Cerebral Palsy
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Major Surgery or Not?

libbytlibbyt Member Posts: 26
edited June 2014 in Cerebral Palsy
I really need advice from everyone please.

My son is due to have Multi Level Surgery this Autumn and I really don't know what to do.

He is 15 but younger mentally (about 11ish) and doesn't want the surgery because he's had so much in the past and is terrified. He has had gait analysis which said "they would advise extreme caution on surgery due to his weak pelvic muscles"
I have always fought for the best for him but now don't know what the right thing to do is. My gp has said "why put him through so much pain if he'll never walk properly?"

If we do nothing he will not even be able to take his weight therefore be able to transfer.

Advice from those of you unable to transfer without a hoist etc would be much appreciated. Would you risk having major surgery in order to walk with a frame or be able to weightbare?

As an adult will he say "why didn't you make me have it done?" or "why did you put me through all that?"

I guess I'm asking for a different perspective from you. Any advice would be appreciated as I'm in turmoil at the moment as to what to do for the best.

Many thanks

Libby

Replies

  • JDWilsonJDWilson Member Posts: 90
    Samantha had multi level surgury in feb and April this year and although she is doing well ONLY 10 wks post 2nd op She is walking with Crutches after progressing from a walker. It was hard going I didnt relise how much upper body strength she needed to transfer from chair to commode etc. You say the Gait people advised against op because of pelvic weakness Where did the Surgeon come in then Our surgeon was connected with the gait team and were all for it PHYSIO was against because he thought Sam would not put the work in she needed to to benefit from the ops Think he was scared of having to do some work with her. we have had little support following the ops and have had to do everything ourselves. It has not been easy and you do need to ask lots of questions all roung GP wont see him that much and is "walking" of any kind better than none? Not even being able to stand to ajust pants from his bum? Surgeon? Why operate what will he gain? why are Gait lot saying No thought they would work together. Does it have to be done NOW? although Sam was scared she did agree she wanted to walk better feel more "normal" But it has been hard. nearly 3 months post 2nd op 1st was worse She is doing well not in a lot of pain (muscle cramps and tiredness) the operation wounds healed quickly. It is too early to say whether it has been a success or not it is a long recovery time 12-18 months we were told She is "walking" straighter and taller. I cannot and would not say whether you should or shouldn,t have the ops I am not medically trained and do not know your son. you do need answers to questions of what kind of Improvements he should get post op. This is not a Easy quick fix and does take a lot of work on your part to get your son through this If you go down op route. Would I choose this op for my daughter again? difficult I would not like to sit and watch her deteriate which is what was happening It has been hard emotionally and physically for all She coped very well and is starting to make progress So I would have to go for the op for Her. We are now moving forwards and she is making progress Physio admitted he was wrong and she stands a good chance of making good improvements. It is hard knowing what to do for the best no-one can tell you how good the improvements will be they just say everyone different. Weighing everything up i believe this was the right choice at the right time for my child. I Wish you Luck with your decision and would like to know how things go if you go ahead with the ops.
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