Yes, a while ago. And the news isn't great. My right leg is healed up and Paley said it was ready to remove the rod. But my left leg still hasn't healed fully and it's been two years since the surgery. Paley told me that I should do another surgery to remove the rods and insert fixed stainless steel rods instead. He said that I could keep the stainless steel rods in forever or remove them later on. He said that I shouldn't keep the precice nails in for more than 2-3 years because it is made of titanium and that the metal might flake off and enter my blood stream over time as it keeps rubbing against each other. And that if that happens, it might cause tumors.
The gap in my left leg has decreased from 2-3 inches to about 1-2 inches after one year. At this rate, I don't think it will fully heal until the second half of 2018. He also offered a second option, which is to remove a set of screws to make my leg not rely on the rods. He said that adding pressure to my bones will cause it to want to grow faster.
DoingItForMe's Precice 2 Internal Femurs with Dr. Paley
Hi DoingItForMe. I think 2 years is too long for total consolidation. I haven't read your diary completely but do you still have a limp? Maybe you can show us the x-rays? I think the steel rods are a good option but do know that doctors make them "stick out" of the bone a little and this can disturb/irritate soft tissues, so you might end up with minor pain around the hips if you do not remove it.
How old are you? Do you smoke? Are you being active/going to the gym? Have you tried medication (risidronate, vitamin D+ calcium, HGH, etc)? Have you tried bone stimulators?
Hopefully, these questions don't bother you but I think they are important.
Quote from: LLSouthAmerica on July 18, 2017, 07:22:00 PMHi DoingItForMe. I think 2 years is too long for total consolidation. I haven't read your diary completely but do you still have a limp? Maybe you can show us the x-rays? I think the steel rods are a good option but do know that doctors make them "stick out" of the bone a little and this can disturb/irritate soft tissues, so you might end up with minor pain around the hips if you do not remove it.
How old are you? Do you smoke? Are you being active/going to the gym? Have you tried medication (risidronate, vitamin D+ calcium, HGH, etc)? Have you tried bone stimulators?
Hopefully, these questions don't bother you but I think they are important.
I still have a limp, but I think the screws of the precice nails are sticking out of the femur head and causing me to me limp, because it is irritating my soft tissues when I walk. But the limp is less noticeable now I think. I'm starting to run more normally as well. Before my run is kind of weird. What helped was that I started running again at the gym a few miles a day. Ultimately I do want to remove the rods so that I can walk normally again hopefully. I'm still not comfortable posting my x-rays. I can describe them if you want, but I don't think it's necessary to post them.
Yes, my case doesn't seem normal. The gap should have been smaller faster. Noticed that the other Paley patients I was with had faster consolidation. They lengthened less (7 cm), but I doubt that had an effect, since even if the gap was 7 cm instead of 8 cm, it still wouldn't have connected by now.
I'm in my late 20s/early 30s. I don't smoke. Never have. I wasn't active in the gym during consolidation phase (i.e. still in crutches), and yet that was around the time I had the most growth. Problem was that all that growth on my femur was on the inner side of my leg. There was barely any growth on the outer side of my legs. I was active in the gym after I was able to walk again, though. I swam a lot throughout.
I'm only taking Vitamin D and Calcium right now. Before that I was taking the bone supplements that Paley recommended. It was basically Calcium, Magnesium, Silicone and some other stuff. I didn't take any HGH or anything else.
I have been using bone simulators. Been using Exogen 4000+. I stopped when I realized that the growth doesn't seem affected by it at all. Confirmed this after I stopped using it for half a year, and the growth was the same rate. Might start using it just for the hell of it, since I paid hundreds of dollars for the two units. The first unit ran out of batteries after 200 uses, so did the second one, but I replaced it with a new $40 battery bought online and now it's at 400 uses and still running.
Maybe some of each of those things had a small effect on bone growth, but I think Paley is right when he says that putting pressure on the bones will stimulate bone growth faster. I suspect this because all the growth is on one side of my femur. And it happens to be on the same inner thigh area of both femurs. So I suspect that the weight of my body is relying more on the inner side of my femur than the outer side for both my legs and that's why all the growth is there. And my right leg, which is the more dominant leg, consolidated faster, too. So that further proves my theory.
So my advice for those doing LL is to try to put more weight onto your bones as early as possible - meaning that even during lengthening and consolidation, you should be standing often.
HI DFM, do you think or there is any evidence that if you would stopped at 5cm or less you should not have any of this problem?. There are little info about that but from what I read from different patients all talk about the threshold of 5cm for safe and little complications or no complications.
I would appreciate your thoughs
My bone growth is just slow. 5 cm would mean that my gap would be connected by now. But only because the gap is smaller and easier to reach. But the speed of growth would probably be the same.
Quote from: DoingItForMe on July 18, 2017, 08:47:14 PMI still have a limp, but I think the screws of the precice nails are sticking out of the femur head and causing me to me limp, because it is irritating my soft tissues when I walk. But the limp is less noticeable now I think. I'm starting to run more normally as well. Before my run is kind of weird. What helped was that I started running again at the gym a few miles a day. Ultimately I do want to remove the rods so that I can walk normally again hopefully. I'm still not comfortable posting my x-rays. I can describe them if you want, but I don't think it's necessary to post them.
Yes, my case doesn't seem normal. The gap should have been smaller faster. Noticed that the other Paley patients I was with had faster consolidation. They lengthened less (7 cm), but I doubt that had an effect, since even if the gap was 7 cm instead of 8 cm, it still wouldn't have connected by now.
I'm in my late 20s/early 30s. I don't smoke. Never have. I wasn't active in the gym during consolidation phase (i.e. still in crutches), and yet that was around the time I had the most growth. Problem was that all that growth on my femur was on the inner side of my leg. There was barely any growth on the outer side of my legs. I was active in the gym after I was able to walk again, though. I swam a lot throughout.
I'm only taking Vitamin D and Calcium right now. Before that I was taking the bone supplements that Paley recommended. It was basically Calcium, Magnesium, Silicone and some other stuff. I didn't take any HGH or anything else.
I have been using bone simulators. Been using Exogen 4000+. I stopped when I realized that the growth doesn't seem affected by it at all. Confirmed this after I stopped using it for half a year, and the growth was the same rate. Might start using it just for the hell of it, since I paid hundreds of dollars for the two units. The first unit ran out of batteries after 200 uses, so did the second one, but I replaced it with a new $40 battery bought online and now it's at 400 uses and still running.
Maybe some of each of those things had a small effect on bone growth, but I think Paley is right when he says that putting pressure on the bones will stimulate bone growth faster. I suspect this because all the growth is on one side of my femur. And it happens to be on the same inner thigh area of both femurs. So I suspect that the weight of my body is relying more on the inner side of my femur than the outer side for both my legs and that's why all the growth is there. And my right leg, which is the more dominant leg, consolidated faster, too. So that further proves my theory.
So my advice for those doing LL is to try to put more weight onto your bones as early as possible - meaning that even during lengthening and consolidation, you should be standing often.
Don't worry if you don't feel comfortable posting them; describing them would be of no help. It's interesting because a lot of people have different types of callus formation. I've read plenty of evidence that says that biphosphonates are of help in the development of callus and can make it bigger. Although besides Dr. Guichet, I don't know of any doctor who prescribes biphosphonates. On the other hand, no other doctor but Paley recommends bone stimulators like exogen which in their web page its company claims that it can help in 80% of non-unions.
Also Precise is partial weight bearing, so unlike the albizzia nail I used, you should rely more on your bone than in the nail. You don't have any other risks factors. Sometimes I guess it's just luck. I'm sorry that after all this time you are still having some trouble. I wish you the best. You still have plenty of options you haven't go through with yet!
Paley did recommend a biphosphonate for my situation. We knew early on that my bone growth was slow. I believe it was $1000 to get one. Paley said that it would probably reduce my consolidation time by about a month. I opted out, though, because I became weight bearing sooner than expected. I wrote about this earlier in this thread sometime during my consolidation phase in late 2015.
DIFM, you're not alone. I had a limp for a while too, definitely due to femur screw near the hip. It was only on my left side, so I had the screw removed, but left the rod in as that leg wasn't entirely healed yet (should be now). My right the bone is 100% healed, and since that's the side where I have the recurring knee pain (although my better and more rare these days, thankfully)...I think this winter I'm going to take out the right rod and see how I do. Maybe I'll do both, I don't know, I have to see.
What you're experiencing is certain muscles (glute medius) not activating properly because your body tries to avoid the pain caused by the screw near the hip area. Once you get that taken out and get back to squatting/deadlifting like I have, your walking will normalize and you'll get your ass back (my ass has actually never looked better lol, I can deadlift around 400 lbs now).
someone knows why Dr paley does not respond emails?
Quote from: deniscef on July 28, 2017, 05:31:55 PMsomeone knows why Dr paley does not respond emails?
Most likely he receives hundreds of LL questions and has no time to reply them, as most of them will never do the surgery with him and are only "researching"
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