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  • need to decide on surgery

    My daughter who will be 13 in November has severe scoliosis. I have to meet with her doctor's Monday to discuss surgery. My problem is that my daughter also has severe cerbreal palsy and cannot walk or talk. She is totally dependant. The idea of surgery terrifies me. But her curve is progressing at an alarming rate even with bracing. I have been researching and I understand that without surgery, she could develop problems breathing. I have mixed emotions. She is wheelchair bound and does have some weight bearing on her legs with equipment. She cannot speak so she cannot tell us how bad she hurts. She communicates through facial expressions and crying. I worry about how painful it will be for her, how long of a recovery, and complications there may be. Any feedback I can get would be truely appreciated. This is one of the hardest decisions I have to make and I want to make the right one for her. Please feel free to email me in addition to posting. I have to fight for the computer sometimes from my other children
    Thank you so very much!

  • #2
    I am so sorry that you have the face this sort of decision. Do you know what your daughter's curve is? I really don't know how to help you because on one hand, your daughter could face extreme pain and deformities without surgery, but one the other hand, surgery could be an extremely dangerous and painful process for her. I guess its just a matter of weighing the means versus the ends. Good luck to you and your daughter.
    Charlotte

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

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    • #3
      Hi again... I just posted to you on the other thread about weighing the pros and cons for your daughter. I just noticed you are near Cleveland. If you email me, I can give you the name and email address of the Scoliosis Support group chapter president in your area. She is a scoliosis patient herself and can give you some great insights, I'm sure. I don't know what your email address is... mine is boulderfam@hotmail.com
      Carmell
      mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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      • #4
        I'm sorry that I can't offer any advice. Surgery is a hard enough decision to make without the added complications. I'd just like to say that you have my support and best wishes. Let us know how things go.
        Cheryl.

        Comment


        • #5
          One of the questions you might want to ask is how much growing Chloe has left, make sure that the ortho listens to what you have to say carefully and helps you make a list of pros and cons. Another question could be what what Cloie's sitting/some weight bearing without the surgery and what it would be like without the surgery. Don't be afraid to ask questions, no matter how strange. Just curious, does Cholie have any communication through any communication devices such as communication boards. Something else I would try and find to do would be to see if you could talk to a mother whose child has CP and has had the surgery. It is often good to hear about someone else's experiences who are similar to your own, the ortho might be able to help there or your local CP association or a scoliosis support group.

          Alison

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          • #6
            Hi

            We seem to be in almost the same situation as you are. My daughter is 16and a half with severe cerebral palsy (spastic quadraplegia). She is totally dependent and does not weight-bear at all any more. Her speech is very limited although she does talk a little and also uses a symbol book for communication. Just last week, after a great deal of thought, we made the decision to go ahead with surgery. We are now on the long UK waiting list.

            Can I suggest you do a search on "neuromuscular scoliosis" rather than just scoliosis as much of the info on idiopathic scoli is not directly applicable to neuromuscular conditions. I found this site particularly informative http://www.gillettechildrens.org/Lib...d/vol11no3.pdf

            Our consultant told us to take a couple of things into consideration:
            1) the curve will progress and will not stop doing so. Sometimes idiopathic curves will stop - particularly once growth is complete - but neuromuscular ones don't.

            2) Without surgery, seating can become very difficult. My daughter is in a moulded seating system but this has had to be revised regularly to try to control her position and maintain her function in her right arm (with which drives her wheelchair). Preserving function is one of the main reasons for surgery. Eventually it could be come almost impossible for her to sit for more than an hour or so if the curve continues to get worse.

            3) Although the fusion will affect growth in the region that has been fused, she will gain some from being straightened out and it's better from a function and quality of life point of view to have a straight shorter spine than a dangerously curved longer one.

            4) Better results and fewer complications result from earlier rather than later surgery. He said one of the worst things we could do would be to put it off for a few years to when her spine was less flexible and surgery would be more radical and less successful.

            Hope this has helped some. It's a terrifying decision to make - I spent months thinking " I can't let them do this awful thing to her" and then " I can't let this go on getting worse and do nothing". She's had fairly major surgery before but nothing has frightened me the way this has.

            Very best wishes,
            Lorrie

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            • #7
              Hi again,
              I forgot to say that we were also told that, while it is possible that our daughter would be left with some long term back pain after surgery, this would also be true without surgery and would likely to be much worse if left untreated.

              Bracing does not stop the progression - it only controls the sitting position. My daughter has been wearing braces of one kind and another since she was about 3: first just a hip spica and later incorporating a moulded corset to try to control the twisting. In spite of that she seems to have ambitions to be a corkscrew!

              Lorrie

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              • #8
                thanks!!

                Lorrie,
                Thanks for the reply. I appreciate your response. It does sound like we are in the same boat. My daughter has pachygyra with cp as the result. In a nutshell, her brain did not form properly. Instead of the small folds a normal brain has, Cholie has very large folds. As a result she has very little control over her movements. She has a g-tube for feeding. Unfortunately she has never spoken other than cooing or similiar sounds. The team that works with her is working on using a communication board with her. Its still a long process away. She stands by using a stander with a harness. I broke down in tears the first time I saw her standing. I never thought I would ever see it. They are even teaching her to "drive" an electric chair.
                I am really terrified of making the wrong decision for her regarding this surgery. But I feel that I will not have much of a choice with the speed her curve is progressing. I am most concern of pain management after the surgery.
                I will post after the appointment tomorrow and let everyone know what they say. Please keep in touch and let me know how your daughter is doing. My email address is twofogartys@alltel.net. I will keep you both in my prayers. I am so glad to have someone to talk to about Cholie!
                Sincerely,
                Cholie's Mom

                Comment


                • #9
                  spoke with doctor

                  Hello everyone,
                  Well the appointment was today. I no longer have a decision to make....it's allready been made for me. Cholie's curve is at 85%. They will call me next week when they put her on the schedule for surgery. Looks like will be in October as of today. Thanks to everyone for the questions to ask the doctor, I did ask them and he answered them for me.
                  Will keep you posted.
                  Cholie's Mom

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                  • #10
                    Good luck with everything. I hope it all goes well for your whole family.
                    Best wishes.
                    Cheryl

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                    • #11
                      Waiting for surgery is a horrid time - if you need to have a good rant we're here for you.
                      Sounds like Cholie will have her surgery before Gen - our wait is likely to be nearly a year (in spite of government claims to the contrary - they lie though their teeth!) unless our next check up shows a big increase in which case they'll bump us up the queue.

                      How much of Cholie's spine is to be fused? Gen will be from about T3 right down to her pelvis.

                      Hang on in there,

                      Lorrie

                      Comment


                      • #12
                        cholie

                        It looks like about the same- T-3 down. Doc says she has lost about 3-4 inches of height due to the curve. After seeing the x-ray it really makes me wonder why she isn't having a hard time breathing. I would think the ribs are affected but Doc says not yet. Doc says she is able to "stretch". The main problem we will have is that her current seizure meds (they are weening her off of) has caused her platelet count to drop. So that may put another delay unless we can get her count into normal range. Could anyone tell me extactly what they will do? Doc said straighten spine, use rodsand they are going anterior and posterior. I have a medical background, but it didn't help because my head was swimming...as person can only take in so much at a time and I was concentrating on the degree of the curve. The are going both anterior and posterior. From what I have heard, she has one of the best surgeons in the area doing the surgery. She will be at Rainbow's Babies and Children's in Cleveland. I know they are the best hospital due to my oldest son. He has a serious heart condition and they have saved his life more times than I can count. I am on a first name basis with a lot of the staff!!! (Isn't that just sad?!?!?!
                        Will keep you all posted.
                        Cholie's Mom

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                        • #13
                          Hi again,

                          Sorry to hear about your son's problems - it does sound like you've got a lot on your plate (understatement of the week) but it does help going to a hospital where you know the staff and feel "at home". I always worry more if we end up in a strange new one - which has happened once or twice in the last few months - Gen likes to kepp us on our toes.

                          Obviously, I don't know exactly what they're planning for Cholie but my guess would be that, if they are going both anterior and posterior, her curve is quite stiff. When they go in anterior (more to the side really, I think) it is in order to remove some discs in order to make her spine more flexible. This could cost her some rib which they might then us as part of the bone grafts when they do the fusion from the back. (comes in handy says my surgeon - you can never have too much bone!)
                          When they do the posterior procedure they will straighten and untwist her spine as much as possible using bone grafts between the vertebrae for new bone to grow on as a kind of fframework and keep the whole thing stable with the rod until it fuses.
                          Sometimes they take bone from the pelvis for the grafts but with Gen, and I would reckon from what you said, with Cholie too, this won't be possible because they need to keep the pelvis strong so they can fuse to it so they will use bone bank bone.

                          The two procedures can be done either at the same time or the anterior can be done about a week before the fusion. If Gen needs both (we won't know till nearer the time when they test her spine to see how flexible it is) they will be done a week apart as our surgeon reckons that people recover better if they're done separately. He did say that that's purely anecdotal and just based on his experience rather than any particular studies so don't panic if yours is doing them together. Info I've been able to find doesn't seem to suggest any great advantage or disadvantage either way so I'd be quite happy to go with whatever your consultant suggests.

                          Hope this is of some use.

                          Lorrie

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                          • #14
                            The bone graft does not necessarily need to be from the rib or pelvis. I had a cadevar bone graft - my doctor uses them on all of his patients. This may be a good choice for you because I have heard that the bone graft from the pelvis is more painful than the fusion itself! I had ribs removed, but they were not used in the fusion - I'm not sure why.
                            Charlotte

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

                            Comment


                            • #15
                              As far as I know the bone from your hip takes the best, then the rib and the donor bone. I think it is just the doctors preference as to which way they go.
                              Cheryl.

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