Im not sure if anybody still reads this but if you do, apologies for the delay in updating my diary. And sorry once again because everything is in one block and not broken into days or weeks. I've lost the enthusiasm to write daily.
August 1 - September 12th.
Well August was eventful. Starting off in a state of depression and finishing with an incredibly positive mood. The hardest part was how slowly time was moving. Spending 23 of 24 hours in my hotel room was beginning to take its toll mentally. I was so reluctant to be seen in public as the reactions of people was just unbearable. In hindsight I don't blame them, i was harsh to expect anything less. We have to remember that to those of us in this forum an ilizorov frame is..just a lengthening frame. But to the rest of the world who may not even know it exists, it's like WTF!! I have never seen mankind behave in such a way. People would stand in front of me with their jaw dropped and stare or point. It was crazy.
I think the only thing that i can say that helped me get through being locked away was taking each day at a time. Just trying to focus on making it through the morning, and then the afternoon and lastly the evening. Giving yourself something to look forward to. For example, a phone call from a friend or perhaps something you will order for dinner. Anything, no matter how small, the importance is taking your focus away from the long term and focusing on each passing day. I must admit, august flew by much faster than i expected once i began doing this.
At one point one of the screws in my frame almost ran out of thread. I freaked out thinking my leg would fall off if i continued. I called the doctor and was quite annoyed. But he arranged for a new screw to be installed shortly after. In all fairness it's not just the doctors responsibility (although predominantly it is) but it's also yours to check that your not running out of thread. I mean, my doctor saw me at times once every two weeks, but i saw my frames at least 4 times a day. So just bare that in mind as well.
Up until august i had not experienced pin cutting, i guess the first few cm are like the honeymoon period because everyone has some give in their skin. It's not completely tort to begin with. But after about the first inch my skin became tort and wasn't regenerating at 1mm a day to keep up with my lengthening pace. Just another thing to brace yourself for potentially.
One thing i found that actually helped me with my pin sights and the wounds from pin cutting, was allowing my skin to scab. Yes keep the scabs clean but don't destroy the scab! I remember reading this advice on the forum and thinking "yeah whatever, your not a doctor" but after constant pin sight infections I decided to try and never had another infection since.
Your body's scabs form a natural barrier so why the doctors ask you to "clean" them off I don't understand. I also never showered the whole time i was here and I don't plan on doing so for another few weeks. Sounds disgusting but there are medical wipes you can use that keep you from smelling and then just wash your face normally. I've read of people taking showers with their frames or even going swimming, my goodness, i think the odds of pin sight infections skyrockets in those cases. Tbh i never did those things involving water (even avoided the rain) so i cannot tell you for sure whether it would contribute to an infection.
I also experienced some outer knee pain from a pulled muscled (or whatever it is) behind my knee joint. It's amazing how weak our legs become under these conditions but it's also important to KEEP MOVING. It was so painful to do so that i gave it a rest for a few days. Then I remembered what happened last month and how stiff my knee became afterwards. So after a few days i began to battle through the pain but my knee was already stiff again. Use it or lose it, that's what i've learnt from all of this. Eventually things eased up, i was able to move my knee despite the pain and soon after the pain eased off.
It's also really important to do your stretches. I cannot stress how important it is for you be able to straighten your knee completely. If you cannot do this you will not be able to stand with your full body weight efficiently. Instead, your knee joint will bear more weight than it needs in an unnatural position. But if you stand with your knee completely straight it's like everything goes straight down to the balls of your feet which is more natural. Im not a physiotherapist so my explanation may be a bit crap but my point about keeping your knee straight when you stand is very true. Hopefully you will have effective physiotherapy and wont have to "discover" this for yourself.
Inflammation and ice: i've already spoken about knees but honestly they were probably the most problematic thing for me. I couldn't find a great deal when i was going through hell with my knees so if it helps one person then great. Apply ice to your inflamed knee. No point using a massive bag, it's not efficient in targeting the specific areas that may in fact even be obstructed by your frame. Take a single cube at a time and wrap it in a cloth (just dont put ice directly on your skin please) And feel around for where the ice cube can be felt. On the areas where the inflammation originates you wont feel the ice. But in areas that are not problematic you will. This is another thing I discovered from trial and error.
Distraction: 1mm a day is probably ambitious for most people. In the beginning it was fine for me but after 4cm i had to slow down to 0.5cm a day because my consolidation was just so poor, despite all the calcium and vitamins and doing EVERYTHING in my knowledge/power. I even stopped eating weatbran as it inhibits calcium intake. I did everything. So my point is, don't assume you will lengthen healthily on your terms. It's up to your legs. You cannot choose a time and length and expect your body to just cooperate.
Another thing to remember, is the amount you lengthen will be less than what you actually gain. I definitely lengthened at least 6cm. The final x-rays show a gap of 4.5cm. So check your x-ray, don't just count the days. Your frame is a mechanism that doesn't distribute exactly 0.25mm every time you turn. Some will be lost to resistance. Screws bending etc. I'm not an expert and my doctor's explanation kinda flew over but that was the main gist.
Stem cell therapy. This is where i am happy i paid the money i did to come to Acibadem. They injected bone marrow cells taken from my hip, into the fracture site. My goodness my bones have grown at lightening speed since. They are already almost consolidated now allowing for full weight bearing, with the use of a walker and removable cast for 4 weeks. It's precautionary but after 4 weeks my bones are expected to be fully consolidated. That's incredible for me, 4 weeks!! It would normally take someone like me 6 months (i've broken my tibia before).
I think had i taken a cheaper option, I'd probably be struggling with lack of consolidation on returning home. 1mm a day is too much for someone like me. And if i lengthened at 0.75mm a day i'd have left with even less than 4.5cm. So overall i guess you get what you pay for. If you're one of those lucky ones who everything goes right for then you don't need to pay all the money i did. The only issue is not knowing whether you will be lucky. What will your body throw at you.
I will say one thing for sure, i've said it before but DO NOT push yourself into a time bracket. PLEASE DON'T DO IT. Maybe you'll need 3 months for just under 2 inches like me. Maybe you'll get 3 inches in 3 months. Just prepare for the absolute worse. That way if you hit problems at least you have the time to fix them.
If i had more time I could have lengthened to a greater amount. The hospital were prepared to continue as they were excited to achieve a higher amount of lengthening but i was out of time for the box i had given myself. Things would have only worked had everything been perfect, and for sure perfection rarely exists. But on the bright side I haven't exceeded the doctors advice at 5cm. So my recovery should be quick and hopefully full.
I will update in one month. Hopefully i can walk without the cast.
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Topic: LL at Acibadem hospital in Istanbul, Turkey (Read 10938 times)