Charcot’s disease: A common malady

Anita Shaw recently had extensive surgery on her foot after being diagnosed with Charot’s Disease, which caused bone fragments in her foot to flake off, swell and fracture.   - Photo by Erin Beil
Anita Shaw recently had extensive surgery on her foot after being diagnosed with Charot’s Disease, which caused bone fragments in her foot to flake off, swell and fracture.
— image credit: Photo by Erin Beil

Limping through life, Anita Shaw of Central Kitsap thought the pain in her foot was something she would have to live with until doctors discovered she had a degenerative disease that affects many who don’t realize it.

History plays a part

Adopted when she was 3 years old, Shaw said she has no record of medical history passed through her biological parents or ancestors. Along with diabetes, another disease that Shaw is afflicted by, Charcot’s joint disease also is genetic. Charcot’s joint disease is a degenerative illness with progressive destruction of the bones and joints in the foot, commonly mistaken as arthritis.

Growing up on a farm, Shaw regularly took part in horseback riding activities. At the age of 10, Shaw was thrown from a horse. Landing on her feet and then falling to her knees, Shaw believes this was the incident that onset the beginning of her foot problems.

“The doctors think that might have been what started it all,” Shaw said with her swollen leg propped up on a stack of pillows. “(Charcot’s joint disease) has to start with a trauma.”

Throughout her youth, Shaw played sports on a regular basis, especially active in basketball. Like all children, Shaw played hard and fell often, regularly turning her ankle on her right leg.

“I learned how to fall without hurting myself,” Shaw added with a laugh.

The pain gets worse

Diagnosed with Type II diabetes in 2005, the foot condition for Shaw just got worse. A former art teacher for the Central Kitsap School District, Shaw was often on her feet on concrete floors and walking up to 3 miles a day, a remedy to help keep her diabetes in check.

Upon a trip to the doctor, Shaw was told she had arthritis and that it was a condition she would “have to live with.”

“What was sad for me was I complained about my food bugging me,” Shaw said, adding she had both X-rays and sports medicine specialists look at her foot. “They couldn’t tell me what was wrong, some suggested amputation.”

With occasional leg cramps and numbness in parts of her foot, Shaw was having a harder and harder time maneuvering in the classroom until 2003 when her diabetes worsened, forcing her to retire.

At first, doctors blamed Shaw’s foot pain both on arthritis and her shoes, telling her that they were too tight. Shaw said she saw a podiatrist for her condition and he suggested she switch to running shoes, a solution that only brought more pain.

“Soon, I ended up with ulcers on my little toe and an infection on my big toe,” Shaw said.

After changing podiatrists, Shaw’s new doctor was able to cure her infection and the ulcer had turned into a callus. At that point, her podiatrist referred her to Madigan Army Medical Center for Orthotics (MAMCO) in Tacoma because Shaw’s husband, Max, was retired military. Shaw said the specialist who worked on her at MAMCO said she “had a serious problem,” and directed her to go to the Limb Preservation Clinic at MAMC. After being fitted for orthotics, which were placed inside Shaw’s shoe, she felt better and was reluctant to pursue further medical attention.

A break in the progress

At their family farm in Nebraska in 2004, Shaw said she was suffering again from early morning leg cramps. After getting out of bed, Shaw said she dropped to the floor after hearing her leg snap.

“It sounded like a broken pencil in my ankle,” she added with a laugh. “It was excruciating pain ... but I refused to go to the hospital (in Nebraska) in case I got stuck there.”

Upon returning to Washington and still in a great amount of pain, Shaw had another set of X-rays to determine the damage.

“(The doctor) told me again, ‘it is arthritis, you will just have to live with it,’” Shaw said.

Diagnosis: Charcot’s joint disease

Displeased with the results she received, Shaw went to her podiatrist in Gig Harbor for additional X-rays for a second opinion. He diagnosed it as Charcot’s joint disease.

“We brought X-rays to a specialist, he popped in the disk, brought the picture up and said, ‘come here,’” Shaw said with a smile on her face. “He could see bone fragments floating in my foot and flaking away from my foot.”

Shaw added that her foot specialist had recently begun operating on feet afflicted by Charcot’s joint disease, and was told she had a window of only four years to have surgery to help her condition.

Upon doing research before agreeing to surgery, Shaw said she discovered that Charcot’s joint disease is named after Jean Martin Charcot of France. Shaw said she also found out the disease has been around since 1868, but has only been connected to diabetes since 1936.

“In the last five years they’ve started doing surgery on (Charcot’s joint disease),” Shaw said. “I only had a window of four years to do surgery, after that, they couldn’t do anything.”

There are four different phases associated with Charcot’s joint disease. The first is painful swelling to affected joint and cysts, stage two is marked by painless joint swelling and subluxation, the third stage includes joint deformity, dislocation and arch collapse. The fourth and final stage shows significant joint deformity and after this point, surgery cannot be performed. Shaw was at stage three when doctors diagnosed her condition.

Surgery begins

Once deciding that she wanted the surgical procedure, Shaw was admitted to MAMC on July 6 to begin the first of many surgical procedures. First, Shaw’s doctors put long screws in her foot, one from her large toe to heel and the other from small toe to heel, to help keep her arch from falling.

“That was to keep the arch in place,” she added with a laugh.

Then doctors placed an orbital fixator, a device with rods that go into the foot with rings that connect the rods on the outside of the foot, on her foot and lower half of her right leg.

“I am now in the second phase after surgery on my toes and the removal of the orbital fixator on Wednesday (Aug. 29),” Shaw said as a smile spread across her face. “I’m not sure where I’d be now if they hadn’t discovered this.”

During the surgery, Shaw said doctors also shortened three of her toes, cut her calluses off and shaved the bone deformity so her foot would not have to undergo amputation.

“It’s just a major ordeal,” said Max Shaw. “We’ve been very lucky with Anita.”

Road to rehabilitation

Heavily bandaged and propped up on multiple pillows, Shaw is resting in the comfort of her art studio, attached to her house, where she will begin the recovery stage of her procedure.

Shaw said she has been instructed to remain off of her leg, in bed, for 20 hours a day as well as keep ice on the general area for 20 minutes of every hour she is awake to keep the swelling of her leg and foot down.

A magnet fixator rests on top of Shaw’s ankle so the magnetic waves can penetrate her skin, encouraging blood flow and a quicker healing time. Shaw said she will have to remain off of her leg for up to a year to prevent further injury.

“Because I’m a diabetic, (doctors) are amazed at how I’m healing,” Shaw said with a laugh. “Thank God I found my doctor and the team that knew what I had.”

Shaw said although the support from her friends and family have helped her get through this process, she wants other members of the community to be aware of Charcot’s joint disease because people may have it without knowing.

“I want people to understand if they have foot pain, to really get it checked out,” she added with a smile. “I feel very fortunate we caught this as early as we did ... I want people to become aware of this particular problem, you may have it and not know it.”

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