Hi
I have spd cp, I had multi level surgery at 13, I'm now 24.
Before the surgery my left leg (which is the worse) turned in quite severely, I had extremely tight hamstrings and calf muscles which made me walk slightly crouched, although I have always walked independently with the aid of splints and/ or piedro boots since about aged 3.
The surgery took about 6-8 hours, During which the surgeons broke, rotated and pinned my left hip so the my leg no longer turned in, they lengthened the adductor muscles on the left so there was less inward pull, I had muscles transferred and my right leg stapled on the growth plate to even out my leg length. they also lengthened both sets of calf muscles.
After the surgery my legs were in plaster from the toes to just below my knees, then kept straight with leg gaiters, that I had to wear 24 hours a day (except for physio) for the first few weeks, I also had to stay in bed for about two weeks. I was in hospital for about 6 weeks, Having an hour of physio everyday.
When I had the casts taken off, I had lots of intensive physio, (twice a day with school nurse/ parents etc and once a week intensive with my physio) I also had hydrotherapy every fortnight.
I was given GRO (ground reaction orthosis) splints that are very similar to AFO's with a plate at the front of the leg going over the knee to force it straight, and leg gaiters to wear over night, and to do standing excercises.

I have always been very active, I cycle swim and horse ride among lots of other activities, as I became more mobile after the surgery I went back to doing these activities, starting with swimming, then horse riding as they are both great forms of physio.
My walking has improved alot and I tend to use a lot less energy, however I wouldn't say the surgery is in any way a miracle cure (particularly as everyone with CP is different). It took alot of hard work and physio to get the best results from the surgery.
hope this helps
chris.

I have Spastic Diplegic CP and have had 5 ops on both feet. The surgery i have had had are:

Right foot:
Achillies Tendon Lengthening (x2)
Tibialis Anterior tendon Transfer
Dwyer's Osteotomy

Left foot:
Achillies Tendon Lengthening
Tibialis Posterior tendon Transfer (revised November last year)
FDL & FHL reconstruction & Transfer
Dorsifelexion Osteotomy of 1st Metertarsal
Resection of Peronoius Longus (Muscle cut from tendon that was pulling my foot out)

I have also had Botox injections in left leg. All the ops apart from the first one were carried out at my regional orthopaedic centre in Bristol.

The surgery on my right foot worked well and helped to stabilise my foot that was rolling over onto the outside of the foot.

The surgery that i had done on my left foot had only very limited sucess. That was a result of the latest op. I know my consultant is reluctant to do anything else and i dont want anymore surgery. I have had enough!

Hi Chris

Thanks so much for the really helpful reply. Our problem is that Joe has had such a lot of surgery and is not keen on any more. But the alternative is to go into a chair for the rest of his life. He is also not very keen on physio and hydro, which we realise will be intensive and fairly long term.

Did your parents have to persuade you to have the surgery or were you all for it? It's a very difficult decision to make when you're at that hormonal age!

Thanks again for the advice.

Libbyt

Hi, To begin with I was against the idea, but I don't remember my parents having to persuade me because 1 minute I'd be for having surgery, then the next against, when nerves got the better of me.
I think the worst I got was the day before the surgery, when travelling to Bristol, where I had it done. I basically panicked, so my Dad had to talk me round - listing the goals that I could achieve once I got through it ie, being able to get on the back of his Harley, the possibility of having a bike of my own and ultimately not spending later years in a wheelchair which has always been one of my biggest fears, because I am such an active person.

This is just what I needed too. My daughter is 11 and is having multi level surgury in 3 wks 16th FEB she is the same One day doesn't want op then the next wishing they'd do it now. We are trying to keep things possitive for her it's quite scary She will have bone surgury first they are taking bone out of her hip to put into her feet to help stop them going under She is having both legs turned outwards at the top her feet turned inwards and her ankles secured. Then 6 wks later she needs bilateral hamstrings lengthening psoas and adductor release. (quoted off letter) muscles and tendons sorted (I think thats what they saying) I have been so mixed with feelings towards these ops She Can "walk" don't want her to be worse but have been warned by surgeon she will become worse IF don't operate. Physio's not being supportive saying she doesn't need this done yet When do they suggest then wait until she carn't walk and have more deformation? It is really reasuring you say you did more activities as you improved my daughter Loves swimming and sports. Things sound as though they have moved on a bit though my daughter going to be in hospital for 5 days after first op no weight baring though and will have casts on under knees for the 6 wks till 2nd op then she will be in a little longer 7 days with 2nd op to establish a physio programme they want her on her feet after 2nd op. This post has come up at the right time for me I have tried for months to get some info about this procedure. Thankyou. P.s Do you have Nice boots now? that is one of the things my daughter says Why carn't I have Nice shoes?

Hi niceboots did you have your surgury done in one go or 2. My daughter has to have two ops 6 wks apart. Will be in casts after 1st then bandaged and encouraged to walk after 2nd also said she will have to wear night splints or gaiters to sleep in for months.

Hi, Ihad my surgery done in one go, thats why I was in for so long.
I think having it all done in one go was better for me, I had the 'get it all over and get fit again' atitude.
I still use gaiters to keep me stretched out, and sleep in them occasionally - when I've done too much!!!
I actually find them more comfortable to sleep with them than without.
Btw. I do have several pairs of nice boots - all pretty sturdy, but alot more stylish than the orthotic ones I used to get given with my afo's.

haha yes the orthotic ones are not very street cred are they My daughter has to have the op in 2 sittings didn't offer us it all in one which may have been a lengthyer hospital stay but at least it would have been done. Going to be hard having one done starting to recover then trying to persude her to go for 2nd one. She's not allowed to weight bare after 1st so I could say she NEEDS to go for 2nd to beable to walk again thats what I'm hoping anyway. They are recomending night splints and Gaiters for after 2nd op for her too. She is VERY Determined so I'm hoping her recovery will be good. Do you have to wear Splints (AFO's) now? You are pleased you went for the ops and they did help? So hard at mo less than 3 wks till they operate on my baby. (11 year old) Any Tips for afterwards to help her cope?

hi, I wore afo's up to the age of 18, (I'm now 24) and am trying to get the right refferal to orthotics to get night splints at the moment, as I feel I need them due to getting really tight. But the adult services for cp don't seem to be great.
I'd say the op helped alot, in the long run. As for tips for coping, everybody is different, but I set myself short term and long term goals and basically went from there. The first thing I wanted to do was get back swimming as it was the most possible goal. I just really kept focussing on what I wanted to do, such as getting back to playing the drums, cycling and mainly riding on the back of my dads harley. As for longer term goals, I was desparate to get my own motorbike, which I did at 16, then 3 months later rode into the back of a lorry, and broke the leg I had most of the op on - physio and consultant not best pleased!!!!
hope this helps

Hi acrossfromthepark

Please let us know how your daughter gets on. My son is having multi level surgery this Autumn all in one go. He will be in theatre all day and in hospital about a week. Then home in plaster for 3 weeks and back in for 1 week to have plaster off and intensive physio etc.

We are waiting for the gait analysis appt first.

Where is your daughter having her surgery?

Nice to talk to people who know what it's like!

Libby

Hi libbyt Samantha had Gait annaylsis and thats where they identified what she needed. She is going to Newcastle RVI. She goes in just over 2 wks time. She has 1st op done in for 5 days will have under knee casts for 6 wks no weight baring 2nd op done as we go back for casts off she will be in a week or so getting a physio programme started and back on her feet. Weve had the operation (1st) explained sounds a lot of work.Samantha's 1st op 5 hrs long not sure 2nd op Wish they were doing it all in one.It is good to talk about it to people who do know what it's like. not a good wk for me. worrying about the op and nothing I can do. I will let you know how she goes.

Samantha LOVES swimming and that will be the thing she misses most while recovering Surgeon has said as soon as wounds have healed from 2nd op she can go back :-) She has a Trike She wants a 2 wheeler not sure if this possible But I try never to say never. She is DETERMINED. I'l try to keep her off motorbikes. Thanks for tips. Think Ive got most things covered weve booked a show for nearly 4 wks after 1st op to get her out of house in chair She doesn't want to be stuck in a chair (her words) Hopefully will have had her out before that though hoping to take her to school so she see's her friends and they see she's ok Good to have things planned something to look forward to. told her when she gets home we can phone her friend to come and sign her casts. Small thing to us but Big to her. I will let you know how she comes on. Thanks it's good that you have been there done it and got T shirt It's ok for surgeons, physio's etc saying what it's like (have they had it done NO) Thanks for the Reasurance.

My foster child has the same, he is 10 years old, because he is collapsing a lot, they have decided to do the surgery now, well on the 15th Feb, I am very nervous and I am a lone carer, plus my house is totally inadequate for him. But I am remaining positive that we will get through this. He was supposed to have surgery sometime in his teens life. I shall let you know the outcome after it is done, but I have been told that it will take a year before we see results, lots and lots of physio is involved for it to work.

Michaella

Hi Michaella

Looks like there are 3 of us on this journey then! I'm still trying to persuade my son it's the right thing to do but at 14 he has his own ideas!! Having had lots of surgery in the past, he's not too keen but the alternative is life in a wheelchair.

Keep us posted about how it all goes, it will be helpful if we can support each other.

Libby
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Hi Michaella61 Which hospital is your son having the op at we are going to the RVI Newcastle on the 15th feb. One week to go How do you feel? Same? pass? mixed up? Hate waiting this is Hard. Hope Both our children (all 3) Get the best possible outcome It's hard knowing what to do for the best especially as walkers already (Im assuming your son can "walk") Well not much more we can do exept countdown till next week. Have you got any aftercare sorted? OT, physio, community nurses? think they sort most of it before discharge home. Good Luck. Nice to know we arn't alone in this. Il keep you posted post op. (that sounds good post op :-) )

Just wanted to say good luck next week with Samantha's op.

Hope it goes well, will be thinking of you

Libby
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Hey, acrossthepark

How is Samantha doing?

Libby
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Hi Samantha is Home and doing well She is in quite a bit of pain when she moves or stiffens up. She is looking pale and tired But doing well. She is improving daily and surgeon was pleased with the op. Got to go back in April for the soft tissue op. Wish we had known how difficult it would be for her to transfer from bed to chair, Chair to commode with her not being able to put weight on feet she has to lift her bum up with her hands on either side of her things like pulling pants on is hard but she is getting stronger arm muscles now. They l have to watch her when she goes back to swimming She'l have good strong arms and hopefully legs too. Don't know what I expected regarding op they said she'd be in 5 hrs She went down at 8.45 we saw her in recovery at 6pm but was after 7pm before she was able to go back to ward She woke up shaking from anisthetic so waited until more comfortable. So many tubes in and out was difficult to see her like that but after she had been gone for that length of time it didn't matter. She had a epidural in her back also a morphine drip. Considering what she'd had done she was relatively comfortable.A difficult week focus on one day at a time. Better once home.

Hiya,

I'm new to the forum today.

I have spastic diplegia too and had multilevel surgery at 14. I'm 20 now. Mine was muscular only as I had a lot of tightness in my legs and my knees were permanently bent. There were 6 incisions altogether, on the inside and outside of each leg at the knee and at each hip. Before the surgery, I was very against surgical intervention and had ruled out both botox and plaster casts. But there was no other option.

I was in hospital for a week and didn't have plaster casts, just big thick bandages like gaters which they took off after four days. The dressings underneath we soaked off at home after another two weeks or so and the stitches dissolved quite quickly. I had four weeks off school altogether and was on crutches for a little while. The difference was quite amazing really. I can stand straight now and I stopped wearing splints as I had for years before.

Pain/discomfort wise, it was not too bad. I had an epidural but removing the tape holding that in place hurt more than my legs so would rather not have had one. There were some twinges as I walked and went up stairs for my assessment before I went home but nothing awful. Sleeping was difficult because I normally don't sleep on my back and prefer my legs bent, but the noise and light in the hospital was probably as much to blame. I hated the catheter too but they took it out when they realised the epidural hadn't taken out my sensation.

The physio was better than I thought, pretty much the same as my ordinary exercises. I was also told that I would have to do the exercises religiously or my legs may tighten up again. I did do them consistently for a while but since I left school I'm less diligent and haven't noticed much difference so it seems like having the surgery was a long-term fix. The scars have faded to tiny white lines, while the tingling and numbness I had in some parts of my thigh have slowly gone away. I get pain in my hip in cold weather or when I run fast but that's all.

Alex

Hi Alex That sounds similar to Samantha at times she had catheter in and epidural. Epidural kept blocking so got no pain relief a lot of the time Bleeping machines Flaming nightmare in hospital. Sleeping Yes thats what she is complaining of now wants to sleep on side with knees bent but has 2 long wounds on outside of legs (top) and casts on too. Goes back in 4 wks for soft tissue op then the intensive physio should begin. She is finding it hard at present was able to "walk" now NO weight baring till after 2nd op. Getting strong arms but very FRUSTRATED. Doesn't like being dependant on us at all.

Having trouble sleeping sound familiar!! those machines do your head in!!
I had to spend a while confined to bed, that was frustrating, I found it gets a lot easier when you can start to wieght bear, then you can get on with physio. you do gain alot of strength in your arms and shoulders!!
hope all goes well
chris

Thanks Chris. Hopefully these ops will be worth it in long run. Just hard for her at moment being able to do Less than she could before and having more pain too. Complainng more of lower leg cramps too? (under casts) She is getting more comfortable during the day now and transfers getting better. Didn't relise how strong her arms needed to be to lift her bum off chairs and transfer over to another Cars are proving hard uses a transfer board then but managing most of time withourt in the home. She is really wanting a bath and a good Scratch under the casts Hope they will take casts off day before next op and let her have a bath. Wounds seem to be healing well so far.4 wks till next op will mean a longer stay in hospital for her as she needs intensive physio afterwards which her physio Won't? or Carn't? provide. Crazy eh taking up a bed so she can access services What is going on with the NHS.

I had really bad lower leg spasms, I think it's just the muscles getting used to being in the position of the casts - I was on muscle realxant meds for that.
I had to stay in for intensive physio, I think it's just where they start off with little movements at first then build up, and work out a programme of exercise etc. I also had to wait in until my splints were made.

Hi they ve upped Samantha's Baclofen which has helped with her leg spasms. She is doing really well at mo Frustrated Yes but the progress and determination WOW. she isnt suppose to weight bare although they said she could stand for swivel transfer Which she carnt do Her legs are weak at mo. She tranfers sidewards onto chair cammode etc. She bum shuffled upstairs lastnight with arm pushups and handrail pulls a bit of push drag with feet but she got there. Physio suppervised this so said it would be ok to do once a day. We got her up later that night again and got her into shower she was very tired so we put her into her own bed up there I spent next 2 hrs going up and down for drinks medication move her legs etc finally settled at 11ish. She is only on paracetamol now and baclofen of course.Trying to get her to go upstairs to bed at night and down in morning juggling stools chairs etc to get her from floor up to height of bed or her chair without putting too much pressure on legs and feet. Next op in 4 wks so she will have really strong arms by then eh? Wonder if could enter her for weight lifting she can already lift 8 stone+ She will be in hospital for 2 and half wks after next op and should be getting splints made while in hospital (Il shout loud so they do) physio told me yesterday could be up to 6 wks for them to be done something about having to get them signed off or something. Nothing ever easy eh? Wounds healing well but will still be good ones to show off at school She should be starting back part time on tuesday.

Samantha is HOME Again she has had both operations to help with her pain and deformations. She has got 15 insisions in total 11 first op and 4 from 2nd She is doing well. She looks really tall and we can see light through her legs which seemed to be super glued shut before ops. She is Standing with a walker and taking a few steps We have to work on her standing tall to strengthen her muscles which did decrease during her time in casts. She is not in as much pain as after 1st op They lengthened her hamstrings and psoas? Hopefully in time she will regain her "walking" skills and hopefully improve further. A lot of hard work ahead But as they say No Pain No Gain. Well she has had the pain lets see the GAIN SOON.

Great!! Glad Samantha is doing so well!! Joseph is having gait analysis in 2 weeks before his op in the Autumn. He is already stressing but his walking has deteriorated so much, it's excruciating to watch. And like Samantha, his legs are glued together so even getting him dressed is difficult.

Thanks for letting us know, keep us posted

Libbyt

Yes the dressing is a nightmare. So hard to find underwear that was comfortable she doesn't like things close fitting She is still wearing pj shorts and leggings all minus anything underneath. Socks were a nightmare too she could'nt bend her legs up enough to be able to get them on herself. We noticed a deteriation in Samantha's walking it was difficult at first you just think it's a bad day for her But she had got worse. She has had two BIG ops and she wasn't sure she wanted them But the alternative was to watch her get worse and end up in a wheelchair Full time. Now she has had the ops we can see improvements already even though at present she cartn't walk independantly. It was a very anxious time deciding on whether to operate If she would be better off etc But so far pleased with results I Hope she continues to improve and makes it all worth while.
Good Luck to Joseph You'le be OK lots of work to do afterwards (sure mum will provide treats and incentives) They looked after Samantha Good in hospital sorted pain relief and all that. Now we can focus on moving Forwards not back. Oh and she went back to swimming at the weekend much to her delight.
PS If you want to talk you could put a message on the Facebook page of helpkidswithcerebralpalsy I usually check in there more regularly Ask about multilevel surgury or mention your son going and you want to know if anyone has had it done. I'l keep you updated with Samantha's progress.

Samantha is now 10 wks post 2nd op and is doing Really well she has progressed onto crutches and seems to be a natural with them even going up and down stairs easier. She is now taking her walker into school and using it to go to classes building up to using it more throughout day. She is also back at swimming club and has not slowed down despite missing 4 months.She took 12 steps last wk on her own but will need crutches for a while yet to help with balance support and strenghthening her leg muscles.We went to newcastle end of may for a check up and they were pleased so don,t need to go back till October.

my 14 year old daughter has just had multi level surgery 6 wks ago.she has spastic dipegia.my advice is dont do it.our experience is not as they describe in their glossed over ward leaflet.my daughters epidural failed she was in agony and even though she had morphine pump, voltarol,diazepam to control horrendous spasms which she had not received prior to surgery paracetamol and 3 bolus to flush the epidural she was beside her self with pain.she ended up having ketamin.the guilt that i feel for signing that consent form is horrendous.within 48hrs her leg swelled so much and she started with pressure sore on heel they decided to take it off and leave her with a brace.she then developed breathing difficulties again no one tells you if she had needed ventolating they have no facilities on site.a few days later she went a funny green colour when her bowel wasnt working properly because of the pain killers.no one tells you how your child is going to react when they change the cast and they see the scars which are much bigger than expected.no one prepares you of how tired your child will be and even having a wash and transfering of the commode to the bed or wheelchair as there is no weight bearing for 6 wks completely tires them out.we were lucky as our kind ot provided us with a manal hoist.this has its set backs as it takes a good ten minutes from start to finish in transfering from bed to commode quicker to manually lift when patient is desperate for loo.advice is to buy a sheepskin for the wheelchair .sheepskin pieces to tuck inside bra straps and tops of casts to prevent sores coming on shoulder blades.buy extra bedding use non bio wash powder as skin becomes more sensitive and gets sore easy.no one tells you how your child gets frightened of how painfull the physio is going to be as just transfering is an ordeal.im not trying to frighten anyone when you go to pre admission clinic those rose tinted illusion that there will be a bit of pain is an understatement.we go back next week for the start of six weeks rehab .im dreading it

Hi Mumwhocares

So so sorry to here of your daughters suffering, sending you a hug. We all try to make the right decisions for our children but it's not always easy.

We asked for a second opinion on our son's recommended multi level surgery because he was not keen and we weren't sure what to do for the best. We are now under Great Ormond Street Hospital and the consultant that we saw there said "absolutely no way" she told us that our sons leg and pelvic muscles were so weak that no amount of surgery would help.

Thank you for warning others that surgery is not always the right thing and sometimes you just have to accept what you're given. Don't beat yourself up over your daughter's surgery, you did what you thought was right.

Libby
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