Charcot Foot Support

Archives for August 2019

Living with Charcot Foot: Lindsay’s Experience

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One thing we hear over and over from people living with Charcot Foot is how often they experience delayed or misdiagnosis of Charcot Foot. However, of all the stories we have heard Lindsay’s delayed diagnosis takes the cake. Lindsay first hurt her foot and began experiencing Charcot Foot symptoms in 2011 but wasn’t accurately diagnosed until 2018. She has agreed to share her Charcot Foot experience with others.

Botched surgery

Lindsay’s background is in nursing so when she hurt her foot in 2011 she reached out to medical professionals she trusted, whom she thought were qualified and professional. Unfortunately, she quickly realized there are few physicians who have experience with Charcot Foot and know how to properly treat it.

“I saw seven or eight orthopedists, a couple podiatrists,” Lindsay said. “I had surgery in 2017 which was a misdiagnosis and the wrong surgery. It’s been a nightmare.”

She was also seeing a neurologist who brought up Charcot Marie Tooth to her. At the time she didn’t realize Charcot Marie Tooth and Charcot arthropathy are completely different conditions. The surgeon who performed the surgery in 2017 talked with Lindsay about having the neurologist rule out Charcot Marie Tooth but never mentioned Charcot arthropathy, the differences between the conditions or that it was even a possibility to have Charcot Foot.

Interviewing surgeons

After the botched surgery and meeting with so many physicians who knew nothing about Charcot Foot, Lindsay changed her approach. Rather than placing her faith and her body in the hands of physicians trustingly she decided medical professionals needed to earn the opportunity to treat her. Now instead of going to medical appointments and having a surgeon tell her what needed to be done she went in prepared and interviewed them.

“I researched the heck out of this disease and I wasn’t coming in and offering myself on a platter to anyone ever again,” Lindsay said. “I made him basically interview for the privilege of taking care of me. I saw that he had the skills and knowledge, he had done a residency at Duke in Charcot Foot. ”

Lindsay videotaped their entire interview and shared it with others with Charcot Foot. She went in prepared, having researched the different methods available for reconstruction. They reviewed beaming, plating and screwing, internal and external fixation and created a surgery plan together to best meet the unique way Charcot Foot presented in Lindsay.

Lindsay had reconstructive surgery in March of 2018 and it was quite successful. More successful than her surgeon anticipated. She has regained almost 50 percent of her arch, has minimal pain and is transitioning from a boot to orthotic shoes.

Taking Control

Lindsay attributes the success of her surgery to taking control of her own health. Once she realized she had to take charge of her own medical care she TOOK CHARGE and has completely transformed her health and her life.

She began by taking a good hard look at how nutrition was impacting her health. She researched vitamins, minerals and supplements. She explored how carbs, protein and fat impacted her body. She cut out soda. She began to monitor her blood glucose religiously and eating to her meter. All of these changes improved her bone health tremendously.

“We anticipated doing beaming on me,” Lindsay said. “I started taking vitamins and supplements on my own before surgery to make sure I was really healthy. I started doing a Keto diet. He got in there and my bone quality was so much better than he thought that he ended up doing screws and plates.”

Not only did her bone quality improve but her overall health has improved. Lindsay’s blood glucose is in a healthy range, she has lost weight and she is full of energy. By taking control of her health, dealing with her emotions using healthy coping skills rather than overeating and making small changes on a daily basis she has experienced a complete transformation.

“I just decided that was it, I’m taking charge,” Lindsay said. “I’m done, I want better than what I have, food isn’t worth it anymore. So I took charge, I took myself back and I feel fabulous. I can’t tell you how many pounds I’ve lost but it is significant inches, most of my clothes are too big. I’m not doing it for weight loss I’m doing it as a new way of eating for the rest of my life.”

Helping others with Charcot Foot

Lindsay has spent so much time researching Charcot Foot in general, exploring Charcot Foot treatment options and exploring the impact of nutrition on Charcot Foot. The knowledge she has gained has changed her life and now she hopes to be a help to others. She gained a great deal of support from online groups focused on Charcot Foot, low carb/high fat diet and other issues that she is now a regular contributor to the sites, sharing information wherever she can. She has made connections with others living with Charcot Foot and is always willing to help by sharing information and her experience. She is even considering writing a book and starting a website.

“It helps me a lot to think that what I went through isn’t in vain,” Lindsay said. “It can serve a purpose, there is a positive in almost everything if you look and find it.”

We appreciate Lindsay’s willingness to share her experience living with Charcot Foot. You can read about the experiences of Jessie, Beth, Jennifer , Joe and Charlie as well. If you would like to share your experience with Charcot Foot please contact us.

The impact of Charcot Foot deformity

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Charcot Foot most often leads to deformity of the foot. The repeated weakening and fracturing of the bones in the foot cause the foot to become deformed. Many people with Charcot Foot deformity experience a “rocker-bottom” after their arch collapses. The deformity caused by Charcot Foot can cause many complications and impact those with Charcot Foot significantly.

Foot pain and ankle pain

The deformity caused by Charcot Foot can lead to foot and ankle pain. When bones fracture and consolidate it can cause pain because the bones don’t heal correctly and at times there are bone fragments in the foot. Those fragments can press against the nerves and tendons in the foot and cause pain. The “rocker-bottom” can also be painful. Pressure on the bottom of the foot can increase pain. Additionally, because of the deformity there may also be bony protrusions on other areas of the foot which may be painful.

While breakage of the ankle is less common with Charcot Foot there is still a potential for ankle pain. The AFO braces or CROW boots usually required for those with Charcot Foot can cause weakening of the ankle muscles. The lack of regular movements and use of the ankle due to the restriction of the braces causes weakening. Then when you do use your ankle more it is likely to hurt.

Mobility issues

Charcot Foot deformity is a primary cause of mobility issues. When in the acute stage of Charcot Foot most people are non-weight bearing so their mobility is impacted. But even in the other two stages of Charcot Foot the deformity can limit mobility.

The “rocker-bottom” destabilizes you as you attempt to stand and walk. The lack of balance often makes walking difficult. Even if you can walk for short periods the deformity can make it difficult and painful to walk for long distances.

Orthotics

Because of Charcot Foot deformity orthotics will most likely be necessary. Orthotics, braces, boots or inserts, help in several ways. First, orthotics help to protect your feet from additional injury. Boots and braces in particular serve as a layer of protection for your feet. The hard casing surrounding your feet may not be comfortable but it does help protect your bones.

Custom made orthotics are created using a mold of your foot and leg. Every bony protrusion, the rocker-bottom and any misshapen toes will be accounted for. The custom made orthotics ensure you won’t feel pain when wearing them, which means they shouldn’t cause any sores or wounds on your foot. We wouldn’t describe orthotics as comfortable but they should never be painful. If you feel pain or have any wounds or sores you should return to your orthotist immediately.

Foot deformities of any kind aren’t what any of us want. But the reality is foot deformity is a part of life with Charcot Foot. By wearing proper orthotics and following your physicians direction you should be able to manage the pain associated with foot deformity. Never hesitate to discuss any concerns or pain you have related to foot deformities with your physician.

Charcot Foot Terminology

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AFO, NWB, CROW, these are just a few of the acronyms you are going to hear shortly after being diagnosed with Charcot Foot. In fact, you are going to hear so many new terms your head may be spinning. To help you out we have put together this helpful guide to Charcot Foot terminology.

Charcot Foot: A condition causing weakening of the bones in the foot that can occur in people who have significant nerve damage (neuropathy). The bones are weakened enough to fracture, and with continued walking, the foot eventually changes shape.

Peripheral Neuropathy: A result of damage to the nerves outside of the brain and spinal cord (peripheral nerves), often causes weakness, numbness and pain, usually in your hands and feet. It can also affect other areas of your body.

Neuropathic pain: Pain associated with peripheral neuropathy, often described as sharp pains, burning pain or the feeling of pins and needles.

Non-weight bearing: Often abbreviated as NWB. This means placing no weight on your foot. During periods of non-weight bearing you should use crutches, a knee scooter or wheelchair to move about.

CROW boot: Charcot Restraint Orthotic Walker, abbreviated as CROW, combines an ankle/foot orthosis and a custom boot to aid in the treatment of Charcot Foot. The boot is designed to reduce plantar surface pressure with the familiar bi-valve configuration and rocker bottom sole.

AFO: An ankle-foot orthotic, or AFO, is a support intended to control the position and motion of the ankle, compensate for weakness, or correct deformities. It is prescribed for the treatment of Charcot Foot as it can protect the foot.

Podiatrist: Podiatrists are healthcare professionals who have been trained to diagnose and treat abnormal conditions of the feet and lower limbs. They also prevent and correct deformity, keep people mobile and active, relieve pain and treat infections.

Orthopedist: An orthopedic surgeon, a physician who corrects congenital or functional abnormalities of the bones with surgery, casting, and bracing.

Orthotics Practioner: Also known as an orthotist. They design, fabricate, and fit custom-made orthopedic braces, or “orthoses,” and fit pre-fabricated devices, and provides related patient care.

Prosthetist: A prosthetist designs, fabricates, and fits custom-made artificial limbs, or “prostheses,” and provides related patient care.

Amputation:  The surgical removal of all or part of a limb or extremity such as an arm, leg, foot, hand, toe, or finger. Amputation of the leg, above the knee (AKA) or below the knew (BKA) is the most common in those with Charcot Foot.

Physical Therapy: The treatment of disease, injury, or deformity by physical methods such as massage, heat treatment, and exercise rather than by drugs or surgery. Those with Charcot Foot often find physical therapy helpful to strengthen core muscles and aid with balance.

Occupational Therapy: A form of therapy for those recuperating from physical or mental illness that encourages rehabilitation through the performance of activities required in daily life. Those with Charcot Foot can benefit from occupational therapy to assist them in learning to live with limited mobility issues.

Hopefully this guide to Charcot Foot terminology will be helpful for you. Are there other terms which were new to you upon diagnosis? We would love to include them to assist others.

The things we miss

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Living with Charcot Foot means living without quite a few other things. We all find ourselves lamenting the things we miss from time to time. Too much of that can send us into a depression or unless our anxiety. But on occasion it doesn’t hurt to acknowledge the loss of the life we used to live before Charcot Foot became a part of it.

We Miss Our Shoes

We miss our shoes, the adorable ballet flats and the warm Uggs. We even miss those steel toed work boots and cowboy boots and rain boots. We miss slippers and flip-flops. We miss the ease with which we would slip on those shoes before we had to wear AFO braces or the dreaded boot. Some of us miss our shoes so much we have kept a few pairs we will never wear again just because we can’t bear the thought of letting them all go.

We Miss Walking

We miss walking, with ease and without pain. We miss those strolls around the block with our dog or our children. We miss the idea of just getting up and walking to the mailbox without worrying about our braces or pain level. We miss the simplicity of a trip to the grocery store without being concerned about far we will have to walk once we are in the store.

We Miss Our Independence

We miss being able to do our own grocery shopping and preparing our own meals. We miss having the freedom to hop up and make a quick trip somewhere without having to plan things out. We miss taking a shower without concern about falling. There are times we want to scream because we are sick of asking others for help and want to be able to do it all on our own again.

We Miss Our Balance

We miss walking up stairs and not having to grip the handrail. We miss dancing, even though we might not have been good dancers. We miss feet that didn’t have rocker bottoms that leave us shaking and clumsy. We miss not stumbling when we walk or being able to stand up quickly without fear of tipping over.

We miss a lot when we live with Charcot Foot. Over time we learn how to accommodate for the lack of balance and challenges walking. We adjust to orthotics and inserts, boots and knee walkers. We learn to ask for help when needed and claim our independence in other areas. Eventually we are even able to let go of those last few pairs of shoes and embrace the sturdy, practical shoes that keep our feet protected. Even though we adapt we still have to acknowledge the things we miss.

Please, know you are not alone. We are all missing something, we are all grieving. We don’t have to do it alone.