Multi Level Surgery - Page 2 — Scope | Disability forum
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Multi Level Surgery

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Comments

  • niceboots
    niceboots Scope Member Posts: 198 Pioneering
    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
  • niceboots
    niceboots Scope Member Posts: 198 Pioneering
    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.
  • JDWilson
    JDWilson Community member Posts: 90 Listener
    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.
  • JDWilson
    JDWilson Community member Posts: 90 Listener
    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.
  • JDWilson
    JDWilson Community member Posts: 90 Listener
    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.
  • libbyt
    libbyt Community member Posts: 30 Courageous
    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
  • JDWilson
    JDWilson Community member Posts: 90 Listener
    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.
  • JDWilson
    JDWilson Community member Posts: 90 Listener
    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.
  • mumwhocares
    mumwhocares Community member Posts: 4 Listener
    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
  • libbyt
    libbyt Community member Posts: 30 Courageous
    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
    x
  • libbyt
    libbyt Community member Posts: 30 Courageous
    Hi mumwhocares

    My son was born at 29 weeks too. And you are so right, nobody understands what it's like having a child with cp apart form other parents of cp children.

    Hope your daughter's spasms improve. My son had horrendous spasm a couple of months ago and the only thing that helped relax them and stop the pain was diazapam - 10mg daily!! Word of warning, Joe was on 10mg daily for 4 weeks and had an awful few days trying to wean him off them. He became angry and aggressive until his body got used to not taking them again, although he was on a lot higher dose than your daughter.

    Take care, hope she improves

    Libby
    x
  • mumwhocares
    mumwhocares Community member Posts: 4 Listener
    Thanks again for your kind words.my daughters surgery consisted of right ankle broken and turned fib and tib broke and a plate put in phenol and botox in hamstrings and aducters.on left leg fib and tib broke ,knee cap shortened and turned and thigh broke with a large plate.her scar on her thigh is about 11 inches long and she has a inch scar below and threw her knee.on her ankle the scar is about 3-4 inches long. at the same time she had tendons transfers and muscles moved all this surgery was done in one go.my daughters leg brace was taken off and her plaster cast removed today her knee keeps jumping up and this knee has been completely straight no bend more than 30degrees max for 7 wks.her first session with the physios lasted minutes and my husband said he could hear her crying down the ward they stopped but tomorrow hydro pool and more physio.the physios had commented that psychologically when things go wrong post op its hard to gain the childs trust again.In my daughters case the reason why we went through with the op was to preserve her small amount of transferring from wheel chair to toilet or to car etc.my daughter was walking short distances with splints boots and a kaye walker she has never walked or stood up without holding on to anything.my daughter went through early puberty starting at 7 so has now completely grown her bones have fused at the age 12.As time went on her knee starting rotating and buckeling under and she became completely reliant on her chair and hoist. When a child has a life threatening condition where there is no choice or a child has an accident the decision to have surgery is life or death but multi level surgery is just as major but without he guarantees its going to work or be worse than you started out.along with all this my daughter has bad reynards and has been referred to a rheumatologist.this makes the healing process much harder as its down to bad circulation.thanks again to everyone
  • mumwhocares
    mumwhocares Community member Posts: 4 Listener
    thankyou for your kind words.my daughter went back to hospital today.last night after getting her bathed ready for today i phoned the hospital and explained how scared she was,and after crying so much she refluxed her tea and that the spasms despite having 4mg of diazepam were extremely painful and the whole experience has left her not trusting the medical profession.ive asked could they break her into physio a bit gentler to build up her confidence..dad has gone with her for the first two days as i have two boys who have had croup and have just gone bk to school.My daughter was born at 29mwks but my waters broke at 25 she was on a ventilator then on cpap and after 17wks of one step forward 3 stepsback came home on oxygen.we have overcome pneumonia then bronchoilitous rsv strain where it was a mad dash to alderhey where they resusitated her on the way.she was ventolated for another 3wks all over christmas and new year.We as parents have to fight for everything from wheelchairs home adaptations to responsible educated 1-1s in school and when things go wrong you feel helpless unless you have a sick child no one knows how tiring and stressful it is.thanks again
  • JDWilson
    JDWilson Community member Posts: 90 Listener
    Hi mumwhocares I hope your daughter is doing a bit better now I can totally understand your guilt re operation It is not easy and they are in a lot of pain. It has took 12 months for us to start to appreciate the multi level surgury Even Samantha is realising she can walk straighter with legs in a better possition she is still a bit unsteady but is walking independantly again. The operation has been done as you know too late for regrets the important thing now is to look forwards and try to keep up with exercises and stretches. My daughter was back at swimming a month after 2nd op and was Talent spotted for her swimming abilities 13 wks post 2 nd op she is now swimming National competitions and it is ONLY 12 months since her 1st operation 10 months since 2nd op. I really do hope things improve and you don't feel guilty about the operation YOU were advised to go ahead by experienced surgeons. Please keep us updated with your daughters progress. My daughter has 15 insisions some 15 cms long 2 metal plates but she has healed well. GOOD LUCK It is going to take time and your daughter will get frustrated but hopefully by this time next yr it will have been worth it for you both.
  • JDWilson
    JDWilson Community member Posts: 90 Listener
    Mumwhocares I just read 2nd page and saw healing more of a problem we were told about a cream/gel called kelo-cote which helps healing and scaring it is
  • Anitakk
    Anitakk Community member Posts: 3 Listener
    Hi, so pleased to read you post. My 13 year old daughter is due to have her hammys and calf muscles cut and the are putting plates in her thigh bones and hips. She is solo scared one minute will have it done, next she won't ....are u glad you had it done.

    Anita
  • Anitakk
    Anitakk Community member Posts: 3 Listener
    Hi, some like parents at last..site is fantastic. I'm in same situation with you, waited two years to finally get to see surgeon at evelina children's hospital. They want to break one leg, cut hamstrings in both and calf muscles in both. Daughter is now petrified ( so am I) she will be months in a wheelchair and currently walks unaided... I feel so lost right now as to what to do for the best
  • Anitakk
    Anitakk Community member Posts: 3 Listener
    Hi, in now in the position you were when you wrote your post and soo scared. How did it go?
  • JDWilson
    JDWilson Community member Posts: 90 Listener
    Hi Anitakk Just saw your post I was terrified for my daughter were we doing the right thing? would she be worse off? what if it goes wrong? I'l blame myself because she didnt REALLY want it done. Pleased to say 15 months post 2nd op she is doing well she IS walking again and has a better Gait when standing and walking her feet are not collapsing under her as they were and she is getting stronger. My daughter recovered well and after 2nd op started work straight away on getting back on her feet it was hard work to go from being a walker to being in wheelchair Full time then onto a walking frame to crutches and then a little bit with sticks she is now walking independently again. I hope this helps as I know how worried I was before Samantha went for her surgury I can NOW say Im pleased she had it done but did have doubts along the way hard to see your child in pain and getting frustrated at things they could do before and had to learn how to do again. Samantha can also see the benefits and is pleased she had it done but was Adamant she DIDNT want it done/ I hope things go well for your daughter. good Luck xxx

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