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[Sammieglitterbug]

Hello, please can anyone advise, I’ve just discovered this forum which looks really helpful. My daughter is 18 years old and was diagnosed a few years ago with possible Beckwith Weidemann syndrome, she is a lovely 5ft 9” but has one leg that’s 4.5cm longer than the other. This has more recently been  causing her to experience more back and leg pain. The consultant here in the UK suggested we wait until she finishes school for her to have surgery and to have it done before she goes to university, she finishes school this year. The surgery that was recommended to us was breaking her leg and putting her leg in one of this cages and she would tighten the screws (I’m sure there’s a more technical name, please forgive the Simplicity) which would then allow her leg to lengthen over time, this would then need to be repeated and the same surgery done again, taking approximately 2 years before it was completed. Leaving lots of scarring. My daughter has always been opposed to this surgery but her pain is increasing and she is aware that something must be done. Please can anyone advise? We would be happy to travel for the right treatment. I Would love for my daughter to be pain free and happy. Thank you in advance.

[LongueEpopée]

Hello,
Firstly I think it would be helpful to know with bone is to be lengthen ? Femur or tibia ? Femur is easier to lengthen.
The cage you're talking about (external fixators) is probably not the best method since as you said, it requires many month and scars.
Instead I think you should consider an implantable nail (like "precice") which is a nail that goes into the bone, leaving less scars and is lengthened using an external remote
4.5 cm can be done in about 3 month I think

maybe this can help :
https://www.nuvasive.com/surgeon-locator/#service-limb-lengthening-precice

[Bob]

Hello,

Maybe this site will be interesting for you to read - Good luck: http://limblengthening.com/

[Sammieglitterbug]

Thank you so much! This sounds a much better alternative, I haven’t got the consultants notes on me but I will find out which bone it is as I can’t remember which one it is. I will look into it and fingers crossed it will help.  Can this kind of surgery be done with both of those bones?Thank you for your advice, it’s reallt helpful.

[Petite888]

Hi Sammie,

I am also new to the forum, but I believe they have version of precice for both the femur and tibia.  I agree with LongueEpopee that precice would seem like the best option for your daughter.  Can I ask what country you are in as availability is not in every country I believe, so you may need to travel abroad in order to get her the best method.  Also the Precice version 3 is now out which is supposed to be stronger than the previous version, meaning that she may be able to walk on it as soon as 3 weeks after surgery.

As I said I am a LL newbie, and this is my opinion after weeks of reading other's posts on this forum, so please do re-check with the veteran members as they would be far more knowledgabe than me.

[Sammieglitterbug]

Thank you so much petite888, I will have a look into that new one too. I’m in the UK, this help is so appreciated, I’ve been feeling a little lost with what to do for the best.

[Petite888]

I believe that Precice is available on the NHS, possibly only in certain areas, or with certain specialists, but I believe definitely worth pushing for when the time comes.  The difference between night and day when it comes to externals and Precice or Fitbone.

[Petite888]

http://www.ianbacarese-hamilton.co.uk/taller-ian-bacarese-hamilton.html

The above link is a consultant who uses Precice in london. I don’t know if this is anywhere near you but maybe you could ask your doc to refer you to him?  Download the PDF file and read through. It’s tailored towards cosmetic limb lengthening patients but will give you a good idea of what to expect.

All the best, and wishing you lots of luck!

[Sammieglitterbug]

Aww wow! Amazing! Thank you so much, I will look into that, that’s really kind of you. 😊

[Android]

Hey Sammie,

Here's an overview of the surgery and a comparison of external and internal fixators.

To summarize, Precice is definitely a great option if scars are a concern. You still haven't answered, but there are variants for both femurs and tibias. Having external frames can be cumbersome and stigmatizing even if only on one leg, especially if it's the femur (much more tolerable on the tibia).

Just keep in mind that the added benefits of the Precice will make it cost much more. However, since your daughter is against the surgery in the first place, perhaps it's best to make the experience smooth as possible with internals.

Hopefully her diagnosis will allow insurance to pick up the bill, as it shouldn't be considered cosmetic.

[myloginacct]

Hey, Sammie. Please discuss everything you learn from here with your main doctor(s) over there in the UK before you two make any final decision.

Just my 2 cents. All the best.

[olivine]

Hello! I've had my right leg lengthened 12cm over 2 different times using external fixators so if you have any questions about that let me know! I've been told having it done internally (precise nail) is less painful because you don't have pins going through muscle and tissue, which makes lengthening the leg less painful (they weren't an option for me before because of a combination of my bones being too thin and the surgery being quite new I think)

[myloginacct]

Hello! I've had my right leg lengthened 12cm over 2 different times using external fixators so if you have any questions about that let me know! I've been told having it done internally (precise nail) is less painful because you don't have pins going through muscle and tissue, which makes lengthening the leg less painful (they weren't an option for me before because of a combination of my bones being too thin and the surgery being quite new I think)

How long has it been since you've did limb lengthening? How are you doing nowadays?

[olivine]

I had one done when I was 5 and the other when I was 11 and am now 19. A year after the surgery when I was 11 I did manage to participate in a 5km run (as in it was part of a marathon but I did the 5km race) so running and sports is possible. I do still have issues with pain but that's not necessarily from lengthening since leg length difference wasn't the only problem I had and I've had other surgeries since. Biggest problem I initially had after was probably just building up strength again in my leg.