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[DoingItForMe]

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

Depends on your definition of "doing well". Out of the patients that I've talked to, it seems like I'm the luckiest among the group, with no nerve damage, good flexibility, excellent rate of bone consolidation (not too slow/not too fast) and good probability to head to 8 cm. I'd say around 50% of the patients I know have at least one problem in that list. But nobody has a bent nail even after making mistakes. It seems like the nails can handle more than 75 lbs. Nobody is crippled or anything like that. Dr. Paley is very safe. You just might not get to your 8 cm goal, because of how cautious he is. He told me the story of someone disobeying him and continuing his lengthening even after he told him to stop. That patient ended up with a dropped foot. Then there was even a doctor who finished lengthened, went home, and thought that he could weight bear, even though Dr. Paley didn't give him the OK. He was cky, and when he took 4 steps without crutches, he broke his nails at home.

[Alu]

I see makes sense really. It's at least not as bad as it sounded originally (the whole patients and parents crying make it seem horrid) as it's a lot better to be safe then sorry; an aspect I respect greatly of Paley. I'm sort of more interested in the social and daily experiences one might have with the other patients. I do however find it funny that some seem to be stuck-up like you said they were... considering the process they're currently going through. Keep vigilant mate, it seems like you're on the fast track to a great recovery.

[Penguinn]

That's good to know. I'm surprised so many had complications though. Hopefully you keep the 'star patient' badge intact throughout.

[DoingItForMe]

I see makes sense really. It's at least not as bad as it sounded originally (the whole patients and parents crying make it seem horrid) as it's a lot better to be safe then sorry; an aspect I respect greatly of Paley. I'm sort of more interested in the social and daily experiences one might have with the other patients. I do however find it funny that some seem to be stuck-up like you said they were... considering the process they're currently going through. Keep vigilant mate, it seems like you're on the fast track to a great recovery.

the crying is because someone might have permanent toe functionality loss and will probably get to 4-5 cm at most.

You make friends with other patients and it becomes like a family. Time passes faster when you have friends to hang out with. Except if you're that stuck up kid who doesn't want to socialize with anyone. Whatever. His loss.

[Penguinn]

Except if you're that stuck up kid who doesn't want to socialize with anyone. Whatever. His loss.

That 'snob' really seems to have rustled your jimmies. Go into detail, I wanna know more.

[patientdad]

You are probably mistaking snobbishness with shyness.  He probably doesn't know how to respond.  Might even be scared. 

[DoingItForMe]

You are probably mistaking snobbishness with shyness.  He probably doesn't know how to respond.  Might even be scared.

Perhaps, but this isn't his first LL. He's already above average height, and he's going for more. When I tried to talk to him, he ignored me and even lied to me when I asked if he did his femurs already, too. It was later on that the other patients told me that he doesn't talk to anyone because he's snobbish. They told me that he likes to brag about his accomplishments by keeping a list of them on the back of his phone. He's not worth wasting more of my time talking about. My.point was to only illustrate that you will meet different types of people: self-made millionaires, patients who come from old money and parents are paying for it (mostly these), intelligent people who made it on their own and also have wealthy parents, as well as people with an arrogant attitude.

[alps]

the crying is because someone might have permanent toe functionality loss and will probably get to 4-5 cm at most.

oh nerve damage? whose fault was it?

I remember polycrates had something like this.

[DoingItForMe]

oh nerve damage? whose fault was it?

I remember polycrates had something like this.

Again, I am scared of retaliation, so I do not want to talk about other patients yet. It will be very likely that the ones with negative experiences will elaborate further and write their own diaries. But please just let me finish lengthening without pissing anyone off. Just two more weeks.

[alps]

Again, I am scared of retaliation, so I do not want to talk about other patients yet. It will be very likely that the ones with negative experiences will elaborate further and write their own diaries. But please just let me finish lengthening without pissing anyone off. Just two more weeks.

cool. you're doing us a favor already by maintaining a diary.

[DoingItForMe]

13 more days of lengthening left. Taking final measurements tomorrow morning to find out if I'm okay to go for 8 cm. PTs think I can. Measurements will tell me if I can or can't. Wish me luck.

[ouroboros]

You've come all this way......you inspire us all...
Good luck!

[DoingItForMe]

Met with Dr. Paley. Everything is going great.  I have 90 degree leg raise (increased from 65 degrees a month ago). My leg raise was 90 degree prior to surgery, so I basically am back to close to what I was before. I am at 7.1 cm after 73 days of lengthening. He suggested that I slow down to .75 mm per day to relieve the pain and make my consolidation faster. I will take his advice and slow down. It will only add 3 more days of lengthening, so I don't mind it. He said it will help me consolidate faster than the 3 days added. So I'd be better off in the long term.

I have no nerve pain or any other problems. I have a successful lengthening, and I would suggest doing a lot of PT yourself. It helped a lot to increase my flexibility. I suggest taking a lot of pain meds to make up for the pain that the extra PT causes. The other patients who don't do PT at home have nerve pain and aren't doing as well as me. But they have less pain than me. I rather have the pain and better end results. The pain meds help make it so that the pain is minimized.

[llb]

Hi DoingItForMe
Congrats on your progress!
Im undergoing limb lengthening surgery next week. Is there any value in doing  the pre-operative stretching?
Is there anything else (supplements etc) I should do?
Thanks
llb

[DoingItForMe]

Hi DoingItForMe
Congrats on your progress!
Im undergoing limb lengthening surgery next week. Is there any value in doing  the pre-operative stretching?
Is there anything else (supplements etc) I should do?
Thanks
llb

Paley said that stretching before surgery, especially only a week before surgery, will do nothing for you. But stretching after surgery is very very important. I am only doing this well because I stretched every single day, even when my body screamed at me to stop. But I will also tell you that I was very flexible prior to surgery, and that helped a lot. The muscles in my legs did the opposite, though. I hope you've been skipping leg day, because my right leg is stronger that my left leg, and it had the hardest time stretching. I wish my legs weren't so muscular going into surgery. Programdude would probably agree with me that the muscles work against the lengthening.

Get Silica supplements, which is really just calcium and vitamin D supplements. Buy some Tylenol. Get some heat pads and ice packs. I have a whole list of tips at the beginning of this diary. Read them. Good luck.

[Alu]

Perhaps, but this isn't his first LL. He's already above average height, and he's going for more. When I tried to talk to him, he ignored me and even lied to me when I asked if he did his femurs already, too.

I'd just like to point out that I just realized this is probably another guy from the old forum who's currently undergoing LL. It took me awhile but putting two and two together...yeah I'm sure it's him. lol

Anyways, good to see things are going well for you, guess things will wrap up for you on August 23rd huh?

[DoingItForMe]

The pain has gone down significantly a week after slowing down my lengthening to .75 mm a day. I would recommend this to anyone who had a lot of pain towards the end and want an easier time. Before, the pain hovered around 7-8 when off Oxycodone. Now it is a 3-5 when off Oxycodone. Nothing else changed. Still doing a lot of PT. This is looking hopeful for me as I feared that the pain would stay forever. But it appears that the pain goes away a week after you stop lengthening, according to another patient who finished.

[Penguinn]

Good to see you're doing well. How much have you lengthened so far?

[DoingItForMe]

I'm somewhere between 7.6 and 8.0 cm. I am not sure because the X-rays have a margin of error of 5%. I'm just going to keep lengthening until I see Paley again next Friday. But technically, I should have either been done already or very close to finishing. Today is my 82nd day lengthening. I'm going to be lengthening for 90 days, just to make sure that I get the full 8 cm. Paley said that the Precice 2 will automatically prevent me from lengthening further. There's no way to tell when I've hit 8 cm, but the nail will just not keep lengthening past 8 cm.

[Penguinn]

That's awesome. How do you feel being 3 inches taller?

[DoingItForMe]

That's awesome. How do you feel being 3 inches taller?

I already felt awesome at 2 inches taller; not so much at 1 inch taller. At 3 inches taller, I can officially say that I'm not short anymore and I am excited and super happy. It feels like I've been given a second chance at life. I look around and almost every girl is shorter than me. Before, they were around the same height as me and half the times taller. And for males, they are similar height as me now, so they can't call me short anymore or view me as short. A lot of the male LLs also started and ended at the same height as me. When I look at them, they look normal height now after being 3 inches taller. I might even say that they look tall due to their new proportions - long legs, short torso. So if I can view a fellow male at that height as tall, then I'm assuming that other people will view me the same. The change from 5'5"-5'6" to 5'8"-5'9" is significant in terms of the way I view myself. Will I do my tibs as well and go above average height? No. I'm not a very greedy person by nature. I just want to be viewed as an equal and not abuse this surgery as a chance to look down on others (literally).

There are other reasons why I don't want to do the surgery again. I've lost many things during this surgery. I've lost my long term girlfriend, who lost a lot of respect for me doing this surgery as well as while I was recovering/lengthening. I've lost 6 months of my free time - and possibly 8-12 months if I do my tibs. I came into the surgery thinking that I could do work during the 3 months at the hotel, or at least read a book or learn new things. But no, most of the day is either physical therapy or being high on drugs or suffering in pain. I don't recommend doing any work during those 3 months of lengthening. I'm not so sure what will happen now, now that I'm about to stop lengthening. I will report back later on that. I am still on Oxycodone, so I still don't think I can work yet. I still wake up with pain in the middle of the night. Found out last night. But I was able to go back to sleep without popping another oxy like I had to do before.

[patientdad]

Congratulations on feeling better about yourself.  It is a long, difficult process, but worth it, I think.

[Penguinn]

Good to see you're doing great. How painful would you rate the Precice process on 10?

[Alu]

Great to see things are going so good for you mate. Sure, you've had some bad things to overcome, but considering you're new outlook on life I'm sure you're gonna enjoy it greatly. So what do you now plan on doing once you're lengthening face is over? I'm sure you will go home and have to worry about consolidation, but how about activity here on the forums? I ask only because I'm sure, like I know I would, I'd like to put this completely behind me and move on never have to think about LL ever again.

[DoingItForMe]

It is worth it. I would recommend it to anyone who has ever felt height discrimination and want to feel happier knowing that it will no longer happen. It is a very painful process, and there are risks involved. I'm very lucky to not have any of those risks happen.

The lengthening part doesn't hurt at all with the precice machine. But I had a lot of muscular pain from it being stretched to its limit. My puberty also stopped a decade ago, so my body probably expecting growth. There's a teenager here who stopped taking pain medications since like the second week. So if you're young, it's not as painful as when you're older.

Consolidation turns out to be another difficult process, because you have to set your home up to be handicap accessible, which my home isn't. I had to learn to use the crutches to go up and down the stairs. There are no ramps in my house. Also at home, there is no hotel maid to take my trash out. That's probably the only thing I can't do on my own. Since I live alone, I plan on hiring a caretaker to help me with that, as well as help me buy groceries and cook some meals for me.

I will try to stay active in the forums until I can walk and run normally again. After that, I don't think you'd learn much more about process from me anymore, because I've written a lot of details already. Maybe I'll stop by again when I remove the rods.

[DoingItForMe]

I'd just like to point out that I just realized this is probably another guy from the old forum who's currently undergoing LL. It took me awhile but putting two and two together...yeah I'm sure it's him. lol

I initially thought that as well, but that user said that he was staying at Springfield and not Homewood Suites. The guy I was talking about was staying at Homewood Suites. And their heights don't match.

[DoingItForMe]

Just 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.

[Penguinn]

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

[Alu]

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

[concernedmom]

Just 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?

[DoingItForMe]

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

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.