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Original poster

This is it, surgery time!! :(

72 replies

SparklyGothKat · 16/05/2006 14:26

Just got home from GOS with DS. The botox didn;t have the effect we hope for, though he is doing well. We now are being referred for tests as to his suitablity for surgery. It will be mutli-level surgery, with his hips, knees and ankle muscles and tenons all being released. It will be a 12-18 months rehabilation period afterwards. :(:( always knew this would happen at some point, its just come too fast for my liking!

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Original poster
SparklyGothKat · 16/05/2006 14:43

anyone have any experience of this sort of surgery??

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PinkKerPlink · 16/05/2006 14:49

Not for one of mychildren but I do know of other children who have had it done with good results:)

you must be worried. Hopefully the surgeons will put you mind at rest. How does ds feel about it?

Original poster
SparklyGothKat · 16/05/2006 14:51

I am worried, Dh is petified. DS doesn't understand yet, but we will be sitting down him tonight to discuss it all

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Original poster
SparklyGothKat · 16/05/2006 14:57

And they said that DS's leg length difference is a 'real' length with his lower left bone being shorter than the right, before it was thought that it was just the way he walk.

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Socci · 16/05/2006 14:57

This reply has been deleted

Message withdrawn at poster's request.

2shoes · 16/05/2006 15:25

my friends ds has just had his tendons done he is 14 and has cp. sorry what is you ds's age and DX(wondering is I know someone I could put you in touch with

dinosaure · 16/05/2006 15:42

Aw, Sparkly, best wishes to you and your DS. DS2 had minor tendon surgery for talipes when he was a baby, nothing like your DSs though so no relevant experience here, I'm afraid.

Original poster
SparklyGothKat · 16/05/2006 15:46

He is 8 and has CP

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Saggarmakersbottomknocker · 16/05/2006 15:48

Sparkly - there was someone at the beginning of the year whose child had something similar.....beep (? maybe) Had some bones rotated too I think. Think it was her dd who is about 11.

Will have a search.

coppertop · 16/05/2006 15:51

No experience but just wanted to wish you and ds the best of luck. xx

Saggarmakersbottomknocker · 16/05/2006 15:56

\link{http://mumsnet.com/Talk?topicid=1373&threadid=139348&stamp=060206224546\Here} you go Sparkly - there was definitely a later thread too but I can't find it.

Sounds maybe a bit more extensive surgery than your ds will have. Here's hoping.

Bozza · 16/05/2006 15:57

Like coppertop wishing you and DS good luck.

beep · 16/05/2006 17:36

dd1 had multi level surgery in feb this year,where will it be done ?we went to the Nuffield Orthopedic Centre in Oxford.Got to go and cook Tea I will be back later

Original poster
SparklyGothKat · 16/05/2006 17:59

It will be with Miss Eastwood at GOS. How did it go Beep?? Is your DD doing ok? How long was the plaster on for?? How is she doing school-wise? Did she miss much school? Sorry so many questions going through my mind...

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beep · 16/05/2006 18:24

It went well,she had below knee plasters for about 8-9 weeks all together and wore gaiters for several weeks and now wears them at night.She has just gone back to school this week (hooray),We did some work at home but I found it very hard to fit around physio etc.How old will ds be when he has it will he be juniors or seniors,Mis in year 7 Ithink she would have got back earlier if she had been at junior schooland stillhad her old helpers as she doesn't really like her new ones.It has been pretty hellish at times and not as bad as I thought it would be at others,it certainly is hard work.She has to sleep in our front room as she cant do stairs yet.In fact today is a big day for us as i managed to get her into our bathroom for the first time.It is downstairs but you have to gothrough the kitchen to get to it and it is too small gap to get her through.Now she can bend her knees a bit more I can take her out of the frech doors and in through the back door,It is such a relief as i have been taking her to a special playground 5 miles away twice a week for a shower.It was a real drag.sorry this is long and rambling but if there are any other questions please ask.

Original poster
SparklyGothKat · 16/05/2006 18:27

They said while he is in juniors. how has she handle it all?? Is she ok??

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Original poster
SparklyGothKat · 16/05/2006 18:34

They said it will also be his hips so I guess he will be full leg plasters, that will be fun...

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MABS · 16/05/2006 18:43

oh babe, so sorry. why do they think the botox didn't help? we have a consult about botox and/or surgery next month for ds.

Original poster
SparklyGothKat · 16/05/2006 18:52

this was his 5th lot of Botox, it worked great the frist few times, but the last 2 times its not worked as well.

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MABS · 16/05/2006 18:54

really feel for you xx

beep · 16/05/2006 19:08

here are some of the\link{http://www.pixum.co.uk/members/libbicool/?act=a_view&album=2044364&st=1&sid=r4wz5d1c0beedc1cb778e52cabd0cc0e&sid=r4wz5d1c0beedc1cb778e52cabd0cc0e\Photos}from the first 2 weeks of her stay,she was fine about having the operation did not seem at all nervous,though did let on afterwards to having butterflies on the actual day.don' think she would be quite so keen another time !

Original poster
SparklyGothKat · 16/05/2006 22:06

Thanks Beep, your daughter is beautiful. I am so worried about the GA. He had a GA in march for the Botox (as it had to go deep into his hips muscles) but it was only 1/2 hour, How long was she in the theatre??

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Original poster
SparklyGothKat · 16/05/2006 22:12

How long was she in hospital for??

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Thomcat · 16/05/2006 22:24

Ohhh blimey, how daunting for you. It'll all be ok and well worth it, but all the same, must be horrid in the meantime. You just gotta think of the bigger picture and fast forward your mind to 18 months after the surgery. We're all here in the meantime.

Original poster
SparklyGothKat · 16/05/2006 22:37

thanks TC, I know you are talking sense. Even if the surgeon decides NOT to operate this year, it will happen in the next 2 years, its the not knowing exactly whats going to happen..

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