Archive for April, 2010

The Long Wait

Waiting areas in hospitals, anywhere, differ very little from one another. This one was no different. It was in Madigan associated with one of the surgery areas. While there I began to think about many different things having just left my wife in the patient holding area prior to her surgery. I had done it. I had really done it. Something no one in the Navy, at the time I was in, ever did. Volunteer! That is right, especially if one had no idea what the process was. I had voluntarily, volunteered to handle all of Annita’s care at home after the operation on her right foot. I said I could, I was going to be doing it. You who are reading this, written by Max Shaw, Annita’s husband, are probably wondering what is going on. . . . I was still sitting in the Operating Room (OR) waiting area, along with all the others waiting until their loved one had, had some procedure or another. I was waiting, while Annita’s surgeon, Dr. Roukis was making some internal changes to her right foot. The changes required to rebuild her foot because of the damage caused by Charcot.

Just thinking about what I would be doing, after Annita left the hospital and had been transported home came to the surface of my mind. While in this waiting area, I thought about a lot of different things. The TV was very boring and so was my book. Was the damage worse than previously discussed? How long was this operation going to take? Was everything going as it should? Had we put in enough pillows and blankets to properly cushion Annita for the hour and a half ride home? Finally . . . . , a little more than 7 hours after leaving Annita, the call on the waiting area phone was for me. I was to go into the recovery area. Just after entering, I met a very pleased Dr. Roukis. We went into an enclosed cubical nearby so that he could talk about what had taken place. He was pleased, the toes on Annita’s right foot had straightened slightly when he was placing the foot under the leg bones and adjusting the arch of the foot near the end of the surgery. He said he would be doing more when he removed the Orbital Fixator. The toes, he said, could be straightened and repaired at that time.

After our discussion in Recovery, he said they were not quite ready to take Annita to the assigned room in the hospital. He said to go back into the waiting area for the phone call. So I went back into OR waiting. About 20 minutes went by, seemed longer, no phone P7070061 copycall. So I went back into Recovery to find out where my wife was, since there supposedly had been no problems. Entered recovery, got scolded, I turned slightly seeing medics move a gurney. The gurney Annita was on. Three medics were starting to wheel Annita out of the Recovery Area. I followed. She was taken to a room on the 6th floor. The time was almost 4:00pm.

This had been one very long day which started for us at about 5:15 that morning. Staff personnel were doing all those things required to make the person as comfortable as possible after a surgery in the hospital bed. Annita did not completely awaken until after they had gone. She wanted to know what time it was, now 4:30. Thoroughly surprised, she had been out that long. That was the beginning of her 14 day stay in Madigan’s hospital.

This weeks article was contributed by Max Shaw, husband of the founder of Charcot Awareness Education Foundation.

My Charcot Surgery

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.

Decisions

Though many of our friends thought I should have the surgery in the winter, I thought I would like the summer. My reasoning was concerning all the traveling we would have to do for follow up appointments. The weather would be better. Winter often meant icy roads. That is never comfortable traveling. My studio, where I would be staying, was cool and the windows and sliding glass doors allowed me to look out onto the yard where I could enjoy the wild life and flowers.

When the time came we told the doctor of our decision to have the surgery and that summer was a better time for us. He scheduled my surgery for July 6th. He was concerned about Max taking care of me at home, but Max assured him he could do it.

There was a lot of preparation to be done. We had to get the studioP8100053 set up so it would work for both of us. This meant bringing the guest bed down from the upstairs bed room. We had a kitchenette in the studio and a TV, but the bathroom was a couple steps up in another room which I wouldn’t be able to get to. A potty chair would be needed. We would also need a table for meals. We had an extra, so brought it down.

After I retired from teaching, I joined a water aerobatics class. It was a good social outlet, as well as, a wonderful exercise program a for a diabetic and one who was having problems with their feet. The people were wonderful. They loaned me a potty chair and a wheel chair. They were all so supportive.

P7050035 copyKnowing that we were over an hour from Madigan, we needed to arrange for accommodations closer for Max. Since we had a motor home ( RV ), we found McChord Air Force Base had an RV park about six miles from the hospital. That was perfect. The black berry bushes and the smoke bushes were in bloom. The whole setting helped us maintain a good feeling.

Though I was nervous about the up coming surgery, I was excited and positive. I had never had surgery before and my only stay in a hospital was to give birth to our son. Dr. Roukis, through his professionalism, knowledge, caring and sense of humor eased any apprehension I had.

The pre op appointment went smoothly. Everyone was so helpful and the directions clear. The tests indicated I could go through surgery.

Charcot Foot Instability

Major Driver, my doctor at MAMC, was very positive, but said I needed to get my feet healthy. She wanted the bottom of my feet as soft as the top of my foot. That meant using a cream on my feet twice a day, seeing my podiatrist regularly to have my nails cared for. You see, because of the Neuropathy, I actually cut the end of one of my toes on my left foot off when I tried to trim my own toe nails. I didn’t realize it until I saw all the blood. Several of my toe nails were very thick and hard to cut.

In a relatively short time, my feet were getting soft, my cracked heels were healing and my feet were feeling better. She was not in favor of my tight shoes, but let me stay in them as they determined my Charcot Foot was stable, but to continue the care routine.

I truly believe the tight fitting shoes that I wore all those years is what kept my foot, or maybe my feet, from deforming any more than they did. Also, checking my feet often kept them from the ulcers, as any hint of a sore I tried to take care of it immediately.

P4010081 copyJuly 2005, we had to go to the farm. This trip wasn’t good for my foot and upon my return home Dr. Driver put me into a walking boot for 30 days. October, I learned Dr. Driver had been transferred to Chicago. She didn’t have a replacement. We had a fall trip planned to London. The Doctor who filled in for her told me not to get sick while we were in London. He had great concern for my getting good health care while traveling. He gave me some pain medication in case I needed it and told me to use the walking boot and any assistance possible. Example: at the airport use the wheel chair.

2006 Dr. Roukis, now head of the Limb Preservation Clinic, walked into my examination room. He was so young, about the age of our son. He held my right foot checking the temperature, blood flow and anything necessary. He then said “We are going to have a couple of dates. Then we are going to have a courtship and then you and I are going to get married.” Both Max, my husband, and I were a bit shocked. He then went on to say I was in stage 4 of Charcot Foot and I had a window of about four years to have surgery to save my foot. After that, it would just be a matter of time before the foot would be amputated.

He didn’t push us, but we went over the surgery, the areas in the foot that would be worked on and what would be done, the time line for surgery, length of the hospital stay and recovery. He even went over my care after surgery, suggesting I go into a care facility for recovery and rehabilitation.

We knew I would opt for the surgery The question, now, was when?

Misdiagnosis And Other Complications

Over the past few years, I had gone to our local hospital two times because of pain in my feet. Each time they took x-rays and the attending physician told me I had arthritis and that I was going to have to “Learn to live with it.”

After my dad and husband had such success with a chiropractor, Dr. Button, I finally joined them. He helped me with my neck and diabetes. After a few years, I asked him to check my ankle. He realigned my foot and ankle. This happened every few months, then every month, then every two weeks.

Another diabetic complication began to consume my time, that of goingP7030001 blind. Being an art teacher, eye sight was extremely important. In 2003, my last semester, we had completed about six weeks. During my high school calligraphy class, I had just finished demonstrating some strokes to form new letters on the board. As usual, I began to walk around the room to help individuals. One of the boys stopped me. He asked me to demonstrate the strokes on his practice paper. When I reached down for the paper, I couldn’t see the lines. I straightened up. He asked what was wrong. The class became deadly quiet. Thinking I was going to loose control of the class, I said, “I might as well tell you. I’m going blind.” A couple of girls quickly raised their hands and volunteered to walk around the class and assist the other students. They were excellent calligraphers. The student that had stopped me reached up, toughed my shoulder and said, “You did a good job on the board. If we need, you could help us there”. This brought tears to my eyes. With peer tutoring and my working at the board, the students were great. The class, one of the best I ever had. I retired at the end of the school year.

The image is of the hammer toes and callus on the little toe. The next few months found me having more difficulty seeing out of my left eye. My feet, too, were not doing well. In fact, the right foot was beginning to deform and the hammer toes were getting worse. The little toe’s callus was red and more pronounced.

In November 2004, we took our usual trip to the farm in Nebraska. One morning I woke with a cramp in my right leg. I hit the floor and when I did, I heard my ankle snap. It sounded like I had broken my ankle. Like a kid broke his pencil. I was in tears. It hurt so bad. We called my doctor here in Washington state. He suggested I go to the hospital for x-rays. We decided not to, but to finish up business quickly and go home.

Once back in Silverdale, we went to the hospital for the x-rays. Again, Side of footI was told it was arthritis. I would have to “learn to live with it”. Since I had an appointment scheduled with my podiatrist, Dr. Brewer, I took my x-rays to him. He looked at them and called me over to see them. He pointed out little flecks and said, “You have Charcot”. I had no idea what he was talking about. I had never heard of it. He explained it was a bone deterioration disease. I’m not sure what he said after that as I suddenly heard the man who fitted me with my orthotics saying I had a “very serious foot problem” and that I needed to go to the Limb Preservation Clinic.

We needed a referral from a primary care physician to MAMC. We were told the request was denied. My husband, then hand carried the paper work to MAMC. Within a few days I was called and told I needed to come to the clinic as soon as possible. March 2005, we went to MAMC Limb Preservation Clinic where I under went the exam and x-rays and was told they were doing research on Charcot Foot. My doctor, Major Driver, told me I was now “property of Madigan”.

In May, my left eye went black on a Wednesday and had to have a victrectomy the following Tuesday. The same thing was done on the right eye a few months later. They were able to restore my sight to nearly normal.

Now to concentrate on saving my right foot from amputation.