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[6CMFemurs]

@SuchLL: glad the nails are still moving!! How are you feeling in terms of flexibility and pain at this point. Have you been able to stand at all yet and enjoy your new 1.5 inches??

[SuchLL]

@SuchLL: glad the nails are still moving!! How are you feeling in terms of flexibility and pain at this point. Have you been able to stand at all yet and enjoy your new 1.5 inches??

I’m getting tighter but I’m still able to pull my feet upward for 20 degrees. It takes more force and time though. I don’t have any pain, except it’s painful to stretch calf muscles. The occasional nerve pain outside my left lower leg was also gone. It’s hard to stand up straight when I have to use walker and use my arms to support a lot of my body weight. My calf muscles are also getting tighter which makes it harder to keep my whole body straight. I think I won’t be able to enjoy new height until my bones are consolidated. 

[LL2022]

Awesome progress man! How long do you/Dr Paley reckon you'll need to return to walking somewhat normally unassisted?

[SuchLL]

Awesome progress man! How long do you/Dr Paley reckon you'll need to return to walking somewhat normally unassisted?

I didn’t ask but I expect it to be less than 3 months or probably 2 months since my bones are growing fast and I know I will get my flexibility and strength back really quick based on my experience last year. The downside is I’m at risk of pre consolidation lol…

[BelowTheMean]

Wow, SuchLL looks like you decided to do tibias, and w/ P2! Good luck with everything!

[SuchLL]

Wow, SuchLL looks like you decided to do tibias, and w/ P2! Good luck with everything!

Thanks! And it’s great seeing you again!

[SuchLL]

Dec 13, 2021. Lengthening day 56:
I saw doctor and took xray again today. The right nail still makes click sound while lengthening, but xray showed both nails were lengthened about the same distance. Because my right leg is shorter, and it’s still possible that the right nail was lengthened a bit less since it’s hard to tell 1mm difference from xrays, doctor allowed me to do 4 turns on the right leg every few days. I plan to do extra 2-3 turns this week on the right leg and see how I feel. Doctor was happy about my flexibility since I’m still as flexible as 12 days ago when he checked on me last time. Since I’m already at 4.1 cm and still have good flexibility, I feel I should be able to reach 6 or even 7. I just hope the nails don’t give me more trouble and the click sound doesn’t get worse.

[zaozari]

Hi SuchLL I'm interested in doing tibia lengthening in future but I heard rumors about long term or permanent knee pain associating with tibia lengthening. Can you comment on this?

That is allways a risk with nails in tibias due to place of insertion (fortunately, apparently not the case here). Only solution (also avoids sometimes huge blood loss and other issues): same old good or adapted Ilizarov external frames.

[c]

加油加油，我会好好读这本日记，谢谢你的纪录

[SuchLL]

加油加油，我会好好读这本日记，谢谢你的纪录

哈哈谢谢！

[SuchLL]

Dec 20, 2021. Lengthening day 63:
I’m at 4.7 cm today. Took xrays again and everything looks good. So far I’ve done 4 extra turns on my right leg so it’s at 4.8 cm (said on the ERC machine but it’s probably less than 4.8 cm because of the click sound). I’m so close to 5 and I’ll be at 5.8 cm at my next doctor’s appointment!

[SuchLL]

Dec 26, 2021. Lengthening day 69:
I’m at 5.1 cm today. My right nail started to click crazy since 5 days ago. I’m doing 1 extra turn on right leg everyday because I suspect the right leg wasn’t lengthened that much and I don’t want it to fall behind. By my next appointment on Dec 29, the right nail will be longer than the left by 3 mm on the ERC machine. If I don’t see the 3mm difference from xrays, it means the right nail is malfunctioning. I’m a bit down because of the crazy click sound. I know I’ve already reached 5 cm, but I still feel bad if I can’t lengthen more because of the nail. 

Also one of my incisions is infected and I’m on antibiotics again. I guess my body just doesn’t like the dissolvable stitches… Good news is the infection is already getting much better. Doctor told me to ask for different stitches when I’m back for removal surgery.

[6CMFemurs]

@SuchLL:

So only right leg is clicking? When my nails weren’t lengthening, I remember a deep grinding sound. Is distraction painful or sore after lengthening, or do you only feel soreness in left now?

[SuchLL]

@SuchLL:

So only right leg is clicking? When my nails weren’t lengthening, I remember a deep grinding sound. Is distraction painful or sore after lengthening, or do you only feel soreness in left now?

Both of my legs don’t feel sore or painful after lengthening. Ya only the right nail is clicking. I think it can be deep grinding sound too because it’s loud and doesn’t sound good. I think I know what sound you’re talking about. Last year when I reached 8 cm and couldn’t lengthen more, the nails kept making sound. It’s the same sound as what I’m hearing from the right nail so I suspect it’s malfunctioning.

[6CMFemurs]

Both of my legs don’t feel sore or painful after lengthening. Ya only the right nail is clicking. I think it can be deep grinding sound too because it’s loud and doesn’t sound good. I think I know what sound you’re talking about. Last year when I reached 8 cm and couldn’t lengthen more, the nails kept making sound. It’s the same sound as what I’m hearing from the right nail so I suspect it’s malfunctioning.

Damn that sucks. Obviously you won’t know until the next X-ray, but try to stay positive. Do you think it could be because of premature consolidation or just the lengthening mechanism of the nail giving out?

[SuchLL]

Damn that sucks. Obviously you won’t know until the next X-ray, but try to stay positive. Do you think it could be because of premature consolidation or just the lengthening mechanism of the nail giving out?

I had xrays on Dec 21 and the right nail started to click crazy the next day, so it’s not pre consolidation. I think at this point the risk of pre consolidation should be low unless I slow down lengthening. I will try to stay positive thanks bro

[hello321]

congrats on the 5 cm. 5 cm are great; nail damage and complications are dangerous.

[ilovescience]

congrats on the 5 cm. 5 cm are great; nail damage and complications are dangerous.

5cm hardly caused any complications I think.

[hello321]

i think over 5cm is pretty dangerous.

[SuchLL]

congrats on the 5 cm. 5 cm are great; nail damage and complications are dangerous.

So far I don’t have any complications expect numbness which is very common and not a concern. I have no pain at all and I’m still flexible enough to continue lengthening, so it’s disappointing if I have to stop because of the nail… But you are right 5 cm is great and I should stay positive. Thanks!

[silverlining]

nail clicking is not pre-consolidation. The sign of pre-consolidation is severe pain when lengthening with the ERC device according to my surgeon.

Also congrats on reaching 5 cm!

[SuchLL]

Dec 29, 2021. Lengthening day 72:
I took xrays today and both nails had the same length. The right nail was supposed to be longer than the left by 3mm, but they didn’t see the 3mm difference from xrays, which meant the right nail was lengthening less. The good news is at least it’s still lengthening. Today I saw Dr Miller because Dr Robbins was on a honeymoon. My physiotherapist never heard of Dr Miller either. She’s probably new because she’s not even listed on Paley’s website. She examined my ankles and said they were too tight and she couldn’t even get them to neutral. I felt she only gave a gentle push to my feet so I showed her I could easily get to 10 degrees by pulling my feet using strap. She still wanted me to slow down from 0.75 mm to 0.5 mm, and said I was not at risk of pre consolidation now. I knew it didn’t hurt to slow down but I wasn’t convinced because I could easily get my ankles to 10 degrees with strap, and could even do better if I had time to stretch my legs for 1-2 mins. (Unfortunately I didn’t stretch before seeing doctor today). Later she asked opinion from Dr Paley and he agreed with slowing down. I was already at 5.3 cm so they probably just wanted me to do it as safely as possible. I will slow down to 0.5 mm until next appointment.

[hello321]

did he mention the risks of developing complications, ballerina foot, or other stuff over 5cm? I am thinking of doing it but am not willing to trade off my health; will make a consultation with him to address these concerns.

[SuchLL]

did he mention the risks of developing complications, ballerina foot, or other stuff over 5cm? I am thinking of doing it but am not willing to trade off my health; will make a consultation with him to address these concerns.

I’m not worried about complications since they already examined my legs and allowed me to keep lengthening. They are monitoring my legs weekly. It’s true most people were stopped at 5 cm or even 4 cm at Paley’s institute, but everyone is different. I agree it’s best to speak to the doctor to address any concerns.

[truebeliever]

Hi SuchLL thank you very much for doing this detailed diary of your lengthening, as someone hoping to do two segment lengthening with Dr Paley in the near future this is very helpful. I can't wait to read your future posts 

[SuchLL]

Jan 5, 2022. Lengthening day 79:
I’m at 5.7 cm today. Dr Robbins examined my legs and wanted me to stop lengthening for a week. Unfortunately my lower legs were getting tight exponentially. Getting to 6.5 cm isn’t as easy as I thought with the precice nails. (should be easier with stryde nails since stryde patients can just stand all day to stretch). He also stopped another femur patient who was at 5 cm for a week. I think they are extra cautious right now since they just operated on two patients who lengthened too much to fix complications. My initial goal was only 5 cm so 5.7 cm is already great.

[6CMFemurs]

Jan 5, 2022. Lengthening day 79:
I’m at 5.7 cm today. Dr Robbins examined my legs and wanted me to stop lengthening for a week. Unfortunately my lower legs were getting tight exponentially. Getting to 6.5 cm isn’t as easy as I thought with the precice nails. (should be easier with stryde nails since stryde patients can just stand all day to stretch). He also stopped another femur patient who was at 5 cm for a week. I think they are extra cautious right now since they just operated on two patients who lengthened too much to fix complications. My initial goal was only 5 cm so 5.7 cm is already great.

Sorry to hear you are getting so tight, but in the grand scheme of things a week off might not be the worst thing and you have time to improve flexibility and heal a little. Do you know if they offer Botox as a treatment to temporarily weaken the muscle, so you can get a little more stretch?

[SuchLL]

Sorry to hear you are getting so tight, but in the grand scheme of things a week off might not be the worst thing and you have time to improve flexibility and heal a little. Do you know if they offer Botox as a treatment to temporarily weaken the muscle, so you can get a little more stretch?

I’ve never heard of Botox as treatment so I didn’t ask. Another reason I got tight so quickly was that I overstretched and hurt both legs. It became more painful to stretch so I couldn’t stretch that hard.

[SuchLL]

Jan 12, 2022. Lengthening day 86:
I saw doctor today and unfortunately I can’t resume lengthening. Doctor said I was more flexible than last week and he’s happy with my improvement, but I’m still not flexible enough to resume lengthening. He told me to add 2 mm to my right leg because the left leg is longer. My right leg will be 5.9 cm which is a little bit closer to the 6.5 cm ultimate goal. Since I’ll lengthen the right leg in the next few days, doctor told me to come back next week and he would examine my legs again to see if I can resume lengthening. I decided to just stay here for an extra month. The weather is very nice here but I never got chance to enjoy it. I will go to the beach, parks, Disney… etc if I stop lengthening.

[LeftHolding]

Not sure if you answered this already, but what do you do for a living to be able to pay for these surgeries at 26? I am a 25 yr old pharmacy student and would love to be able to have this done one day.

[SuchLL]

Not sure if you answered this already, but what do you do for a living to be able to pay for these surgeries at 26? I am a 25 yr old pharmacy student and would love to be able to have this done one day.

I’m a software engineer. Hope you save enough money and be able to have the surgery one day!