DoingItForMe's Precice 2 Internal Femurs with Dr. Paley

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Good to see you're overall doing well.
Hope the edges get rounded off soon.

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Ahh very nice. I was just about to ask how are things going. Anyways, are you still in WPB? How long do you expect the consolidation to take and what are you gonna do in the mean time? Best of luck

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Quote from: DoingItForMe on October 06, 2015, 10:58:32 AMJust stopping by to let you guys know that I've reached all 8 cm and the pain dropped drastically after the lengthening stopped. I still feel pain on my thigh muscles when I bend my knees too much, but luckily I can bend my knee past 100 degrees, so it's not a big issue. I also still feel some kind of stiffness in my thigh muscles when I wake up. I'm not sure if it's because I don't sleep with my legs straight or because of the leg exercises I do during the day. But the knee pain is completely gone. That was one of my worries in the past.

I am significantly less flexible than when I started out, but I hope to regain this flexibility over time. It's not a big deal to me if I don't, though. If I had stopped at 6-7 cm, I'd probably have much of my flexibility back by now. The last cm really made me much less flexible. Something to think about for future LL patients. Paley said that my bone growth is slow, so I'm stuffing myself with calcium and vitamin D. I'm also using an Exogen 4000+ machine to try to speed up growth. Paley said that it wouldn't help much, but it doesn't hurt to use it.
how are the scars on the femurs?

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Quote from: Alu on October 06, 2015, 02:23:08 PMAhh very nice. I was just about to ask how are things going. Anyways, are you still in WPB? How long do you expect the consolidation to take and what are you gonna do in the mean time? Best of luck

I've been home for a few days. Expectation for consolidation is 3 months according to my slow bone growth. Paley said that the fastest was a patient consolidated was 1 month. The slowest was 5 months. Most will take 2-3 months. I'll be returning to take a shot of Zometa. Paley said that he usually gives these to patients who are showing slow bone growth after a month. I asked him why wait a month, and why not just take it now so that I can consolidate faster. He said that there aren't many cons to taking it besides a high chance of fever, constipation, and nausea for a day (~40% chance) - possibly several days.  The cost of the medicine is around $1,000 (maybe $300 if you get the generic brand). I'm not sure how much it'd be with all the other fees thrown in. I'll report back when I get the final number. So with the Exogen 4000+ and the Zometa shot, I hope to cut down my consolidation period down from 3 months to 2 months. Paley said that it's a possibility that will happen if I did this. Getting a month of my life back for about $1000 and a day or two of fever is worth it in my situation. Right now, I feel like a prisoner of my own body, because I can't walk. This means that I can't do many things without much hassle, such as getting groceries, exercising, taking out the trash, or traveling. Even showering is troublesome.

So I scheduled to have the Zometa shot this week at the cancer portion of the hospital. Dr. Paley's office doesn't administer the drug. The drug is usually given to cancer patients or patients suffering from osteoporosis. If you don't know what the drug is, it's a Bisphosphonate, which is a class of drugs that stops the loss of bone mass. It doesn't stimulate bone growth - that's what the Exogen is for. But it prevents the body from breaking down bone and putting calcium in the blood stream. The goal is to prevent my body from breaking down the newly formed bone in my femurs, so that I can consolidate faster. What do you guys think of this? Do you think I should or shouldn't take the Zometa?

I'm starting to drink a lot of Vitamin D and Calcium fortified milk (40% daily calcium per cup) on top of taking the Silica bone supplements (50% daily calcium, 1000 IU vitamin D) and Vitamin D pills (50,000 IU once per week).

The scars are pretty bad. They haven't gone away and show no sign of fading except where my IT band scar is. At least they aren't hard and not a bump anymore. Paley told me that Asians seem to develop dark pigmentation in the scars more likely than non-Asians in his experience. Dr. Packer told me that they wouldn't go away for about a year. I had a scar once from about a decade ago that also was dark colored. It didn't go away for about 2-3 years. Now it's flesh colored and barely noticeable unless I point it out. Having dark leg hair helps to cover them. This is where being a male helps in terms of scars. Also it doesn't matter, because even if the scars heal, I'd get the same scars when I take the rods out in a year - minus IT band release scar and femur break point scar.

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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.

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Congrats on finishing your lengthening and good luck on consolidation!

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Quote from: Alu on October 06, 2015, 08:33:47 PMI 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.

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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.

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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.

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Quote from: bluebarbie on October 12, 2015, 04:38:52 AMHi, 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.