cerebral palsy - surgery

[elliehamster]

Hi everyone, I am new to mumsnet. I have a 13yr old son with cerebral palsy. Yesterday we met with his surgeon to finalise an operation to sort his hips out and to reduce some of his muscle / tendon tightness in his legs (he has diplegic cp).

It is femoral osteotomy and also tendon lengthening. He will be in hospital for 2 weeks and his legs will be in plaster for 6 weeks. He won't be able to weight bear for three weeks, he won't be able to go to school for the six weeks.

It is a nightmare, but without the op he won't be able to stand for much longer, he used to walk with a walker when he was younger. We are very worried about how he will cope with the op, the pain, learning to stand again etc.

Has anyone experience of this type of surgery? Much appreciated xx

Hi elliehamster and welcome to MN. You might also be interested in joining the huge CP thread on this board.

I'm sorry I haven't any personal experience of having gone through this op but just wanted to say hope it goes well x

Ditto the above re best wishes. No experience of surgery but there was a radio medical programme discussing surgery in an adolescent boy like yours, and post surgery was amazing wrt the increased mobility. Probably in for a choppy few months, but I am sure the results will be brilliant for him.

Hi Elliehamster - my son had multilevel surgery which moved his quads, lengthened his hamstrings and released the muscles in his hips. It sounds as though it may have been similar. He is also diplegic and the surgeons fear was that he was sinking and would not be able to walk if his legs tightened much more as he grew. The operation was an unqualified success for him. It took huge amounts of work after the operation and a diligent following of post op exercises and physio. the hours are intense butthe results, for us, were outstanding. We were warned repeatedly that the aftercare was crucial to the success of the surgery - by the way, once his wounds had healed his hospital used extensive hydrotherapy to help him develop his range of movement again and to help him get back on his feet. We didn't have bone work done - only tissue and as a result my son was able to recover quite quickly. That was seven years ago. Today he still walks with sticks but he is very very mobile. Painful and hard work but worth every second. My best advice is to make sure that your son is committed to the physio after the op and that you have the time to commit to help him both recover and make the optimum gain from the intervention. Good luck with the surgery!!

My son's surgery and physio therapy was done at Chelsea Westminster Hospital in London - the two lead surgeons (there were six surgeons in all and it was a 5 1/2 - 6 hours in theatre) were Alison Hulme and Stewart Evans. Linda Eve, and Deryn Watt looked after his physio post op with a team of physios duringhis stay in the hospital. Paediatric Physiotherapy at Chel/West is absolutely brilliant. First rate and committed. The team at the moment continues to be terrific.

Thanks everyone for your replies. It is so lovely to hear such success stories, it gives me hope that we are doing the right thing. I think there wasn't much choice anyway, either we see our ds deteriorate to the point of not being able to stand, or do something about it.

I am really worried about the hospital stay - how much pain was your ds in Thereitis? Did he feel overwhelmed with the surgery, or did he cope well?

My ds has moderate learning difficulties and attends a special school, the physios are fantastic and will work hard with him there. My ds copes well with physio at home, but I don't really know how he will cope with lots of physio. Trying to explain the benefits of this surgery could be tricky, but he loves being mobile, he is always busy, so we will keep telling him how much easier moving around will be if he works hard. Fortunately he loves his standing frame and trike, and works hard in hydrotherapy. He doesn't have speech, so he can get frustrated.

I will be having a meeting with the school physio next week to discuss the plan for post op, so I will have a much better idea of what it will entail.

The hospital is in the Midlands, but the surgeon is very good, we trust him but he was honest in saying that the op isn't always a success, about 90% which is such a worry. This op could weaken him so he won't ever stand up again. I know they have to tell you the risks, but it makes things so hard.

Thanks for your post SydneyS, I'm so glad the op went well for your dd. Yes, my ds has some pain too, so that is another reason for doing the op.

Thanks again x

The immediate post op pain was tough. I still remember the first couple of nights in the hospital - I slept in the ward with our DS on the first nights until a room became available. Pain management was pretty good but there were all the things you fail to predict - catheters - changing the dressings - after that it got much easier and very quickly they were giving nothing stronger than calpol for the pain. I was amazed at how quickly the wounds healed. We were in the hospital for two weeks and then at home. He wore full length velcro gators for a few weeks to help keep his legs straight and protected. We used a wheelchair for distances but the surgeons wanted him up on his feet within a week.

Thereitis, thank you for telling me about the post op, it sounds exhausting. We have been told that my ds will have an epidural for the first 72 hrs, so he won't feel any pain (or any sensation at all) in his legs. They are also planning on giving him diazepam if there are spasms after that. They didn't say what pain management would be available after the first 72 hrs, but I am very thankful for the epidural.

He used to have oral baclofen for a while, but it didn't do anything, and he isn't the right candidate for intrathecal baclofen apparently.

SydneyS, its such a relief that the surgery went well. Best wishes to you and your dd, I hope she continues to make good progress. Thank you for the info about surgeons being more cautious, that has helped me a lot, I do worry about the weakness afterwards. You know, I am starting to think a little more positively about surgery, the outcome could be good for him, he might stand nice and straight with heels down, and feel comfortable. I do hope so.