Charcot Foot is considered to be a rare condition but its true prevalence is likely underestimated due to mistaken or delayed diagnosis. It is incredibly rare to meet someone with Charcot Foot who was diagnosed accurately when their symptoms began. It is more likely to hear about the diagnosis disasters.
Jessie, a 38-year-old, Type II Diabetic from Kansas was diagnosed with Charcot Foot after a lengthy period of misdiagnosis. She has agreed to share her experiences in an effort to help others.
Jessie began showing symptoms of Charcot Foot about one year before being officially diagnosed. She says it all started with a swollen right foot which was warm to the touch. She initially thought she had sprained her ankle, though she didn’t remember doing anything which would have caused injury. After taking it easy for a few days, when the swelling didn’t subside and the heat didn’t lessen she paid a visit to her doctor. The doctor agreed it was likely just a sprain and advised her to take it easy.
Over the next several months her right foot would swell on occasion and the skin would be red, but it would subside with time. She attributed it to wearing bad shoes.
” I had quite the love affair with adorable little ballet flats,” Jessie said. “Adorable but absolutely no support for the feet. I would switch out my shoes and the swelling would decrease.”
Six months prior to diagnosis both her left and right foot would swell significantly. If she would take her shoes off at the office during the day she wouldn’t be able to get them back on because they would swell so much. By the end of the day she could hardly walk and her feet would throb. She again spoke with her doctor about the pain and swelling and she attributed the swelling to a blood pressure issue. She changed her blood pressure medication in hopes of reducing the swelling.
Four months prior to diagnosis all of Jessie’s symptoms subsided. Her feet quit swelling, they didn’t throb and she could walk easily. She attributed the reduction in symptoms to getting her blood pressure under control, despite the fact that her blood pressure medication was changed at least 60 days before the swelling subsided.
“I was just glad the swelling had gone away and put it all out of my mind,” Jessie said. ” I had recently adopted my infant daughter and was so busy with being a new mom, I didn’t give it much thought. No swelling meant no problems in my mind.”
Then as quickly as the symptoms faded they returned. But this time the swelling was extreme. Jessie had recently undergone eye surgery and was required to remain face down for 30 minutes out of every hour. During that period, her feet and legs began to swell. Her doctor attributed the swelling to the lack of movement since surgery and put her on a water pill. The water pill worked, her swelling went down temporarily but she had a bad reaction to the medication and passed out. When she regained consciousness the paramedics were asking her what was wrong and all she could tell them was her foot hurt.
After passing out, she was taken to the hospital where the doctor on call treated her for low blood pressure and dehydration. While laying in the hospital bed her left foot began to swell quickly, redden and was warm to the touch. She asked him if she could have broken it when she fell while passing out. He brushed it off and attributed the swelling to water retention yet again. Home she went, sore foot and all.
Over the course of the weekend her foot swelled to a size she couldn’t believe was possible. Jessie describes it as a monster foot, morphing from what once looked like a human foot to what looked like a monster foot. As it swelled it became more deformed and continued to get warmer. Two more trips to the emergency room occurred before she was admitted to the hospital with a diagnosis of cellulitis. It was another two days before a doctor finally agreed to x-ray her foot. Sure enough, it was broken.
She was told she had a Lisfranc fracture, which is when the toes are dislocated from the mid foot. Her toes veered to the left while a large lump of bone could be seen on the right side of her foot. Due to the time which had elapsed since the injury occurred, quite a bit of damage had been done since she had been walking on it She was transferred to a surgeon out of town for surgery. When she was transferred I was told by the orthopedic surgeon at her home hospital, “Worst case scenario, you lose your foot, best case scenario, you walk with a limp and have lifelong pain.â€
“After surgery I was told I had Charcot Foot,” Jessie said. “I had no idea what Charcot Foot was or what the future held. At the time I thought surgery fixed it, not realizing Charcot Foot is a lifelong condition. Due to the late diagnosis my foot was badly damaged. Surgery realigned my toes and pins now held my mid foot together. But I now had the infamous “rocker bottom†associated with Charcot.”
Four months after surgery on her left foot, she began to have severe swelling in the right foot. A trip back to the surgeon confirmed what she already knew. She also had Charcot Foot in her left foot.
At the time she felt like her story was unique. She wondered how this could have been missed by so many doctors for such a period of time. She now realizes her story is not unique.
” Almost every person I have spoken to with Charcot Foot went through an extensive period of misdiagnosis,” Jessie said. “The most common misdiagnosis is cellulitis.”
Misdiagnosis and delayed diagnosis can be costly for those with Charcot Foot. Delayed diagnosis increases the risk of complications and amputation. Jessie firmly believes the only way to improve this situation is through awareness and education among medical professionals and those with neuropathy.
“I’ve been diabetic for years and had never heard of Charcot Foot,” Jessie said. “I wish more medical professionals would talk about Charcot Foot and educate those with neuropathy about the signs and symptoms.”
Jessie now wears total contact AFO braces on both feet. She sees her surgeon regularly and is happy to report her feet are currently stable. She encourages others to see their physicians regularly and discuss any concerns they have with medical professionals.
Since interviewing Jessie for this article she has released an Ebook, I Miss My Shoes: Living with Charcot Foot. We visited with her again to learn more about what motivated her to write the book. Visit our review of the book and see our question and answer session with Jessie.
Jennifer has also shared her experience living with Charcot Foot.