Pediatric dwarfism clinic
The psychological problem short people get during the surgery
Before the surgery, everyone used to point fingers at me, and had to put up with my classmates’ bullying and violence. Because I went through so much mental pain, I didn’t want to have to put up with all the suffering and live such a miserable life.
So I got by though psychological therapies, but they were only effective at the moment, and found myself to be in the same place when I returned to school. My every day was so miserable that I even attempted to end my life. But even suicidal attempt was not easy.
But after the surgery, less people were staring at me and even if they did, I had the strength to put up with it, since I was taller. Also, I had to be in the same class with people who were 1 year younger than me. There was some teasing, but some friends helped me as well. I was mentally more stable.
Another thing I realized was that I wouldn’t have been in so much pain if I had got the surgery at a younger age. I felt like I had more pain and slower bone healing than other children because I received it at a later age.
But there are people who get the surgery even at an older age than mine, so I guess my age isn’t too old compared to them. During the process, I thought to myself that I would never to such thing to myself because it was too painful. But after the extended length reached 10cm, I totally forgot about the pain and wished I could lengthen my legs again.
Another thing I felt is that this surgery really requires a huge amount of patience and perseverance. It seems like yesterday when I had such miserable time after the surgery, but it has already been 5 years since then. So many things happened within the 1 year I had the surgery.
Also, there are things that I noticed that I wasn’t aware of before the surgery. It is that the screw on the device has to be turned punctually and the areas around the pin have to be cleaned regularly with no skipping. I feel like I became half a doctor after repeating these over and over again.
When I was at the hospital for an outpatient visit, people who hadn’t had the surgery or were about to have the surgery asked me many questions despite the fact that they didn’t know me at all. At first I was confused about how I should answer their questions, but as time passed by, I was able to answer their questions clearly with no hesitation.
How much does it hurt when you get out of the surgery? How much pain do you have during lengthening? Does it hurt when you do rehabilitation exercises?? How do you sleep at night? These are some of the questions I got from people. I was once in the position where I was asking older patients about the surgery and its related processes. So I feel like it’s now my turn to answer their questions as much and detailed as I can.
What I would like to tell other guardians/young patients
I know that, and think it is natural that young patients and their guardians don’t have enough knowledge about the Ilizarov surgery and are often afraid of getting the surgery for leg lengthening or correction of the bowing. I also hesitated a lot and wasn’t sure for a long time if I should have the surgery or not.
But pain is only temporary. When I was going through the process, it was so painful that I was doubting whether I had done the right thing or not. But when I looked at myself after all the devices were removed, I realized that I did in fact make a right choice. Each day will seem ridiculously long when you have the device on, you will think you did the right thing once you are done with it.
Additionally, you need to take care of the operated areas very meticulously; if not you will face even bigger trouble later on. It really hurts when you first come out of the surgery. You get to rest until the time of bandage removal, but after they remove it, you need to cleanly disinfect the area and do rehabilitation exercise even if it hurts a lot.
Although the nurses and doctors are there to help you at the hospital, you need to do it on your own at home. Little children might cry and complain from pain, but you need to be strong to avoid inflammation. Don’t blow toward the disinfected area with your mouth, but fan the area with a fan or a sheet of paper instead. If you blow with your mouth, the germs in your mouth might contaminate the area. Also, you should also sterilize the scissors that you used for disinfection.
It hurts the most when you do rehabilitation exercises, but you need to tolerate it, because if not, your legs will stiffen and have to be re-operated. You should do those exercises at least 2~3 times a day.
Professor Song gave me a pair of white shoes with a long rubber strip and a hook on to wear during hospitalization. I had to absolutely have it on unless I was washing my feet. I had a sense of stretching in the sole of my feet when I first put it on, but the pain decreased gradually.
You also need to continuously exercise moving your ankle up and down even with the shoes on. When you rest after rehabilitation exercises, you still need to keep moving your ankle. You might have to deal with the worst case possible if you don’t constantly have the shoes on or exercise enough just because it hurts, or simply because you are lazy. Your foot will start showing equinus foot deformity if you don’t constantly wear the shoes and do enough ankle exercises.
If the deformity is mild, a simple surgery is done to pull the muscles in the back of the foot. On the other hand, if you neglect wearing the shoes and exercising properly, you will inevitably have a surgery where the sole of your foot will be punctured in both sides and another device will be put on in that area. If that’s the case, the pain will increase hundred folds and you will go through incredible amount of suffering. So in conclusion, you have to absolutely wear the shoes, when you’re sleeping or during the day, at all times!!!
If you don’t forget about ankle exercises on top of this, you probably won’t need the surgery.
Things I would like to boast about
First of all, I became unbelievably happy that I became taller through the Ilizarov surgery. I became confident and now I can go outside with no worries.
Also, I am very glad that my bowed legs were corrected and I got rid of the knee pain that I used to have before the surgery. Thinking of the word “surgery” horrifies me, but if I had to do it, I would do it again.
Because I was quite old, and had too much fat round my thighs, I received an arm surgery instead. But the arm surgery actually didn’t cause too much pain unlike I expected. My arms were feeling a bit stretchy for one day, and couldn’t move my arm properly for two days, but I felt okay after that.
Also, arm doesn’t require separate rehabilitation exercises, since actions in daily activities are considered as exercises. Eating a meal, writing, brushing your teeth, washing your face are your daily rehabilitation exercises. But there is also a metal rod inside your arm, so you still have to be careful with inflammation and disinfect regularly.
One uncomfortable thing is putting on clothes. In the summer, I only wore clothes that were made of ramie, and in the winter I ripped my clothes to wear them.
I wish people didn’t confront or discriminate disabled people for employment
Even though the whole procedure was painful and exhausting, I do have one experience that made me feel warm inside. On the day of the surgery, I asked Professor Song a lot of questions about the surgery, since I didn’t know much about it.
I asked him the same questions I had asked him before over and over again, but he didn’t seem to be bothered by it. He was very generous and always answered my questions generously.
So I always felt warm inside, and I felt close to Professor Song as if he was my real father. This assured me that there are people in the world who are cold and heartless, but there are also some people who are warm hearted and don’t discriminate people.
I hope that the society won’t discriminate and have prejudice against people who are short or disabled. I hope they can treat us equally as how they would treat tall and normal people and learn that we can also do things that they can do.
I really can’t understand why they don’t hire people just because they are short. This is the only thing I hope in our society.
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