Charcot Foot Support

Archives for September 2019

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.

Improving Balance With Core Stability Exercises

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We all know that when you have Charcot Foot one thing you most likely don’t have is balance! When you have a rocker bottom foot or are trying to maneuver in some type of boot or orthotics you can feel very unstable. It’s not uncommon for individuals with Charcot Foot to stumble or fall due to lack of balance which can be scary and lead to injuries. So how do you improve your balance? By strengthening your core muscles!

Core Strength Matters

Core strength matters because your core works like a foundation, keeping all the other parts of your body connected and working properly. When your core is weak it can lead to bad posture, lack of balance and pain in your shoulders, back and hips. If your core isn’t strong your arms and legs can’t possibly function at their full potential.

How To Strengthen Your Core

The best way to strengthen your core is by doing core stability exercises and core strengthening exercises. We know what you are thinking, “I can’t exercise because I have Charcot Foot and I’m non-weight bearing.” Well, your thinking is wrong! You can do core exercises even if you are non-weight bearing. Core exercises can easily be done from a chair, in a seated position.

No excuses! You can strengthen your core with these core exercises. Both of these seated workouts are short and easy to do at home, in a chair. If you can bear weight that is awesome, you can do even more to strengthen your core but regardless of your ability to bear or not bear weight you can do core exercises. Check out two of our favorite core exercise videos.

Other Core Exercises

We know you really want that strong core because we know you don’t want to risk a fall. We try to do one of the core exercise videos each day to get a strong core but sometimes we like to go the extra mile. An easy core exercise is using an Inflated Stability Wobble Cushion.

It sounds crazy but this little inflatable cushion actually works your core muscles and helps build a strong core. All you do is sit on it! The perfect piece of exercise equipment for someone with Charcot Foot! The cushion wobbles a bit which forces you to use your core muscles to stay stable.

One of the best ways to strengthen your core is to practice good posture all the time. Be mindful of your posture when you are sitting and when you are walking. Your head should be above your shoulders and the top of your shoulder should be over the hip. Sitting up tall and maintaining good posture will help you get that strong core you need.

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.

How to navigate large events with Charcot Foot

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When you have Charcot Foot you frequently have to miss out on large activities or events. When you are non-weight bearing you won’t be planning any trips with the family to the zoo or an amusement park. The state fair or a large sporting event are off the list too. But when you are able to bear weight is it possible to attend large events? We have had many readers ask us how we manage activities and events without overdoing it. So here are a few of our tips.

Plan ahead

Before attending a large event we recommend doing a little recon. Most events or locations have websites associated with them. Visit the website and see what information you can gather about parking and any accommodations they may offer.

“I wanted to take my children to a large zoo but knew I couldn’t walk that far,” Jessie said. “So I got online and checked out the zoo’s website. They actually had electric wheelchairs available to rent. I called ahead and reserved a wheelchair for the day we were going and it made the trip a breeze.”

If you can’t find the information you need on the event or location website pick up the phone and give them a call. Ask about parking options, electric scooter or wheelchair rental and if they offer any assistance to those with disabilities.

Also consider printing out a map of the location you will be going ahead of time. If there are certain attractions you know you really want to see make it a point to visit those first. Then if you become tired or experience difficulties and need to leave early you haven’t missed out on your top destinations.

Planning ahead will help make you feel more relaxed the day of the event so you are able to really enjoy yourself.

Ask for assistance

Charlie loves to attend sporting events and has found attending professional football and baseball games to be easier than he expected. Both of the stadiums he visits offer assistance for those with disabilities. He parks in the handicap section and then an assistant comes with a golf cart to give him a lift.


“They will take me right to my seat and even come back to check on me to see if I need help getting to the restroom or need a snack,” Charlie said. “I don’t have to miss out anymore.”

Most large destinations, like amusement parks, offer parking lot tram services. Most frequently, the trams stop very close to handicap parking spots. You can catch a ride on the tram to the entrance where you can rent a scooter or wheelchair for the day.

Even if a location doesn’t offer the kind of assistance Charlie receives most locations offer some type of assistance. Simply ask an event worker or location employee for the assistance you need. The majority of the time they are happy to help.

Go prepared

When attending a large event make sure you leave the house prepared. Always wear the shoes/boots/braces your doctor recommends. Take any medication you will need with you and pack a snack. The last thing you want is for your blood sugar to drop while you are out and about and trying to enjoy yourself.

“When I go to large events, like concerts, I always make sure I have my medical alert bracelet on,” Pam said. “I also make sure my little information packet about Charcot Foot and Diabetes is in my purse. That way if something were to happen the paramedics would know quickly what may be wrong.”

It also never hurts to take another person with you. Plan to attend larger events with a family member or friend who can offer assistance as needed. If you are taking your children to an activity or event it can be helpful to have another adult with you to help manage the situation and support you.

If you have questions about living with Charcot Foot, contact us. We are happy to try to track down the answers for you.

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.

Top Rated Shower Stools and Chairs

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The bathroom is the most common room in the home for people to fall. Individuals with Charcot Foot are at an increased risk of falling due to lack of balance caused by the rocker-bottom of our feet. Shower stools and chairs are one of the best ways to increase your safety in the bathroom. Using bath and shower safety aids will increase your safety and reduce your fall risk! Here are the top rated shower stools and chairs on the market and our thoughts on them.

Carex Compact Shower Stool

The Carex Compact Shower Stool is an aluminum bath seat that holds up to 250 pounds. As the name suggests it is very compact shower seat which makes it perfect for narrow shower stalls and tubs. It is height adjustable and includes slip resistant shower leg tips. The height adjusts from 16″ to 21″.

What we like

  • Easy to assemble
  • Light weight so it is great for travel
  • Fits in narrow spaces
  • Price is right at $26.99
  • Sturdy

What we don’t like

  • It doesn’t have arms or a back
  • Only holds 250 lbs

“This is the shower stool I take with me when I travel,” Beth said. “It is easy to assemble and take apart, stores in a compact space and works in any bath or shower.”

OasisSpace Heavy Duty Shower Chair with Back

The OasisSpace Heavy Duty Shower Chair with Back is a bath chair with arms designed to hold up to 300 pounds. This shower chair is FDA cleared, the highest standard in medical shower chairs. It is easy to assemble – no tools required. It has six height settings and has a padded seat and back for added comfort.

What we like

  • Very comfortable with padded seat and back
  • Has back and arms for added stability
  • More modern bath stool than others we have seen
  • Easy to assemble
  • Adjustable height

What we don’t like

  • Tight fit in smaller tubs
  • It’s a little heavy and awkward to take in and out of the tub

“I have had a couple different shower chairs over the years but I like this one,” Charlie said. “As an amputee I like having the arms and back in case I get off balance. This is a sturdy chair even for a big guy.”

MOBB Premium Bathroom Swivel Shower Chair

The MOBB Premium Bathroom Swivel Shower Chair is a 360 degree swivel shower chair. It includes removable padded arm rests and a padded seat and back. The chair locks in 90 degree increments and has slip resistant tips. It is made of lightweight aluminum and easy to install.

What we like

  • The swivel shower chair makes transferring in and out of the shower easy
  • Very comfortable
  • Adjustable height and removable arms
  • Best shower chair for the disabled
  • The swivel locks if needed

What we don’t like

  • It doesn’t work in narrow showers or tubs
  • Not good for travel

“When I moved I splurged on the swivel chair and have no regrets,” Joe said. “Worth every penny.”

Bath and Shower Safety Aids

Bath and shower safety doesn’t end with a shower chair, even a really great one. You can increase your safety by using safety rails or grab bars to help steady yourself. Non-slip shower mats will reduce your risk of slipping. Hand held shower heads means you won’t have to move as much in the shower. It may be annoying to have to use so many safety aids but it can prevent falls and prevent additional breaks in your Charcot Foot.

Check out our review of the iWALK2.0 Hands Free Knee Crutch . If there is a product you would like us to review, contact us.