Archive for January, 2011

Charcot Awareness Education Foundation Begins

Thanks: To our lawyer for encouraging us to create a foundation; To our son for helping to set up the website; and To those I met while in a wheel chair. Through the website and a brochure it is great to know that we have been able to inform people around the world.

Founder Annita Shaw and husband MaxI was diagnosed with Charcot Foot after having diabetes for over 10 years. I had never heard of Charcot Foot (Charcot bone or Charcot joint, a bone deterioration disease). In researching, I found nothing, or very little information about the disease. As a teacher and quite social, I wanted to share this information with interested individuals and those who may have the disease. Our lawyer suggested we put together a foundation. Because I was in a wheel chair with an orbital fixator on my foot and leg after surgery, I had plenty of time to tell my story so that others could be diagnosed properly by qualified medical doctors in time to save their feet from amputation.

The Foundation’s first charge was to put together a tri-fold pamphlet. After handing out the pamphlets, we learned three million diabetics, most likely, have Charcot Foot and are not being diagnosed correctly. 23 other diseases cause Charcot Foot to get worse. The foundation, Charcot Awareness Education Foundation, received word July 9, 2009 that the nonprofit foundation was approved, back-dated to July 2008 as the beginning date. We are excited about the potential and the response to our efforts. We hope it will be a great educational resource for everyone interested in Charcot Foot and that those who have it can find help.

The Foundation is expanding by use of a web site, sharing information at gatherings for the ADA, health fairs and anywhere we can.


SECOND SURGERY: Orbital Fixator Removal and Hammer Toe Straightening

Because of the Orbital Fixator, my foot and leg had time to heal. With the surgeon’s skilled work on my toes, I’m thrilled to be walking normally.

P8160028Just to give you an idea about Dr. Roukis’ sense of humor, when it came time to do the removal of the Orbital Fixator, we had to do the usual paper work connected with surgery. He just had to contemplate whether he should, or should not remove it. As if I didn’t need, or want this to happen.

Fortunately, I only had to wear it two months as the healing went well. My glucose had been well under control as a diabetic. This and all the positive things in my life, I contribute to the healing. The surgery was scheduled for August 29, 2007. Pre Op went fine. Dr. Roukis just wanted me to talk with the anesthetist and make sure they gave me something that would keep me from vomiting during surgery as had happened before. When I asked the anesthetist about the medication, he said I hadn’t had a problem. However, after he read the doctors report he gave me some medication to take before coming in for surgery.

This was a day surgery and would not require staying in the P8220017hospital. Time came, this time, very early AM as we had to check in at 6 AM. We had about an hour 15 min. drive to the hospital. Max had to load the wheel chair in the back of the van before we could leave. It was the last trip with the fixator.

After checking in at Surgical Services, doing all the “stuff” they wanted, I was then sent to OR Reception. One of the patients was a medic that I had seen in limb preservation. He recognized me saying, “Aren’t you one of Dr. Roukis’ patients?” With that we visited a bit. As we headed off to our surgeries we wished each other luck. Just one more thing that tugs at my heart strings.

P8160023 copyOnce in my gown and robe, then to the bed and waiting area prior to surgery. Dr. Shade, Dr. Roukis’ assistant, came to sign my right leg with her initials VLS and the other leg NOT! We laughed. Dr. R came in and went over everything with me that was to happen during surgery and after. When finished he excused himself to get the operating room ready.

The anesthesiologist did a great job, no bruises, and no vomiting in OR. They gave me a shot to “relax me” and left to check if they were ready for me. I watched as everyone was moved to their destination. There were eight of us. I was the only one left. Two guys came bouncing in, surprised to see me there. They said, “Did they forget you. There’s no one else here…..” Who knows what else they said as I went out like a light.

When I woke, I was in recovery. I thought I was awake, but I couldn’t understand what was being said until they moved me to another location. I had a doozy of a sore throat. Max came in. They gave me ice chips for my sore throat and a couple of wrist bands to help control nausea. Because Internal Medicine was concerned about my “High Blood Pressure” I asked the nurse if my blood pressure was high. He said. ” Hardly” and proceeded to tell me my oxygen was 97-98% and blood pressure 104 over 45. Not bad. As soon as I could get up with my new splint cast, I hopped into the wheel chair. We then headed home.

Next week, I will share what happened during surgery and the photos I was given.

Listen To The Story Your Feet Are Telling

I first learned I had Charcot Foot, I had toP5260022 copy work at getting my feet healthy. I had calluses, but no open wounds, though I did have a sore toe which we learned was infected. I was instructed to get my feet healthy. Keep them clean, dry and soft. I used lotions morning and night spending a lot of time caring for my feet. Soon they were soft, no cracked heels and feeling much better. My feet had begun to deform, hammer toes and a small bulge on the inside of my right foot was showing.

However, when talking with Bonnie, she didn’t have the ulcers, calluses or deformities. Yet, she had the same pain and difficulty walking that I did. She had taken better care of her feet. Apparently, the destruction was internal, inside her foot. The bones were deteriorating and becoming weak. Thus the broken bone that led to amputation.

None-the-less, foot care is really important. I just returned from my appointment with my poditrist. I have him check my feet and trim my toenails because I managed to cut the end of one of my toes off several years ago because I could not feel the end of my toe. Seeing the blood gush from my toe convinced me I should not try this again. P2170016Plus the nails were getting thick and hard to cut. Anyway, I told him the end of my big toe was hurting some this past week. He said my toe nail was growing in such a way that I was getting an infection. That, I definitely did not want to hear. Fortunately, after he worked on my nail, it felt much better. I think it was rubbing on the inside of the shoe which didn’t help.

My next step, now, will be to go to the orthotics clinic. I had noticed a small callus starting on the ball of the left foot. The podiatrist gave me a prescription to get new orthotics. I see the podiatrist every three months , or sooner if necessary. After the appointment, he said my feet were stable. This was good to hear, as I am doing more walking and exercising.

From what I can tell, most of us that have had, or do have foot problems wait too long to seek help. When we do, the person we go to often doesn’t have the knowledge about the problem, such as Charcot Foot. Then the out come is the fact we are so bad that amputation is the result. They find it is easy to blame your weight if you are over weight. Then tell you, you need to loose weight, or diagnosis you with something that has similar symptoms.

Please use common sense and find the knowledgeable provider. Seek medical help as soon as a foot problem develops. Do not wait until you have to go emergency or urgent care for treatment.

Brought to you by Charcot Awareness Education Foundation

FLASH BACK: Correcting The Toe Problem

When I look at my left foot it is great to see a very normal foot and walk comfortably

1 Foot beforeDr. Roukis shared the following operating room pictures with me. I will share them with you. You will see the tools and how and where they were used.

They removed the Orbital Fixator. Then worked on my hammer toes. Since the second toe was so long, it was decided to shorten it. This would give a good contour allowing for my foot to fit into a shoe without rubbing the end of it causing an ulcer that could be problematic. After the removal of part of the toe bone, the skin was rolled down and stapled in place. I called it my Chinese Sharp-Pei toe, or “dog toe”.

2 Tools Used in surgeryFrom the looks of the pictures, the third toe was a lot of work and difficult to straighten. In fact it still isn’t straight and Dr. Roukis frowns at it each time he sees it.
Third toe
The big toe was beginning to turn in. Not sure what they did to 3 Stapled toesstraighten it, but I know they drilled holes using a small drill and a template in05AANNIT order to insert the staples. The little toe posed another problem. It had had an ulcer, but it turned into somewhat of a callus upon healing. It was decided to amputate that bulge so it would not be likely to form another ulcer.

I am amazed when I look at my feet now. It is difficult to believe all this work was done as scaring is nearly impossible to detect. Seeing the pictures of them using a hammer and chisel, all the clamps, staples and other little metal pieces to fuse my toes to my foot was certainly interesting and educational. I can wiggle my toes, but they are quite stiff and probably always will be. All the Wrapped up aftermetal and staples that were implanted will stay in my foot.

Now for the challenge of splint and plaster casts.

Year In Review – 2010

It has been suggested that before I begin Boni’s story I reprint the five most viewed or requested posts. They will appear for the next 5 weeks. We will begin with:


July 5th came and we headed to McChord Air Force Base (AFB). Max drove the RV and I followed in our van. It was a pretty day. We settled in and relaxed as we really didn’t know what was ahead of us.

July 6th, I checked into the hospital at 6 AM. Once through OR Reception and dressing for surgery I went into OR Patient Holding. Max was with me, along with the student intern, the assistant surgeon, who signed my leg for surgery, and a National Guard Reserve who put in my IV. She said, “I’m going to give you a little something to help you relax”. I went out like a light. That was about 7:30 AM. I didn’t wake until about 4:30 PM in my hospital room.

The only thing I remember from the surgery was waking up wondering why they were working in my mouth. Thinking they were supposed to be working on my foot, not my mouth. I learned, later, that I started vomiting, apparently because of the anesthesia.

My surgeon allowed me to document this entire process with Charcot Foot. We have shared photos. He shared many of the surgical photos with me. I will share some of those with you now. Remember each surgery will be different and these are from mine.

The first photo shows where they put in two rods, one from the little toe toward the heel and one from the big toe to the heel. The x-ray shows the rods.
1 Surgery

They also used artificial bone in three areas. The pictures show the chisel being used and the fact that two people worked to add the artificial bone.
2 Surgery

They lengthened the Achilles tendon. No actual picture of this, but Surgery 3you might be able to see the area on the back of the leg in the picture of the leg and foot in the orbital fixator. There is a picture of the x-ray showing the rods ,staples and what I call the hinge that allows the foot to move up and down, but restricts movement in a rotational sense. Since my toes tended to straighten when they raised the arch, they decided to work on the toes when they remove the Orbital Fixator.