massage. On September 11, 2001, when the planes hit the Twin Towers, she had an epiphany. “I realized how quickly your life can change, especially with [my accident].  I needed to do something more valuable in my life. Exactly a year later I started massage school.”

She graduated from the Florida School of Massage in 2003, with a vague notion of helping other survivors. A year-and-a-half post-graduation, while working part-time at the school as she built her practice, fate took a hand.  Another burn survivor, a woman named Rose Dean, 45, a nurse from Gainesville, who had been scalded over 55 percent of her body as a 19-month-old when a vaporizer’s hot content fell on her, came to the school’s front desk while Smith was working and asked for massage therapy for her scars.

With permission from the school, Smith began an independent study project with Dean. For six weeks, in 15-minute sessions, she massaged contractures on Dean’s arm. Dean, who for more than 40 years had not been able to flatten her right hand on a surface, was now able to.

More importantly, the relationship between the two women blossomed into a game of “What if,” hypotheses of what life would look like if massage were a part of a burn survivor’s care. “Massage is not incorporated in any [burn] aftercare,” Smith says. Doctors typically do not recommend or prescribe it.

“As Nancy was massaging me, it came to me—what if I had had massage on a regular basis during my formative years? Would I have needed surgery when I was seven?” says Dean. (Dean had follow-up surgery when she was seven, and nearly died from an operating room infection). She firmly believed not.

Joyce Welch, an administrator at the Shands burn unit, had been trying to recruit Smith to volunteer as a counselor at Camp Amigo, a burn camp for children, sponsored by southeast Florida firefighters. Each year the camp hosts approximately 40 children, ranging from 6 to 18 years old. The camp assigns a counselor to each child—usually a firefighter or adult burn survivor.

One day, Dean and Smith had a new “what if” question: What if, instead of going as a counselor, Smith went as a massage therapist?

Smith contacted the camp’s directors and was given permission to bring her massage table to the next summer’s camp in July 2005. She also received permission from 18 of the attendees’ parents. In July, she took a week’s vacation from her job and headed off.

Smith arrived in the panhandle town of Cape San Blas in the fully accessible Billy Jo Rish State Park one day ahead of the kids, and prepped in a cabin that sat on a stretch of white sandy beach with mile-high sand dunes and sea grasses. She knew she was to work on 18 children, ages 8 to 17, who were all six months post-burn. What she didn’t know is how they’d respond.

The children were leery, she says. Many would walk into Smith’s cabin—often from a beach game or arts project—and ask, “What are you going to do to me?” Smith didn’t say much. She simply showed them her compression garments and injured leg and said, “Massage helped me. I hope it will help you, too.”

She also told the children that they could say stop at any time. “They had the whole power,” she says. By the end of the week, the kids had opened up, she says, even the youngest ones. One young girl shared how she was teased at school. Another said that the scars on her feet usually scared those who saw them.

After the week’s sessions, Smith drew a series of faces—from frowning to smiling. “I asked them to point to a face before and after session,” she says. “The second child on the table—an 11-year-old softball player who had burned the back of her knees on a mini-bike and had range of motion issues—said that we needed another category. ‘Happy Plus,’ she said, ‘because I feel great.’

Gathering Evidence

Smith finished the week inspired. She returned to Gainesville and told Dean about her camp experiences. They took their “What if” game up a notch: What if they could prove that massage helps these kids? As a nurse, Dean understood that the medical profession loves concrete proof. “I wondered how we could put the results in language that the doctors would understand and appreciate,”  she says.

So Smith began planning the Camp Amigo Project—a study to prove that massage helps burn survivors. Diane Garrison, BA, LMT, a student at the Florida School of Massage and a burn survivor, jumped on board. She had grant writing experience and helped Smith to complete an already partially written grant, which was submitted to the Massage Therapy Foundation. The foundation awarded the Camp Amigo Project a grant of approximately $5,000 in 2006.

Two other Florida School of Massage students, Rachel Torres and Dana Rubin, joined the team as well. Smith then combined forces with Annie Morien, PhD, a physician assistant, licensed massage therapist and part-time instructor at the Florida School of Massage. Morien’s research interest, coincidentally, was keloid and burn scars. She helped them with the language and research protocol of the study, and with writing up the results for—they hoped—publication in a scientific journal.

Together, Morien and Smith wrote an objective: “To determine if therapeutic massage intervention produced clinically meaningful changes in range of motion and keloid size/shape in children ages 8 to 18.”

The four therapists—Morien stayed at home and would receive the results upon their return—headed to Camp Amigo in July 2006. In the medical cabin they shared with the other medical personnel, Smith and Rubin massaged eight children three to five times a week for approximately 30 minutes, while Torres and Garrison measured the range of motion, mood and circumference of scars. (The control was the same child but a different area of the body.)

They ran into a few kinks. First, they realized that scar circumference was tough to measure in camp conditions. Sun, for example, can cause keloids to pucker. Mood was difficult to measure as well. “Because the kids were at camp, they came in a happy mood and left in a happy mood,” says Morien.

However, range of motion was a slam dunk. “Range of motion was significantly increased from the first day of camp to the last day,” says Morien. In fact, she was surprised at how quickly it increased.

The non-clinical results also wowed Smith and her colleagues. “There was one little girl who had been burned in a house fire—they were using candles in the home because they didn’t have electricity—and this little girl tried to save several siblings,” says Smith. In doing so, she received burns over 85 percent of her body, including her face and hands.

“She didn’t want to be touched,” says Smith. “She was very guarded about anyone getting into her personal space.” However, by the end of the week, Smith says, the young girl was complaining because she had to get off the massage table.

The tangible results were two-to-three degree change in range of motion each day. The intangibles were great, too. “What a wonderful turnaround! It seemed to make a difference not just in the scars, but in her heart healing, and in her body image and perception of herself.”

For Garrison, who had been the same age as many of the children at camp when she had been burned over 65 percent of her body at age 11, going to camp was a revelation. “I went to massage school to specifically help other burn survivors,” she says, but didn’t know where to find them. “Once burn survivors are through with critical [care], they just kind of disappear,” she says. “I thought, ‘This is my tribe.’ I’ve been looking for this my whole life,” she says.

Garrison was thrilled with the results. “You kind of feel that you are your deformities, your scars,” she says. “And when somebody touches you lovingly where you have horrible scars that others are repelled by, it goes beyond anything that you may be doing physically to the skin…that’s what these kids were saying.”

Reaching More

While Smith and Morien saw success as well, they’re ready to up the ante. “I’m excited with the results,” Morien says, “But I’m also a scientist and, therefore, cautious. I’d like a greater sample size for a more robust effect.” They hope to return next year, with more massage therapists, if possible, working on more children.

Smith wants more massage therapists on board in general. “We do not have enough trained therapists right now to handle the burn population,” she says. She says that therapists will likely find the work tremendously satisfying.

“For me, as a therapist, to be able to work with burn survivors, or anyone with traumatic scarring, to acknowledge where they are in the process and introduce appropriate touch—well, I can’t explain the feeling I have after a session—I’m just so full ,” Smith says. “They realize that it’s OK—that they’re OK—and they start to accept themselves more.”

Garrison says that, as the kids at Camp Amigo proved, touch can be so much more than skin deep. “I’ve found that the psychological side is as important as the physical. You start to accept that your body may look different, but you’re still lovable and worthy of touch, and that it doesn’t have to hurt. For me, it’s very transcendental. I heal as much as they heal.”

Clare La Plante is a freelance writer based in Evanston, Illinois. She is a regular contributor to mtj and her work has also appeared in a number of national business publications. Clare is also the author of Wall Street on a Shoestring. (Avon Books, 1998).

Q&A with Annie Morien, PhD, PA-C,LMT, Nancy Keeney Smith, NCTMB & Diane Garrison, BA, LMT

1. When working with a burn survivor client, how should therapists approach the scars?

First, approach the person, not the scar. If you understand the person, the emotional and physical being, you will have greater understanding of the scars.

Second, go slowly. People with burns have emotional scars, in addition to physical scars. The psychological component can be entrenched for years, producing behaviors such as hiding scars, avoiding touch and inability to discuss their scars. Also, go slowly with making physical contact with your client. Touching scars may be painful.

Third, listen to your clients. They must direct the massage. Encourage them to express their feelings and goals for each session.

Fourth, be patient. Some sessions may consist of very little massage and more conversation. Both you and the client can explore the depth and meaning of the scar—each client is different. Again, sessions should be tailored to the individual, not the scar.

2. How is burn scar tissue different than regular tissue, in terms of pliability, feeling, sensation, etc.?

We’ve all touched non-burned tissue—typically it’s soft, elastic, smooth in texture and has a nice pink color. Burn scars “feel” different—the temperature, color, texture and elasticity is different. These characteristics vary depending on the type of burn (chemical, thermal, etc.), depth of the scar (surface versus deeper loss of muscle and fat), location of scar (contracture over a joint) and age of the client (older people take longer to heal). New scars feel different from old scars.

3. What is the difference between working with new scars versus older scars?

In general, new scars go through a cellular maturation process for approximately 6 to 18 months, perhaps up

to two years. New scars tend to be extremely sensitive, itchy (pruritic) and have greater pigmentation (a purple or blue hue). When touching a new scar, you may feel extreme coolness or warmth. Scars can feel “stiff.” This varies depending on the thickness of the graft, depth of the scar, whether underlying fascia and muscle was destroyed, etc.

Older scars tend to be less flexible, less pigmented and less itchy, but this is variable also. The sensitivity can range from complete lack of feeling to extremely sensitive. A colleague of mine describes old scars as “feeling like a rubber tire under [her] fingers.” The scars tend to feel thick and non-elastic, but again, this varies depending on the graft, thickness and underlying tissue.

Edema (swelling) can occur with new or old scars. The tissue feels puffy or fluid-filled under the scar, or downstream from the scar tissue. Also, new and old scars vary in dryness. Clients who apply moisturizers daily to their scars make our job easier. A soft lubricated scar is easier to work than a dry scar. And finally, new or old scars may change within the massage session—the texture may soften, the color changes and you feel more warmth in the scar.

4. Which skin characteristics do massage therapists need to be most aware of?

I wish it were that simple. All characteristics must be monitored closely during each massage session: sensation, elasticity, pruritis, vascularity, contractures and edema.

5. What strokes or massage techniques work especially well with scar tissue? Which ones should be avoided?

To my knowledge, no empirical research has determined the type of massage or stroke that is most appropriate for burn scars. Published studies have used various strokes and techniques on burn patients, such as friction, light massage or others.

The type of massage stroke used is dependent upon the scar. In general, lymphatic drainage assists in areas of swelling and fluid accumulation (edema), passive range of motion and stretching helps contractures and taut tissue, and light massage increases circulation, decreases pruritis, and may alter sensation. Energy work is appropriate at any stage of wound healing, provided the client can handle it. I have heard of some massage therapists using deeper work (myofacial release); however I advise caution—only very skilled and experienced massage therapists should use this technique on burn scars.

Avoid touching open wounds or skin due to increased risk of infection. Also, be aware of your client’s level of sensation. Massage can cause pain or increased sensation in scars. There is a potential to damage the skin and produce additional skin defects if the therapist is overzealous in the treatment.

Keep in mind that the characteristics of the scar (depth, amount of tissue involved, location, level of  sensation) as well as the age of the scar indicate the type of massage that is appropriate. And sometimes, just letting the client talk about the scar is the best therapy.

6. What are some other conditions that may produce scar tissue?

Any time you open the skin you will produce a scar. One example is trauma to the skin. We see this on a daily basis when clients point to their childhood (or adult) injuries such as skinned knees and elbows. Also, surgical cuts produce scars. For example, mastectomies, open-heart operations and abdominal incisions produce scars.

7. Is there a different approach to other types of (non-burn) scar tissue?

Yes and no. Yes—each scar is unique, whether it is a surgical scar or burn scar. The therapist must tailor the session according to the client’s goals and the type of scar. No—damage to the skin is damage to the skin. The client will have some degree of altered sensation, circulation and function, regardless of the type of scar.

8. What are the differences in approach, if any, when working with children who have scar tissue?

Young children are extremely sensitive. While in the hospital, they learn quickly to associate a white coat or hospital scrubs with pain. Therefore, when approaching a child with healed burn scars, go slowly. Let them lead you. Approach their feet, rather than their head. Massage non-burned skin rather than scars. Get them to laugh, be relaxed. Once a child trusts you, you can start working with his or her scars.

Adults are also sensitive, but have the maturity to rationalize their feelings. However, I advise the same: go slowly, listen, be patient. Remember, adults can have years of psychological scarring.

9. What kind of training do therapists need to work with burn survivors, or those with scar tissue?

Volunteer and work with experienced massage therapists who are currently working with clients with scars. Touching a variety of scars gives you experience with the tissue and increases your comfort level in working with this type of population. Also, get training from certified workshops. Nancy Keeney Smith at the Florida School of Massage offers a continuing education workshop on massage and burns. Rena Margulis in New Jersey teaches acupressure for scars in her workshops. And finally, align yourself with people who work with scars: surgeons, nurses, etc. They can give you good information and possibly send you clients.

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