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Thoughts after the surgery


Pediatric dwarfism clinic

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[Regular patients] My mind has grown as much as my height

관리자
30 Jan 2023
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[Regular patients] My mind has grown as much as my height

 

People used to call me cute for my small body structure during school days

The summer days of 2010 were exceptionally boring and hot. Normally I would be enjoying the freedom of my summer vacation or studying abroad as I had planned. Rather, I was on my bed fighting with myself.

I have always had a small body figure, so my name was always in the top 5 names on the attendance roster (The roster is in the order of height). In elementary school, my height was 157 cm and I didn’t think I was too short compared to my peers. Despite wishing that I would grow taller in middle school, my name was still one of the top names on the list, and the height difference became very obvious among the friends who used to have similar heights as me. At least when I was young, people used to call me cute, but I began to worry and be anxious thinking that I wasn’t making any progress.

My parents also became extremely worried to see that my growth speed has decreased to 3~4 cm from growing 5~6 cm each year. My parents have normal heights, and my 1-year older brother is 183 cm tall and my younger sister who is in middle school is 165 cm tall, which means they are both taller than average. So my parents still believed that I would grow eventually.

But after my parents felt impatient and serious about my slow growth compared to my friends, we visited a growth clinic at a university. After several tests, we became very disappointed to hear that I wouldn’t be able to grow much more because the growth plates were closing.

My mother regretted not having done something about it earlier. I got hormone injections for several months in the hopes of growing even a little more, and took oriental medicine that was popular for height growth. But my height didn’t grow as much as my effort and I was getting more distressed due to my height.

Furthermore, I loved to play sports like football and basketball. But I was pushed away easily and even if I tried hard, I felt the limit of my body strength coming from my small stature.

After I entered university, I was at physical examination for the military service, and my height came out to be 163.8cm. Being doubtful, I measured my height at the hospital again, and it was 164cm which wasn’t much different than before. Whenever someone asked me my height, I would say 166cm or 167cm, feeling embarrassed, or if I was meeting my friends or relatives I wore elevator shoes to overcome my inferiority complex.

But I was resentful and regretful that I was short and that I had to show effort to look tall for.

Last fall, a female university student’s claim “People who are shorter than 180cm are all losers.” exploded as a big issue in the society. She could have said it just for fun on an entertainment show, but it became a case that showed how much the society cared about physical appearance.

I wasn’t worried too much about my appearance in middle and high school, where only boys were overflowing. So it was my first time since elementary school to go to a co-ed school. I studied “Sports media” and got to hang out with lots of lower and upper classmen and other students. I had fun hanging out with them, but I didn’t really get to meet anyone who was shorter than me. The only thing that made me wonder was what they ate and what they did to be that tall. Before I entered the military service, I was on a blind date with a girl, and she seemed to be embarrassed when she realized that we had similar heights. Seriously, was it sin to be short? Why did I have to feel so miserable and defeated? I actually had a few more blind dates, which didn’t turn out successful because of my height, and I even started to worry that I could even never have a girlfriend because of my short height. They wouldn’t even give me a chance to show them my other attractive sides.

 

I decided for the surgery after seeing an advertisement

After I was done serving in the military, I took a year off from school and was preparing to study abroad. One day, I was walking near Gangnam station, and saw an advertisement about a leg lengthening surgery, so I took their number. My parents, who were usually even more worried than I was, wanted to check it out. So we visited the orthopedics clinic in Gangnam.

I didn’t expect much from the clinic, not knowing much about the lengthening surgery and hearing much about the surgery around. But the story I heard from the clinic was hopeful enough to make me jump with anticipation. They said I could grow about 8~9cm in 3 months, and be able to walk in 6 months. So I decided to have the surgery. Of course, I had to stop my preparation for study abroad.

While we were talking about the dates for surgery, my father was discussing the matter with a close friend of his, who is also an orthopedics doctor. The doctor told my father to think about the surgery very carefully after a thorough examination. After talking about it with other doctors of his, he recommended us to go to Korea University Guro Hospital and see Professor Song.

I still cannot forget the day I was schedule for outpatient. There was a crowd of people waiting in front of Professor Song’s room, especially dwarfism patients with short stature. The professor was examining patients running from one room to another. Finally came my turn, so I told the professor about my situation. But the professor once again asked me how much I want this surgery, and told me to think about the surgery again carefully after talking to other patients who had experienced it already.

When I saw the patients, the hope and anticipation flew away, and I was left with no self-confidence. My mother also seemed to be shocked to see the patients with the Ilizarov device and seemed to be hesitant after listening to patients’ explanations.

After I came home, I searched online about the Ilizarov surgery. The online articles scared me a bit, and made me wonder if the surgery could make me lose my legs forever. As someone who loves sports normally and goes to a sports university, I started to wonder if I need to risk such danger. My parents were also disappointed and having second thoughts about the surgery.

But I didn’t want to give up the hope I had even for a bit. I could go for study abroad another year, but I felt like if I didn’t do it at that time, I would be regretting for a long time. So I decided on the challenge. My parents were worried too, but they encouraged me as well.

The health insurance doesn’t apply for this surgery, so financially, it is quite overwhelming. Some people even make sarcastic comments about its extreme cost. But I wanted to do whatever it took and find my confidence.

While I was being scheduled for a surgery and getting pre-surgical examinations done, I saw two patients who had had the surgery. Mr. Y had the surgery the last year November, and Mr. S 10 days before mine. Mr. Y seemed to have a weak body and he told me how he was suffering from inflammation and swelling. He kindly told me to call him any time I had a question.

On the other hand, Mr. S, who had the surgery, didn’t look like he was going through much. He didn’t have much pain and the operated area was quite clean. I asked those two patients about why they decided on the surgery, how much pain they had after the surgery, what other problems were, how their daily activities were, and how much the cost exactly was. Even after the date for the surgery was scheduled, I was still worried and hesitant about it.

Some people accused me of putting myself and parents in trouble and not being strong enough to handle one negative side of mine. But I was determined to start a new life after a year of pain. I was afraid of not only the numerous surgeries, but also of the possibility of being disabled in worst case scenario. This was going to be a big adventure for me, and I needed lots of courage. I was worried even until the moment I entered the operating room.

The surgery was scheduled for March 21st, and I was admitted to the hospital 3 days before the surgery. My mind was once again shaken when I saw another patient in the ward. The patient was a 20-year-old university student and he was in big pain from being allergic to alcohol disinfectants and postsurgical complications 1 month after the surgery. My mother gave me a worried look and said that health is more important. My mother’s and my mind were totally shaken but I couldn’t just leave when I had the surgery scheduled. I felt like I would regret no matter happened. Even though I was worried, I eventually decided to have it, disregarding anything that could happen afterwards.

 

I just trusted and followed the professor

On March 16, 2010 Tuesday at 9 AM, the preparation, surgery operated by Professor Song, and recovery took 5 hours in total. After the waking up from anesthesia at the recovery room, I was transported to the ward. My leg was thickly wrapped with bandage and I was unable to move it.

It finally came to realization that I had the surgery done, and was now waiting for a long period of pain and suffering ahead of me. The professor told me that the surgery had gone well and comforted me. He also told me about cautions I should take.

That time, I thought to myself “From now on, Professor’s words are the law and the truth. I will absolutely trust and depend on him.” Actually another doctor had told me about various cases of unexpected complications before the surgery, and I was really scared. But starting that point, I thought I would have to just trust the doctors and do as they say to get good results.

When they took off the bandage after 3 days, there was a little bit of swelling. The swelling was removed by ice compression, and on the 4th day, I went down to the sports medicine center on the basement floor. As the doctor told me to do, I walked around the room using a “walker” in order to be able to walk using crutches. The inserted pins were causing discomfort and a bit of pain, but the pain wasn’t too bad, most likely due to the painkiller.

The doctor at the sports medicine center told me that it looked like I would be able to walk using crutches by the weekend, and taught me how to walk using them. At first it was difficult to even make one step forward, but after regular exercise, I was able to the bathroom and adjacent ward rooms by myself.

At the ward, I was getting help from my mother and the caregiver, but I worried about what was going to happen when I go home. Since I couldn’t get help from other people all the time, I was going to have to figure out going to the bathroom and showering by myself.

After the surgery, the nurse had taught me for 3 days how to disinfect the areas of pin insertion and the surroundings. So I started disinfecting those areas twice a day, once in the morning and once at night. It is needless to talk about the importance of disinfection. Disinfection absolutely needs to be done thoroughly to prevent any kind of inflammation caused by invisible bacteria and tiny dusts.

1 week after the surgery, I started lengthening 0.5mm each day. A few days after that, I was lengthening 1mm a day. 2 weeks after that, the stitches were removed and I was discharged from the hospital. I was anxious about having to care of myself alone, after being taken care of the doctors at the hospital.

Upon discharge, the doctor at the sports medicine clinic taught me some exercises I can do at home by myself. Some of the exercises include stretching, walking with heels on the ground, and pulling the legs with strings. These exercises prevent equinus deformity when the leg is lengthened more than 6 centimeters and effect the Achilles tendon, which hardly lengthens. He asked me to exercise regularly.

Professor told me to come to the outpatient clinic every 2 weeks, and to exercise regularly as I had done in the hospital. Weeks passed with me lengthening 1mm each day. I started to feel pain when the lengthened amount became 3~4cm. Usually the pain wasn’t that bad during the day and when I was doing walking exercises, but at night when I was trying to go to sleep it was very painful and stuffy to the point that I wanted to scream. The days after 3~4cm of lengthening were painful with only 2~3-hour long help of painkillers that the doctor sometimes prescribed.

After seeing the condition of equinus deformity in Mr. Y, the patient whom I had talked to before the surgery, I told myself to exercise hard. Because I was witnessed to the hassle and the trouble of having to put two other rings on the foot and lengthen it by rotating the screws to lengthen the calf muscle (Achilles tendon).

I lengthened my leg by 1mm every day by turning the screw on the ring by getting the square dot on the screw from 1’oclock to 4 o’clock position. Even though I did this regularly, there was a difference of 3mm between the right and left legs. The difference could be from one leg lengthening faster or slower than the other, but if the difference is too much, emergency care should be taken and even be partially operated. So it is very important to lengthen it regularly and make regular visits to the outpatient clinic.

I heard there are cases where you have to give up lengthening and have things taken out if the person has fever due to inflammation. Inflammation could be checked with the CRP value shown in the blood work, 5 being within normal range. If the professor thinks that it is too much, the patient needs to take antibiotics to drop down the value and get rid of the inflammation.

For a while, I just waited and didn’t lengthen because the new bone wasn’t being generated. He told me that the important thing is bone formation that can keep up with lengthening, not just lengthening. The time seemed to take longer than expected, and that was how hot summer started for me that year.

I was looking at my leg with surprise, which had become much thinner and significantly long. I was happy but I was getting tired of all the pain as time passed by. But it wasn’t’ like I was having more problems than other patients.

Around that time, I felt severe pain on my thin bone (tibia). At the outpatient appointment on July 21st, the x-ray showed that the bone wasn’t getting longer because of fast bone growth. Lack of fast bone formation was a problem, but too fast bone healing was another problem. That day, the Professor performed an outpatient surgery and cut the thickening bone and stabilized the bone with pin insertion in 30 minutes. There had been so many unexpected situations that came up during the process, and I couldn’t be more surprised to see how the experienced professor dealt with all problems.

 

Types of Rehabilitation Exercises

The professor emphasized the importance of exercising every time I went to the outpatient clinic, telling me that is the only way for bone grown and prevention of stiffening of the muscle. But my exercise was restricted with the ring surrounding my leg. My daily activities were uncomfortable, but the hardest time was when I was going to bed. I sometimes change my position and bend my knees in my sleep without realizing it. So I practiced stretching my knees continuously at the sports medicine clinic. Also, they put cushions or books under the patient’s feet while the patient is in a sitting position and put a sand bag of moderate weight on the thighs for 5~10 minutes to prevent the knees from bending.

Anther way to prevent equinus deformity is by strengthening and lengthening the hind calf muscle (Achilles tendon) with a string. This movement has to do with stretching and a basic exercise to help with muscle strength in the calf area. There is also another exercise that is looks like cycling but done in arms. It helps with giving strength to the arms to support the weak lower body while using crutches.

No matter how much exercise you do, muscles in the thigh and calf are bound to reduce because of the pins inserted on the bone and skin. Because there is limitation of how much you can use strength, and if it is too much, it could lead to a problem on the bone. But that doesn’t mean you don’t have to exercise. You should build up at least the minimum amount of strength to move around with the rings around your legs. Another exercise is putting your legs on the bed and raising them while you are sitting on the floor. It is like hitting to bird with one stone because it builds up the muscles on your thighs and also helps you stretch your knees, which is usually hard to do.

Lifting your legs each time strengthens your thighs, waist, and calves. If you feel the stretching around those areas, it means your exercises have been effective.

Walking is necessary but walking posture is just as important. The crutches need to be situated before your feet and you should load your weight on the heels and let them touch the floor with your knees bent 20 degrees.

One example of stretching exercise is bending your right leg in front of you, and completely stretching your left leg, so that the left heel can touch the ground. This is a movement to lengthen the Achilles tendon, which is not an easy work. It is not an easy movement even for normal people, so the description should be helpful to patients with Ilizarov.

There are more exercises, but I wrote about some for now. There are also a lot of exercises at the sports medicine clinic, but they are hard to do at home. I believe the movements I mentioned above will minimize the severity of equinus deformity and weakening of muscle strength.

 

I will make my mind grow as much as my height

Some of the things I had the most difficulty with were staying at home unproductively at such a young age and the increasing pain. At times I also regretted what I had done to myself and felt like exploding. During hospitalization or when I go out for outpatient visits, people around me got shocked, saying “Oh my god, what is that? That looks painful!” I was too conscious of people’s stares, and I couldn’t meet my neighbors or my friends because they actually thought I was gone abroad to study. It was a tough time for me.

Now that I am summarizing my experience starting from the time of first finding out about the surgery, all the times seem to have passed by so quickly. I also feel proud and accomplished when I look at my safely lengthened legs.

Before, I used to know nothing about the surgery and seek advice from patients who had already gone through it, but now I see myself in the position of answering questions to those who are curious about the surgery. Sometimes, I find it uneasy as to how I should help those people. I find it hard to recommend it to them right away because it’s a process that requires a lot of patience and endurance.

Most frequently asked questions were about the severity of pain, the cost, and how bearable the pain is. It is needless to say how painful and long the process is and how much it requires patience, since your skin is cut with a knife and a nail is put into your bone. I feel that this surgery requires patient’s determination and will. I am trying my best to overcome the pain because I don’t want to disappoint myself and my family, who trust me wholly.

I went to the outpatient clinic every 2 weeks on average. Before I saw the professor, I had x-rays taken and did the blood test. At the appointment, the professor meticulously evaluated the increased length, blood test values, and my walking postures

I bothered Professor Song a lot with my worries and endless number of questions. But the professor was always witty and humorous to me and answered all my questions with a smile. I really felt like he was treating all the patients as if they were his own family or friends.

At the outpatient clinic, I saw dwarfism patients with congenital deformities who were having or going to have the surgery. You might point a finger at me and call it “luxury” when there are so many people who are in real desperate need of the professor’s help. But I wanted it cure the mental illness that arose from my appearance. As a young man who has more days to live than have lived, I wanted to get better chances in the future. I imagined myself in the height of 170cm and hoped to be an adult who no one would mistake for a middle or high schooler.

I am still not done with all the surgeries and touch time, but there are so many things I want to do when everything comes to an end. I want to meet my friends and travel around, but mostly I want to get out of these boring hospital uniforms. When I finally have a normal and healthy body, I want to come to see Professor Song at KUMC in a nice suit and thank him for taking care of my legs and my mind.

I personally think I am very lucky for meeting the professor. I think I was able to go through the whole process because I fully trusted and depended on the professor. So I would like to sincerely thank my parents for giving me such opportunity and Professor Song for giving me such great medical care. I would like to take this opportunity and try to do my best to mature mentally as well, just like my legs.

 

Equinus Deformity Correction

It had been about 6 months since the last surgery and had the ring on my leg. At the outpatient visit in late September, the x-ray showed that my legs were lengthened 9cm. The professor said lengthening is done, so I was scheduled a surgery for equinus deformity correction.

That time I saw another patient with equinus deformity not too long after my 1st surgery, I told myself I’d work hard. But I was looking at my firmly stretch-out leg and stiffened foot, feeling guilty and regretful. Because I saw that patient not being able to even go to the bathroom and feeling uncomfortable, I was more worried anxious than the time of 1st surgery. But I tried to think positively; since it was a process I had to go through to complete all the procedures.

I was admitted to the hospital 2 days prior to the surgery, and was instructed about estimated surgery duration and details. Professor gave me hope and courage, telling me that walking would me much easier after the surgery and the ring removal after 2 months.

The surgery began around 8 o’clock and lasted for about 5 hours. My leg that was overly wrapped with bandage felt heavier than the first time. When the bandage was taken off 3 days later, I saw the pins inserted into my heel and sole and also, 2 more rings. That made me realize why the other patients were suffering so much

The doctor in charge told me to lengthen 1mm 3 times a day, 3mm in total, unlike bone lengthening. I didn’t feel much pain when I first started, but after about 2 weeks, it became very painful to the point that I could barely sleep. The pain, along with the discomfort caused by the ring, was unbearable. I had even lost a lot of weight. But I was relieved to see significant correction of equinus deformity and the angle of the ankle, which was once turned to the left.

Even though the inserted pins on my foot caused pain, walking was possible with a ring under my foot. Although the exercises you can do after the equinus deformity surgery are limited, there are some useful movements. Those movements include lying down with your legs straightened and elevating your feet with cushions underneath the feet and something heavy such as sandbags on your thighs. If you do these exercises for 10~15 minutes, you will gradually be able to stretch your legs without even noticing it. Putting your legs up and down the bed for 3 sets of 10 also helps with strengthening of thigh and calf muscles.

I thought I was going to have the ring taken out by Chuseok (Korean national autumn holiday), but after the professor saw my x-ray, he said it would be safer to delay taking it out a little bit. If it was too rushed, deformity could come back due to lack of exercise and I was going to have to go through another surgery.

After a long period of 6 weeks, a doctor taking care of Ilizarov rings took out one of the pins on my foot. The 5 minutes spent for unscrewing and taking out the pin without anesthesia felt like forever. The pain was also very severe and didn’t go away for the whole day. After a few days, I stepped on my bare foot, and I was able to stand and have the heel touch the floor. I got very emotional when I stood on my heels. I was relieved in a way but still felt even more impatient and restless.

Then I remembered one of the patients telling me that the end was harder than the beginning. At the beginning, I didn’t know how time passed by because I was busy with lengthening and disinfecting my leg. But because there is nothing to do other than disinfect after the deformity correction, everyday seemed very boring and suffocating. I guess it was the point where my patience for 1 year of secluded life had reached its limit.

I had another x-ray taken 2 months after I had the pins taken out. The x-ray showed that the right bone had not been filled as much as the left one. So they decided to take out the left ring first. They made a cast and braces in the cast room. I really wanted to take out both rings, but I had no choice. After taking out the ring, I kept touching my leg, wondering if it really was my leg. The condition of my right leg was checked every 3 weeks at the outpatient clinic and meanwhile, the cast on my right leg was taking out and I was using braces. Because my right leg took a longer time to grow, it took additional 2 months for removal. The professor wanted to leave it for longer, but the leg kept getting inflamed due to prolonged insertion of the pin. One time, I felt fever and pain, but because it used to happen every now and then, I didn’t care much about it. But at night the leg became extremely swollen from mid-calf down and felt so heavy that my mother and I ended up going to the emergency room early in the morning. The blood test value came out to be over 110. So I had to stay in the hospital for a few days and lower down the value.

I was worried and depressed to see that my inflamed right leg, which already had problem with healing. After all these ups and downs, right now I am ring-less on my both legs and am getting rehabilitation exercises at the sports medicine clinic. My left leg is functionally better and I am working hard on my right leg for muscle increase. Of course my legs haven’t come to the “normal” status yet, but I do feel them improving day by day.

I think I had a good case of leg lengthening surgery relatively, until the last part, where I was in trouble with inflammation. But eventually the important thing was to trust and depend on the professor. Even though the process took longer than I expected, it feels a bit awkward and empty when I exercise without the rings. Although the amount of muscle strength have decreased by far and the rehabilitation process is agonizing, I am looking forward to having normal legs and returning back to school for the 2nd semesters.

 

The things happened in the past 1 year had been tremendous for my life. Nothing that happened since the decision for surgery till today has been like how I imagined. I look at my “shortened” pants and forget about the past. Even though it is ugly and embarrassing, but I think I have cured the illness in my mind that I had from being short. My legs aren’t fully functional yet, but I am walk with hope.

 

My crutches were like my identity.

Disinfectants, cottons and medicine bottles by my pillow!

Computer!

 

I will end this writing in the hopes of those items becoming good old memories. Once again, I would like to give thanks to my parents, who have suffered more than I have, and to Professor Song, who have reached out to me with caring hands.

 

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