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Author Topic: Impromptu's LL journey/diary - Internal Tibias  (Read 3151 times)

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Impromptu

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Impromptu's LL journey/diary - Internal Tibias
« on: November 15, 2014, 03:05:04 AM »

So I finally decided to write a diary. Since I'm already 6 months post-op, this diary will focus on the consolidation stage/fully recovering. I will only briefly mention the happenings of the past 6 months though and answer questions if anyone is interested. Also, I do not intend to disclose my doctor information or where I did my operation at. This is my personal decision, deal with it. (and for those who are smart enough to guess, I appreciate if you would keep it to yourself). I am going to try my best to maintain as my privacy as much as possible.

So what can I tell you. My method of LL was ISKD, internals for 6cm. I have already hit the 6cm (actually, from the x-ray i measured 6.5) and now waiting for consolidation. I am asian, starting height 162cm and currently 168cm. This is my first and last LL operation, I will not consider femurs. All i wanted was to go from short to average. I am doing this in my home country, in my own house and with the support of my family.

Despite the fact that I am concealing my doctor and all, I still think there is certain merit of providing information for other patients who want to lengthen their tibias. Throughout my past 6 months and even before that, I have learned quite a lot from reading other patient diaries even if the method is not entirely the same. I think there are a lot of things we can learn from other people's diaries and I hope to provide the same kind of "service" for others.

Despite this sounding all retrospective, I have not returned to "everyday life" yet and am still consolidating. I am allowed to go out with crutches (though I was only recently told that and I figured it would take 1-2 weeks of practice before I had the confidence to go out), stand unaided (only hold something for balance). I have been walking with a walker for the past month (but solely for practice and beneficial weight bearing). It's going to be a longer process than many people think just like how I thought I would be returning to normal life by now.

But anyway, on to a recap on my past 6 months. Briefly.

Operation
The funny thing is I don't remember much from my 3 day stay at the hospital. I felt nothing during the operation due to GA. The pain was a 3/10 at most right immediately after the operation. When I woke up after surgery, I only remember that my left leg being very stiff as though someone placed a boulder on it. The pain went up to say maybe 4/10 at night and the bandaged legs started to bleed a little (I hate blood). I had to ask for painkillers sometimes but thankfully that kinda got rid of the pain completely. I didn't really exactly have good sleep because the nurses would checkup on you at regular intervals to check temperature/blood pressure. All in all, the 3 days post-op just felt like a really really long day. Very thankful that it was a breeze. Hardly any pain, no nausea (people have warned me that I was going to be giddy for a few days). I was happily watching shows on my laptop most of the entire time.

Lengthening - first part - +3.5cm
Right after I discharged I was instructed to do 1 click per day. Distraction had a weird sensation but I just thought it was because my limbs were still sore. 1 click (according to the manual) translates to about 0.374mm which is awfully slow. I was told to go on this rate because bone formation would be better. As much as I wanted to go faster, I stuck to this rate very religiously for most part (and that is why I am still not fully recovered after 6 months?).

I carried on at this slow lengthening rate for about 2 and a half months where I started to hit around 3+cm. I started to develop slight ballerina at around 3+cm but my doctor told me it was fine and reversible. I had regular physio sessions of about 2 times per week and did stretches on my own quite regularly, which still did not prevent the monster of ballerina to start appearing. I guess I had already naturally very stiff legs to begin with (plus I was walking a lot with lifts pre-LL). Also I started off short so I guess a smaller increased length results in a greater percentage. I was given this terribly uncomfortable plastic splints that I was told to wear but it hurts so much at weird places and gave me terrible sleep that I ditched it completely. (was this a mistake? perhaps?) At this point I was totally NOT walking at all though all I did was to practice standing to get some weight on my legs a few times a week. (during physio) On hindsight, that was totally not enough but I wasn't feeling confident enough to stand without someone around. I didn't exactly measure but my ballerina was about 1-2cm off the ground when I stood up at this point but if I wanted to I could still forcefully press it on the ground while standing.

There was literally no pain at all during this period. There was discomfort in the first 2 weeks after operation which isn't the best feeling to be feeling while trying to sleep. Sometimes I take some painkillers and I get this super relaxed feeling on my legs. I actually love this feeling but I try to control my painkiller intake. I think I only ran through like less than 8 dosages in a period of 2.5 months.

Lengthening - second part +3cm(?)

At around August I was told that the bone formation was okay and I could increase the rate of lengthening. So I went up to 2 clicks per day. (which equates to 0.374 x 2 = 0.748). At this point the ISKD had been reliably lengthening all the way. Most of the time, distraction was a breeze. However at this stage, I started to need more physical repetitions to achieve one click (or one pole change). I was told this was normal as the muscle is getting tighter and to keep trying till I get a pole change. My left leg is significantly tighter than my right and my right leg was a good 2mm longer than my left. These didn't bother me much actually, the important thing is that there were no device malfunctions and it was overall a very reliable device.

The pain increased when I started to go from 1 click to 2 click. (it was double the distraction after all) and I tried to spread it out, one in the morning and one at night. I started to take painkillers occasionally if I found it hard to sleep with the funny sore feeling. (Around 2/10 pain). I guess I was too spoilt the entire time having a painless LL experience. My legs started to feel tight and my ballerina worsened significantly (to like 4cm on each foot). My left ankle started to be a little twisted inwards.

I was still doing the regular physio exercises and stuck to a regime to stand up (while holding a bar) daily. I did not walk at all yet. (on hindsight, maybe I should have? but I was trying to play it very safe). By now my entire leg (quads and all) has already shrunk to bones. I tried going on a stationary bicycle for about 45 minutes per day, I did my stretches, I stood up religiously and continued 2 times per week Physio but I saw NO improvement with my ballerina or leg size. That was depressing. I guess it was because I was also doubling the distraction. Psychologically I was starting to get a little jaded from this whole experience. I wouldn't say I was depressed but if anything I was far from motivated anymore. On impulse I just decided that I would stop exercising all the way till I finished lengthening and start all over from that point.

I was around 5cm when I made that decision because I mean, hey it's only 1cm more to go. I'm sure stretching and all can wait. On paper I was supposed to be distraction 0.7mm per day but I guess I gave my legs a little rest here and there which brought the average rate down to about 0.5-0.6mm.

Eventually, from my calculations, I went to 6.5cm (and the x-ray shows that amount too, which tallies). I still do not have an absolute understanding of how the ISKD works but it was supposed to be a pre-set length. I'm not sure if my doctor gave me an additional 5mm or that there was some leeway in the mechanism. Anyway both legs finally aligned to the same length so I guess it wasn't a fault but a intentional design. The funny thing about a "capped" design is that you lengthen everyday blindly not knowing when is the end of the thread (of the rod). This went on for a good 2 weeks where I thought I would be finished but the rod still went on clicking. Intriguing I would say but more height is always good.

I finally finished lengthening 4 months post op, exactly. somewhere mid september. I started to develop knee bend in my right leg somewhere at 5.5-6cm. It was pretty bad and I had this very funny ache/pain when I tried to push my knees down straight. It was worrying and I started to get paranoid. My ballerina was very terrible at this point. I had not stretched for a complete one month and I went at a 0.7mm pace for the last stretch. Never do this. It was a mistake to abandon exercising just because I was demotivated as there was no progress (it's natural that there wouldn't be progress because it's an uphill battle while lengthening to try to get your ankles down!). I think I lost complete mobility of my ankles. I was stuck at the maximum flexion and i was a good 12cm off the ground while standing up. I still had once per week physio but I guess you have to count on personal daily effort when it comes to stuff like this.

Consolidation Stage - Part 1

Just to recap, at this point I had terrible ballerina and my right leg had knee bend which had some pain when I tried to straighten. It was an unpleasant state that I was in. But as I promised myself, hardcore therapy has to start. I started doing standing religiously again (I was holding on to an olympic bar that I have on the gym I have at home). I don't know what's the sandbagging that most people tell me to do but I just tried to straighten my knees everyday while pushing it as hard as I could.

The good news was that my knees worked out pretty quick. I think it only took a mere 2 weeks for my knee bend to completely go away. My ballerina dropped 2cm (I started to measure them) to 10cm elevation after the first 2-3 weeks. It was a great feeling that I was finally getting progress.

I went for a checkup about 2 weeks into consolidation. As expected, there wasn't much growth yet to change my weight bearing status and all but I was told that I could buy a walker and walk with it. So I bought it and it seemed ALOT safer. (technically I could walk with crutches due to the slight weight bearing capabilities of ISKD, I was light after all, like 55kg pre-LL, but it was deemed risky and I didn't want to fall down, break my rods so I played very safe). I was standing up for 5 minutes each time and did about 4-5 times per day including a brief walk around my room. Toilet though was still a problem because of the slight step down that my stupid toilet has.

I have been consolidating for about 8 weeks right now. The bone growth seems to be okay from the last x-ray I took and my doctor says that by the next visit (in 6 weeks) I should be full weight bearing. My ballerina has gone down about 3-4cm right now, my last official measurement was 9+cm ballerina but I can even tell it has gone lower just by visual inspecting it. While it is slow, it goes down and it takes a lot of effort. When I wear my lifts (3.5cm), I am only tip-toed for about a slight 1-2cm which is reassuring because I know I would be able to go out (with lifts) at the very least once I am given full weight bearing.


Consolidation Stage - Part 2

This is the phase I am currently in. I plan to master the crutches in a good 2-3 weeks so I can feel confident enough to maybe go out for a movie or meet up with friends for a meal. In a meantime, I have to walk as much as possible to try to ensure I get my full weight bearing status by the next visit.

--

There are a lot more to cover, but I still thought i'd take a break for now. (a little tired from typing) Also, feel free to ask me anything. (I'll be glad to answer any questions with the exception of my identity, doctor etc, you get my point).
 
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TRS

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Re: Impromptu's LL journey/diary - Internal Tibias
« Reply #1 on: November 15, 2014, 03:35:47 AM »

Great retrospective diary. Informative and descriptive.
Thanks for sharing the first ISKD experience here :)
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limbusername

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Re: Impromptu's LL journey/diary - Internal Tibias
« Reply #2 on: November 15, 2014, 11:47:47 PM »

Thanks so much for sharing your experience.  Nice to see a diary on internal tibias.  How do your legs feel right now?  Any lingering pain?  What is it specifically that is keeping the walker necessary?  Do your legs not work yet, or are you just following doctor's orders?  For instance, say, your house was on fire and you couldn't find your walker.  Would you be physically able to walk unassisted if you needed to?
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Impromptu

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Re: Impromptu's LL journey/diary - Internal Tibias
« Reply #3 on: November 16, 2014, 12:43:56 AM »

Thanks so much for sharing your experience.  Nice to see a diary on internal tibias.  How do your legs feel right now?  Any lingering pain?  What is it specifically that is keeping the walker necessary?  Do your legs not work yet, or are you just following doctor's orders?  For instance, say, your house was on fire and you couldn't find your walker.  Would you be physically able to walk unassisted if you needed to?

My legs feel fine/normal though they feel very weak. There is no pain at all. There used to be a spot where I get tingling feelings when I rub my hands over but it has gone for about 1 month though.

The reason for using a walker/crutches is because I don't have a bone bridge yet. The gap is not fully bridged and most of the weight is placed on the rod once I stand/walk. If there is too much pressure over time, the rod may break or bend. That is the last thing I want happen because that means having to re-operation and extending my recovery time. Though over time the bone formation is supposed to take over the loading from the rod and eventually it will bear full weight and that is when I'll be able to walk unaided again.

It's also very difficult to "initiate" strength from my legs now given that I haven't been really walking normally for about 6 months. I tend to use my arms a lot because I am conditioned to think that my legs is not supposed to take much weight. This is also a psychological barrier that I'll have to overcome soon.

If my house was on fire, LOL, i still won't be able to walk. the best bet for me is (if I can't find a walker) is to either call for help or to crawl my way to safety. My house is has a lot of stairs and I stay on the upper floors and up till now I have not attempted crutches with stairs (and obviously walker can't go down stairs). My best way would possibly to just go down with my butt as quick as I can. I've been doing that for a couple of months and can do that pretty quickly LOL.

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FutureManuteBol

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Re: Impromptu's LL journey/diary - Internal Tibias
« Reply #4 on: June 08, 2019, 07:40:58 PM »

How are you doing 5 years after the fact?
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