When I was released from the Shriners Hospital, my feet were treating me well. I knew, however, it would probably not last. My parents and I asked my doctor (the chief of staff) for a referral to a local doctor who could help me if I needed it, and he recommended one from my hometown very highly.

Soon after my dismissal and my 21st birthday, I made an appointment to get established as a patient with the local orthopaedic doctor. A number of x-rays were taken, because my records had not yet arrived from the Shriners Hospital. Once those x-rays were developed, my new doctor examined them and my feet in the exam room, and was able to tell my parents and me what my doctor from the Shriners Hospital was doing with each surgery I had had. We were beyond impressed, and determined this doctor was the one for me.

Before two years had passed, my feet had become very sore to stand on for more than one minute. I was in excruciating pain, and I knew that if I didn’t have something done, I would not be able to walk much longer.

First, my doctor recommended that I try different inserts. When those didn’t work, we tried braces that went from the bottom of my feet to just above my ankles. Those didn’t alleviate the pain, either, so I was put in braces that went up the backs of my legs to just below the knees. It was clear when even those didn’t help that I needed surgery.

Fortunately, my doctor is always on the cutting-edge of technology and procedures, and had learned of one procedure that might help, without having to fuse my bones. Fusing would have restricted the mobility in my feet dramatically, and was not an option that was favorable, especially because I was in my early 20s. The new procedure involved developing an arch in each foot that was never there before, cutting and moving my heel bone and putting two screws in each heel to hold everything in place. The pegs that had once held my ankles in place and kept them from sliding inward off my feet were not needed anymore, and were removed. Smaller bones near where the pegs had been were fused together using bone from a bone bank, and the fusing was held together with small plates and two tiny screws in each foot, so the fusing could heal.

One foot was operated on at a time, and took three months each to heal enough that I could walk unassisted. These surgeries I call my “reconstructive” foot surgeries. My right foot was operated on in April. The surgery was on Good Friday, and I was released from the hospital on Easter morning.

During my hospital stay, my foot was propped up on three or four pillows, and was wrapped as follows: a protective gauze sock was placed over my foot and bandages, and was wrapped with several layers of cotton; a plaster shell that gave a flat surface under my foot and wrapped around the front of my foot, and up the back of my leg to just under my knee and wrapped around the front, leaving about a two-inch gap from one side of the plaster wrap to the other; and then an Ace wrap was wrapped tightly and meticulously around the plaster to keep everything together and clean. This protective wrapping, by itself, weighed about seven pounds.

The same procedure was done to my left foot in July, with the exception that a bunionectomy had to also be performed, which meant that after having the bone just under my big toe cut and realigned, two pins had to be put in place to keep it from moving while it healed. I also requested a sling be added to the bed that would hang from a pole so I wouldn’t take a chance on letting my foot fall off of the pillows.

This stay ended up being four days, as opposed to three like the time before, because the doctor who was overseeing my care in the hospital – not my doctor – insisted that people from physical therapy come and teach me how to use crutches. I told them that I was the last person in the world who needed lessons for using crutches because this was my 17th foot surgery, and I had taught others how to use crutches, besides the fact that I was going to be using a wheelchair when I left, anyway. Well, they wouldn’t hear of it, and would not leave until I proved that I knew how to use the crutches. I took two steps and got back in bed, because I was beyond excruciating pain at that time. The physical therapist said he would come back later, and I was crying too hard from the pain to say anything before he left.

I told my nurse, when I was finally able to speak again, not to allow physical therapy to come back into my room, and asked her to call my doctor, not the doctor who had ordered PT to come in. I was given a morphine drip and Percocet for the pain, and my doctor’s assistant came by the next day. He said that the PT order had been canceled after it was recommended by the attending physician, and had somehow been reordered. He said it should not have been reordered, because they knew I didn’t need it.

After a few months, I was finally able to walk again, but was still limping in November. In the time between surgeries, and after my casts had been removed after my last surgery, I went through physical therapy to rebuild my muscles (because I had muscle atrophy) and gain strength and mobility. It was hard work, but very much worth it.

That year – 2004 – was a very difficult one. For most of the year, I was recovering from surgeries. I was unable to drive on my own during that time, because both of the vehicles my husband and I owned were stick-shifts, and so I was dependent on others for transportation for everything. I couldn’t get much exercise because it was so painful to move, so I gained weight. I couldn’t cook because I couldn’t stand or carry anything, so people from our church brought food over for us, or my husband bought us take-out. (The weight is something I am still trying to take off.)

But the benefits of the surgeries far outweighed the consequences. Ever since those surgeries, I have had no problems being on my feet, sometimes for up to an hour or more at a time, without having to sit down to rest. Of course, being on my feet for too long still causes pain, but I am much better off than I have been in a long time.

Of course, the plates that were put in to hold together the bone grafting were never meant to be permanent like the screws in my heels were, so last year, I had them taken out, as well. These were out-patient surgeries that took one month each to recover from. These two surgeries brought my total number of foot surgeries to 19. Hopefully that will be the end of the surgeries, but nothing is certain.

I was almost four years old when I had my first appointment at the Shriners Hospital. I went through an intake process, during which photos were taken of my feet, I was weighed and measured, x-rays were taken, and my parents and I visited with a couple of doctors, eventually even the chief of staff. He became my primary orthopaedic doctor and surgeon.

I had such terrible problems with my feet that my doctor was afraid I wouldn’t be able to walk for long. Because of overcorrection a few years before, my bones were terribly misaligned, my heelcords were very short, and my ankles were sliding inward off of my feet.

I was four years old when I had the first of my surgeries. My doctor cut through and realigned many of the bones in both of my feet, and put pins in alongside them to keep them in place while they healed. After a number of weeks, those pins were removed, and I had surgery to lengthen my heelcords.

I forget the order of all of the surgeries, but among the surgeries that followed, I had pegs put in the outsides of my feet to try to keep my ankles from sliding off the other side, staples were put in the inside of each ankle to keep my growth plates from forcing my feet too far over – and those were removed after some time, and there were several more that I was too young to understand. I was almost never without inserts or braces of some sort, having to have new ones made after every surgery because my feet had changed in shape or I was needing correction of a different kind.

The staff and I became very familiar with one another, and the head of the orthotics department (who had started there less than a year before I began my treatment) was getting ready to retire by the time I was released because of my age (because the Shriners Hospital is a children’s hospital).

I made trips, sometimes two or more a year, back and forth to the hospital with my mom. Every time, I would see other children, some of whom whose problems appeared worse than mine. There were children who suffered from brittle bone disease, cerebral palsy and other diseases, who were in need of orthopaedic help, as well. There were many children whose limbs were being lengthened and were in cylidrical apparatuses with what looked like spokes going into their bones, which were stretched every so often by the doctors turning the screws. That was apparently, as you could imagine, a very painful and lengthy process. One little boy’s feet were turned completely backwards, and he had surgery to turn them around so he could walk.

There were children there whose families had come from foreign countries for care. One girl I befriended had come from Turkey, and neither she nor her mother spoke any English.

I was a patient of the Shriners’ for more than 17 years by the time they released me because of my age. Most children’s care was referred when they reached 18 years of age, but because I had been followed for so long and my care was ongoing, they followed me until just before my 21st birthday. At that point, I was referred to a local doctor whose care has been phenomenal.

I was born with clubbed feet, which means that my feet were turned inward (also called “pigeon-toed”), and my achiles tendons (heel cords) were very short, pulling my heels up to the backs of the calves of my legs. It was not known before I was born that I would have this condition, because ultrasounds were not very common at that time.

When my parents discovered my problem, they sought medical help. The doctor they took me to put me in corrective casts when I was ten days old. Every week, I was put in new casts to continue the correction, and it was working. But my family moved from that town when I was six months old, and the move took us far enough from my doctor that a referral was needed. And that’s where the trouble began.

The new doctor employed methods that would “correct” my feet more quickly than the casts. I was put in shoes with a bar between them to force my feet outward, and was given a number of treatments to quickly correct my feet. The problem was that the corrective methods were moving my bones too quickly. The result was overcorrection.

When I started learning to walk, my parents noticed that I was walking on the insides of my ankle bones, not entirely on the bottoms of my feet. They addressed this problem with the doctor, but he insisted that my feet were corrected, and that all of the treatments he had prescribed had been to appease my parents.

My parents were furious, and talked to experts about whether to file a malpractice suit. They were told that, unfortunately, because no surgeries had been performed and that the bones of children my age (at the time) changed so dramatically over time, it would be nearly impossible to prove their case and win.

In the next couple of years that followed, my parents found out about the Shriners Hospital for Crippled Children, and made an appointment for me to be evaluated. My situation was severe, and the Chief of Staff took up my case, hoping he could help me. By this time, my ankles had begun to slide inward, and were threatening to slide off of my feet if something wasn’t done to stop the process.

I’ve had problems with my feet for my whole life, and this blog is not only a posting ground for the trials and tribulations associated with those problems, but also a tribute to the doctors and orthopaedic specialists who have helped me, as well as (I hope) a resource for those seeking help for problems similar to those I’ve had.

I will not be bashing anyone by name who may have contributed to the problems I have, and I would ask that anyone who chooses to comment refrain from doing so, as well.

Comments posted to this blog will be moderated, so please watch your language, because there are certain things I will not tolerate. If you have questions for me, please leave them in the comments section or send me an e-mail (mrs.t.swede at gmail dot com), and I will attempt to answer them as best as I can.

Thank you for visiting my blog. I hope I can provide you with valuable information, and that you enjoy your stay and visit often!