The roller coaster

"But you look taller!" these are the words that one fears prior to operation. Why? You fear this because you don’t want to explain how this can be true. Surely no one will have the audacity to say that to you? For me, after I was back into my normal life cycle I actually found it to be a most satisfying thing to hear. It was final proof that what I had undergone had a visual impact on those around me. On my reintroduction to the "general population" many people told me that I looked different. I would reply by saying that it may have seemed that way simply because they had not seen me for a while.

Why does one undergo this procedure? Most people want to belong to a group. If they want to stick out, they want to do so for positive reasons and since most people hold the view that being short is an impediment to social and economic progress, it is not exactly considered a favorable attribute. Rather, it is often the subject of ridicule. Being taller means being more "normal." It bothered me to be referred to as "that short guy." This used to happen at school, but I’m sure it would happen behind my back at work or socially. Another reason, and most important in my view, is that social interaction with people is different when you are short. It seemed to me that people take you less seriously — perhaps because a short person reminds them subconsciously of a child who is not worthy of commanding respect or authority. This is evident if one looks at the US presidents and US corporate CEO’s. You will struggle to find a short CEO. The shortest president was Truman that stood at 5 foot 7 and he was the exception. There have also been numerous published reports that taller people make more money. These are things that are probably not even considered by someone of a normal stature but I’m sure it crosses the minds of many short people. Therefore, if there was something that could put me on a more equal standing with my peers, I was more than willing to do it.

Apprehensions before the procedure

Many thoughts went through my mind prior to the first procedure and below are those that are most vivid:

Would everything go according to plan?

Would I regain full mobility in my legs just as before?

Would I still be able to play sport?

How much pain would it involve?

How much strain would it place on my family and economic resources?

All these questions are very important and I would ask anyone who might embark on this journey to consider them. If you don’t consider them and answer them for yourself, you might find yourself lacking the requisite mental resources to continue once you are in the midst of the lengthening process. I believe this would be a terrible thing to discover. The pre-operational psychological evaluation will try and bring this to the fore, but if it does not, you could be in trouble again. In this case you must do a self analysis.

Even though the questions went through my mind, it was outweighed by my determination to carry this through to its conclusion. I was totally committed and focused on doing this. I imagined my life after lengthening. I imagined being taller and this was worth the risk for me. I was extremely fortunate that my wife and family fully supported me. They would prove to be a very important piece in the whole project and I certainly could not have done this without them.

The lows

The lengthening process is a trying one. There is some pain, there is immobility and there is dependence on others for mental as well as physical well-being. Apart from the resulting weakness, immobility is also due to frames that are placed around your lower limbs. This did not bother me or cause much distress as I had gone through it in my mind before the operation. I was as prepared for it mentally as one could be. In retrospect I can say that 3 months was long enough. I would not have wanted to endure another month with the frames. Prior to consultation with my Doctor, I had contemplated the procedure where the lengthening and consolidation phase would occur with only the Ilizarov frames. This would last for about 9 months. I must thank the doctor for giving me his opinion on the matter and suggesting the NAIL method which meant 3 months in frames. He was absolutely right — three months was just the right amount of time.

Sleeping was spent on my back with my legs raised on cushions. If you are used to sleeping on your back — then you are very fortunate. However, if you are accustomed to sleeping on your side and front, it is yet another physical challenge to absorb. "Pin cleaning" is a daily task you need assistance with. It involves cleaning each pin site with a disinfectant mix and then covering each site with petrolatum gauze. The gauze has to be cut into the required size. You will get quicker at cutting gauze, cleaning and dressing the pins as the weeks pass. I use the term "you" very loosely as I did not do the cleaning myself. This was carried out by my wonderful wife. I assisted by cutting the gauze into little strips and passed these to her with tweezers. It took my wife around forty minutes towards the end to perform cleaning and dressing compared to one and a half hours at the beginning. At www.allegromedical.com I found a great web site for buying my gauze and sterile Q-tip applicators at bargain prices.

The first few nights after operation were not pleasant. My legs naturally twitch when I sleep. This twitching was exacerbated immediately after the operation and this would result in the frames clanging against each other after I had fallen asleep. The banging together resulted in pain and being awoken. The pain was like an electric shock; an extreme sensitivity running through your body like when a tooth needs a filling. Placing cushions between the frames did prevent them knocking against each other and lessening the pain, but the intermittent twitching was very uncomfortable.

Pain- killers also had a negative effect. I tried to stop taking them about a month into the lengthening because the pain was tolerable and I do not like taking medication. At that stage I had a muscular pain, similar to what it feels like when you have a tough work out at the gym or have played some sort of physical sport. I tried to stop taking the pain- killers and although the days were okay (my body temperature would drop and I would feel cold), the nights were exponentially more challenging. I would wake up at around 11 o’clock and feel "wired". I would feel like I wanted to crawl out of my skin. I would take half a tablet and would then be able to rest. On having told the doctor this, he prescribed pain killers that were much weaker and I was able to wean myself off those in a few days.

Getting in and out of the shower

Well the more space you have, the better, and the shower is probably the most important place to have it. The first few days I was challenged by my shower cubicle that has a raised ledge so that in effect, you have to step "over" something. Had it been like a little step up, things would have been much easier but because it was a raised edge similar to a hurdle, it proved very difficult and uncomfortable. I resolved this by purchasing two shower stools ( from Home Depot). I would create a "make shift" bench by placing the benches side by side length ways. One bench on the outside of the shower, and one on the inside with their legs touching the edge of the "hurdle". This would allow me to slide off my wheelchair onto the stools and continue "shifting" into the shower are whilst seated. You cannot believe how good showering and cleanliness make you feel; it is also vital in avoiding pin infection and helps with your general feelings of wellness.

Exercising

Following the exercises prescribed by physiotherapist is also vital and doing your own is imperative. I remember being told not to allow my knees to bend as they have a propensity to do. I focused on this a lot and there were days when my knees were very stiff and painful. Nonetheless I knew had to straighten them to avoid complications in the future. I preferred doing exercises on my own simply as my home environment was more private. I would suggest using the walker instead of crutches to walk around.

Mental issues

What goes through your mind during this entire project? I keep referring to it as a project as I believe it is similar to one. It has various stages, timelines, inputs, outputs and people involved. I must say I never once thought "why did I do this?" What I did think about was exercising and if I would have some complications. I thought about whether I would regain mobility and strength. I would often think that I wished I could condense the discomforts on everyone involved and make the process pass quicker. I believe that the more naturally patient a character you are, the easier this will be for any candidate. Nonetheless the worst discomfort, both mentally and physically, is obviously when you have the frames on. I felt an incredible high in the second major stage when the frames were removed and the rods were placed in my legs. I felt better since I was more mobile. You get less people asking you questions and staring at you. The frames bring this on and even though that occurs I would strongly recommend going outdoors. Staying cooped inside is not good for you at all. Interacting with people and going outdoors is. Trips to the physical therapist or to the supermarket are an important element in your daily life. Whilst we are functioning in normal society, we do not realize or appreciate these very basic interactions. You obviously will need someone to assist you in this as you cannot drive yourself or even stand in the first stages. So again our dependence on others is highlighted.

Highs

With the support of my wife and family I would do it all again as the quality of my life has improved. Doctor Rozbruch and his team took extremely good care of me and I believe him to be an exceptional caring human being aside from an excellent surgeon. I feel more confident and feel better about my appearance. I notice the difference in eye level with my colleagues and friends. I do not feel people glancing at me in the same manner as before the operation. It is a great feeling.

I WOULD DO IT ALL AGAIN.

A comment from my wife: The first time my husband discussed his desire to embark on this procedure with me, I was shocked to say the least! I was overcome with a variety of emotions ranging from fear (definitely the strongest of them) to sympathy. The magnitude of the proposed surgery was so overwhelming, it forced me to recognize that for anyone to willingly succumb to such an operation, it meant that the final goal was a necessary step in significantly improving the quality of life. When you love someone, even the prospect of the struggle pales in comparison to the apparent benefit that motivates them to assume such a "project" (as he called it). There were times when I asked him - while watching him in pain and distress — whether he regretted it, and his persistent reply was "NO." Naturally once the benefits of the procedure were manifest, it was easy to denounce those questions, but through all of the discomfort during the period of lengthening, there was an inherent "excitement" in his expressions. It was this enthusiasm, coupled with the prospect that he was going to be TALLER and HAPPIER, that maintained my optimism throughout the process. It was however my faith, the support of an incredible family and "Team Rozbruch" that maintained my spirit!

I TOO WOULD DO IT ALL AGAIN.