Charcot Foot Support

Charcot Foot Treatment Options

Charcot Foot Doctors: What to Ask

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Trying to find a doctor who is knowledgeable about Charcot Foot can feel impossible. There are very few podiatrists or orthopedic surgeons who have experience with Charcot Foot. The lack of education surrounding Charcot Foot makes it crucial that you take charge of your medical care and ensure you find a doctor who knows what they are doing. Many individuals with Charcot Foot have found it helpful to meet with several physicians and interview them prior to committing to a doctor patient relationship. If you are meeting with doctors here are some questions you should ask.

How much experience do you have with Charcot Foot?

Before you commit to a doctor they should be forthcoming about their experience with Charcot Foot. Ask them some in-depth questions surrounding their experience.

  • What are your educational qualifications and do you have any special training in Charcot Foot?
  • How many patients have you treated with Charcot Foot?
  • What types of outcomes did your previous patients have?
  • How many surgeries have you performed on patients with Charcot Foot?
  • What were their surgery outcomes?

Some doctors have much more experience with Charcot Foot than others. It doesn’t hurt to ask about their past experiences, their residency and educational experiences. You aren’t asking for patient identifying information so the doctor should be able to give you anecdotal information about previous Charcot Foot patients, their surgeries and outcomes.

“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. ”

What are your thoughts on Charcot Foot surgery?

Some surgeons are very quick to want to attempt reconstructive surgery on those with Charcot Foot. Others are more hesitant. It’s important to know where your doctor stands. Here are questions to consider posing.

  • Do you believe foot reconstruction surgery could be successful for me?
  • Since surgery doesn’t cure Charcot Foot how many surgeries do you anticipate me needing.
  • What are your recommendations for reconstruction surgery?
  • What methods do you use for surgery, pins and plates, external fixator, etc.
  • What factors influence your decision regarding surgery? Blood sugar levels, other health conditions, etc.

Foot reconstruction surgery is a big decision with many factors to consider. You should be able to work with your physician to develop a Charcot Foot treatment plan you both agree on and are comfortable with.

What is your experience with amputation?

Amputation is something we all want to avoid. However, the reality of Charcot Foot shows us time and again that individuals with Charcot Foot often end up undergoing a below the knee amputation. Talk with every doctor you see about their experience with amputation.

  • How many of your Charcot Foot patients end up having a BKA?
  • What factors lead you to recommending a BKA?
  • Do you perform BKA’s yourself or do you have another surgeon you refer patients too?
  • If I don’t want to pursue additional reconstructive surgeries but would like to move towards amputation would you support that decision?

Amputation is another big decision those with Charcot Foot must face. Having a physician who is comfortable having those difficult conversations and who is willing to guide you through the process is beneficial.

Advocating For Your Medical Care

Physicians are intelligent human beings, they have attended school and gone through years of training. However, they don’t know everything and they don’t know you. You know your condition and situation better than anyone else. This means you have to be your own advocate to ensure you get the best medical care you can.

Jennifer, who is living with Charcot Foot, shared her experience with us before and offers some wonderful tips on how to advocate for your own care. You can find those, here.

The most important thing is finding a physician you are confident in and can have open conversations with. Charcot Foot is a lifelong condition which means you and your physician will be working together for a significant period of time.

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.

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.

Living with Charcot Foot: Jennifer’s Experience

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Everyone with Charcot Foot has a different experience but we can all learn something from one another. Today, Jennifer is sharing her experience of living with Charcot Foot. She was diagnosed with Charcot Foot on her 43rd birthday.

Charcot Foot Diagnosis

Jennifer had been experiencing neuropathy pain and numbness in her feet and legs for several years. She had also begun to have swelling in her feet. She and her doctor originally thought the swelling was a side effect of medication she was taking. She discontinued the medication but the swelling persisted. Just a week before her first fracture she hiked in the Catskills.

“I went hiking with this in the Catskills and didn’t know,” Jennifer said. “I knew I had an appointment with my endocrinologist in a week and thought I would bring it up to him.”

After returning from her trip she planned to see her doctor to discuss the continued swelling. Before she made it to the doctor for her appointment she fell on her stairs while taking her dogs out for a walk. X-rays showed she had a fractured left heel. At her three week follow up appointment the bone hadn’t begun to heel and she first heard the mention of Charcot Foot.

“I had the compression heal fracture and go back for the three week follow up and there is no healing and I thought that isn’t good,” Jennifer said. “And my podiatrist said I hope this isn’t Charcot.”

Not long after the first break she began to have problems with her right foot. Going non-weightbearing on her left foot put additional pressure on her right foot. It too began to fracture.

“For five weeks I went to work on crutches, drove my car, did everything,” Jennifer said. “Then on my birthday I went to work and to my doctor’s appointment and my right foot was very swollen and there was a bump in my arch. It was so swollen you couldn’t even tell it was the bone. I go for an x-ray and later that night he called me and told me to take the air cast off my left leg, put it on my right and get to an orthopedist. I didn’t even need him to say it, I knew from the way his voice sounded it was Charcot Foot.”

With both feet in the acute stage Jennifer had to go completely non-weightbearing for several months. She was eventually fitted for AFO braces on both legs which she wore for more than six months. She has now been able to transition back into tennis shoes with inserts.

Advocating for your medical care

Jennifer is a pro at advocating for her medical care, a skill she honed before her Charcot Foot diagnosis but one which has proven to be especially beneficial in dealing with Charcot. When originally diagnosed with Charcot Foot, Jennifer began meeting with a number of doctors, interviewing three before finding one she was comfortable with.

For her it was important to find a physician who was trained and competent in treating Charcot Foot. She wanted a doctor with a good bedside manner and one who wasn’t eager to do surgery. Once she found the right foot doctor she was able to develop a Charcot Foot treatment plan which worked for her.

Jennifer struggle with other health issues in conjunction with Charcot Foot. One way she continues to advocate for her medical care is by maintaining detailed records. Because she sees a number of physicians for different medical conditions she keeps copies of the records to quickly and easily share when she is at her various appointments. In regards to her Charcot Foot she always gets copies of her X-rays on a disc.

Some of her others tips for being a good advocate for yourself include:

  • Be the expert and learn everything you can about Charcot Foot or the condition you are being treated for.
  • Don’t rely on doctor’s to have all of the information. Remember you should know your body and condition best.
  • Don’t be afraid to ask for a second, or third or fourth opinion.
  • Ask questions, any and all questions.

Charcot Foot Treatment Options

One of the first doctors Jennifer met with recommended surgery during her first appointment. His quick desire to perform surgery left Jennifer concerned. She wanted to explore different Charcot Foot treatment options.

“He came in and I started asking him how much experience he had with Charcot and he didn’t really answer me,” Jennifer said. “He was very full of himself. I then asked him what are my options. He is now scheduling me for mid-foot fusion the next week. I was like, wait, you want to fuse my foot. First of all, I had all this swelling, fresh fractures, and my hemoglobin A1C was 10.6. He was going to cut into my diabetic foot with a 10.6.”

For her and many others with Charcot Foot surgery is not the right answer. There are many risks associated with surgery including additional injury, infection and amputation. At the end of the day surgery will not cure Charcot Foot so it was important to her to explore all the other options.

“These surgeries, fusions, external fixators, are only temporary fixes,” Jennifer says. “When you go into a surgery for the first time you need to know it is a very likely possibility it won’t work and all you are doing is now you are sitting longer and having to heal longer to only have more surgery. I feel like people think surgery is the answer to this and it’s not. I feel like people really need to understand surgery isn’t going to fix this. You aren’t going back to how you were before this happens. You still have Charcot.”

Jennifer did find a physician who was supportive of her and had a good understanding of Charcot Foot. Her physician recommended the following Charcot Foot treatment options.

  • Go non-weightbearing during the acute stage of her Charcot Foot
  • Wear AFO braces as prescribed
  • Wear custom inserts and appropriate shoes

Jennifer has been diligent with following her doctors orders. She says when she should be non-weightbearing, though it is difficult, she is completely compliant.

“When I’m non- weightbearing it’s non-negotiable,” Jennifer says. “If the doctor says to be non-weightbearing, I’m non-weightbearing.”

Moving forward

Currently, Jennifer’s feet are stable. She wore AFO braces for over six months and has now transitioned to tennis shoes with custom inserts. She isn’t naive and knows that it is likely she will have additional problems in the future. However, she tries to have fun and keep a sense of humor about the situation.

She has been able to go on vacation recently. Making visits to the pool and the beach have become a reality again. On St. Patrick’s Day she ventured out with friends for a pub crawl. She was nervous, as it was her first outing with braces, but says her friends checked in on her throughout the night to make sure she was doing okay.

“I am really lucky to have such a great support system,” Jennifer says.

Jennifer has mourned the loss of her beloved shoes. She now focuses her attention on enjoying fun socks and slippers. She recommends Happy Feet toe separator socks. They come in several colors and are fun but she says they also help tremendously with toe cramping.


With her feet currently stable Jennifer is enjoying the moment and taking the time to focus on some other health concerns. We appreciate her willingness to share her experiences with us. Jessie, Charlie and ""” rel=”noopener noreferrer”>Beth also have Charcot Foot experiences to share. If you would like to discuss your experiences with Charcot Foot contact us.