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BLU!!!!!!!!

16 replies

Potty1 · 08/11/2005 23:17

Blu - I wonder, do you know anyone who has had epiphysiodesis (growth plate arrest surgery?) We had dd's ortho review today and he wants her in next week! Although it's been on the cards for some time now I'm a bit shell-shocked that it's suddenly here and I'd love to get in touch with someone who's had it done.

Dd was 'up for it' but now it's here has gone into panic mode (her and me both!). She's actually wavering a bit in her resolve and as it pretty much her decision I'm a bit concerned she's going to pull out. Need a positive story..........

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Potty1 · 09/11/2005 08:04

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blueteddy · 09/11/2005 16:18

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Blu · 09/11/2005 16:26

Potty - SO sorry I missed this. Yes, i can see that when it becomes a reality, it all seesm so much more in your face.

I don't know anyone who has had it done, though they have mentioned it as a future possibility for DS, as you know.

Do you use the STEPS website? I am sure I have seen positive sories about this there, either in the talk threads - or maybe there is a case study?

I'll have a look for you......

Oh, love to you and DD....you must have had a bit of a lurch.

ggglimpopo · 09/11/2005 16:30

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ggglimpopo · 09/11/2005 16:35

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Blu · 09/11/2005 16:37

HAS SHE? I would love to know more.

DS will have an Ilizarov for bone lengthening, but the procedure Potty talks about is often done as a complementary measure - they stop the growth plate in the longer leg growing as a way of evening out leg length.

Potty - I have taken the liberty of starting a thread under health specifically asking for experience of epiphysiodesis. Hope that is ok - and gets some responses.

Potty1 · 09/11/2005 17:03

Thanks for doing the other post Blu. I was in such a rush this morning but did manage to put a couple of posts on the STEPS forum (think it's the right one). It's a bit calmer here this evening, dd seems to be getting her head around it all so it seems we'll be going ahead. Pre-op Wednesday for surgery on Thursday.

I must say that I'm thankful to be avoiding the full leg lengthening procedure - she shouldn't be off her feet for too long.

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ggglimpopo · 09/11/2005 17:05

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Potty1 · 09/11/2005 17:08

She's 12 ggg.

I think it hit her hard because she's had to countersign her own consent form and he explained everything to her in great detail. She realises that this really is her decision to make.

I've put her through surgery before (open heart and minor procedures) but never really had to cope with her emotions about it all before. It's quite tough.

How old is you dd - and is she 'levelled' up now?

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ggglimpopo · 09/11/2005 17:31

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ggglimpopo · 09/11/2005 17:32

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ggglimpopo · 09/11/2005 17:37

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Potty1 · 09/11/2005 17:43

I would say she's just on the verge of puberty ggg. Not quite rebellious just yet Has worn her raises without too much of a battle but still suffers back and hip pain. She knows she has to have this surgery to have a chance of being free of it.

I agree with you about the raises. There is a guy locally who does all the high tech stuff (in the private sector) but you're looking at £300 just for the assessment. Things have improved in the 10 years dd has had them but standing on wooden blocks to assess LLD is a bit stoneage isn't it? She's been having regular CT's since going down the road of this surgery.

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knowabitaboutthis · 11/11/2005 20:28

actually, standing on blocks is one of the more accurate ways of assessing how much raise is needed, but the high-tech stuff can fine-tune things so that they feel more comfortable and perform better!

As for epiphyseodesis, well don't know what I can say that will make your dd feel better about it. As far as leg length equalisation goes, it is by far the safest and simplest way of getting the difference reduced, and if things go to plan, the legs should end up the same length.

Scarring is minimal (far less than lengthening the short leg), pain is also minimal; as the bone is not broken, as in lengthening, and complications, although they do occur sometimes, are not disastrous.

If she does pull out, it's not the end of the world- if it was done a little later, the amount gained would be less, but possibly still enough to remove the need for raises. If left till maturity, it is still possible to shorten the long leg- but it does involve removing a chunk of bone . That is probably an argument if favour of getting on with it .

How about putting some money aside in a savings account for her to buy a really fantastic pair of shoes or boots when the leg length has evened out?

Potty1 · 11/11/2005 23:09

Ah! thanks for your post. Having slept on it for a couple of nights we are now having chats along the lines of 'when' and not 'if' so it looks like its on. This really is the one and only chance for dd as she has some fairly major heart issues so considering the risk of GA, infection and poor circulation it's this lesser op or no op.

Good idea about the new shoes though, thanks

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Blu · 12/11/2005 09:42

Thinking of you Potty. This can't be easy for you or DD, but I'm glad she's coming round to the idea.

The shoes certainly sound a good idea!
Will be thinking of you this week.

Have you ever looked at an American site called limbdifferences.org? It is a v busy site, generally, so there ma be some experiences there.

Good luck.

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