Charcot Foot Support

Charcot Foot Diagnosis

Living with disability after Charcot Foot diagnosis : Charlie’s Story

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Charlie was diagnosed with Charcot Foot in both feet in 2007 at the age of 49. Charlie had been a truck driver for 25 years at the time of his diagnosis. Due to the complications of Charcot Foot he was disabled and unable to return to his work. Charlie has agreed to share his experiences with us.

Disability Determination

When Charlie was diagnosed with Charcot Foot he was in the active stage in both feet. He was put on non-weight bearing status and both feet were placed in boots. He remained non-weight bearing for 25 weeks. He had six weeks of vacation time, four weeks of sick time and another six weeks of temporary disability to help get him through the first 16 weeks of being non-weight bearing. By week 17, Charlie knew he was in trouble.

“Week 17 came and I was screwed,” Charlie said. “There was no money coming in but the medical bills didn’t stop. I was angry and depressed. Here I was, a grown ass man, and I couldn’t walk to the bathroom or pay my bills. It was one of the worst times in my life.”

With help from his family Charlie made it to week 25 when his doctor released him from non-weight bearing status and allowed him to begin walking again with CROW boots. Though he could now walk he couldn’t return to his career as a truck driver. He felt fortunate to find a job as a dispatcher for a trucking company. The pay was less but he was able to work. Unfortunately, his time working didn’t last for long.

“I only worked about six weeks before I developed a large ulcer on my left foot,” Charlie said. “Before I knew it I was in really bad shape.”

Charlie’s condition deteriorated rapidly. The ulcer in his left foot was infected and he was also battling a severe kidney infection. Charlie found himself in the intensive care unit of his local hospital with a diagnosis of sepsis. His family wasn’t sure if he would survive the ordeal as the doctors had told them to brace themselves for the worst. Charlie survived the sepsis but his left leg was amputated below the knee.

“I wasn’t with it before the amputation, my mom had to make that decision for me,” Charlie said. “I know it was hard for her but when I finally came around and realized my leg was gone I wanted to be dead. I wanted to be dead for a long time.”

Charlie was severely depressed on top of being very weak from the extended time in a hospital bed. After six weeks in the hospital he was discharged and went to a rehabilitation facility about two hours from his home. While at the rehabilitation facility his sister and the staff spearheaded the efforts to get him approved for disability.

Disability Approval

For some people who apply for disability the process can be quite lengthy. In Charlie’s case it didn’t take long for him to be approved, approximately three weeks. This was likely due to the fact that he was at the rehab facility where he remained for two months. While there he learned how to transition from his bed to a wheelchair, how to shower safely and regained his strength.

“Looking back those people did a hell of a lot for me,” Charlie said. “They taught me a lot and they put up with a lot of shit from me. I was mad and depressed and a real asshole.”

Living with Charcot Foot disability

It took years for Charlie to move past his anger and learn to live with his disability. He admits there are still days he gets angry but it is no longer his primary emotion. He has learned how to cope and says his depression has lifted as well.

In an effort to keep the depression and angry away Charlie spends time trying to enjoy some hobbies. He can longer drive his beloved semi’s but he has found a new love for fishing. He never had time to fish before but says he makes it a point to go fishing a couple times a week now. He has also connected with other people online through an internet gaming service and says the connection with others, even on days it’s hard to get outside, helps him keep going.

Charlie fishing

He offers a bit of advice to others living with Charcot Foot and adjusting to a disability.

“It’s going to be damn hard,” Charlie said. “It’s not easy and it sucks. But you just have to find some things you still enjoy. You have to keep talking to people and being involved in life somehow. The more you sit around feeling sorry for yourself the worse it is.”

We very much appreciate Charlie’s willingness to share his experiences with Charcot Foot with us. If you would like to share your story, please leave us a comment.

Charcot Foot Stages

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Charcot Foot is a serious condition. It can lead to deformity, disability and amputation. The earlier Charcot Foot is diagnosed and treated the better outcomes a patient will experience. When Charcot Foot is diagnosed it is done so in one of three stages, acute, sub-acute and chronic.

Charcot Foot Acute Stage

When in an “acute stage” a patient will likely experience significant swelling, the foot will be warm to the touch and will likely be red. Frequently, misdiagnosis occurs during the acute stage as the symptoms are mistaken for signs of infection. During the acute stage, significant damage can be done to the bone structure of the foot. If x-rays are done during this stage they will likely show fractures and dislocations. 

During the acute stage of Charcot Foot patients are most likely placed in a boot or cast to immobilize the foot. They are also encouraged to remain non-weight bearing until the acute stage has passed.

Charcot Foot Sub-Acute Stage

The second stage, known as the “sub-Acute stage”, is characterized by healing. Patients will begin to see a decrease in swelling, redness will subside and the temperature of the foot will begin to return to normal. During this period the bones can still be damaged so it is important to remain non-weight bearing. 

Charcot Foot Chronic Stage

Stage three is known as the cool phase or the “chronic stage”. During this period the foot should have minimal swelling, no redness and be of normal temperature. X-rays performed during this stage will show consolidation of the bone. During this stage, patients are considered stable. The foot is not worsening in condition but will not improve. It is important to remember each stage can occur more than once and can occur at varying times in either foot.

Always talk with your physician if you have concerns about what Charcot Foot stage you are in. Only a doctor can make an official diagnosis.

Charcot Foot Diagnosis Disaster: Jessie’s Story

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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.” 

“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.

What is Charcot Foot?

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Charcot Foot is a serious condition. It can lead to deformity, disability and amputation. The earlier Charcot Foot is diagnosed and treated the better outcomes a patient will experience. Charcot Foot cannot be cured and damage caused by Charcot Foot cannot be reversed.

Charcot Foot Acute Stage

Charcot Foot is often “staged” by physicians using three stages.  When in an “acute stage” a patient will likely experience significant swelling, the foot will be warm to the touch and will likely be red. Frequently, misdiagnosis occurs during the acute stage as the symptoms are mistaken for signs of infection. During the acute stage, significant damage can be done to the bone structure of the foot. If x-rays are done during this stage they will likely show fractures and dislocations.

Charcot Foot Subacute Stage

The second stage, known as the “subacute stage”, is characterized by healing. Patients will begin to see a decrease in swelling, redness will subside and the temperature of the foot will begin to return to normal. During this period the bones can still be damaged so it is important to remain non-weight bearing.

Charcot Foot Chronic Stage

Stage three is known as the cool phase or the “chronic stage”. During this period the foot should have minimal swelling, no redness and be of normal temperature. X-rays performed during this stage will show consolidation of the bone. During this stage, patients are considered stable. The foot is not worsening in condition but will not improve. It is important to remember each stage can occur more than once and can occur at varying times in either foot.

When first diagnosed with Charcot Foot you most likely headed straight to Google and searched for anything you could find on Charcot Foot. Chances are you came up with a lot of information about Charcot Marie-Tooth and not much information about Charcot Foot. The two conditions are often confused, so let me be clear, Charcot Foot and Charcot Marie-Tooth are two very different conditions. Charcot Marie-Tooth is an inherited neurological disorder while Charcot Foot is a condition causing weakening of the bones in the foot.