Archive for July, 2014

2nd Charcot Surgery

In late April 2005 I started having a problem with my stump. I had a sore spot that kept getting worse. It was getting pretty painful, but not anything like the phantom pains I would get occasionally.

I set up an appointment with the surgeon, Dr. Chang. He took x-rays of the sore on the stump. Low and behold I had a very bad infection caused by a suture left in at the time of my first amputation. I was in shock, could not believe this was happening. Dr. Chang was very upset also, but because of the previous infection (MRSA) and Charcot Foot, he felt I needed to have my leg amputated to just below my knee (called a BK cut). The removal of about six inches of ankle and leg would get rid of the infected area. I was told I needed to have the surgery as soon as possible.

Believe me my head was spinning. All I could think of was another long stay in the hospital and I was scared to death. Poor Tony was in a state of shock also. We went home and prayed a lot. Knowing what had to be done, we called Dr. Chang and set up the surgery for the first week in May 2005.

That time came quickly and I was again in the hospital for an amputation due to the suture that was left during the first amputation of left foot January 2004. The surgeon, Dr. Chang, kept reassuring me this would be a fast recovery because I was in much better health physically and mentally. I was not really convinced of that before surgery, but did have total faith in Dr. Chang.

Yes, I was praying and thanking the Lord continually for strength and wisdom to handle this surgery. The surgery went well and recovery was going much faster and easier with no complications. Dr. Chang said I should be able to go home in 4 to 5 days. I had no reactions to any of the meds I was given and no sign of Mersa which developed after the first surgery.

Rehab was started next morning. Which was getting up, sitting on the side of the bed and using a slide board to get from the bed to wheel chair. I could not believe how wonderful everything was going, no lightheaded dizzy spells and pain was minimal.

I was ecstatic with how I was recoupping. My biggest concern was leaving Tuk at home by himself. I worried about him continually even asked if he could be brought up to the hospital to see me. Well, Dr. Chang nixed that thought. Tuk was four months old and had been with me continually and slept on my chest at night . Poor Tony was working two jobs – worried about me. To help ease my mind he put Tuk in his kennel and took him to work in his big delivery van. To make a long story short, Tuk got sick from all the bouncing around and vomited all over the kennel. Tony was not a happy camper, nor was the sick puppy – thus the end of riding with Tony. I really think God was at work having me worry over Tuk – not myself.

Dr. Chang was right. I was ready to go home in 5 days. It was a challenge as I had to use the slide board to move from the wheel chair to the car seat or bed. I would not receive a new prosthesis until the wound had healed properly, about three months.

Sharon and Bonnie J. were helping me while Tony was working, he was exhausted and so worried which made him delve into his work more.

So began the summer of 2005, healing and getting prepared for a new prosthesis, and training Tuk. He was so much company for me. I know having him kept my mind/body occupied and healing. Of course all the visitors helped tremendously, bless them all.

Bonnie’s continuing story

Charcot Awareness Education Foundation

Useless To Useful Feelings

In the summer 2004, 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.

Bonnies Continuing Story

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.

Bonnie’s continuing story

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.

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.

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.


Bonnie’s continuing story

Charcot Awareness Education Foundation

An Individual In A Wheel Chair

After learning that my right foot was already infected with Charcot, my biggest goal was to do everything I could to keep it. This meant always wearing the claw boot to protect it and to keep it formed correctly. I found, quickly, that the more I used my walker for walking it would cause my right foot to ache, so I learned to maneuver my manual wheel chair very good. In one of my previous articles I mentioned the summer of 2004 “I HAD TO LEARN HOW TO BE AN INDIVIDUAL IN A WHEEL CHAIR”, I have been asked to explain that statement. Actually it is a whole lot of things all combined.

First: I needed to learn how to accept help graciously and just say “THANK YOU”. When you go from being a person who is in control of each and every movement you make, it takes a while to change your minds actions. Thinking I can still take care of myself in every way (not true). Do not argue with yourself and accept the person’s help. Accept graciously and know in your heart you will be able to help someone else in return at some time.

Second: Learn to be patient with yourself and others in all things that you do. My main mode of travel in Anchorage for two years was with Tony, Sharon or Bonnie J. Which was no problem, they were catering to me totally. When I moved to Nebraska, I discovered the “HANDY BUS” P7210199(county/state operated) for a very minimal fee you can go places within the county. I use it for doctor appointments, grocery shopping and day time entertainment (Senior Center for lunch and playing cards). Since so many people use this mode of transportation, you do have waiting periods, which can get lengthy. Quick remedy, take a book to read, or puzzles to work, or my favorite, people watch and strike up a conversation. This makes me feel independent and making my own plans, also understanding the movements / chores you will attempt take time – don’t get frustrated because it takes you longer.

Third: Planning your day/movements safely so that you have no mishaps, such as falling. No more spur of the moments to jump up to go get something in the other part of home etc.

Fourth: Self Confidence. When I first arrived in Nebraska, I was feeling very vulnerable. I felt I needed someone with, or around me before I could do anything. I didn’t trust my own abilities. I was staying in a local motel in a handicap room until I could find a permanent home, probably an apartment, or assisted living place. My siste, Cindy, became my instant helper (God Bless her). She would come over to take my dog P7280332(Tuk) out. She would stay with me in my room while I showered in case I would fall. Remember my home in Anchorage was 3 stories. Lots of stairs. Well, with in a month, or less I could take Tuk out myself, go for walks with the wheel chair. with Tuk along side. Soon discovered, I was very safe and could maneuver well enough that I could do my showers without having Cindy there.

Fifth: Faith in God – None of the previous things can happen without Faith & Trust in God and thanking Him many times during the day for the ability to do everything you must.

Bonnies continuing story.

Charcot Awareness Education Foundation