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[Penguinn]

I didn't do running before the surgery anyway. I do elliptical and swimming

But the knee cap and clicking problem is temporary, right? Plus the doctor said it's common, so what's the problem?

[DoingItForMe]

It's temporary hopefully. The reason is two things. One is that my knee caps are being pushed to the outside, because my femur is jamming into it and the tendons around the knee cap are holding it back from letting it stay in the middle. So it is grinding against my knee joints.

Another clicking noise is near the middle of my nail. They said that this is from the bone forming around the gap. The formation is not 100% smooth and narrow. It will be slightly larger than the rest of the femur. This causes the rough newly formed bone to scrap against the muscles.

I will report that with more stretching, I managed to get the clicking noise reduced. Other patients said that it goes away after a few weeks.

[DoingItForMe]

Does anyone know if LL patients are still on pain meds after 6 cm and heading to 8 cm? Dr. Packer told me that most people have been off pain meds by now. But half the patients at the hotel are on it still and half are off it. In general, it seems like those under 25 of age are off it, and those over it are still on it. But I'm curious to know if other LLs who have done it have aches and tightness while going from 6 cm to 8 cm.

I still have a lot of pain in my legs when I'm not on Oxy. The pain is like a lingering ache/soreness. And then there's also a sharp pain in my knee joints. I'm starting to get worried that the pain will be permanent. Though most seem to report that a week after the lengthening stops, the pain stops. I hope that is the case for me as well.

[Penguinn]

Don't worry about the pain being permanent. You're still in the process, damn it. Worry if it's there after the process.

[Medium Drink Of Water]

Does anyone know if LL patients are still on pain meds after 6 cm and heading to 8 cm? Dr. Packer told me that most people have been off pain meds by now. But half the patients at the hotel are on it still and half are off it. In general, it seems like those under 25 of age are off it, and those over it are still on it. But I'm curious to know if other LLs who have done it have aches and tightness while going from 6 cm to 8 cm.

I still have a lot of pain in my legs when I'm not on Oxy. The pain is like a lingering ache/soreness. And then there's also a sharp pain in my knee joints. I'm starting to get worried that the pain will be permanent. Though most seem to report that a week after the lengthening stops, the pain stops. I hope that is the case for me as well.

Most people in China while I was there took pain meds the entire time.  I've never heard of people going off the pain meds once they get past a certain point.  I had aches, soreness, and tightness the whole time I was lengthening.  What you're going through sounds perfectly normal to me.  Most likely all of your problems will go away once you're done.

[YellowSpike]

Does anyone know if LL patients are still on pain meds after 6 cm and heading to 8 cm? Dr. Packer told me that most people have been off pain meds by now. But half the patients at the hotel are on it still and half are off it. In general, it seems like those under 25 of age are off it, and those over it are still on it. But I'm curious to know if other LLs who have done it have aches and tightness while going from 6 cm to 8 cm.

I still have a lot of pain in my legs when I'm not on Oxy. The pain is like a lingering ache/soreness. And then there's also a sharp pain in my knee joints. I'm starting to get worried that the pain will be permanent. Though most seem to report that a week after the lengthening stops, the pain stops. I hope that is the case for me as well.

I experienced most of what you describe. I was on pain meds the entire time I was lengthening. After 5cm, I felt it got pretty hard. 6cm to 7cm was a real b*tch. I wanted to go to 8cm, but had to stop around 7cm or a little over that because the pain in my left leg (which I still have sometimes, though not nearly as bad) got almost unbearable.

[DoingItForMe]

Okay, thanks for the reassurance, guys. And yea, around 5 cm is when my thighs got tighter while bending them. Followed by my knee caps starting to click and hurt. I'm still aiming for 8 cm. Just wanted to make sure I don't mess up my legs by lengthening too much. My nail is slightly bent btw, since 5 cm. the doctors didn't mention it, but I can see it in the X-rays. It looks exactly like programdude's X-rays. The lengthening still works even though it's slightly bent, so I don't care. I looked at other patient's X-rays and they are also slightly bent. By the way, I have a lot of stories to tell about other patients who don't have diaries here. I will tell them when my process is over and when theirs are over, too.

[DoingItForMe]

For first time this morning, I woke up not so sore. And for the first time, I didn't wake up from the pain. I had a slight soreness in my knee joints, because I slept in a fetal position. Stretching out my legs straight immediately fixed that pain. Normally I'd wake up in agonizing pain and then rush to take pain meds. This morning and also yesterday, I was feeling less pain. I am at 6.1 cm right now, and should be 6.2 by the end of the day. They want me to lengthen to 8.4 cm, so I am literally counting down the days now. But the lack of pain now is very very promising. So what changed?

Tropical storm Erika is hitting us and the pool is constantly rained out. I only went to the pool for about 10 minutes before getting out. This is the first time I've done so little pool PT. Normally I walk for 3 hours, which is about 1 mile or so. If you look at my legs, they're still bulky, and my PTs don't even bother doing leg exercises much with me anymore, because of how much exercise I do already.

Anyway, I realize now that the pain I've been feeling is probably the soreness from all the stretching and walking I do in the pool and at the PT office - where I also tell them to push me to pain level 10 and hold it. My pain tolerance lets them flex me that much, and it was the only reason why I gained flexibility when normally people lose flexibility. However, I noticed on Friday that I let them stretch me too far each time, because for first time, they pulled a muscle. While doing a straight leg raise on my right leg, the tendon connecting my groin to my left inner thigh felt a very very sharp pain like something ripped. The PT immediately ran and grabbed an ice pack. It still hurt for the rest of Saturday, and I think it stopped and healed up now.

So to sum things up, I decided to use yesterday as my "rest day", which I don't normally do. Every day for the past two month had no rest days. And with the "rest day", most of my aches and soreness went away. I only took four Oxycodones yesterday without any OxyContin. This is the least amount of Oxy I've ever taken before. Before that I was on 5 for two days, and before that I was on 6 for two days, and before that I was on OxyContin with various amounts of Oxycodone (4-6).

So I conclude that the pains are gone because I either finally let my body have a rest day from all working out. Or I've been having withdrawal symptoms from Oxy and now no longer do. Yesterday was the only day I never took more then 5 mg of Oxy per 4-6 hours. Or my body just got lucky and healed all the problem areas. Either way, I am feeling in an upbeat mood this morning because now I know that none the pain I felt was permanent. Unless something happens in the next 23 days, I should be able to get to 8.4 cm without permanent damage to my body. I am so happy right now.

Of course, I was still on Oxy yesterday, but when I woke up this morning, it would have been over 8 hours since I last took one. And I know Oxy wears off after 3-4 hours. So each time I wake up, I know what I would feel like if I didn't take Oxy. I finally felt okay for the first time in a long time. I mean, I still feel pain when I flex my legs past its limits, but I no longer have that lingering aches and soreness all over. With this knowledge, I'm still going to do a lot of PT at home and at the hospital. Right now, my flexibility and getting to 8.4 cm is more important than not feeling pain. This would probably mean that I'd have to go back to taking more Oxy to battle the pain. I'm fine with that, because I just proved in the past month that I am capable of weaning myself off Oxy and resisting the temptation to take them just to get that "high". My rest day was for me to just find out if the pain would stop if I stopped working myself so hard. I'm an overachiever, so that explains why I've been doing more PT than most patients here.

[DoingItForMe]

Met with Dr. Paley today. He told me that the clicking noise in my femur sounds mechanical and that it is probably the rods rubbing against each other internally. I asked him if I should be worried and he said no. But he will check my X-rays tomorrow and give me a better idea of how I'm doing. Also, he told me to expect to stay at least an extra few days after my lengthening is complete. Mine should be complete in 22 days (so next next next Monday). I have a doctor's appointment with him that day. But he said not to expect to leave the next day. I was quite surprised by that. He said to expect to leave Friday, but he will let me go home early if he sees that I am doing well. So for future patients, expect to be in West Palm Beach around 90 days instead of 80 days of lengthening. Seems like everyone doesn't lengthen the exact amount each time. Everyone seems to lose .25 mm of lengthening every two weeks. So they want patients to lengthen to 8.4 cm to get to exactly 8 cm. Their explanation is that it is hard to lengthening perfectly each time. I don't buy it. I lengthen exactly as they told me to without any mistakes. My explanation is that the machine is not exactly "precise".

[YellowSpike]

I have heard several times that the Precice sometimes doesn't give you the full amount that you click because the muscles  (as they tense up) fight against the lengthening mechanism. I've heard this happen for Precice and Fitbone patients (seems to be the motorized nails). Clicking nails like the Gnail and Betzbone are more painful and probably not ideal for soft tissue, but they seem to give you a bit more than what you click. But I'll probably go back whenever I can and finish what's left on my nails (2-3cm) to feel fully accomplished.

Very happy that you seem to be able to get your full goal man! Congrats in advance, you're almost home!

[DoingItForMe]

Thanks YellowSpike. Congrats to you in advance as well to achieving your goal if you get the extra 2-3 cm.

[YellowSpike]

Thanks YellowSpike. Congrats to you in advance as well to achieving your goal if you get the extra 2-3 cm.

Thanks. You are reaping the rewards of being a model and dedicated patient. I thought I worked hard, but apparently not hard enough (my main mistake was not walking enough early on). Maybe I shouldn't have done LL in a foreign country all alone with zero help (do all your own shopping, getting food prepared, laundry, etc.)...but I digress lol

At this point, I know exactly what I have to do for a better recovery (stretch more and walk a lot, even with broken legs). So 2-3cm more will be a walk in the park for me relative to what I just did (7cm). Proportions won't be ideal, but I don't think they'll be too terrible (mockups looked about the same as what they are right now). Being 5'9" I think will be worth having slightly off proportions (although the two girls who have seen me nked that know I did LL have said my proportions, even standing up, look fine, and I pressed them both to tell me the truth and not lie).

How are you able to walk though, I thought Precice wasn't weight bearing? Do you mean with crutches/walker? Keep on doing what you're doing. If Dr. Paley believes your recovery will be fine at 8cm, go for it and don't look back. You might not need to do a second LL like me if you can get close to 5'9.

[DoingItForMe]

I walk and stretch in the pool 3 hours a day. I always look like a grandpa afterwards from the wrinkly fingers and feet. PT is my full time job. And I'm a hardworker.

[DoingItForMe]

The nerve pain that I used to have on my left leg when doing a straight leg raise is gone. So things are looking up for me. Now there's clicking on my left lags as well, but it doesn't bother me. I just hope that it doesn't cause me arthritis in the future, because it is the sound of my knees rubbing against the joints. They haven't told me to stop lengthening yet, so I am hopeful. Only 20 more days of lengthening left!!!! I can see the light!

[mb53]

What's the deal with this procedure and alcohol? I know cigarettes are obviously a no-go. But I'm a little over halfway done and this surgery stresses the hell out of me. There are times I could really use a drink.

[DoingItForMe]

Alcohol reacts with your drugs.

[DoingItForMe]

18 more days and hopefully I can go home. Clicking noises in my legs are getting louder. One of the theories is that the nails bent enough to cause a gap between the rod and the bone. And the clicking is the rod rattling inside my leg. There's also clicking in my knee caps that's normal with tightness at this stage. Either way, I am still a go for 8 cm and my next X-ray and appointment is with Dr. Paley next Friday. I should be at 7 cm then (7.4 cm according to X-ray). So far my adductors are tight and my hamstrings are tights. I can only leg raise on my right leg to 70 degrees (85 on the left). The cut off point is 65 before they stop my lengthening. Luckily I got from 65 to 70 when I at 4.5 cm. I am working extra hard to at least keep it at 70 degrees so they give me the go ahead for 8 cm. One patient managed to get from 70 back to 90 by the time he got to 8 cm. Challenge accepted!

[goldenegg]

Hey Doingitforme,  glad to hear that you're going strong in the final stretch.  It's amazing that patients are actually able to gain flexibility during lengthening!  I can't imagine the amount of dedication to PT required to do this.

Just wondering to what point are bent nails acceptable?  I've read some diaries of bent nails that need to be replaced, but others like yours and programdude where slight bends are ok and can keep lengthening. Would really love to hear Dr. Paley's thoughts, if any, he shared with you on how much bending is considered ok.  Also if there is any concern about the bone healing curved?  Really appreciate it!

[Iamready]

Hey bro.  Are you doing the stretching sessions alone when you're not at physical therapy?  Would it be better to hire someone to help me?

[mb53]

Hey bro.  Are you doing the stretching sessions alone when you're not at physical therapy?  Would it be better to hire someone to help me?

I'm not the OP but I'm also a Paley patient and I much prefer stretching on my own. I can't do all of them but I can do the vast majority.

[DoingItForMe]

It's possible to do the stretching on your own. I'm assuming that the nails can bend slightly as long as it is still lengthening. The ones who have to stop are probably the ones who fracture their bones or if the nails stop lengthening. I mean, my bones are adapting to the bent nails. It is growing around it and conforming to the shape. It'll probably be really hard to take out while bent though. Which is why I think programdude had hip pain after having his rods removed. The doctor must have had to use a lot of force to remove the bent rods.

[DoingItForMe]

I asked Paley and he said that my xrays are perfect and that the slight bend is normal. He said that it's even desirable to have the bend for alignment reasons. According to my distraction machine, I distracted 68 mm by the end of the day. Which would mean that I should be around 6.4 cm taller right now.

[goldenegg]

I asked Paley and he said that my xrays are perfect and that the slight bend is normal. He said that it's even desirable to have the bend for alignment reasons. According to my distraction machine, I distracted 68 mm by the end of the day. Which would mean that I should be around 6.4 cm taller right now.

Great info.  Thanks for asking!

[Alu]

Good to know things are going well for ya at least. Keep it up! Also I'd love to hear more stories about your time with other patients who are undergoing LL (I think at least knowing that there is a chance to experience this with others sure does help); but that also begs the question of just how many people undergo LL at any point in time.

[DoingItForMe]

I will talk about other patients after I am done lengthening. I don't want retaliation for saying negative things that happened to the other patients.

[Alu]

Ahh I see, makes sense for the most part. Hopefully there wasn't anything too negative that might have happened to the other patients you were with. Like I said man keep it up, you seem to be doing great and your more constant feedback has been inspirational for me especially considering our similar circumstances. I do wish you well! (Even though you never did actually answer my question regarding your inseam lol). Godspeed.

[DoingItForMe]

I don't know my inseam. There were a bunch of mistakes made by Paley/Paley's team. And several negative experiences (like make patients and parents cry type of situations). I will not elaborate because I fear retaliation. It is not hard to figure out which patient I am, since I am one of the only one within the group of patients who doesn't have a problem. I am one of the lucky ones. Perhaps those patients will write their own diaries explaining their negative experiences. But I really don't want to get on Paley's bad side, since I am still being treated by him. Plus, nothing bad happened to me, so I have nothing bad to say in my own experience other than not getting Oxycontin from the very start.

[DoingItForMe]

There are about 8 other CLL patients that I know of right now. So I'd say around 7 CLL patients a month. Most patients are not doing it cosmetically. Lots of small children here. You really bound with the other CLL patients. Except there are stuck-up ones who think that they're too good to talk to other people.

[Uppland]

I will talk about other patients after I am done lengthening. I don't want retaliation for saying negative things that happened to the other patients.

Would Paley really do that, do you get that kind of vibe from him?

[Penguinn]

I don't know if non-cosmetic LL and cosmetic LL complications can be placed under the same scrutiny. People doing it because they had an accident are bound to have more complications than someone that had his leg tenderly surgically broken.

Out of the cosmetic LL patients, how many are doing well?

And all the best!

[DoingItForMe]

Would Paley really do that, do you get that kind of vibe from him?

Dr. Paley really likes me. I'm like his star patient. He even gave me his personal cell phone number that I can get immediate access/questions from him. I do not want to ruin that type of relationship I have with him. Sorry, but you're going to have to hear about the negative experiences from others.

Here's my honest opinion about him though: He's a very safe doctor. He'll stop you short of your goal if he thinks you might damage yourself permanently. That's why a lot of patients are upset. I'm the only one in my group that's actually heading towards 8 cm without nerve damage. Others have stopped around 7 cm.