Charcot Foot Support

Archives for August 2019

Living with Charcot Foot: Courtney’s Experience

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Every person living with Charcot Foot faces uncertainty. For Courtney, the uncertainty of Charcot Foot has become overwhelming. She says the emotional toll of Charcot Foot has been far worse for her than the physical impact. We are thankful Courtney has decided to share her experience living with Charcot Foot.

Multiple surgeries to treat Charcot Foot

Courtney has had multiple surgeries on both feet due to Charcot Foot and secondary infections. She has had ulcers that were slow to heal and has experienced many slow healing wounds due to diabetes and Charcot Foot. Her surgeries have included the removal of two toes, one surgery with an external fixator, two corrective surgeries to treat wounds and infection following her external fixator surgery and a surgery to clear infection from an infection related to an ulcer. She anticipates more surgeries in her future.

“I’ve spent 22 of the last 36 months non-weight bearing and recovering from surgery,” Courtney said. “A lot of people think I should just give up and go with amputation but I don’t want to go that route yet. I do think the surgeries have helped me keep my feet. I’m just not as mobile as I’d like to be.”

Currently, Courtney is being treated for another bone infection. She has an appointment with a surgeon soon and is fearful she is reaching the point where amputation is the only option.

Emotional impact of Charcot Foot

Courtney is 59-years-old and married. She has one adult daughter. Both her husband and daughter have been a good support to her but both are now urging her to consider amputation. Courtney is hesitant to move forward with amputation because the anxiety she now feels.

“I’ve been inside for so long now, shut off from the things I used to enjoy,” Courtney says. ” If I had the amputation I could probably walk again, go do things, travel. But the idea of leaving the house, talking to people, being in a crowd… it makes me have a panic attack just thinking about it. I think I use Charcot as an excuse now to just stay in and not deal with my anxiety.”

Prior to being diagnosed with Charcot Foot, Courtney says she experienced small bouts of anxiety and depression. Since her diagnosis she reports a marked increase in the frequency and intensity of her anxiety and depression. She has talked with her doctor about her feelings and has started taking medication to treat both the anxiety and depression but she has not sought out therapy services.

“I don’t want to talk to a therapist about it,” Courtney says. “I’m a private person. And I’d have to go to a therapist’s office and that is just one more trip my husband or daughter would have to help with.”

Coping with Charcot Foot

Courtney says coping with Charcot Foot has become her full-time job. Since she is home bound she says she spends a good deal of time researching Charcot Foot. She has recently become very interested in the nutritional component and says that since changing her diet she has seen an improvement in her Charcot Foot and feels better emotionally. She is now follow a high protein, low carb diet.

She took up crocheting when she was diagnosed with Charcot Foot and enjoys the feeling of accomplishment she has when she completes a project.

Courtney says she also notices a difference in her mood when she keeps her mind busy. She tries to complete a puzzle every week and it has become the family joke that no one can leave the house without getting three pieces put together. She also likes word searches, crossword puzzles and reading.

To help take some of the load off of her husband and daughter she orders almost all of her groceries through AmazonFresh. She is the second person we have met using AmazonFresh and she has been pleased with the service. She can have unlimited groceries delivered to her door for $14.99 a month.

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“I get creative and have figured out a way to have almost everything I need delivered to the house,” Courtney says. “I haven’t really walked or shopped in over two years now. It’s amazing how many things you can have delivered. Is it the way I pictured living my life, no, but I’m able to have my needs met and I think I still have a good life.”

Courtney is a very private person and we know sharing her experience with Charcot Foot was challenging for her. We are so very thankful she decided to push herself and share with us and our readers. We know Courtney isn’t the only person with Charcot Foot struggling with anxiety and depression. Even if you are stuck at home there are still options for mental health support. Consider giving Better Help Online Counseling a try or reach out to your local mental health center. Some therapists are willing to do home visits. Please know you aren’t alone.

If you would like to learn about the experiences of others living with Charcot Foot take a moment to read about Jessie, Jennifer, Charlie, Joe, Beth and Lindsay. If you would like to share your experience contact us.

Educating others about Charcot Foot

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Over time we have found very few know about Charcot Foot until they are diagnosed with it. By the time diagnosis happens it’s too late! The damage of Charcot Foot can’t be reversed and people are left lamenting and wishing they would have known about Charcot Foot before so they could have taken steps to prevent it. This is why we are so passionate about educating others about Charcot Foot. If we can spare even a few people from this condition it is worth it.

We recently stumbled upon a nurse and diabetes educator who shares the same passion of educating others. Nurse Master Charlie is his name and educating others in a fun way is his game! We found Nurse Master Charlie on Twitter when he shared a music video about Charcot Foot. Say what? A music video about Charcot Foot!?! It’s true! He wrote it and produced it and we LOVE it! We can’t wait to hear what you think.

Nurse Master Charlie has some other great songs out there. He also has some great informative and fun posts on Twitter. He is worth following and keeping up with. We think he will have some awesome new stuff we will all enjoy.

Chiropractic Care and Charcot Foot

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Many people with Charcot Foot never consider visiting a chiropractor or seeking chiropractic care. While a chiropractor cannot cure Charcot Foot there are many ways chiropractic care can be beneficial for those living with Charcot Foot.

Chiropractic adjustment

A chiropractic adjustment can be incredibly beneficial for those with Charcot Foot. We often spend so much time non-weight bearing or sedentary that it is easy for our spine to get out of alignment. How often do you find yourself laying on the couch with one foot elevated and experience pain in your lower back? It’s common! A visit to a chiropractor for an adjustment will realign your spine and reduce some of the discomfort associated with sedentary life.

When wearing a boot it is also very easy for your hips and pelvis to become unaligned. You may notice hip or knee pain the longer you wear a boot. A chiropractic adjustment will also realign your hips and pelvis. This can help prevent sciatic pain and reduce walking with a limp.

Total Health Chiropractic

Chiropractors often focus on the total health of their patients. It has been our experience that chiropractors take a more holistic approach than medical doctors. This can prove beneficial for those with Charcot Foot because of the wide range of health conditions and symptoms we have.

Total health chiropractic includes not just chiropractic adjustments but also looking at how nutrition impacts overall health. Chiropractors are often well versed in vitamin and mineral supplements. They can make well-informed recommendations to help improve your health and address any nutritional deficits you may have.

Whether you seek chiropractic care for a chiropractic adjustment or for total health chiropractic care it can help. There is no cure for Charcot Foot but exploring all health options, including chiropractic care can help decrease secondary pain and symptoms. As usual it never hurts to visit with your physician and seek their input on chiropractic care.

Charcot Foot Surgery

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One of the great debates among those living with Charcot Foot is their opinion on Charcot Foot surgery. Some people believe reconstructive surgery is the way to go. Others avoid surgery at all costs. In some cases surgery isn’t a viable Charcot Foot treatment option while for others it can’t be avoided. With all the different opinions how do you ever decide if Charcot Foot Surgery is an option for you?

We reached out to several people living with Charcot Foot and got feedback from them. We thought we would share some of their thoughts about surgery and what helped them make a decision.

Correcting Charcot Foot Deformity

Charcot Foot surgery is often performed in hopes of correcting Charcot Foot deformity. The goal of surgery is to remove bony protrusions and correct the rocker-bottom associated with Charcot Foot. In theory, this is a fabulous idea. Wouldn’t we all love to have an arch again and have a stable foot. The reality is reconstructive surgery for Charcot Foot is very rarely successful long term.

One important thing to remember is there is no surgery or treatment option that will cure Charcot Foot. No matter how successful a surgery is you will still have Charcot Foot and can continue to experience fractures. Keeping this in mind is important in making a decision about surgery.

Lindsay had reconstruction surgery for Charcot Foot and has experienced amazing results. She is one of the few we know who have had favorable results. Prior to her successful surgery she experienced a botched surgery. The second time around Lindsay interviewed doctors until she found someone specializing in Charcot Foot. She encourages others to do the same. She also prepped her body for surgery, taking supplements and eating a healthy diet to get her A1C in a healthy range.

Since having surgery she has regained about 50 percent of her arch and will be able to wear shoes with custom inserts.

Stabilizing Charcot Foot

Jessie also had surgery as a result of Charcot Foot. Prior to being diagnosed with Charcot Foot she experienced a Lis Franc fracture. When the surgeon went in to repair the fracture and dislocated metatarsals he recognized it was Charcot Foot. Jessie’s foot was stabilized with pins, plates and screws. While she healed well from surgery and her toes have remained in placed her rocker bottom persists.

Jessie and her surgeon agree that she will have no further surgeries. In her case, surgery is very high risk with a very low chance of success. The time spent non-weight bearing after surgery when it won’t lead to a long term solution isn’t something Jessie is willing to consider.

“I’m glad I had the first surgery,” Jessie said. “It did realign my toes and I can now walk with AFO braces. But the next surgery I have will be to amputate. I’m young, 39, with two small children. I’m not willing to have surgery, be non-weight bearing and not have a permanent fix. I miss too much time with them. I have no doubt I could rehab quickly after an amputation and be in a better position to parent than I would be sitting on the couch after multiple surgeries.”

Treating infection

Courtney has had multiple surgeries on both feet due to Charcot Foot and secondary infections. She has had ulcers that were slow to heal and has experienced many slow healing wounds due to diabetes and Charcot Foot. Her surgeries have included the removal of two toes, one surgery with an external fixator, two corrective surgeries to treat wounds and infection following her external fixator surgery and a surgery to clear infection from an infection related to an ulcer. She anticipates more surgeries in her future.

“I’ve spent 22 of the last 36 months non-weight bearing and recovering from surgery,” Courtney said. “A lot of people think I should just give up and go with amputation but I don’t want to go that route yet. I do think the surgeries have helped me keep my feet. I’m just not as mobile as I’d like to be.”

Creating a Treatment Plan

When considering Charcot Foot surgery or any Charcot Foot treatment option you should always work with your surgeon or physician to create a treatment plan you are comfortable with. For Lindsay, that meant finding a qualified surgeon and preparing herself for surgery so she would have the best outcomes. For Jessie, that means keeping her feet stable as long as possible and then moving forward with amputation. For Courtney, that means multiple surgeries with a goal of keeping her feet as long as possible.

The key to any surgery decision is your comfort level and your overall health. Each person with Charcot Foot is different. What may be a good plan for one person may be a horrible plan for another. If you aren’t comfortable creating a treatment plan with your physician you need to find a physician you are comfortable with.

No surgery decision can be taken lightly. You should always consider your risk factors and ultimate goals for living with Charcot Foot. Other factors to consider are:

  • Your A1C (If your blood sugar is not under control you should not have surgery)
  • Your overall health (Think blood pressure, weight, risk for blood clots, how well you heal)
  • Time away from work (How long will you need to be non-weight bearing)
  • Support from family and friends (You will need help in the first days/weeks after surgery)
  • Will surgery help you meet your long-term goals

Always talk over all of your concerns with your physician and never hesitate to get a second or third or fourth opinion.

Have you had surgery to treat Charcot Foot? If you are willing to share your surgery experience please contact us.

How to explain Charcot Foot to others

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We love getting questions from readers! We recently had a reader contact us and ask for tips on how to explain Charcot Foot to others. They expressed frustration that people rarely know what Charcot Foot is and even if they do know what it is they don’t seem to understand how it really impacts their every day life. As we read the email we could relate. Lack of knowledge about Charcot Foot is the main reason we started this website. This was a question we knew we could tackle!

Charcot Foot 101

We recommend starting with Charcot Foot 101 when explaining it to close friends and family. They probably have no idea what Charcot Foot is but it’s likely they want more information than your neighbor. In this situation we like to give a medical explanation and a personal explanation. Our medical explanation of Charcot Foot usually goes something like this:

“Charcot Foot is a serious condition, caused by peripheral neuropathy, which leads to the weakening of the bones, muscles and tendons of the feet. Charcot Foot can lead to deformity, disability and even amputation. Charcot Foot can’t be cured and I am likely to experience fractures in my feet and continued problems related to Charcot Foot throughout my life.”

Now, the above response really focuses on the medical aspect of Charcot Foot and what most people experience. It doesn’t give people a clear view of how it impacts you personally. We encourage you to give a more detailed explanation of your experience with Charcot Foot so people understand your situation a little better. It doesn’t have to be super lengthy if you aren’t comfortable with that but it can still give them a clearer view. Something like this would be completely appropriate:

“Because of Charcot Foot I’ve had one surgery on my foot and I have had to be non-weight bearing for five months. My arch has collapsed and I have a rocker-bottom foot which makes it very hard for me to balance so walking is challenging.”

This might also be a good time to give them some resources so they can understand Charcot Foot. You could refer them to our website where we have several articles about the stages of Charcot Foot, Charcot Foot Deformity and Charcot Foot Terminology. They can also find many journal articles and resources online. Jessie, even published a short E-book all about Charcot Foot, called I Miss My Shoes: Living with Charcot Foot.

Impact of Charcot Foot

Much of the frustration that we experience surrounding explaining Charcot Foot is clearly describing how it impacts our lives. Our family members or friends may think it is just a foot issue. They may have the false idea that after surgery we will be just fine. They may even think we are making a bigger deal out of it than necessary.

While this can be insensitive of them it is still our responsibility to be honest about the impact of Charcot Foot. With family members and friends we encourage open conversations about all the ways your life has been affected by this diagnosis. Explain the isolation you may be feeling, talk about the pain, describe the multiple doctors appointments and the frustration you feel about misdiagnosis or lack of treatment options. Charcot Foot can lead to depression and anxiety or exasperate those feelings, share how you are feeling openly and honestly. The only way people will ever understand is if we are honest about it.

If you don’t feel comfortable sharing your own experience or you want to help them understand how Charcot Foot varies between person feel free to share Jennifer, Jessie, Lindsay, Joe or Charlie’s stories with them.

Telling the neighbor lady

We all have the neighbor lady, the gentleman at the library, the paperboy, or some other kind but nosy person in our life who asks us questions. They may ask, “what happened to your foot,” or possibly, “what’s wrong with you”. In these instances we recommend only telling what you are comfortable with. It may be as brief as these responses:

“I have Charcot Foot, a condition that causes the bones in my feet to deteriorate and break.”

“I broke my foot.”

“I have a diabetic foot issue.”

“It’s none of your business and I don’t feel like discussing my medical history with you.”

Explaining Charcot Foot can be challenging but remember you are in control of the information you provide people. You can be in-depth with family and friends and you also have the right to provide no information. You can even change your mind based on how you are feeling the day you are asked. You are entitled to your feelings and allowed to tell people you don’t want to talk about it. You are also allowed to share pictures, tell surgery stories, or provide a ton of detail if you like. The ball is in your court.

Do you have questions about Charcot Foot? Contact us and we will try to answer them to the best of our ability or direct you towards a more appropriate resource.

Foot Care 101

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You may think you know how to take care of your feet but chances are you could improve your total foot care routine. Diabetic feet are incredibly fragile and once you have Charcot Foot it becomes even more important to practice total foot care to keep your feet! Let’s review some foot care 101 and make sure you are on track for keeping those diabetic feet healthy!

Total Foot Care

Foot problems are no laughing matter. Keeping diabetic feet or feet impacted by Charcot Foot healthy has to be a top priority. That means practicing total foot care. By that we mean carrying for your entire foot all of the time. Total foot care involves protecting your feet throughout the day and caring for them each night.

Part of total foot care is developing regular relationship with your podiatrist or orthopedic surgeon. Maintaining a regular appointment schedule will help your physician track your progress and quickly recognize and treat any new issues. Some physicians actually offer foot clinics, where they only perform foot checks during the hours of the clinic. Attending a foot clinic can save you time and encourages regular foot exams. In our experience foot clinics have proved to be helpful.

Protecting your feet

One of the best things you can do to prevent future foot problems is to protect your feet. Lindsay tells us she lets her feet touch the ground without some type of shoe. She even showers in heavy duty Crocs to protect her feet. She is a great example for all of us on properly protecting feet.

While the first goal is to always avoid walking barefoot it is also important to make sure you are wearing high quality shoes. Avoid sandals, flip flops, high heels, cheap tennis shoes, ballet flats, etc. Talk with your doctor to determine if diabetic shoes or custom orthotic inserts may be right for you. Always follow your physician’s instructions regarding proper shoes.

Many of us with Charcot Foot wear CROW boots or AFO braces. These are both great options to protect your feet and prevent additional injury.

Daily Foot Care

When you have Charcot Foot your feet need attention every single day, no excuses! Each day you should wash and dry your feet and inspect them. As you look over your feet you should be checking for any new foot wounds, blisters and breaks in the skin. It’s also a good idea to check for dry patches of skin and any red marks which may be caused by orthotics not fitting properly.

Each day you should apply a high quality lotion to your feet to treat and prevent dry skin. Jessie tells us she tried dozens of lotions before her wound care doctor told her about Atrac-Tain Superior Moisturizing Cream. She now swears by it and buys it in bulk.

“I tried so many lotions and still had horribly dry skin on my feet,” Jessie said. “Since I started using Atrac-Tain almost a year ago I haven’t had dry skin other than when I was in a cast for a significant period of time and couldn’t use it. It helps exfoliate and moisturize. I’ll never use anything else!”

If you notice a foot wound or sore on your foot you should contact your doctor as soon as possible. What may seem like a small issue can turn into a serious problem very quickly. It never hurts to have a doctor take a look and say, “no big deal”. But delaying treatment could end up costing you your foot.

Other items we have found helpful in caring for our feet are these foot alignment socks. Jennifer was the first to tell us about them and now we are all fans! They gently separate the toes and help with neuropathy pain. They are also adorable. If we can’t have cute shoes we can at least have cute socks.

Beth says she has found wearing these compression socks to be helpful in reducing swelling and pain. You should talk with your physician first about compression socks and what the best option would be for you.

We know that foot care can seem like a burden from time to time. It is easy to think it is something that can be put off until tomorrow. But it isn’t. When living with Charcot Foot or trying to protect diabetic feet it is essential to etch out the time each day to take care of your feet. The investment is worth it!