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Multi Level Surgery

libbyt
libbyt Member Posts: 30 Courageous
edited May 2014 in Cerebral palsy
Hi Everyone

My son is 14 and has Spastic Diplegia. He uses a kaye walker at home but his walking has deteriorated to dragging his feet as his legs are collapsing under him.

We have been told that the only way to keep him on his feet is muti level surgery - bony and soft tissue.

Anyone got any experience of this?

Many Thanks
Libbyt
«1

Comments

  • niceboots
    niceboots Member Posts: 196 Pioneering
    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.
  • leg_iron
    leg_iron Member Posts: 20 Listener
    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!

  • libbyt
    libbyt Member Posts: 30 Courageous
    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
  • niceboots
    niceboots Member Posts: 196 Pioneering
    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.
  • JDWilson
    JDWilson Member Posts: 90
    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?
  • JDWilson
    JDWilson Member Posts: 90
    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.
  • niceboots
    niceboots Member Posts: 196 Pioneering
    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.
  • JDWilson
    JDWilson Member Posts: 90
    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?
  • niceboots
    niceboots Member Posts: 196 Pioneering
    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
  • libbyt
    libbyt Member Posts: 30 Courageous
    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
  • JDWilson
    JDWilson Member Posts: 90
    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.
  • JDWilson
    JDWilson Member Posts: 90
    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.
  • michaella61
    michaella61 Member Posts: 2
    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
  • libbyt
    libbyt Member Posts: 30 Courageous
    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
    x
  • JDWilson
    JDWilson Member Posts: 90
    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 :-) )
  • libbyt
    libbyt Member Posts: 30 Courageous
    Just wanted to say good luck next week with Samantha's op.

    Hope it goes well, will be thinking of you

    Libby
    x
  • libbyt
    libbyt Member Posts: 30 Courageous
    Hey, acrossthepark

    How is Samantha doing?

    Libby
    x
  • JDWilson
    JDWilson Member Posts: 90
    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.
  • AlexM
    AlexM Member Posts: 3
    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
  • JDWilson
    JDWilson Member Posts: 90
    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.

Brightness

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