V stressed about proposed surgery. Anyone any experience of cp surgery

[midnightblues]

My ds is 11 year old with spastic diplegia cp. The orthopaedic surgeon has recommended surgery in the form of cutting tendons in his legs, I think it is multi level gait surgery. For his achilles heels and hamstrings.

Does anyone have experience of this?

I am so scared. I have been told that afterwards, he will need intensive physio for A YEAR, and that he will be off his feet for a while.

I have heard though, that there is no guarantee of success, and that he may lose the ability to weight bear.

Thanks.

With all surgery there is always complications, and you have to be informed of them, even if the risk is minimal.

My friends son will eventually have to have this operation, to my understanding it is to lengthen tendons so perminant diformities don't occur.
The physio is to make sure the tendons dont go back to being tight, I think it mainly involves stretching, 2 or 3 times a day.

I don't have experience of it but we are going to be facing it. DS is 5 but we are already going to need the achilles done within the year.

The physio afterwards is very, very important. There is no point doing the op if it cannot be followed up by physio. Make sure that your physio's are going to provide and appropriate amount. (At least once a week, supplemented at home by you.)

There is no guarantee of success, there never is, the problem, as I understand it, is that if the child uses the stiffness to help them walk (like my DS), then if they make the tendons too loose then they can't support themselves in the same way and therefore loose the ability to weightbear.

Good luck, I've probably not told you anything you don't already know but I'm afraid it's all I know!

Thanks everyone.

It's such a difficult thing for a youngster to have to go through. I am not sure whether he would cope with the amount of physio required, he has stretches done every day after tea time, and sometimes it is quite difficult to get him to lie down and relax. And those stretches only take about 5 - 10 minutes!! He attends a special school so he does have daily physio there, and they get him walking with his frame after each lesson so he is never sitting for too long.

I just don't know.

I do think the surgery is necessary. But it's the physio that's worrying.

And the fact that, like you say, HairyMclary, he does rely on his stiffness to weight bear. The surgeon is aware of this, but even so it would be a disaster if we made the decision to go ahead, and it all went wrong and he was unable to stand. He loves moving around and walking. He never sits still!

Feel I am between a rock and a hard place, as they say.

And my dh is very very worried about the effects of the surgery. So we just can't make a decision.

What I would really like is to find someone who has had the surgery to give me some perspective.

Agh, life is hard sometimes.