Suffering from a 'most painful disease'

It was a relatively minor foot operation in 2004 that brought on reflex sympathetic dystrophy that took years to diagnose. Samantha Cockrell, of Towamensing Township, realizes she will never be free of pain, although more knowledge and an early diagnosis (usually three months or less) could have brought it under control.

Other early symptoms, other than horrific pain, are swelling, changes to nails, skin color and temperature.

Samantha "Sam" tells her story in hopes that it may help someone else avoid going through what she did and still is.

What has become a good day is what she describes as seven or eight on the scale of one to 10 that doctors use. A "flare" pushes it up to 10 and usually requires hospitalization. The pain of RSD is considered higher by 20 percent than cancer pain on the McGill pain scale.

The most frustrating thing has been to find a doctor able to diagnose and then treat the disease. She saw 56 doctors in three states to get a diagnosis and then saw 92 doctors in five states for treatment.

"That's why it's been so hard. So many doctors have no idea what this disease is or what damage it can cause to a person. Diagnosing RSD is still in the dark ages and not the 21st century," said Cockrell.

Anesthesiologists, pain specialists, or neurologists are most apt to know what is required.

Cockrell says that after the foot surgery the swelling wouldn't go away. It was bright red and purple. The pain is described as "burning" which was so intense she could not put her foot on the floor or in water. Two more surgeries were done, hopefully to correct the problem, but the condition continued to escalate.

It spread to the knee, then through the body - a full-body RSD though not diagnosed yet. Her arms swelled, but she managed to graduate from Scottsdale Culinary Institute, a dream she was happy to be able to fulfill.

Since there were no answers in Alaska she and her mother Lorri went to the Mayo Clinic where Cockrell was seen by many different specialists.

On Jan. 12 a doctor in Seattle called. He had learned about her from an aunt. His 8-year-old daughter had the same symptoms. He explained the symptoms and the cause as traumatic nerve damage. The disease is now known as complex regional pain symptom. They finally had a name for the disease.

Type 1 comes from an insignificant injury such as a small bump. Type 2 is from surgery or a major accident with nerve damage.

By then Cockrell had been bedridden for four weeks and was being fed water and vitamins through an IV.

Back home in Alaska, an anesthesiologist and pain specialist saw her and realized how bad she was. It was the first time he had seen full-body RSD.

Her feet started curling and her hands clenched into fists 24/7.

He sent Cockrell back to the Lower 48. She had to be airlifted so she could be sedated during a flight to the Cleveland Clinic. It was here she met a doctor who decided to put a trial spinal stimulator implant in to intercept the pain signals. That morning her pain had gone down to a seven. This helped her through physical and occupational therapy that helped her to use her hands and feet, and walk again.

Cockrells had heard about ketamine, an anesthetic being used by a doctor in Chicago. She went to Rush University, but he wanted to do another implant before using ketamine. As a result she was hospitalized for 10 days and needed physical therapy before she could go home because of muscle wasting.

The original foot surgery site opened in a lesion one-half inch wide by five inches long and remains open. Her condition started "falling back down," so Lorri started searching for another doctor able to treat the disease.

Dr. Schwartzman, a neurologist at Drexell University uses ketamine and has treated the worst cases, but he had a three-year waiting list.

He suggested she go to Dr. Getson in Marlton, N.J. Getson wanted all her records - in two weeks he called and said he was willing to see Sam which brought tears to both their eyes.

Since flying was out of the question, Sam, Lorri and brother Robert with a couple dogs drove to New Jersey with many stops at emergency rooms when the pain got too bad. They found a home in Towamensing Township.

In September 2008 they realized Getson was a great doctor. Instead of shaking her hand he shook her finger because he knew of the pain. In order to receive the ketamine treatment she had to be seen by an orthopedist, psychologist and cardiologist so there would be no surprises.

In January he started the ketamine infusion on an outpatient basis. Her veins, with all the treatments, were nonexistent so she needed a port in her chest.

The morning before the ketamine was a nightmare because the pain was so high. She was taken by wheelchair to the doctor to receive the first of what was to be a 15-week ketamine treatment. Gradually treatments were down to one a week and in November 2009 it was down to one every two weeks.

But flares are still part of her life.

One more surgery is planned to cut the nerve and bury it in the bone. She knows this treatments will be painful but must be tried though she does not know if she will be better, the same or worse.

She cannot wear a shoe, shower or bathe, or wash her hair because water sends her into spasms. The vibrations from a car affect her, weather affects her. "Me and my mom live day by day. It is as real as it can be. It damaged our family and they knew what kind of person I was," she said.

A computer helped Cockrells find medical specialists and also helped build an international support group. She has many friends in the RSD community.

Lorri says they have been lucky in the Allentown area because medical students are getting trained in RSD.

Sam wants to thank all the people in the township who have helped the family feel at home.