Quote from: FormerKidd on May 23, 2018, 03:43:20 AMI was not very flexible coming in, and due to my tightness, I had to slow down my rate of lengthening. Paley will tell you he doesn't think it makes a difference, but the physical therapists who work there will tell you that people who are more flexible have an easier time, and I do believe that. My advice to anyone considering this is to work on your flexibility well in advance.
I'm not a doctor, so this is just a random opinion on the internet. But it does seem to make sense to me.
In the case of gymnasts and dancers, their genetics lent themselves to a predisposition towards those careers. Those same genetics might allow them to have an easier time compared to others doing LL, specially if the lengthened amount is low.
When I think about it, considering you don't get any of the big scares of CLL (nonunion, mal-union, bone infection, DVT/PE/FES, refractures, nail breakage), then all that is left is for your bones to grow back, heal, and consolidate well. All that will happen at some point if you didn't have complications. However, as the bones grow back, they unnaturally stretch your soft tissues. Wouldn't it make sense that people who already have an easier time stretching their tissues on their own have an easier time and recovery with CLL, granted they limited themselves to safer, lower lengthening amounts? A lot is related to stretching.
OYG: I'm glad your journey is almost over. I'm also sorry that you had to go through so much pain for it.
EDIT: Wording.
Quadrilateral lengthening @ the Paley Institute - tibias 4cm + femurs 6cm
Quote from: AnotherLevel on May 23, 2018, 08:56:59 PMThank you very much for your reply, could you touch your toes? I spend time stretching and feel an improvement, then if I stop for a while I get tougher than ever, I think the fact I spend 9 hours a day driving makes my back stiff which hinders my flexibility!
I still can not touch my toes, what does paley think about this? How much have you lengthened? I’m looking at 6cm femurs max only too.
I could not touch my toes without bending my legs a little bit. I'm not sure this is an important metric, though.
Usually most people start having tightness around 5cm (in my case, closer to 4cm) and they have to slow down the rate of growth. The number of PT sessions included only covers 8cm at 1mm/day, so any tightness may result you in having to buy extra PT if you don't reach your goal by then - and it's not cheap.
6cm I would guess most people can do in that time period, but for anything more, I would advise a lot of stretching beforehand.
Btw, OYG I wasn't able to catch you the other day at PT, I sent you some messages when you get a chance.
are you going for full 10 cm?
OK, time to hijack back my thread :-P
I've been debating posting my actual diary given that STRYDE is available now and is indeed a complete game changer. After reading some posts from others trying to decide between PRECICE and STRYDE, I've decided to not post my diary, because I can't in good conscience advise anyone to use the PRECICE 2.2, when STRYDE is only <10% more expensive, but you save 4+ months of not being a likely depressed cripple in a wheelchair. So what I've been through will mostly not apply to STRYDE patients.
For example, I had very little appetite for the first two months, and I lost 20lbs, mostly muscle, including in the upper body (despite using the wheelchair and/or walker every day). I lost 2cms in my bicep circumference. The STRYDE patient though, started regaining muscle by the end of week 2, and no longer has an appetite problem.
Just a couple highlights that still apply to STRYDE:
I did quadrilateral, which I don't regret because I wouldn't expose myself to this PRECICE ordeal twice, and wanted to keep the healthy 0.8 tibia:femur ratio. The lengthening amounts are indeed smaller, BUT if you are unusually flexible (as one patient I met is) or disciplined, you can lengthen up to 5+8cm. That does require serious discipline and a massive amount of PT - the girl in question has always been into yoga and very flexible (supporting myloginacct's point that if you're genetically flexible, you might naturally end up doing yoga or the like, and the underlying factor is your genetics), has been doing two PT sessions per day at the Institute, plus 3 sessions at home (at least half hour each) plus pool. Apparently she wasn't affected by the apathy side-effect.
The surgery experiences were VERY different. The first surgery (tibias) and hospital recovery were pretty great. I chose a "caudal block" as the anesthesia method, and they used ketamine (a drug that makes you happy and can cure depression, but of course, is highly regulated), which was nice. During the recovery in the hospital bed I exaggerated my pain a little in order to get painkillers before the pain actually struck, which worked great. Toradol was very effective against nerve pain, and the other IV drug (I forgot) against muscle/bone pain.
The second surgery (femurs) and recovery however were way worse. Even though I asked for the same type of anesthesia, I got something else - I remember being in the OR and looking at the lights while they bent me over and put an epidural in. You do NOT want to remember being in the OR. When I woke up I felt miserable and threw up several times. I was in the hospital for 4 days or so, during which I reached pain level 9 or 10 - so bad I asked a nurse to hold her hand while I was crying in pain because morphine didn't help. A drug called dilaudid did help.
The first two weeks after each surgery were pretty terrible. Pain level 7-8 at least once a day, which medication helped more or less with. (Hint: THC helps, and it's not actually dangerous for your bones). By the end of week 3 after tibias, I was doing pretty well, but then the femurs surgery reset everything.
Sleep was horrible until I thought of buying a latex foam mattress (about 3 weeks after femurs), which has been a game changer - it doubled the amount of sleep I got from 3 hours (at most) to 5-6 hours.
Still, I wasn't able to do any productive work more complicated than paying bills - which should not be a problem with STRYDE because you'll be weight-bearing, which has neurological benefits.
Quote from: Oh So Arrogant on May 10, 2018, 11:36:30 PMAfter you finish lengthening and get to take these braces off, your legs will feel like a million bucks. You'll sleep like a baby.
I stopped being able to tolerate the braces at night after the femurs surgery, so I gave up on wearing them. Still, couldn't sleep like a baby as a result (see above). Of course, I don't advise doing this - do wear the braces. I didn't, and combined with my natural lack of flexibility, I had to stop lengthening the tibias at 3.5cm (estimated; 3.75cm measured on the x-rays). My initial dorsiflexion was 15 degrees, and I stopped when PTs said I should - at 8 degrees. It's slowly coming back after lots of standing in the walker on an incline board - 10 degrees now).
I also have tight hamstrings and have developed a really annoying (and limiting) nerve pain on the inside of the left leg, from the calf to the knee up to the groin. It burned whenever I tried to do a knee extension. That limited the amount of PT I could do on my own, and made PT sessions at the Institute extremely painful. At that point (~5 weeks after the femurs surgery, at about 3cm of length), I decided that being able to walk again was more important than 1 extra cm (which is what PTs said I could reasonably tolerate) and wound down the lengthening. I'm at 3.75cm in the femurs as well, but ended up with a discrepancy of 7mm - the left leg is shorter.
Here's a piece of advice: address the discrepancy AS YOU GO, not at the end of the lengthening, no matter what the doctors tell you. Calculate how much you need to extra lengthen the shorter segment, and throw in one extra turn per day for a number of days. I didn't do that and got screwed in two ways when we measured the discrepancy last week: the tibias have started consolidating, so there's nothing I can do about the 4mm shorter tibia; and now I'd have to overlengthen the left femur to make up for that - which not only takes 2-3 extra weeks (because I'm supposed to do 2 turns max per day now, vs. 4 in the beginning), but means I'll have a longer left femur and a longer right tibia. And 2-3 extra weeks before I can start consolidating the shorter leg. 
Another piece of advice: watch your x-rays like a hawk. Ask to get access to them, online or on a CD - whatever. Do your own measurements. Make sure both nails lengthen at the same rate. Look for signs of fractures. Etc. At the Paley Institute in particular, this is easiest if you remain in the room after the consult with the doctor, and go to the computer that shows your x-ray. Take the mouse, right click, and choose the "Distance" menu item. Draw lines on both bones from the top to the bottom of the epyphyses. Keep in mind that there's a magnification factor. Ask about it. At Paley, it's 4%, so in reality, things are 4% smaller - e.g. the 39mm of lengthening in the right nail is actually 0.96 *39 = ~37.44mm.
PT. It's painful. I can't deny that if I did more PT at home, I would've probably been able to lengthen more. The problem is that you need to overcome pain you're inflicting on yourself and can stop at any time. When a therapist inflicts pain on you, you grin and bear it. When you inflict it, you can stop at at time, or reduce the pain. This makes DIY PT sessions necessarily less effective. Plan on that. Get someone else to inflict the pain. Take pain meds (nothing really works on me for some reason). Hopefully PT will be a lot easier with STRYDE, since you can walk, and walking is the best PT.
Anyway, at 75% of my original 10cm goal, I'm satisfied. I'm no longer in pain when stationary; only when stretching or lying on my left side (due to the hip screws; that might not go away until I take them out a year from now. #FML)
I'll be flying back at the end of next week, starting the next chapter in the long slow journey of being able to walk again.
Thanks for your update! I think you made the right decision.
How is that discrepency possible with Precise. I thought that lengthening machine ensures the exact lengthening rate.
Could you please give me an example what the "healthy 0.8 tibi:femur ratio" means if for exampe someone's tibia is 35cm and his femur about 39cm.
Quote from: Great321 on June 02, 2018, 07:53:32 AMHow is that discrepency possible with Precise. I thought that lengthening machine ensures the exact lengthening rate.
I started out with a shorter left leg. This was seen in the first x-rays, when I had the first consultation to Dr. Paley, discussing LL options.
Quote from: Great321 on June 02, 2018, 07:53:32 AMCould you please give me an example what the "healthy 0.8 tibi:femur ratio" means if for exampe someone's tibia is 35cm and his femur about 39cm.
Before lengthening, my tibias were ~34.5cm and the femurs were ~43.5cm. If you divide the first number by the second, you get an original ratio of ~0.79.
After lengthening each segment by about 37mm, I have a tibia:femur ratio of ~38:~47, which is 0.8.
If you're 35:39 pre-CLL, that's a 0.89 tibia:femur ratio, so you should lengthen the femurs quite a bit more than the tibias. For example, +3cm in the tibias and +6 in the femurs would bring you to 38:45, which is 0.84. Or you could do only 5cm in the femurs and be at 0.795.
In any case, read that study and see if it's more important to you to have the best ratio, or to gain more height (e.g. if you do 6 or 7cm in the femurs).
Did you plan to lengthen your left leg more than the right on? My left leg is also half a centimeter shorter and it actually causes pain in my right hip and foot (I wear a lift for that now)
Thanks for the explanation:) My tibias seem to be too long 
My minimum goal is 10cm. My legs will be measured soon by a doctor. The 35/39cm are not the exact numbers. I will ask him about the 0.8 ratio and what he recommends for lengthening.
you should do at least 6 cm on femurs if you cant push tibias any more. 170k and not being 5'9 would be a total failure and regret in the future
Quote from: doomsday on June 03, 2018, 12:59:58 PMyou should do at least 6 cm on femurs if you cant push tibias any more. 170k and not being 5'9 would be a total failure and regret in the future
I'm pretty sure whatever he ends up doing, there's no way someone who went through 10/10 pain levels, and 3 hours of sleep almost everyday, just to overcome what nature and his environment gave him, can, or will, think of himself or his result as any sort of a failure - specially because of a 3cm difference. 
OYG and his doctors will know what is best for himself. From what he wrote too, it seems he decided and is about done with lengthening.
In the eventuality that much later down the road your conjecture could turn to a reality, rebreaking bones is a technical possibility - but I doubt it'll come to that.
Thanks for the support, myloginacc.
Quote from: myloginacc on June 05, 2018, 10:26:22 PMOYG and his doctors will know what is best for himself. From what he wrote too, it seems he decided and is about done with lengthening.
I forgot to mention another issue: I've been having reduced sensitivity in the left lower leg for about two weeks now. Motor control is fine, but the skin from the ankle to the knee has only about half the sensation I used to have. I stopped lengthening the tibias a month ago, and I've been distracting the left femur at only 0.5mm/day, so this is another worrying fact and reason I decided to stop.
Quote from: myloginacc on June 05, 2018, 10:26:22 PMIn the eventuality that much later down the road your conjecture could turn to a reality, rebreaking bones is a technical possibility - but I doubt it'll come to that.
Rebreaking is an option indeed. I should be able to gain 2 more inches. But I definitely won't be subjecting myself to the PRECISE downtime again.
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