Charcot Foot Support

Charcot foot deformity

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.

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.

Why is this happening to me? Beth shares her experience with Charcot Foot

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Beth is a 46-year-old Type I Diabetic who was diagnosed with Charcot Foot in 2010. She is sharing her experiences living with Charcot Foot in hopes of helping others.

When Beth first heard the words, diabetic Charcot Foot, from her physician she was confused. She had actually heard about Charcot Foot years previously but never thought it would happen to her.

“Diabetic Charcot Foot, he actually said diabetic Charcot Foot and I couldn’t believe it,” Beth said. “I had a good A1C, I took care of myself, how was this happening and why was it happening to me.”

Beth was diagnosed with Type 1 Diabetes when she was only 18 months old. She reports in her early childhood her blood sugars were never controlled. Her home life was chaotic and her parents were unable to successfully manage her health needs. She was frequently hospitalized due to high blood sugar. It wasn’t until she was a teenager, when she was in control of her own health, that her blood sugar returned to a stable range.

She says she maintained her A1C consistently between 6.5 and 7.8 from the time she was 16 until she was in her early 30’s. At the age of 32, Beth experienced a significant trauma, her young son died in a tragic farm accident. The grief sent her into a spiral of depression.

“After Ben died I couldn’t function,” Beth says. “I was in such a deep depression and I couldn’t manage to get out of bed and shower most days, let alone take care of my diabetes. I spent close to two years with very high blood sugars while I tried to pull myself together.”

Eventually the grief and depression lifted, though still present, it wasn’t as intense and Beth was able to begin caring for herself again. Her blood sugars returned to normal and her A1C returned to 6.8. She was happy with the progress she had made and was even able to return to work for the first time since her son died. She was thrilled to return working as a nurse at her local hospital.

Not long after returning to work Beth experienced significant swelling in her feet. She said she thought it was due to working 12 hour shifts after a few years of laying in bed. But the swelling became intense and she noticed it was becoming harder to walk. Then one day she fell.

“I was walking back from the mailbox and went to step up on the curb and I just fell,” Beth says. “It was like my foot just gave out. It hurt but not bad. I got up and went back to the house and went about the rest of my day. That night I took of my shoe and was blown away.”

What Beth saw was a large bulge on the side of her foot. She knew instantly the bulge was from a broken bone. How had she broken her foot and not realized it? She was stumped. But she also knew from the color of her toes she needed medical care soon. Her toes were swollen and a blueish purple color.

At the hospital Beth underwent x-rays and her foot was in fact broken in several locations. She was referred to an orthopedic surgeon and met with him the next day. It was then she first heard the dreaded words, Diabetic Charcot Foot.

“I was angry when he told me,” Beth says. “I know there were periods of time that my blood sugars were high but overall I thought I was doing well. To find out I had this pissed me off. I knew what it meant for me and I wanted none of it.”

She wanted none of it but Charcot Foot was here to stay. Beth has now undergone two surgeries on her right foot and one surgery on her left foot. She has significant Charcot Foot deformity including the infamous “rocker bottom”.

“The Charcot Foot deformity has been rough,” Beth says. “My feet are so deformed it is almost impossible to walk. I haven’t been able to work as a nurse for the last five years. It still makes me sad and angry and I still wonder why this is happening to me.”

Beth does wear orthotics to help her walk which she says does help with the balance issues caused by the Charcot Foot deformity. She also regularly uses a knee scooter. She maintains her blood sugar at a healthy range and has experienced no other diabetic complications.

We thank Beth for being willing to share her experience on living with Charcot Foot. If you would like to share your experience please contact us. You can read about Jessie and Charlie’s experiences as well.