This is why I wouldn't recommend getting LL until it is the last resort. A lot of patients get nasty surprises after getting LL. Nobody is perfect. Doctors make mistakes, even Dr. Paley does. While I was at the Paley Institute, he broke a patient's femur at a bad angle, and that patient had to stop short of his lengthening goal because of it. Another time, a patient's rod wasn't lengthening, and he didn't find out until 2 weeks later when he went to get his x-ray. And because he didn't lengthen on one leg, his bone fused back and they had to operate on him again. This set him back 2 weeks and put him back in the hospital again. Another patient who did his tibias had nerve damage, and can't move his big toe anymore. Whether he'd recover from it or not is unknown. But for the month that I saw him before I left Florida, he wasn't able to move his big toe.
I wish more patients who had bad experiences would tell their stories, but a lot of them are too embarrassed to or fear revenge from the doctor. Since they can't speak up for themselves, I'll tell their stories and face the consequences.
The main reason why I write my experience is to let you know in great detail exactly what you're getting yourself into. I'm a bad example, though, because I've been mostly incident-free throughout the LL. I'm considered very lucky to get to 8 cm. And even though I come from a very hard working ethic, it took a lot of effort for me to do so. A lot of the other patients stopped around 7 cm because of problems here and there. One tibia patient almost had to stop at 5 cm because his bone was growing too fast. So I highly recommend that you don't do LL if you don't have to. If I had to give an estimate of the patients I saw, 4 out of 5 patients had some kind of problem at some point in their recovery, which I explained above. I was the 5th patient who didn't have a problem during lengthening among my group of 5 LL patients and the only one who got to 8 cm that I know of. However, my bone growth has been slow and I will be one of the unlucky ones who probably will not be able to walk until 8 months instead of 5 months after surgery.
Some other stories I heard regarding Paley patients while browsing these forums:
- ProgramDude broke his femur after rod removal
- Some chinese patient was too tight and wasn't able to get to 8 cm without an IT band release. But instead of $5,000, Paley tried to charge him $25,000 or something like that, because it's a separate surgery.
- Iamready had to slow down his lengthening because of tightness and pain