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[Alu]

I can't advice you on that. It seems like a far more different approach to what others have done in the past. Just wait for either Yellow, or Programdude to respond on this one. But if the benefits are well documented and what not, and there shouldn't be any serious complications from this treatment then I myself wouldn't mind doing it.

Other then that it is good you're at least not suffering from that much pain since your lengthening phase is done and out; it really does seem like you're 40-50% done with this at least. Anything in particular that you're gonna be doing for the next couple of months to ensure maximum recovery. I'm sure continuing PT or movement can be the best course of action.

[BelowTheMean]

Congrats on finishing your lengthening and good luck on consolidation!

[DoingItForMe]

I can't advice you on that. It seems like a far more different approach to what others have done in the past. Just wait for either Yellow, or Programdude to respond on this one. But if the benefits are well documented and what not, and there shouldn't be any serious complications from this treatment then I myself wouldn't mind doing it.

Other then that it is good you're at least not suffering from that much pain since your lengthening phase is done and out; it really does seem like you're 40-50% done with this at least. Anything in particular that you're gonna be doing for the next couple of months to ensure maximum recovery. I'm sure continuing PT or movement can be the best course of action.

Paley told me that he's been using it for 10 years now for situations where the bone growth is not as fast as it should be. He also sent me an article on patients who used this stuff for limb lengthening, and that it did indeed cut down the consolidation period significantly. It was something like the teenagers studied on average were consolidating slowly at 110 days per cm lengthened (normally it's around 30 days per cm lengthened). And then they used the drugs, and it decreased by 40 days per cm down to 70 days per cm lengthened for consolidation. That may sound like a long time, but apparently if you use external fixators, it takes that long to consolidate. Because I have internal rods that already support 75 lbs each, I only have to consolidate enough to support an additional 75 lbs on top of the internal rods to be fully weight bearing on each leg. That's why the months until I can walk without support is on average only 3 months post lengthening. But the average time to play sports/jumping is 5-6 months post lengthening. And I think it'll take about 8 months (if we assume the average of 30 days per cm lengthened) to fully consolidate. That would explain why people remove the rods a year after surgery. That would be 3 months of lengthening + 8 months of consolidation + one month buffer.

[DoingItForMe]

Just wanted to update you guys to let you know that I can confirm that I am regaining flexibility rather quickly even though the amount of PT I do has dropped. This isn't from a measured way, but I can visibly see that my knee bend is getting better. It looks like I'm bending 10-20 degrees more than when I finished lengthening a few weeks ago. Whether I'd regain back all the flexibility I had since the before surgery, I don't know. Most likely not, because I think some tendons are almost impossible to stretch. The reason why my knee bend is getting better is because it's mostly my thigh muscles that are holding it back from bending.

[bluebarbie]

Hi, DoingItFor me..umm I didn't know that internal femurs effects knee bending. How much can u bend now, is it past 90 degrees? How much was it when u were at ur last lenghtenings? How is the feelings ,like stiff quad muscles, rusty knees, any pain when u bend ur knees? Sorry for many questions. Good luck and wish u the fastest recovery.

[DoingItForMe]

Hi, DoingItFor me..umm I didn't know that internal femurs effects knee bending. How much can u bend now, is it past 90 degrees? How much was it when u were at ur last lenghtenings? How is the feelings ,like stiff quad muscles, rusty knees, any pain when u bend ur knees? Sorry for many questions. Good luck and wish u the fastest recovery.

With femur lengthening, the problem is that my quad muscles get overstretched and prevent me from bending my knees fully. I used to have creaky noises coming from my knees when I was lengthening. But when I stopped, all the noises and clicking sounds went away. The pain I feel when bending my knees comes from the overstretched quad muscles. The feeling is similar to if someone was pulling your finger too far back.

I was always able to bend my knees past 90 degrees, and this was due to the amount of PT I did during lengthening. Dr. Paley would have stopped my lengthening process or slowed it down if I couldn't get past certain flexibility measurements - one of which is the 90 degree knee bend, because that would have made sitting very painful. So I worked really hard each day to stretch my legs. From 5 cm to 7 cm, I was even able to improve my flexibility - I think went from 120 degrees to 135, I forget. From 7 cm to 8 cm, I don't know. They never measured me again at 8 cm, because I was already done, and measuring my flexibility will do nothing for me. Having said that, my knee bend at the end of lengthening was probably at 100-110 degrees and decreased significantly from when I was at 7 cm. Now it's closer to maybe 130 degrees or more. Prior to surgery I was able to bend it to around 170 degrees and was only stopped by my ankles touching my butt.

[bluebarbie]

Thank u for answering my questions , I'm sure u will gain back up full flexibility and Roms back very soon. For me I'm still at around 90 and working full time on gaining full flexion coz I did external with Latn. It has been nearly 3 months aldy after nail exchange. Improving but very slow.
I m sure ull be all flexible and can bend smoothly and easily around this time of mine. Wish u a fast recovery.

[bluebarbie]

Thank u for answering my questions , I'm sure u will gain back up full flexibility and Roms back very soon. For me I'm still at around 90 and working full time on gaining full flexion coz I did external with Latn. It has been nearly 3 months aldy after nail exchange. Improving but very slow.
I m sure ull be all flexible and can bend smoothly and easily around this time of mine. Wish u a fast recovery.

[DoingItForMe]

Thank u for answering my questions , I'm sure u will gain back up full flexibility and Roms back very soon. For me I'm still at around 90 and working full time on gaining full flexion coz I did external with Latn. It has been nearly 3 months aldy after nail exchange. Improving but very slow.
I m sure ull be all flexible and can bend smoothly and easily around this time of mine. Wish u a fast recovery.

Thanks. Good luck with your recovery as well. What I did to regain my flexibility so quickly was stretch whenever I thought about it. I don't set aside a time for it. I just do it whenever I think about it. So I spend around 3-4 hours a day stretching when you add it all up.

[Iamready]

so there's no overdoing it when it comes to stretching?

[Uppland]

so there's no overdoing it when it comes to stretching?

You can always overdo things, programdude had his femur snap in half during a stretching session.

[DoingItForMe]

so there's no overdoing it when it comes to stretching?

The thing is that I'm stretching frequently and not really pushing super hard. I am afraid of snapping my leg, especially after what happened to ProgramDude. The key is stretching for long periods of time, but not necessarily stretching too hard. Also, don't bounce. Just stretch until you feel a stretch (some pain, but not so much that you feel unbearable level 10 pain), and then hold it for a minute. Then just keep doing this throughout the day. This is how I'm regaining my flexibility at a pretty fast pace. My thighs feel stiff and sore every morning after long stretching sessions, but it loosens up again after a few stretches. I'm very happy at the pace that I'm regaining my flexibility in terms of knee bend - the one thing I've been working on the most. It's motivating when you can see the progress with your nked eye. It's only been less than a month after I stopped lengthening, and I'm already at around 140 degrees in terms of knee bending. I was probably at 100 degrees when stopped lengthening. My goal is to be able to bend it all the way at 170 degrees. So I'm happy with the progress.

For stretching my hip flexors (i.e. fixing duckass), I try sleeping on my stomach for a bit to try to straighten out my body. I hold it for maybe 10-30 minutes, and then I go to sleep.

[Genetic_solutions]

Hey, man 
Hope you have a great recovery! When do you think that you can walk independently without support?

[programdude]

I wouldn't call it a stretching session- one simple casual stretch was all it took on the bones- months after removal where I was not only allowed but encouraged to stretch during.

[lumiere]

I've read just the last updates about stretching. The better thing in my opinion is don't think too much about stretching during the lengthening and consolidation phase, moreover after the frame/nail remotion. Regular walking, stairs walking, etc, would be enough, things will improve by theirself. I would start stretching when bones are REALLY strong enough to prevent bending and bones breaking, for instance after one year from remotion (in the case of external fixation).

[DoingItForMe]

Hey, man 
Hope you have a great recovery! When do you think that you can walk independently without support?

The expected recovery time until I can walk again without support is 3 months after I stopped lengthening. And then sports/running/jumping would be 2 months after that. Some people take only 2 months if their bone growth is fast. Mine has been slow while I was lengthening. But now I'm drinking a lot of milk (calcium & vit D.) and using an exogen machine daily. Exogen might not work. I read somewhere where it only worked for 1 out of 3 patients. And then for those it worked on, it increased recovery by up to around 30%. So if I'm one of the lucky ones where the machine works on and I get the max growth rate, then I might be able to walk again in 2 months. But knowing how unlucky I've been most of my life, I'd guess 3 months is more likely. I'll be happy with 3 months recovery time. Some people have five months recovery time.

[DoingItForMe]

Just wanted to give an update that my scars are shrinking. I thought that they were going to fade in color first like the other patients, but after looking at it carefully, I noticed that they were actually shrinking. The outside of the scars is slowly turning into flesh color. My IT band scar is about 90% flesh color now. The parts that are still dark are the two holes on either end of the IT band scar. Dr. Paley told me that most likely this will never go away unless I have laser removal surgery. The flesh-colored portion is still a visible scar, but at least it's not noticeable unless you point it out.

[Alu]

Where exactly are these scares located at? Do you think if you don't ever get laser removal you can easily hide it? Also would you even consider laser removal lol?

Anyways good to hear from you. I must ask how's your set up in your home as you are going through with consolidation?

[alps]

that's awesome DoingItForMe! Can you upload pics of scars and proportions?

[DoingItForMe]

Where exactly are these scares located at? Do you think if you don't ever get laser removal you can easily hide it? Also would you even consider laser removal lol?

Anyways good to hear from you. I must ask how's your set up in your home as you are going through with consolidation?

They're located along the outside of your legs, almost in a straight line if you connect the dots. There's an IT band scar which is about 2.5 inches long and looks like someone cut you. That one is near the knee. Next up are two scars for the lower screws. They look like the size of your pinky's fingernail. Next up the leg is one dot where they chiseled and broke my femur. This one is small like the screw scars. Next up are two more scars where the top screws are. This is located around where your crotch starts. And then finally at the top of where your femur bone ends is a big scar that's about an inch long and 1/3 inch thick.

At the rate that the scars are healing, I'm pretty sure that these scars will go away eventually. And even if they don't, I'm going to end up with the same scars when I remove the rod. The only scars that will not reappear when removing the rods are the IT band ones and the ones used for breaking the femur. Luckily, those are the ones that are fading the fastest.

I might consider laser removal if the scars don't go away after rod removal. But most likely, I don't care, because I normally wear shorts or jeans that will cover the scars. The dot that Dr. Paley said will likely never go away will just look like a birthmark. The other scars will probably fade into flesh color.

My house is just set up like my hotel room. I put everything near my bed for easy access. I only have to get up to shower and poop and cook food. I can pretty much do everything on my own, except take out the trash and buy groceries. I have friends to help me out with that.

Sorry, no pics for now. I can describe it for you guys, though.

My proportions look fine. I asked my friends to look and they said that I looked fine. I actually like the way my thighs look now, because back then, I used to think that my thighs were pretty short. Especially when I sat down and looked down on my thighs, they looked stubby. Now they look like normal length. The thing is, if you wear your clothes a certain way, people can't really tell what your proportions are. Especially if you wear all black like a suit. Or even if you wear gym shorts, you can adjust how high up or down your gym shorts are on your body and change the visual proportions of our legs accordingly. When I took a picture of myself, I actually look pretty tall now, because of the illusion having longer legs.

I no longer think I'm short anymore, and can't wait to be able to walk again and put this whole ordeal behind me. It's only been slightly less than a month of consolidation, and it already feels like eternity. Time seems to slow down when you're stuck at home and can't really go out to do things. I've been swimming in my pool to pass time. That's the only thing that seems to help me pass time faster. It's also where most of my exercise comes from.

[mb53]

Have you started taking steps yet? Obviously not walking, but just like 1-3 steps around your bed.

[Alu]

That's great to know. I personally see myself wearing suits all the time cause of my possible work profession and because who doesn't look gook in suits: especially when you have long legs it can look pretty good.

[DoingItForMe]

Have you started taking steps yet? Obviously not walking, but just like 1-3 steps around your bed.

I don't dare take steps without crutches/walker yet. I'm not in a rush, and I'm taking this consolidation very cautiously, especially after what happened to programdude. My rule of thumb is that if it hurts, then I'm putting too much weight on my legs. I'm going to get my x-rays done next week, and I'll find out how I'm doing then. Hopefully Dr. Paley will give me the okay for some extra weight-bearing, because I'd like to at least lean to one side or the other. Before, if I lean even just a few inches, I put more than 75 lbs onto one leg.

[DoingItForMe]

I'm getting closer and closer to being able to touch my butt with my ankles during a knee bend. I am only about 5-8 inches away depending on how hard I press down on my leg. If I had to take a rough guess, my knee bend is about 150 degrees. It appears that it's getting harder and harder to improve my knee bend. I was starting to doubt whether I'd get to touch my butt with my ankles again this week because of the slower progress. But if my progress does continue, I'd be able to do it by the end November. I'd be satisfied with being able to touch my butt with my ankles, because that was my original flexibility. The knee bend is the most important flexibility marker for me, because I want to be able to crouch fully. All other flexibility traits don't matter much to me, as I've never really needed to touch my toes while standing or being able to do a split.

It's now been a month after I stopped lengthening. I took an xray and the bone growth looks great on the left leg. Much more bone density than my previous xray a month ago. Paley increased my left leg's weightbearing to 100 lbs (up from 75). My combination of drinking a lot of milk, calcium supplements, and Exogen is working. Also I can't say with 100% certainty that Exogen did anything, because my right leg's growth is still slow. So no weightbearing increase for the right leg.

If Dr. Paley increased my weightbearing by 25 lbs after just a month. Then I only need two more months to get another 50 lb weightbearing increase. Which means that I should be able to fully weight bear on the left leg after 3 months of consolidation. I have no clue how long it'd take to weightbear on the right leg, since he didn't increase my weightbearing. I'm starting to think that my right leg's slow bone growth will be why I will not be able to walk without crutches until well into 2016. I have a Zometa injection scheduled in early December, in case my bone growth continues to be slow. The Zometa injection should help speed things up a bit. I'm going to wait until my 2nd month's xrays before I decide to take the injection.

[Penguinn]

Good to see you're on the path to steady recovery.

I'm hoping I can walk 4.5 to 5 months after my surgery next year.

[DoingItForMe]

Good to see you're on the path to steady recovery.

I'm hoping I can walk 4.5 to 5 months after my surgery next year.

Good to see you're on the path to steady recovery.

I'm hoping I can walk 4.5 to 5 months after my surgery next year.

That's very fast. Normally, the recovery time is equal to the lengthening time. In my case, that's 3 months of lengthening and 3 months of consolidation for a total of 6 months. If you want to be able to walk after 4.5 months to 5 months, you probably have to lengthen less or go with a higher weight-bearing rod.

[DoingItForMe]

A week later... Update on my ankle to butt flexibility: I'm only about 3 inches away from touching my butt with my ankles if I push my leg towards it. So that's an improvement of about 2 inches per week. This is quite the improvement from when I stopped lengthening and could only bend my leg about 100 degrees. This means that I should be able to touch my ankle to my butt by the end of this month. Improved flexibility means that getting around is less painful, because I'm not stretching as much to move around. Stretching is my only source of pain right now - mainly my quad muscles.

Importance of stretching: So I did an experiment on myself to see if stretching actually improves flexibility significantly. I stopped stretching my right leg as much as my left leg just to see if there's a difference (in pain and stretching). And there was. My right leg is still around 6 inches away from reaching my butt. Not much improvement from a week ago. So if you're doing LL, be sure to stretch regularly! It makes a big difference. There wasn't a big difference in pain, though. I'm still waking up every morning with both my legs feeling really stiff and somewhat painful. Hopefully that will go away when I've reached my goal of being able to touch my ankles to my butt.

Maybe some LL veteran who experienced the same stiff leg pain can chime in and let me know if the pain ever goes away.

[DoingItForMe]

I finally did it. I touched my thigh with the back of my ankle on my left leg. But this is with assistance from me pulling my foot towards it. Either way, I'm happy that I achieved the full 170 degrees on at least one leg. The other leg is still 3 inches away reaching the thigh. So I'm guessing that it'd take another week or two before that leg can reach my thighs.

If I don't assist my foot, my left ankle dangles 3 inches away from my thighs. I'm sure that in two weeks, it would be able to reach the thighs without assistance. At which point, it'd have only taken me two months to go from 90 degree flexibility to 170-180 degrees.

So I strongly believe that you can regain your flexibility if you really tried to. My butt used to be flat and missing when I was lengthening. It has now returned a bit. Still not as full as prior to surgery, but there's at least something now. When I'm able to do squats again, I'm sure that it'll fill back in.

Paley said that there's strong possibility that I'll be able to fully weight bear on the left leg after only 2 months after I stop lengthening. That'd be impressive, because I lengthened for 3 months. In my x-ray on the left leg, the bone growth looks like a big bulge. It's thicker than the original femur. No wonder why they say that a broken bone becomes stronger after it heals.

Also, I think Dr. Paley is very conservative with the weight bearing numbers. I'm very positive that I went past his weight bearing limits a few times by accident, and I turned out fine. I am about 90% certain that I am fully weight bearing already right now on the left leg, because I tried standing on one leg and slowly letting go of my walker. I didn't feel any pain like I used when I put too much weight on it. The right leg still feels a sharp pain if I tried the same. As soon as I felt the pain, I immediately stopped putting weight on it.

But keep in mind that this was only while standing. If I were to walk, it'd probably put more than my full weight on one leg because of the stomping action. But my theory is that Paley is very conservative with the weight bearing numbers. I'd prefer it that way, so that when he says that I can fully walk again, I'll know for sure that I can fully walk again.

[bluebarbie]

Congratulations on your achievement. I'm sure you'll regain your full flexibility very soon. Do you feel stiffness in your quads or any discomfort in your knees in the morning or when you have kept them straight for some time and suddenly try to bend them fully?

[DoingItForMe]

Yes. I asked Dr. Paley about that and he said that it'd go away with time. I'm thinking that it has to do with the fact that I keep stretching my legs everyday to try to regain flexibility. So the pain is probably growing pains or my muscle fibers ripping and regrowing.

I tried taking a few steps today without much assistance with my walker. I was able to walk. But I was only willing to take a few steps. In an emergency, I think I'll be able to walk a few steps. It feels weird to walk unassisted. My legs feel very weak.

[DoingItForMe]

Today's probably the first time in a long time that I didn't wake up with my legs feeling stiff or in pain. It's been almost exactly two months since I've stopped lengthening. Waking up to pain in my legs everyday for the rest of my life was one of my fears, even though Dr. Paley reassured me that it'd go away. But it's a great feeling when you know it has stopped. It's probably because I stopped forcing my quad muscles to stretch to regain flexibility. The only pain left in my legs is where the top end of my femur is. I suspect that it's the feeling of the ends of the screws rubbing against my flesh. That pain is only felt if I press down on that bony part of the femur or if I move my legs in an angle where the femur rubs against my flesh.

Today's also the first time I touched my right thigh with my right ankle. This means that I've been able to touch both thighs with both ankles now.

But I've stop making progress with touching my butt with my ankles on the left leg. I compared myself with my flexible friend who can do splits, and she wasn't able to touch her butt with her ankles without using her arms, too. So I guess it's normal for your ankles to be 3 inches or so away from your butt when you bend your knees with only your leg muscles. So I've stopped trying to stretch my legs further, because I wanted to know if the pain in my quad muscles would go away from all the stretching I've done. It did, and I hope stays that way.