Charcot Foot Support

Charcot Foot surgery

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.

Foot Surgery Recovery Tips

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When you have Charcot Foot it is likely you will undergo at least one foot surgery and possibly more. While the effectiveness of surgery in treating Charcot Foot is regularly debated there are times it just cannot be avoided. When surgery is performed on an individual with Charcot Foot it is especially important to do everything possible to ensure the recovery process goes well. We talked with several people who have undergone Charcot Foot surgery to get their best foot surgery recovery tips to share with you.

Before Foot Surgery Care

Some of the most important steps you can take to ensure your foot surgery recovery is successful will take place before you ever have surgery. Planning ahead can save you foot surgery recovery time and improve the outcomes of foot reconstruction surgery.

Lindsay is a wonderful example of how to plan for foot surgery. She interviewed several surgeons before setting a surgery date, ensuring she was working with a competent surgeon. She also changed her diet prior to surgery and added vitamins and minerals to her diet to help encourage bone growth. She ate to her meter and maintained a stable A1C which also encourages healing.

The steps she took ahead of time helped achieve a very successful outcome of her foot reconstruction surgery.

Prior to her foot surgery, Jessie made extensive plans for her recovery period, including moving out of a third floor apartment and into a one story residence. As a single mom of two small children she knew she would need help to ensure she could stay compliant with being non-weight bearing. She made arrangements for family and friends to come help care for her children, made meals in advance which were frozen and could be thawed later and arranged for transportation to and from her medical appointments.

Here is a checklist of things to do prior to surgery to make your recovery period easier:

  • Fill any prescriptions your doctor gives you
  • Make physical therapy appointments and follow up appointments as recommended by your doctor
  • Prepare meals in advance and freeze them
  • Arrange for transportation as needed
  • Order any specialized equipment you will need at home. This includes crutches, knee scooter, shower chair or stool, cast cover for use in the shower, ice packs and grabbers.
  • Maintain a healthy diet and follow any pre-op instructions from your doctor

After Foot Surgery Care

Foot surgery recovery time varies for everyone but your physician should be able to give you a good idea of how long of a recovery period you are looking at. One of the most important ways to ensure your foot surgery recovery time is as short as possible is to make sure you are compliant with your doctor’s orders. If you are instructed to be non-weight bearing, then you need to be non-weight bearing. Not following doctor’s orders can set your recovery back and can lead to complications.

Pain can delay healing so make sure you talk with your doctor about how to maintain your pain after foot surgery. While some people experience little to no pain others have significant pain. Ice and meditation can also help with pain. Don’t rely solely on pain medication rather a variety of pain management techniques will be most beneficial.

When blood sugar levels are high it is hard for the body to heal. During Jessie’e foot reconstruction surgery recovery she made sure to keep close tabs on her blood sugar, using a continuous glucose monitor and maintaining a healthy diet.

Attend all foot surgery follow up appointments as recommended by your doctor. These appointments may be a challenge to get to but they allow your doctor to assess your recovery, identify any issues and treat and prevent infections.

If you feel like you are having post foot surgery complications of any type, contact your doctor right away. Significant redness, oozing from the surgery site, a temperature over 98.6 degrees are all indicators of infection. It’s important to address any complications as soon as they arise as it can save you in the long run.

Keep an eye on your mental health during the foot surgery recovery time. Being non-weight bearing and home bound can lead to feelings of isolation and depression. If you begin feeling depressed, let your family, support people and doctor know. It can help to have friends or family members come to visit during your foot surgery recovery to help keep your spirits up.

No matter how much you plan and prepare in advance of foot surgery the foot surgery recovery time is challenging. It’s not easy to recover from foot surgery but it is possible. Maintain an open relationship with your doctor and address all your concerns as they arise. Keep in mind, you are not alone! There are many of us with Charcot Foot who have been through the same thing. Reach out to others for support as well.

Living with Charcot Foot: Mark’s Experience

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Mark is a 64-year-old male living in Texas who has been battling Charcot Foot for over 10 years. He experienced delayed diagnosis, two difficult surgeries and has embarked on his own crusade to try to manage Charcot Foot to the best of his ability. We are so thankful he is willing to share his experience living with Charcot Foot.

Foot Pain

Mark says he has experience foot pain or sore feet every day for the last 20 years. Long before his Charcot Foot diagnosis he was experiencing foot pain but wasn’t certain why. He often attributed the pain to being on his feet for long hours during work.

“I was a police officer for 28 years and spent 20 of those years on a walking beat,” Mark said. “I easily walked 15 miles in a shift so having sore feet just seemed like part of the gig. The sore feet changed to actual pain at some point but I just thought it was the job.”

He had side of foot pain and pain on top of the foot mainly. He also regularly experienced swelling and on occasion his foot would be hot and red. He would rest for a few days and the swelling and pain would subside.

Charcot Foot Diagnosis

After a particularly long week at work Mark experienced extreme swelling and pain. He couldn’t walk because of the swelling in his right foot and his left foot was almost as bad. He scheduled an appointment with a doctor and was diagnosed with Cuboid Syndrome. Cuboid syndrome is the result of partial dislocation of the bones in the middle of the foot. He sought a second opinion and was diagnosed with a Lis Franc fracture as well as Cuboid Syndrome. He underwent his first foot surgery at that time.

“I should have never had that first surgery,” Mark said. “My gut was telling me both doctors were wrong but I just wanted to feel better and get back on my feet. It was about eight weeks after the first surgery I realized how wrong they had been.”

At his two month follow up surgery it was obvious he had a rocker bottom and his doctor mentioned Charcot Foot for the first time. Mark remained non-weight bearing for another two months after surgery and then went into a CROW boots. He maintained with the CROW boots for another five years.

Foot Surgery Recovery

Five years after his first surgery Mark had foot reconstruction surgery done and had external fixators. The recovery process was long and fraught with complications. He had several infections which delayed recovery and had a difficult time managing his pain.

“I will never put myself through a surgery like that again,” Mark said. “I have never wanted to eat a bullet so bad in my life. The recovery process was horrible and not worth the end result.”

Mark admits he began taking too much pain medication during the recovery stage which led not only to an increase in his depression but also addiction. After eight months non-weight bearing Mark was finally released to walk. After everything he had been through he had to return to the CROW boots and was addicted to pain medication. He knew he had to take control of his own care.

Regaining control

Mark checked himself into a drug and alcohol treatment center and stayed there for 45 days. He was able to get off of the pain medication and did a lot of therapy to help him process how much his life was changing due to the Charcot Foot. Over the course of his time in treatment he was able to get a clearer view of what he needed to do to get healthy.

“Going to treatment was the smartest thing I ever did,” Mark said. “I had support, I had people helping me set goals, helping me see there was still a future. Most of all I learned how to manage my pain in a healthier way.”

Upon leaving treatment Mark began exercising daily, he swims, does chair workouts and strength training. He also began making time to meditate every day which he credits with helping manage pain as well as stress. He has changed his diet and dropped his A1C to 6.2 from over 10.

“My goal is to get as healthy as possible before I have my feet amputated so I can recover well and get back to living,” Mark said.

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

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: 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.