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Author Topic: Questions about LL Surgery. -New Member-  (Read 11017 times)

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Watson

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Questions about LL Surgery. -New Member-
« on: December 14, 2013, 06:01:59 AM »

Hello, Forgive if I have posted in the wrong section, first time on this Forum and I don't see any post directing new-comers, but anyway. Hello.

I am currently considering Limb Lengthening surgery.
This will most likely be covered by the NHS since I am in the UK.

PLEASE NOTE. I do not have very good knowledge of any of this, I might get things wrong or I get things mixed up, im hoping by coming on here I will learn more to be able to make a decision. So please bare with me for the moment.

I am Male, 16 years of age and currently only just 4'11, my Parents are both 5'4. I would prefer to be 5'5 but 5'4 is fine.
Though I have recently been told by doctors that my growth plates have shut and that I now have no chance of naturally growing any taller.

I have been reading through this forum, finding out that they do not do both Thigh and shin bones at the same time, and also finding that people can actually seem to walk with the devices on their legs, which surprised me because I had a short chat with a doctor who said I would be in a wheelchair for 6 months if I had decided to do it, I don't know what's happening there, perhaps someone can explain that to me.

I have also found that it seems that the most safest ammount you can grow is 7cm on the Femurs/Thigh and 6cm on the Tibias/shin.
I am aiming for a full gain of 12.5cm, That is, 5 Inches to bring me to at least 5'4. Preferably 2.5 Inches each on the Thigh and Shin, I understand that they most likely will not do both parts of the legs at once and I am willing to have one done and then the other after i've healed up a bit.

I am mainly making this post because I just want someone to just go over things, I'd like someone to tell me if the height I want is even achievable, being just 4'11 is having negative impacts on my life, it depresses me greatly.


I am also worried about proportions, I don't want to look like I have insect legs that are unnaturally long, from the results i've seen so far on this site, there don't seem to be many that are too bad, but my torso is rather short.
I have created this image, I used the MS paint tutorial I found here to find what I'd look like with LL surgery to be 5'4 and 5'5 compared to my current 4'11.

Though I made it into a line drawing because I very much dislike my body at the moment.
I tried to stay as close to the outline as possible and have marked my knees and where my elbows are at.
Though the top part of my arm looks short it's not really, just im lazy and didn't continue the line and instead went straight to torso.

The purple circle is where my Belly-Button currently is, the little blue one underneath that circle is where I was thinking of trying to get my belly-button surgically moved to, in order to make my torso look more in proportion, since my legs would get considerably longer if I attempted this.

Questions in Short:
1. Do you think it would be possible for me to get the "Unilateral External Fixator (Monorail Fixator)" rather than the "Ilizarov Apparatus" if I were to attempt to go for this height? (Got names from LL Methods post).

2. If I were to go for getting 6.27cm/2.5 inches (4'11 to 5'4) on both the Thigh and Shin bones, would it be done one at a time? for example Shin bone first, then Thigh. (Of course after I had healed enough)

3. Would it be even possible? 6.27cm/2.5 inches on both parts of the leg?

4. The line-picture of me, do the taller versions look okay? not out of proportion?

5. How long do you reckon the whole process would take? From first surgery to the 5'4 Goal.

6. 5'4 is a good height for me, though I wish I could be taller, like 5'5 or 5'6, is that realistically possible or should I stick with 5'4 which would obviously be the safest, It's fine if I have to but if It were possible to be taller I would consider taking the chance.

7. I am also looking to make my arms [Just upper, since lower seems to be difficult] at least once inch longer, again just to try to get into proportion, do you think i'll need it? [Going by the image above], would it be able to be done at the same time as one of the Leg lengthening surgeries?

Thanks.
I apologise for any poorly worded scentences or anything like that, I can sometimes have trouble wording things in ways that clearly explain to others what im on about.
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Watson, miniture guy from UK.
Hoping to learn about LL in order to make a decision.

Only just reaching 4'11 at the moment.

Machine

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Re: Questions about LL Surgery. -New Member-
« Reply #1 on: December 14, 2013, 09:06:13 AM »

I'm no expert in LL ..!! but since i have already experienced it , i would like to share my knowledge on your questions ?
Let me be realistic, Limb Lengthening entirely depends upon your doctor , budget , time , hard work and  luck .

Answers:

1. It is possible to do lengthening with monorail fixator but as far as i know the complication rates are high and scars are hugh.
    i saw two patients who did lengthening with monorail fixator on femur (thigh bone) the scar were hugh and one patient's bone was
    crooked. from my side i strictly do not recommend monorail fixator . external fixater is advisable . ie; LON or LATN.

2. 6.27cm is good length on both tibia (shin bone) and femur (thigh bone) but doing both at the same time is not advisable by
   doctors. ofcourse the doctors who encourage doing both at the same time are insane.
   but you can do lengthening of one section and after 1 or 2 year when you recover fully you can the other section.
   this is the best way to do lengthening. tibia frist and then femur or vice versa.

3. from my knowledge 6.27cm on both tibia and femur are perfect and very much possible . it is safe and realistic goal.
 
4. in the picture you porpotions look ok at 5.4 or 5.5. well i did 8 cm on my tibia and i don't think till now anybody looked at my legs.
    maybe cause i m wearing a jeans, however i do not recommend 8 cm . longer recovery and s**t can happen anytime .

5. entirely depends upon your hard work and the method you are going to do , internal or external .
    ie; internal method you can recover faster if the device is weight bearing but its too costly.
        external method you don't have much movement so will take a little more time for recovery.
        its advisable to find a doctor who is expert with LL to do the surgery.

6. yeah you can go a little more then 6.27cm. its just an opinion , you can do 6.5 on tibia and 7.5 on femur but it entirely depends
    upon how much your body can take during lengtheing . So, it is advisable to do alot of streaching before,during and after surgery .

7. i didn't seen any cases of arm lengthening so far but from my knowledge arms lengthening is not advisable.
    upper arm bone is called humerus , my advise for you is after you finish your leg lengthening and when you are back to normal
    life then if u r really concerned about your arm proportions then you can think of doing humerus lengthening .

hey Watson ,
don't just entirely decide anything based upon my knowledge and experience i shared with you .
it will be very beneficial for you to do lot of research on your own .
the most important thing is to find a good doctor who is expert in Limb Lengthening .
use your brain so that your body won't suffer.
good luck

       
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Doflamingo

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Re: Questions about LL Surgery. -New Member-
« Reply #2 on: December 14, 2013, 03:10:56 PM »

Hey there
Have you tried to take a x-ray scan of your hand before? This way they can see wether your growth plates are fused or not.
When I was 16 I took a x-ray of my hand and they confirmed I won't grow any longer.
I'm 18 now and many of my friends are still growing; maybe you're still growing?
Ask your parents for this, I'm pretty sure they'll understand you.

Private story:
When I discovered that you can grow by injecting hormones I decided to take a x-ray of my hand to see ifnit's possible or not. It wasn't.... But if it was possible my mother would have paid every injection for me since the worst it can happen is that you'll die earlier (like smoking) from growth hormone.
LL on the other hand... Is one big chaos.
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Medium Drink Of Water

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Re: Questions about LL Surgery. -New Member-
« Reply #3 on: December 14, 2013, 03:29:37 PM »

1.  Yes, it's possible for you to lengthen with monorail fixators.  Those have a worse reputation than they deserve on this forum, in my opinion.  The scars from those on the shins aren't so bad, but I wouldn't use them on the thighs.  That goes for any external method.  It's a general rule of thumb that thighs should be lengthened with an internal device.

2.  You shouldn't do both shins and thighs at the same time.  Dr. Guichet, the most reputable LL doctor in the world in my opinion, has gone on record saying lengthening both simultaneously is "stupid".

3.  It's possible to get the height you want and more.  I know someone who did 8cm on shins and is now doing 10cm on thighs to go from 5'1" to 5'8".

4.  I think the 5'4 picture looks best proportion-wise.  But that's just because of the short arms.

5.  12 to 18 months.

6.  You could do more.  If I were you I'd try to get to 5'6 which would make you only one standard deviation below average height (in America at least).  But that's just me.  You decide if it's worth the additional risk.

7.  At 5'4 your arms look fine to me, but I think you'd look better with arm lengthening if you were to get taller than that.  It's a surgery that is done, but not that often so there isn't much information about it on message boards like this one.
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Watson

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Re: Questions about LL Surgery. -New Member-
« Reply #4 on: December 14, 2013, 08:15:33 PM »

Hello, Thank you for answering my questions, It certainly puts my mind at rest, knowing that 5'4 at least is a safe and realisitc goal, and even 5'5 might be possible. However I would most likely just go for 5'4 and see how I deal with it, and if I end up wanting to, I might be able to go higher, But 5'4 to me is most probably the best option.

@Medium Drink Of Water I don't think I would go for 5'6, at 5'5 my legs are already looking a little long, especially compared to my arms, I would be thinking of getting arm lenghthening but then the issue is purely with my torso, as you can see in the picture I marked where my belly button actually is and where I would preferably have it moved to, in order to make me seem more in proportion, so I reckon 5'5 is the most I could go up to.

@Doflamingo
Yes, the other week I had gone up to London to have my bones scanned and such, they confirmed I would no loger be growing anymore. I was hoping I had room to grow and would be able to get the Growth Hormone injections but as I said, there was no hope. There might have been if the doctors had listened to me a  few years ago when I mentioned I was actually a little short for my age [4'10 at 12, now 16 4'11], but according to them "You grow until you're at least 18" which was utter bulls**t, only a few months ago had they finally realised I was too short.

@Machine 1.Yes, I had a feeling that the "monorail fixator" would probably be a difficult option, I just thought I might ask about it since I like the idea of more mobility. 2.I thought that might be the case, I guess it can't be helped, it'll be fine spacing it out though, so long as in the end I get to my goal. 3.I'm glad it's a good length, was worried it might be unrealistic. 4.It's good to know the proportions look alright, though to be honest I might consider getting maybe just 1inch of lengthening done on the humerus if the doctors im with say it's safe and they're able to do it, purely because even now, I feel as though the arms [Humerus in particular] are actually a little shorter than they should be. 5.In that case I might ask for internal if it's weight bearing and they'll provide it, simply because I don't want to spend alot of time recovering if there are slightly quicker options, though since it's going to be done by the National Health Service/NHS, they'll most likely suggest the External one since as people might know, with free health care comes the cheapest option unfortunately, but i'll certainly ask about it. 6.Yeah, i'll most likely just go with 5'4 then when nearing that goal try to decide wether im okay with that or if i'll want to go higher. 7.Yeah, I'm not too sure about arm lenghtening right now, like I said they do look a little short to me at least but then I can fuss over the littlest of things, i'll think about it and question the doctors on it.

Don't worry, I'm not making any huge decisions yet, though this surgery is certianly something I want to go for. Hopefully soon I'll be getting a consultation with a LL surgeon, It'll mainly be just asking questions and such for now, an actuall decision is quite some time off, though im hoping not too long a wait.


I am however a little worried since there was a news story about a girl in the UK who had her surgery done on the National Health Service to be tall enough to become an air hostess and it says she keeps breaking her legs (In the end both her and her surgeon had had enough and put metal rods in her legs, she has not broken them since), though im sure with proper care and exercises with a good intake of calcium everything should more or less be fine right?

Just read another part, It says her Surgery was booked for January in 2000 and she stood for the first time in the middle of May 2000, Do people usually spend 5 months bed bound?

Also, just as one more question, in this particular article it mentions the doctors told her it would be possible to grow up to 3cm in a month, that's about 1 Inch, so if I were to get 2.5 inches it would take roughly 3 months.
So do you think 3cm per month is possible?

Here's the link to the Article on the 'Daily Mail', not sure how this forum is with links so hoping it works and is allowed, haha.
http://www.dailymail.co.uk/health/article-138865/I-longed-air-hostess--I-legs-stretched.html


Again, thank you all for answering my questions, it has helped me quite a bit, but again don't worry, I am doing proper research into this.
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Watson, miniture guy from UK.
Hoping to learn about LL in order to make a decision.

Only just reaching 4'11 at the moment.

Doflamingo

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Re: Questions about LL Surgery. -New Member-
« Reply #5 on: December 14, 2013, 10:59:59 PM »

What is your budget Watson?
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Watson

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Re: Questions about LL Surgery. -New Member-
« Reply #6 on: December 15, 2013, 12:54:17 AM »

What is your budget Watson?

There is no Budget, It's on the National Health Service, It's pretty much like a huge Insurance company that is paid by the goverment to provide all UK citizens with free health care, so I won't be paying anything. However they usually go with the Cheapest option that works and is safe, because they want to save on as much money as possible.

In the UK, the most commonly used methods are the Ilizarov and Taylor spatial frames. Sometimes a third type of fixator called an Orthofix® fixator is used, which consists of a strong bar attached to the leg by screws (Sounds like the "monorail fixator"). Which is mostly only used when there is not enough room to attach the Ilizarov or Taylor spatial frames.
http://www.rch.org.au/Templates/RchPbTwoCol.aspx?pageid=9835 - Image on that site, third one. (It is a site for Limb reconstruction, but it does show the Orthofix and tells it can be used for LL)
« Last Edit: December 15, 2013, 12:59:38 AM by Watson »
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Watson, miniture guy from UK.
Hoping to learn about LL in order to make a decision.

Only just reaching 4'11 at the moment.

Doflamingo

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Re: Questions about LL Surgery. -New Member-
« Reply #7 on: December 15, 2013, 02:31:41 AM »

Sorry, I dont fully understand you Watson.
You're 4'10" right? That's more then 143cm (dwarfism), therefore the surgery won't be paid by the goverment... This is the way in EU.
Why would the NHS pay it for you?
Even if you have a syndrome they won't do it because you're at a minimum height and it's not tearing you down physically does it?

But if they'll pay it for you, i think you'll probably have to do it in UK or EU, no doubt.
In Belgium they also do LL but only if you have a physically problem or you are suffering from dwarfism.
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Arche

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Re: Questions about LL Surgery. -New Member-
« Reply #8 on: December 15, 2013, 03:36:00 AM »

If it helps, my doctors told me that my bones fused at 16, at the height of 5'4".  I am now 22 and 5'6" on the dot. I grew 2 inches from 16 to 19, and now I have stopped. I have always been an athlete, so I just kept doing what I was doing, and I guess Mother Nature helped me out haha
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Medium Drink Of Water

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Re: Questions about LL Surgery. -New Member-
« Reply #9 on: December 15, 2013, 03:47:02 AM »

I am however a little worried since there was a news story about a girl in the UK who had her surgery done on the National Health Service to be tall enough to become an air hostess and it says she keeps breaking her legs (In the end both her and her surgeon had had enough and put metal rods in her legs, she has not broken them since), though im sure with proper care and exercises with a good intake of calcium everything should more or less be fine right?

Just read another part, It says her Surgery was booked for January in 2000 and she stood for the first time in the middle of May 2000, Do people usually spend 5 months bed bound?

Also, just as one more question, in this particular article it mentions the doctors told her it would be possible to grow up to 3cm in a month, that's about 1 Inch, so if I were to get 2.5 inches it would take roughly 3 months.
So do you think 3cm per month is possible?

Here's the link to the Article on the 'Daily Mail', not sure how this forum is with links so hoping it works and is allowed, haha.
http://www.dailymail.co.uk/health/article-138865/I-longed-air-hostess--I-legs-stretched.html


Again, thank you all for answering my questions, it has helped me quite a bit, but again don't worry, I am doing proper research into this.
[/quote

My legs have never broken since the surgery.  I don't know why hers would keep on breaking or what's causing it.  That's not something that happens to everyone who gets LL.

People don't stay bed-bound for 5 months usually.  Again I don't know why they wouldn't at least have stand and bear weight to lengthen the tendons and promote bone growth.

3cm a month is a millimeter a day, which is the standard unit of lengthening per day at most clinics, so yeah that sounds about right as long as everything goes smoothly (which it never seems to).  You'll probably have to stop lengthening and take a break for some reason.  I stopped a few times during my LL to stretch the tendons and/or wait for knee pain to subside a bit before continuing.
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Watson

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Re: Questions about LL Surgery. -New Member-
« Reply #10 on: December 15, 2013, 08:36:40 PM »

Sorry, I dont fully understand you Watson.
You're 4'10" right? That's more then 143cm (dwarfism), therefore the surgery won't be paid by the goverment... This is the way in EU.
Why would the NHS pay it for you?
Even if you have a syndrome they won't do it because you're at a minimum height and it's not tearing you down physically does it?

But if they'll pay it for you, i think you'll probably have to do it in UK or EU, no doubt.
In Belgium they also do LL but only if you have a physically problem or you are suffering from dwarfism.

I don't know, all I was told was that they would cover it for me, I'm not sure why myself, I was convinced the NHS would deem it as purely cosmetic, like plastic surgery, but it seems they don't.
I mean they probably wouldn't cover it if the guy was 5'4+ and only recognise their height as a problem if they're under 5'1 or something and can no longer naturally grow, but I don't know, I don't work for them.

What do you mean by "tearing you down physically"? (Sorry, didn't quite understand.)

And yeah, they would do it in the UK.
Haha as if the NHS would ship me of to another country to have it done, nah they like to do everything locally if they can, saves money plus we have our own doctors who specialise in LL so I think it'd be kinda pointless to get a different one to do it when we have them here. I don't think it's even possible to get funding for anything outside the UK on the NHS, if it is then it's very hard, but im not interested in that, having it done in the UK would be fine for me.

My legs have never broken since the surgery.  I don't know why hers would keep on breaking or what's causing it.  That's not something that happens to everyone who gets LL.

People don't stay bed-bound for 5 months usually.  Again I don't know why they wouldn't at least have stand and bear weight to lengthen the tendons and promote bone growth.

3cm a month is a millimeter a day, which is the standard unit of lengthening per day at most clinics, so yeah that sounds about right as long as everything goes smoothly (which it never seems to).  You'll probably have to stop lengthening and take a break for some reason.  I stopped a few times during my LL to stretch the tendons and/or wait for knee pain to subside a bit before continuing.

It is an old piece though, so maybe back then they might of thought they could get away with staying bed bound for that long or something, and as the disasters happened they realised it wasn't a good idea anymore.
I've found some new leaflets from the NHS purely on LL surgery and they mention that they prefer the patients to walk around as much as possible and such.

(Or maybe she went to a dodgy private doctor, I don't know.)

Glad to know 3cm a month is standard, cheers for sharing info. Ha, maybe they can do 2.5cm a month instead so it's less stress [trauma? pain?] for the leg.
Probably not though, unless they can customize what it is they turn for the lenghtening.
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Watson, miniture guy from UK.
Hoping to learn about LL in order to make a decision.

Only just reaching 4'11 at the moment.

Medium Drink Of Water

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Re: Questions about LL Surgery. -New Member-
« Reply #11 on: December 15, 2013, 08:56:52 PM »

They can customize it.  In fact, it would be quite unusual if they couldn't.
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Watson

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Re: Questions about LL Surgery. -New Member-
« Reply #12 on: December 15, 2013, 09:54:41 PM »

They can customize it.  In fact, it would be quite unusual if they couldn't.

Awesome, good to know, again cheers for sharing info.

I'll be atempting to ask if they can get me a 2.5cm a month version instead then. An Inch a month I reckon would be a good rate for me if I were to go for 2.5inches on Shin and Thighs (not at the same time, obviously) so that'd be 3 months for each lengthening process though even though it would be less stress and such than 3cm I doubt it would go smoothly, haha not with my luck, and I think I remember reading that even though the lengthening has stopped they usually keep the device on for a while longer for stability or something as it heals?

Well, anyway so far everything on this site has helped me alot and really put my mind at ease, a year ago when I was asking for growth hormones because I wanted to be taller somebody (Not a doctor or anything like that) jokingly told me I could get my legs broken and pulled apart to be taller instead and they said I'd spend a year in a wheel chair or something silly like that, Happy I found this site.
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Watson, miniture guy from UK.
Hoping to learn about LL in order to make a decision.

Only just reaching 4'11 at the moment.

Medium Drink Of Water

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Re: Questions about LL Surgery. -New Member-
« Reply #13 on: December 15, 2013, 11:03:47 PM »

It's not about different versions of the device.  You just turn the knob partway if you want to lengthen less.

Yes, the device stays on your leg until the bone is healed.  Some people get a fixed internal rod placed inside the bone so they have the devices taken off and return to a normal life sooner, but the NHS probably won't be paying for that.
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Watson

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Re: Questions about LL Surgery. -New Member-
« Reply #14 on: December 16, 2013, 12:09:21 AM »

It's not about different versions of the device.  You just turn the knob partway if you want to lengthen less.

Yes, the device stays on your leg until the bone is healed.  Some people get a fixed internal rod placed inside the bone so they have the devices taken off and return to a normal life sooner, but the NHS probably won't be paying for that.

I see, yeah that sounds easier, lol. And yeah, the NHS probably wouldn't do that, but I'll take what ever they offer me, end result would be the same after all, except for having to wait a little longer than I could but that's okay.
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Watson, miniture guy from UK.
Hoping to learn about LL in order to make a decision.

Only just reaching 4'11 at the moment.

Doflamingo

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Re: Questions about LL Surgery. -New Member-
« Reply #15 on: December 18, 2013, 12:31:21 AM »

I think you shouldn't worry too much since it UK.
You'll be fine with whatever decision they make.
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