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worried mum from Australia

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  • #46
    Amber will not take pain killers at all, unless she is in a lot of pain that moving won't help. I have explained to her that if she takes them her body will be able to concentrate on healing and not fighting pain. She's just stubborn I guess. In bed she starts off where she is most comfortable, that is left, right or flat on her back. She can roll herself now. I get up every couple of hours to check on her, help her roll rearrange pillows, ask her if she needs anything for pain etc.. When she is on her side I put pillows behind her. Sometimes when I go in to check on her she has rolled right over and is cuddling the pillows. She seems to be comfortable but I'm not sure how honest she is being. When she gets up she is stiff and slow and I can see the pain on her face, but she says I'm fine and if I ask if she is sure she snaps at me. I don't know how to get her to understand that some pain is OK but she can take stuff for it when it is bad. The nurses told her that she should take something before it gets too bad. So it didn't sink in from them either.
    I don't know why they took bone from her hip especially when they took out so much rib. In the hospital I was so tired and so much was happening I just didn't think to ask and we only saw the surgeon twice for a few minutes. I'll ask at her 6 week check. As for correction I'm not sure as we were discharged the same day the surgeon came to look at the x-rays. But from what I saw they looked pretty good.
    Andrea,
    How far did your surgery go Amber's was T4 -L4. Years down the track what differences do you notice or are aware of? Do you have any pain now? Have you had any problems?
    Peggy,
    What about one of those rubber bath mats? You can get square ones here that are for the shower. Or maybe a rail in the shower. Hopefully all our suggestions will be too late and she will have her "shower legs' (confidence).
    Best wishes everyone.
    Cheryl.

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    • #47
      I know that this is still a form of "pain killer" but it is not a pain killer as such. It may be something that Amber might like because it is not addictive/not as dopey feeling as a pain killer. What about trying a muscle relaxant tablet (the only name that springs to mind is Mersyndol but there are lots others) or trying something from a health food shop (they have stuff that aid restful sleep, or muscle relaxing or something like that). I know that Mum takes them every so often and she says she doesn't feel too dopey from them.

      Alison

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      • #48
        Hello all!
        I know this is an old topic, but I wanted to bring up the "cracking" noise in the back. I had surgery about four months ago (has it been that long???) and I occasionally heard that same noise, just from sitting down. Its completely normal, so don't worry about it.

        About the painkillers: I am personnally opposed to painkillers because they only cause more problems...especially the strong ones. They made me nautious, constipated, and "out of it." If Amber doesn't want to take the pills, don't make her, as long as shes not in extreme pain without them. The sooner she can get off the medications, the better.

        Good Luck!
        Charlotte

        48 degree upper curve
        L2 to T4
        Braced for 4 years
        Surgery 2/4/04

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        • #49
          I got Amber to take 2 Nurofen last night before bed. She had a much better night. At first I asked her if she wanted to take something and she said no. I asked her if she wasn't in pain during the nights why wasn't she sleeping. She said she didn't know. I said well you can't get comfortable, your moaning and groaning constantly so somethings bothering you. She said she took the tablets just to shut me up. This morning she thanked me for making her take them as she slept better. Every time I checked on her during the night she looked peaceful.
          The only pain killers I have to give her are Panadol, Nurofen and the new Nurofen Plus ( which has a little codine in it) The last one is only for when she is really bad. Even if I had anything stronger she wouldn't take it.
          I'm glad the back 'cracking' seems to be 'normal'. It's so 'nice' when you're sent home not really knowing what to expect. I'm sorry if I am a bit all over the place. Shayleigh had a high temp last night, so I was up with her alot during the night, then she crawled into my bed and snored like a freight train. I'm running on auto pilot today.Amber won't get out of bed (it's nearly 11am), she says it's too cold and she has no reason to get up. I have to wait around for my solictor and Amber said that's not worth her getting up for. I'll take her out this afternoon though.
          Cheryl.

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          • #50
            I hope Shayleigh is feeling better. I agree that there should be an "instruction manual" (that's the only way I can think to put it even though its not quite what I mean) for what it is like after a scoliosis surgery. But unfortunately most orthapaedic surgeons/ orthotists have never worn a brace, had the scoliosis surgery. Thus never experienced it "life" they only know it medically, not the realities, and send you home almost "blind". I think that forums such as these are an absolute blessing for the "realites" of scoliosis experience. That we all tell it like it is. Having experienced scoliosis for my whole life, is part of my inspirtation in aiming towards studying Prosthetics and Orthotics next year at uni. I have never felt that when an orthotist says "I understand" that they reallly really "understand". I will be an orthotist who can say I understand, this is why, and this is how. I think that surgeons who do scoliosis surgeries should spend a day in a backbrace (well though it not practical, it does make me smile)

            Alison

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            • #51
              Haha, good idea Alison.
              Charlotte

              48 degree upper curve
              L2 to T4
              Braced for 4 years
              Surgery 2/4/04

              Comment


              • #52
                Yes, thankyou, Shayleigh is feeling better. I agree this forum is wonderful, otherwise we would all be constantly ringing doctors asking all those 'stupid' questions. But if you don't ask you never no if it is normal or that you are doing the right things. Speaking of that Amber wants to lay on her stomach. Is that allowed. I never thought to ask her surgeon, I guess I thought she would be in too much pain to even want to. 99% of the time I can't lay on my stomach as it 'jams' my back and I can't get back up, when I do it takes hours for me to be able to walk again. I don't want this happen to Amber and neither of us want to risk her doing any damage. What does every one think?
                Alison I can't believe you'd only make them wear a brace for one day! It would have to be at least a week to get the proper feel of it. Maybe it should be compulsory for them to read forums like this and when they are in training to have more contact with patients afterwards so that they can get more of an idea on what these kids are going through. Good luck in your studies. I bet you will have people from everywhere looking you up in years to come. What better recommendation, I've been there. Again, Good Luck. Amber had two car trips yesterday. We went to get a 'mobility parking permit' it will allow us to park in the wheelchair only parking bays so that she doesn't have to walk as far when we need to go to shopping centres etc.. Last time she was in the car she suffered the next day, so I hope today is not too bad. I have to go our chooks are fighting and I will have to break them up before they wake everyone up.
                Cheryl.

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                • #53
                  Lying on the stomach is not allowed post surgery because it puts too much stress on the back, so I would definately say no.

                  By the way, what are "chooks"?
                  Charlotte

                  48 degree upper curve
                  L2 to T4
                  Braced for 4 years
                  Surgery 2/4/04

                  Comment


                  • #54
                    Thank you, I didn't think she could lay on her stomach and I told her so. It's good to have some else backing me up. How long are you not allowed to for?
                    Chooks you know chickens, they lay chicken eggs and you eat them. We have 5 pet ones, we eat their eggs but would never eat them. We also have a dog, a cat, fish and a pet rat. (at the moment).
                    We just got back home from a short outing. I was looking at buying a new mobile phone at a shop 5 minutes away from our house. Amber got extemely pale and pasty, shaky, dizzy, she said her ears went funny, she couldn't hear properly. I think she came very close to feinting. I'm friends with the shop manager and he got her a chair. She was OK after a few minutes. When she got up she said "how embarassing". Now she knows why she should have someone with her all the time. At least it hasn't made her want to stay at home. But she is laying down now.
                    Cheryl.

                    Comment


                    • #55
                      How is Amber feeling now? I would agree with no lying on your stomach. And also too stressful on your back, and not a good idea especially because when you are on your front you tend to lift your head/turn your head, which places the same stress as twisting. As for when again, I've never been able to do it comfortably, because my fusion goes high. But my best guestimate would be at the six month mark, when Amber is able to go back to doing more things, and definetly a year.

                      Alison
                      Last edited by Alison; 05-28-2004, 11:39 PM.

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                      • #56
                        momof5

                        hey mom of 5!! i had a question...about your daughter like almost fainting n tha store....was she able to see or likw was it all blurry? b.c like i had surgery oct 6 last yr and like since then i have passed/blacked out 3times....one on easter one time before that and then like a month or so after easter....and like i went to tha ER and liek they didnt kno what was wrong, so i hadto do a catscan of my head and like everything was normal....n i was just wondering like if your daughter was on morphine after her surgery.....b.c like i dont kno im startin to think thats y i blaked out....but did u take her to tha doc about it?! sorry like im not trying to like scare you or anything i was just wondering thank you so much! much <3 ~*ellen*
                        my email address is LilCutiPie_07@yahoo.com and my AIM sn is legalblondelle21
                        thank you so much again!!
                        and i hope your daughter is feeling better and has a speedy recovery
                        much <3
                        ~*ellen*

                        curves before and after surgery*oct6 03*
                        before--51 and 21
                        after--15 and 14

                        Comment


                        • #57
                          Amber said yes her eyes did get blurry & sort of heavy. I'm sure that it was because she hasn't been eating much, her blood pressure is a little low, her surgery was only 17 days ago and she was on her feet for awhile. A lot of things combined to make her almost feint. One of my other children had a problem with passing out and collapsing, she has been through the cat scans and epilepsy tests etc. I'm positive what happened to Amber wasn't that. Amber was on morphine for 2 1/2 days. She is feeling a bit better tonight though she is still pale. Thanks for your concern. What was your problem is everything OK now. How does your back feel this far out from your surgery?
                          Cheryl.
                          Last edited by mumof5; 05-29-2004, 02:45 AM.

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                          • #58
                            Hi,
                            Just a comment about sleeping on your stomach after surgery. My daughter does and has since right after the surgery. Surgeon never told us she couldn't and it is comfortable for her. She always slept that way before the surgery too. We went to the movie yesterday! Yeah. She wanted to go home directly afterwards but it is a start! Good Luck everyone!

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                            • #59
                              hey cheryl!! my doctor never found out what the problem was, it hasnt happened for a month now, so i hope it wont happen again....my back is doing great now. its almost been 8months i was walkin fine 2 and a half weeks after my surgery and was able to be left alon tha 3rd week. i always had a phone with me incase sumthing happened, and tha elder neighbor would come by and get me sumthing or watever...i felt bad though having her come everytime i accidently dropped the remote to tha TV so i decided i would bend down and get it myself. mom got mad at me but i told her i was fine and it didnt hurt....i was tired of relying on other people to do things for me although it was pretty funn having my sisters wait on me hand and foot....by like tha 4th week i was doing great iw as ready to go back to school...i started my tennis back in december at tha beggining of tha 2nd semester and everythings fine now! im still restricted frum contact sprots i think, yet i have been playing softball every friday night for liek tha past 5weeks! at first my mom wouldnt let me but she felt bad and decided that everything was fine and that i could play....tha other team was told that i had recently had back surgery and played a little bit easier on me and liek didnt tag me out.....which took out all tha funn but o well....sorry this is so long, i just keep babbling....hope amber is doing better! ill send my prayers!! much <3 and take care ~*ellen*
                              if you have any questions feel free to email me at LilCutiPie_07@yahoo.com
                              much <3
                              ~*ellen*

                              curves before and after surgery*oct6 03*
                              before--51 and 21
                              after--15 and 14

                              Comment


                              • #60
                                I'm glad you are doing so well. I can't believe you are doing so much sport already. Good work.
                                Amber is doing fine this morning. We watched the first two Lord of the Rings DVD's yesterday and had some friends come over. She wants to watch the last one today then I'm going to get her out somewhere again. Hopefully she won't try to feint again. At least having four sisters there is always someone close to her and can call me if need be. The baby monitor I am using is wonderful, it just gives a little bit extra security. Amber is managing the stairs really well and is becoming indepent in every area except washing her hair and shaving her legs. What are people veiws on showers versus baths? We have both separate but she is having showers while sitting on a chair.
                                Cheryl.
                                Last edited by mumof5; 05-29-2004, 06:58 PM.

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