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multi level surgery for cp

(34 Posts)
Beep Sat 29-Jan-05 08:09:38

does anyone have any experience or advice about this, considering it for ds1 (10)

Beep Sat 29-Jan-05 19:07:10

bump

lou33 Sat 29-Jan-05 19:08:08

ds2 has cp, but i am not sure what you mean by multi level surgery. Can you elaborate?

chatee Sat 29-Jan-05 19:12:40

no, i've never heard of this but am interested to learn any info regarding treatments for children with cp....

Beep Sat 29-Jan-05 19:13:22

it,s major surgery where they do multiple muscle lengthening at hip knees ankles and also correct the alignment of bones where necessary( in her case cutting and rotating the femurs and some work on one foot where she has created a false joint in the middle of it)

chatee Sat 29-Jan-05 19:14:02

whereabouts are you Beep?

Beep Sat 29-Jan-05 19:14:48

gloucestershire

lou33 Sat 29-Jan-05 19:15:07

that sounds pretty major. Is this a last resort? Surgery is the last option recommended by ds2's docs

chatee Sat 29-Jan-05 19:16:37

where would the surgery take place?is it done routinely at that hospital?

Beep Sat 29-Jan-05 19:18:07

no its aim is to improve walking ability giving a physical advantage before teenage growth spurts, it is not suitable for all cases.

Beep Sat 29-Jan-05 19:19:14

chatee, the surgery would take place at the nuffield in oxford,where are you

chatee Sat 29-Jan-05 19:21:43

my dd is only 4.5 at the moment and wears bilateral afo's and a lycra suit and walks witha k walker....she can take about 8-10 steps unaided but very wobbly.....we have been warned that surgery around 10 is a possibility depending on her progress...she was born with a dislocated left hip and has already had this corrected

lou33 Sat 29-Jan-05 19:23:29

ds is nearly 4, they have been trying to see how he manages in a walker but he doesn't . Waiting until the right time to see if botox works here.

sorry i cant help you beep, but good luck.

Beep Sat 29-Jan-05 19:30:01

whoops made a mistake its dd1 not ds1 anyway she she moderate spastic diplegia and didn,t walk til she was 3 1/2 (conductive education) she wears afos has had botox twice in her calves and once in her aducters, I think they have to be able to walk afair bit to have this surgery as we were told she wasn,t the ideal candidate but not far off. She only uses the wheelcahir now if we are walking for more than about 10 mins or so.

lou33 Sat 29-Jan-05 19:44:19

ds has the same type and severity, although he cannot stand at all wihtout support, and uses a wheelchair to get around, or else he crawls

Beep Sat 29-Jan-05 19:53:36

dd was not diagnosed til 18 months hv kept saying she couldn,t do things cos of being 8 wks prem she could by then crawl comando style just using arms physios thought she would walk by about 2 as she was quite strong but had no balance still one of her main probs

lou33 Sat 29-Jan-05 19:57:41

sounds similar to ds, he was diagnosed at about that age, then started commando crawling. His balance isnt v good either still. They first said he may walk about 3, but now we are agreed he will start school in spetember , and he isnt likely to eb walking. I reckon another year and maybe.

Beep Sat 29-Jan-05 20:04:17

we were very lucky dd went to a special school at 3 where they used a lot of conductive education and they managed to get her walking in time to start reception in mainstream primary school shes ahd a great time there,hopefully she will enjoy secondary school as much next year,i expect so shes quite extrovert

chatee Sat 29-Jan-05 20:08:01

dd is spastic diplegia too and was 7 weeks prem..official diagnosis aged 2.3 months but i knew from 18 months,very interesting to talk to you beep as i don't know anyone with an older child with cp..did your dd have support at school? any other therapy eg:swimming/horseriding/hydrotherapy/physio
we take dd swimming 2x weekly(in fact today she passed her Level 2and could have moved up but i think another 10 weeks at this level will be fine as she likes this teacher...
RDA horseriding 1x weekly(i take her out of school for 2 hoursfor this)
physio 1x fortnightly
hydrotherapy--still awaiting appointment after 2 years on the waiting list
sorry to bombard you

lou33 Sat 29-Jan-05 20:08:28

that's great

we follow bobath, and ds goes to a specialist centre once a year to have a big 2 week session. Is yours peto based?

Beep Sat 29-Jan-05 20:11:14

yes it was but that was a while back before reception now she sees the physio from the local hospital

lou33 Sat 29-Jan-05 20:14:15

diff sort of philosophy bobath and peto, the two are not v compatible, and afaik there are not any bobath schools about, in the se at least

sparklymieow Sun 30-Jan-05 21:52:58

Ds has to go to Stanmore hospital to see the surgeon soon to disuss surgery, I think this will be similar to what he will be having. He is 7. We have always said we will wait till he was older before we even thought about surgery but GOS and local hospital both have said it is now time for that step! We did manage to stop surgery for 4 years with Botox, it was first mentioned when he was just 3. But now the botox isn't working as well as at first, we have to go to the last option

lou33 Sun 30-Jan-05 21:54:24

sorry to hear that mieow

sparklymieow Sun 30-Jan-05 21:56:44

what worries me is what if it goes wrong, will he be able to walk afterwards? And is it something that has to be repeated as they grow!!

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