Archive for October, 2016

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.


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.

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.


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 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