Over 25 Diseases Make Charcot Worse

I often am asked,” What makes Charcot worse?” There are at least 24 diseases that cause Charcot to become worse and most recently I came across a gentleman that told me he was diagnosed with Restless Leg Syndrome and has Charcot.

I asked a specialist on steroids why Corticosteriod use was number two on my list of things that make Charcot worse? He said, “because it depletes calcium in ones system, thus weakening the bones”. My husband has COPD and Corticosteroids are used a lot with this condition.

Diabetes heads the list that causes Charcot to become worse. I often spend much of my time with it as I am also a diabetic. Now that the Diabetic association calls the foot deformity problem “Diabetic (Charcot) Foot.” This is quite a change after talking with them the first time when they asked me, “Who manufactured Charcot”.

The following list of diseases by Ali Nawaz Khan MBBS Riyadh, Saudi Arabia appeared in an article in e-medicine on Feb. 21, 2007. I added and Corticosteroid use and Restless Leg Syndrome.

  • Diabetes
  • Use of corticosteroids
  • Alcoholism
  • Trauma
  • Infection
  • Amyloidosis
  • Prenicious anemia
  • Syphilis
  • Syringomyelia
  • Spina bifida
  • Myelomeningocele
  • Leprosy
  • Multiple scierosis
  • Congenital vascular disease
  • Charcot-Marie-Tooth disease
  • Cord compression
  • Asymbolia
  • Connective disorders, such as rehumatoid arthritis and sclerodema
  • Ehlers-Danlos syndrome
  • Raynaud disease
  • Adrenal hypercorticism
  • Thalidomide embryopathy (congenital arthropathy in offspring of exposed mothers)
  • Paraneoplastic sensory neuropathy
  • Cauda equina lipoma
  • Restless Leg sSyndrome
  • Since diabetes heads the list, diabetics need to be aware that this article says15% of the diabetic population has Charcot foot and a 2004 University of Washington study states that 1/600-700 diabetics with diabetes mellitus neuropathy has Charcot Foot. Layolia University now says 4 million diabetics in the US have Charcot and will lose their feet to amputation because they will be misdiagnosed or not diagnosed in time to save their feet. A retired Diabetic nurse educator told me, “anyone with peripheral neuropathy long term, 10 years or more will have Charcot Foot Deformity. Their care, observation skills, and their willingness to seek Knowledgeable medical help, will determine whether or not they will be an amputee.”

    Charcot is, apparently, difficult to diagnose and is often miss diagnosed as arthritis. One needs to find a Charcot knowledgeable professional. A Podiatrist DPM, or a foot and ankle specialist (surgeon) DPM, FACFAS who is able to diagnose correctly.

    Since neuropathy is a loss of sensation, one is unable to detect pain or its source. A doctor once told me a patient came into her office unable to remove his shoe and couldn’t understand why. When she looked at the bottom of the shoe she found a nail. It had gone through the shoe and well into his foot. It was removed and the shoe taken off to reveal a traumatic situation. Because of Neuropathy much goes undetected that could save the foot. Pain is a warning sign, but those with neuropathy don’t get the message.

    If you don’t have someone to help you check your feet, place a mirror on the floor that can be used to check your feet daily. Also, avoid going bare foot.

    Message by the Founder Annita Shaw

    Brought toby Charcot Awareness Education Foundation

Diabetic (Charcot) Foot

It is only recently that I have read articles from the Diabetic association that refers to Diabetic (Charcot) Foot. My concern for anyone that has Charcot is the fact that if they aren’t aware an amputation will be in their future, but this can be avoided. The person must be very aware of the condition of their foot, its health, if it is changing shape in any way. Can they feel something if they step on it? No, this is neuropathy and many with neuropathy don’t realize they can’t feel. Also one foot is usually warmer to the touch than the other.

Lack of awareness and misdiagnosis are the two main reasons Charcot goes untreated.

Without treatment, Charcot can take away many of the basic functions of life: the ability to care for one’s self and family, hold a job and earn a living, exercise, and even live without pain.

Sadly, many people in general, and medical professionals will say this is not a life threatening disease. Yet, only within the past two years, one gentleman died because he underwent Charcot surgery more than once. Why? The doctors were not adequately prepared or trained to conduct this complicated surgery. They didn’t adequately prepare the patient to care for himself once home. Another was a woman who had a Charccot amputation, because of depression wouldn’t leave her home, spent much of her time on the couch, wouldn’t get dressed or answer the phone or door. She was found dead on the couch. Most recently a 60 year old man went to the hospital, had his foot amputated and lived only a few days after surgery. Yet had Charcot been discovered at an early stage, surgery could have been performed and recovery could have been only six weeks. They could have all walked again and lead a normal productive life with family and friends.

Hardware in Annita's right foot

Hardware in Annita’s right foot

How can I say this? I have Charcot and was fortunate to have had a young very knowledgeable surgeon who well prepared me for Charcot surgery. My right foot was in the last stage prior to amputation. He was able to save my foot from amputation. This was nearly a year of recovery much of it non weight bearing and in a wheel chair. My left foot also had Charcot but was in the very early stages. He preformed minor surgery (in my opinion) and recovery was six weeks and I was walking. Most who know me find it hard to believe as I had so much difficulty walking and now walk quite normally.

Message from Annita Shaw Founder

Brought to you by Charcot Awareness Education Foundation

Challenge: Communicating Charcot Foot Facts

I am sitting here feeling really frustrated as over the years I have read many articles about diabetes, yet they never mention Charcot foot deformity. I finally found a newspaper reporter in Nebraska that was interested in my story. While there, I contacted her. I was excited about her interest. We met and visited, getting to know each other. She interviewed me with the understanding, I thought, that the focus would be on Bonnie, a Charcot amputee whose story has been on this website and lives in the area. We then scheduled an interview with Bonnie at her home.

Bonnie's New CROW Boot

Bonnie’s New CROW Boot

I wanted to film the interview, but was discouraged from doing so. I wanted you, my readers, to hear and see what she had to say. The staff reporter had access to Bonnie’s story, as well as mine from the website, so I didn’t question the fact she asked only a few questions to clarify some points and spent much of her time telling us about herself.

After she left, we were concerned about what she was going to write. But figured at least we had gotten some coverage for the Charcot Awareness Education Foundation and this devastating disease. Only to learn when it came out, the headline read: Foundation Brings Awareness to Uncommon Diabetic Disease. This was up setting as there are 24 plus diseases that make Charcot worse. Diabetes only heads the list.

Charcot Awareness Education Foundation has always wanted to prevent amputation. I was fortunate in that my Charcot was diagnosed soon enough that I could undergo surgery and save my feet from amputation. Bonnie, however, wasn’t so fortunate. Recently, I learned peripheral neuropathy ( the inability to feel or sense…temperature, pain or trauma) causes Diabetic (Charcot) Foot, impacting over 10 million diabetics in the USA. Have you or do you know of someone who has diabetes and has had an amputation of a toe, a fore foot, or BK Cut? There is a really good chance they had and were not diagnosed correctly and could have avoided an amputation.

Uncommon? Diabetic Disease? I don’t think so. The headline is misleading. One study says there are 16,000,000 million diabetics another 25,000,000 diabetics in the US. That comes to 25% or 6.75% of the diabetic population has Charcot, so I believe that is a serious problem and not that uncommon. Also, Diabetes does NOT cause Charcot. It makes it worse. Not to mention all people with the 24 other diseases and Corticosteroid use that affect Charcot.

There were many problems with the write up, but I will only deal with a couple more in this article. The reporter contacted a local podiatrist who has avoided me for several years. He stated”…the leg is red hot and swollen.” Neither Bonnie, nor I, nor any other person with Charcot that I have spoken with has had a red hot swollen leg, foot maybe. these can be warning signs but not all instances are the same.

Hardware in Annita's right foot

Hardware in Annita’s right foot

Hardware in Annita’s right foot[/caption]Foot, yes.

It is hard enough to talk about Charcot Foot deformity with people, but to find the medical profession is not fully prepared to deal with it is something else. Because of this website and our brochure we have been in contact with many people. We have had millions visitors to date. We appreciate the emails, letters and phone calls along with donations that thank us for being here. Most of all, I personally, appreciate all those who have and are keeping us informed about their personal experiences with Charcot Foot, both sad and positive. Hopefully, in 2017, I will be able to bring you some new stories as I have several who are now willing to share their experiences with you.

Annita’s message concerning Diabetic Charcot Foot

Brought to you by Charcot Awareness Education Foundation

My New Clam Shell Boot

For the past few months, I have been writing about my life since the amputation of my left foot/leg due to Charcot Foot. You have read of my ups and downs and all the decisions that I faced, the big one, moving from Alaska back to Nebraska. Finding a new home and learning I was capable of living alone was a blessing. Now it is time to tell how my life with Charcot is proceeding.

Early this summer (2014), my Podiatrist advised me to get a new Clam Shell Boot, (this brace is a Charcot Restraint Orthotic Walker, C.R.O.W. or CROW Boot) for my right foot which also has Charcot. The boot, I was wearing, was not fitting properly due changes in my leg and foot. I was rubbing a callous on the bottom and out side of my right foot.

I set up an appointment with the prosthesis builder. A cast was made of my right foot and leg. In two weeks time, a new boot arrived. This would be the 3rd boot I have had since 2004. I never realized how much our bone structure or body changes, but it certainly does.

An ill fitting prosthesis can cause skin to break down and cause open sores which do not heal well, or possibly not at all. Being diabetic, I could not risk that happening with the Clam Shell Boot. The new clam shell boot fits very snug and the leg and foot do not move around in it causing sores, or calluses.

The new boot needed no adjustments, a perfect fit. As time goes by, I will be checked for any changes in my foot/leg. Small adjustments can be made at that time. If there is shrinkage to leg/foot, more padding would be added.

I have had the new boot for 3 months and no problems, or rubbing is occurring. I am very happy with the new boot.

The CROW boot or orthosis (brace) the proper name, however, is referred to as a clamshell (because of its design), or custom walking boot. This brace is padded so open sores, or Charcot foot deformity issues can have some relief and allows for healing. This brace is padded lessening shock absorption. It also limits movement, or rubbing of the problematic sight. If you do not get proper help for your condition, it can escalate. You could face amputation

Bonnie’s continuing story

Brought to you by Charcot Awareness Educaation Foundation

Care of Stump & Prosthesis

After amputation, it is very important to take proper care of the stump, cleaning it daily and following doctors orders in activities and movement. It is at least three months healing time before the prosthesis is placed on the limb, but each individual is different. I was in the hospital for 3 months after surgery, January 19, and was not fitted for prosthesis until mid April. My stay at the hospital for so long was related to other problems (see previous printings). Before being fitted for prosthesis, the wound was healed and swelling had gone down. It is not unusual for the limb to shrink further and changes need to be made to the prosthetic.

DAILY CARE:

Clean limb each day at bedtime (I use baby wipes)

Inspect limb for any red spots or sores (report them to Physician quickly)

After cleaning, apply lotion over entire area covered by prosthesis. (I use mineral oil)

Clean the prosthesis gel sleeve that covers limb (I use alcohol swabs)

I totally wash prosthetic gel sleeve every other day, there are different directions from manufactures or prosthetic team. Use what they recommend.

CARE of PROSTHESIS:
The actual prosthesis needs little or no care, however the gel sleeve you wear on the limb needs cleaned daily (see above). You will probably receive two gel sleeves with a new prosthesis. This makes it easy for cleaning/wearing times.

I AM WRITING ABOUT MY OWN EXPERIENCES AND HAVE THE OLD TYPE PROSTHESIS. CARE FOR THE NEWER TYPE ATHLETIC ONES WOULD BE DIFFERENT.

Bonnie’s continuing story

Brought to you by Charcot Awareness Education Foundation

Care Of The CROW Boot

The CROW (Charcot Restraint Orthotic Walker), or Clamshell boot protects the person’s Charcot Foot. It keeps the foot stable and prevents the foot and ankle from moving, thus avoiding ulcers, sores and bruises that create other issues for the foot.

This device can save the Charcot Foot from amputation. It’s care is relatively simple. Because it is hard plastic, it can be wiped down with a damp towel and anti-bacterial soap, or anti-bacterial moist towelettes. The purpose is to remove body oils and residue. You must wear the knee high, white preferably, diabetic type sock as your foot and leg will sweat even when wearing the socks. Bonnie has to use Lamish foot spray at times to keep the foot dry while wearing the CROW boot. This helps from getting red rub spots. Because one wears a cotton sock to the knee, when wearing the boot this should be minimal. Always remember to keep your feet clean and dry. Bonnie says one can’t stress cleaning the feet enough. It is very important and one needs to check the bottoms of your feet with a mirror once a week or more to avoid having problems.

Bonnie wears the Clamshell boot. I have not, but I wear the walking boot when I have trouble with either of my feet. They both have Charcot. Though I have had major reconstructive surgery on my right foot and things are much much better, there are times when I have had to go to the walking boot to let an area of the foot heal from pressure created by my shoe.

The Velcro straps are probably the biggest issue on these devices and the shoes. How do you clean the Velcro? My husband has found if you use duct tape to clean the Velcro grip or little hook side, it does quite well. Bonnie adds that the straps on the CROW boot can be replaced easily by the Orthotics personnel. If they get grungy, or the Velcro wears out, just replace them. She has done this several times.

Continuing information from both Bonnie and Annita

Brought to you by Charcot Awareness Education Foundation

Adjusting To A New Prosthesis

The summer of 2005, I was recuperating nicely from the second amputation, a BK cut (Below Knee), on my left leg. I had gone back to answering phones and setting up appointments for the carpet cleaning business. I was feeling better every day. My check ups showed that the amputation wound was healing well. I would be fitted for a prosthesis by the end of August. I was on the road to recovery. Praise God for his healing.

(I interrupted this posting of Bonnie’s as I wanted to know more about the difference in the amputations and prosthetic devices, as well as adapting to the apparatus. She had an appointment with her “prosthesis guy” a few days ago and this was her response.

My visit to prosthetic guy was good. The first amputation I had, because of Charcot Foot, was called a Symes Cut to the base of the ankle. This was in January 2004. The prosthesis is built with two parts, wearing a gell sleve over the stump to protect it from rubbing. Then the outside part or hard part slips over this and clicks into place below the knee. The foot part can cost as much as $30,000 depending upon the type of activity expected to take place. The more activity, running, walking, the more expensive the device. The prosthesis I have now fits up to just below the knee because of the BK cut..

As I remember, the difference in the base & foot apparatus can feel unsteady and moves a bit. I did not feel real steady. I was wearing it the only time I fell. I told Mark that I didn’t remember having any trouble with the new prosthesis for the BK amputation . He said, “No, you wouldn’t the BK prosthesis fits better. It’s more stable and since you were already used to a prosthesis an easy transition.”

My new clam shell is on order for my right foot – will be here in a month or less.)

(For further clarification the Syme’s amputation: All of the bones of the foot are removed thus separating the foot at the ankle joint. The lower end of the tibia is cut leaving a flat end of the bone. An amputee can walk about the house on it without a prosthesis or crutches. His leg is a bit shorter however.

The below the knee amputation often referred to as the BK or BKA is thought to be more stable for the amputee. There are two major techniques. The Burgess technique brings the skin and muscle from the back of the calf forward to cover the shin bones after they have been divided. The other technique the skew flap (kinsley Robinson) is where the muscle of the calf are brought forward same as the Burgess but the skin flaps are skewed in relations to the muscle. The division of the tibia produces a good size stump to which a prosthesis can be fitted.)

This past July (2016) I was visiting with Bonnie in her home in NE. She needs a new prosthesis. Why? look at the photo of her stump.

Stump sores and abrasions

Stump sores and abrasions

Remember Trevor in Alaska? He said if it was ill fitting, it needed to be replaced. Ill fitting results in bruising and blisters. Not a good thing. This could lead to infection which could be devastating. Her new prosthesis had been on order 3 months at the time. As of tonight Oct. 2, 2016 when I spoke with her by phone she still does not have it.

A big concern!! What’s going on? Are others having this problem? Are You?

Contact me at mashaw@mindspring.com by phone 1.360.509.2049 or mail: CAEF PO Box 3902 Silverdale, WA 98383-3902

Bonnie’s continuing story

Brought to you by Charcot Awareness Education Foundation
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Useless To Useful Feeling

Life was setting into a routine. I was getting stronger every day, but being a person who was used to being on the go working, taking care of our home, and traveling. I was feeling pretty useless. Everyone was trying to get me interested in hobbies, knitting, crocheting etc. I was never good at any of those things and just couldn’t concentrate on any one project for long.

Reading books (which I used to love to do) I found I couldn’t remember what I was reading. Yes, depression was working on me and doctors told me I had, had so many medications, especially antibiotics, that it would take awhile to get them out of my system.

My choice of entertainment was games on the computer and watching movies. I was also
repeating the “serenity prayer” many, many times a day. Slowly, things began to get better. Bonnie J. would take me grocery shopping. I would get in one of the mobile carts to get around the stores. This worked pretty well (first trip was hilarious ran into a few things) but it felt so good to get out and do something constructive.

I had lots of visitors which was always wonderful, but I needed to get my mind busy. In the fall a friend of my son, Chad, was starting a carpet cleaning business. He was telling me he did not have time to set up appointments cause he was busy cleaning carpet. Next thing I knew I was answering his calls and setting up appointments for him. My prayers were being answered now. I felt I had a purpose to full fill and that I could help someone.

My stump was healed and the prosthesis was working well. The new boot on my right foot to protect it from breaking was getting easier to walk with, I always had to use a walker and still do as I am very unsteady.

During the winters first snow, I found out real quick that manual wheel chairs do not work well in any amount of snow. This did not stop me from going to church, shopping or going out to dinner with friends. We just cleared a path first.

I kept asking Tony if we could get a little puppy to keep me company. He would always say “No – a condo is no place for a dog of any size. They need to run and play.” Well, my sister Donna knew I liked pugs, and she sent me a card that had a picture of a pug on it. I kept it on my computer desk and I talked to everybody about “my pug”. In late February, my son Shannon, called and said he found me a pug puppy 8 weeks old. I was ecstatic, Tony said, “Boni this is not possible. You can’t take care of him.” I said, “I could.” So “entered Tuk” into my life. He was so tiny. He slept on my chest all the time. Training presented a few challenges, but we mastered them. And that little dog is my best buddy to this day.

This post was written by Bonnie Ribitzki a Charcot amputee and friend from Gering Nebraska

Brought toby Charcot Awareness Education Foundation

Phantom Pain After Charcot Amputation

In one of Bonnie’s recent postings, she mentioned phantom pain. I wasn’t sure what it was, so I called her and she explained it. I then asked my husband to research the topic and found it quite interesting.

We have all experienced pain at some time, but imagine you have just had a leg amputated and you are experiencing severe pain in your big toe. You no longer have that toe, but the pain is there. It is very real. What would your response be?

For much of the history of modern medicine it was thought that amputees rarely had pain problems. Those who did report pain were thought to be only one in about 200 amputees and this was reported to be in their stump. This isn’t true. The medical community didn’t know this until a few years ago when a survey was sent out to military amputees in the US. Over 7000 responses to the survey revealed the majority of them reported being bothered by stump pain and over eighty percent reported phantom pain. A few reported the pain went away after the amputation healed, most continued to suffer from pain for the rest of their lives. Some reported being pain free after the healing, but that phantom and stump pain returned many years later

If you are an amputee the majority of you can expect to experience at least intermittent pain for most of your lives. Some of the typical pain may be burning, stinging, cramping, shooting, twisting, or other unpleasant sensations. These episodes can vary from a few seconds a year to several weeks at a time, with several to many episodes per year. Some have continuous pain, which varies in amount from almost none to excruciating over the course of a year. For most, the pain interferes with work, sleep, hobbies and social activities. Activity and the weather were also associated with the event of pain.

There are also phantom sensations. They are normally not painful. They are more like feelings. Just after an amputation, nearly everyone feels the entire amputated part of the limb. Most people feel that they can move and control it the way they could when it was attached. You can just get up and walk normally. In fact, I had that sensation after breaking my femur in my right leg after surgery and was ready to go home. There was much healing to take place before I could do that.

These sensations are so real and normal that many young, traumatic, lower limb amputees frequently try to get up and walk away, a day or so after their amputation. One still feels the amputated portion of the limb including a sense of position, temperature, itching, and often the feeling of something normally worn on the limb.

What causes the pain? The brain and spinal cord contain circuits which cause anxiety to magnify feelings. These circuits are not under our conscious control and can cause one to experience warmth as severe burning, tingling to be felt as shocks, etc. Because you know the amputation has taken place, you may begin to doubt your sanity. Thus most people would not tell anyone about these feelings in the hospital or anywhere else. Because the medical community didn’t realize this was happening as often as it was, may be part of the reason people weren’t warned of the sensations or pain which lead to severe anxiety.

There is some treatment for the Phantom Pain. Find a knowledgeable physician to help you. Do not become a victim by permitting an unknowledgeable physician to operate on you.

As an added note, there are a number of incidents of alcoholism among amputees, as a direct cause of an attempt, at covert self treatment of phantom pain.

This posting is based on an abstract from the book “Phantom Pain” by Lieutenant Colonel Richard A. Sherman PhD and associates published by Plenum Press in 1997.

Message by the Founder Annita

Brought to you by Charcot Awareness Education Foundation

Care Of Stump & Prosthesis

After amputation, it is very important to take proper care of the stump, cleaning it daily and following doctors orders in activities and movement. Most healing time before the prosthesis is placed on the limb takes 3 months, but each individual is different. I was in the hospital for 3 months after surgery, January 19, and was not fitted for prosthesis until mid April. My stay at the hospital for so long was related to other problems (see previous printings). Before being fitted for prosthesis, the wound was healed and swelling had gone down. It is not unusual for the limb to shrink further and changes need to be made to the prosthetic.

DAILY CARE:
Clean limb each day at bedtime ( I use baby wipes)

Inspect limb for any red spots, or sores (report them to Physician quickly)

After cleaning, apply lotion over entire area covered by prosthesis. (I use mineral oil)

Clean prosthesis gel sleeve that covers limb (I use alcohol swabs)

I totally wash prosthetic gel sleeve every other day, there are different directions from manufactures or prosthetic team. Use what they recommend.

CARE of PROSTHESIS:
The actual prosthesis needs little, or no care, however the gel sleeve you wear on the limb needs cleaned daily (see above). You will probably receive two gel sleeves with new prosthesis. This makes it easy for cleaning/wearing times.

I AM WRITING ABOUT MY OWN EXPERIENCES AND HAVE THE OLD TYPE PROSTHESIS. CARE FOR THE NEWER TYPE ATHLETIC ONES WOULD BE DIFFERENT.

This post was written by Bonnie Ribitzki a Charcot amputee and friend from Gering Nebraska

Brought to you by Charcot Awareness Education Foundation