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  • what to do

    Hey, I'm brand new. I'm 15 years old and last summer I was diagnosed with scoliosis. I went in for x-rays which came out as an 18 degree curve. So my doctor sent me to a orthopedic doctor. Which I got my x-rays done there also. But when it came back it was a 30 degree curve! I was so confused. But since my insurance changed I have to go to another doctor. I still haven't seen them because my other doctor never sent the referral and she's on vacation for a month!! But at my old Orthopedic doctor he sent me to a physical therapist for my hip and back. But that didn't do ANYTHING!!!!!!!! ERRRR!
    But my back hurts very badly. It seems as though I am curving more and more to the left. My rib hurts so bad Its been hurting for a week now. I just need to know what I should do. Thank you all for reading this and write me back as soon as possible so I know what to do.
    ***ASHLEY***

  • #2
    Dear Ashley

    Hi, my name is Sheila and my daughter Miranda has been told she has scoliosis. I am told it is a very mild case, 10%. When I read your note I was frightened. As a mother I am concerned about this condition. We have not gone to the specialist yet. We live in a small town called Lindsay. It is about 1 1/2 hours north of Toronto, Ontario Canada. Maybe you could reply to me, it would be nice to talk to a young person with this disease. e-mail me back at sheilarisk@hotmail.com

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    • #3
      Hello to both of you!
      My daughter has 45* curve and lots of back pain and yes Ashley Leah does have a fair amount of curving around in the ribs. Rowing and yoga and swimming have been recommended; essentially the best shape you can be in is the better in terms of staying pain free. Bracing can be very effective at 30*and keep things from getting worse. A 10* curve can easily go away on its own.
      We are in Canada as well; thank goodness for insurance that applies to all doctors as I do not want to be changing doctors mid stream; ours is going to observe Leah and if that curve keeps progressing he will do surgery. Surgery however does not always alleviate pain, so it's best to do lots of physio and exercise to stay in the best shape possible. And if you do end up in surgery it's best to be in good shape anyways.
      I know what it is like to wait for answers. good grief. It always feels better to have some kind of game plan. Let me know how it works out.
      Carol

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      • #4
        Thanks so much for writing me!!!!!!!!!!
        How lobg have you known ur daughter had this?
        I'll get back to you when I go and get a new x-ray done. It just seems like no one cares about how I feel.

        Well, thanks again!!!!!!!
        ***ASHLEY***

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        • #5
          Helllo Ashley!
          My nqme is leah. I am carol's daughter and I know what you are going through! I have had scoliosis for almost a year and i am still waiting. I went to go see a couple docs in the states and I have seen one in canada(that'swhere I live) and I am really mad that I have not had any good answers yet. I think that I will be having surgery in june but I am not yet positive. I hope so because of all of the pain that I have been having. Well if you want write me back and ask some questions!
          Luv Leah me-xoxo Thinking of You(T.O.Y)
          P.S.-doctors will give you dumb-ass solutions for scoliosis sometimes so beware

          Carol here -- Ithink Leah feels about the same way you do.
          Ashley as you can see Leah is quite fed up with having to wait and there not being much she can do ...except for stuff she can't quite see the point of doing. I hope you can get into your specialist soon to get a really good idea of where you are at. At 30* they usually try to brace, because although surgery can correct, the doc this week said he has seen lots of cases where it doesn't help with the pain. so if you can try out all the routes for dealing with the pain --- and alot of the posts say try Pilates and yoga, rowing and swimming---you will at least be able to see what works and what doesn't. Because they will all suggest it And at the age 15, it is possible that it may not progress any further.

          I tend to believe Leah when she says some solutions are not quite up to snuff, but to be honest, she really needs to try the rowing to see if it will work. And I mean the machine daily for about 6 weeks. But I think that it is tough for teens to have to stop doing the sports they love and start doing more boring adult stuff that is about as much fun as flossing your teeth.
          At least she will be further ahead of the rest of us fitness -wise at the age of 50 when we all start to develop back problems, aches and pains and arthritis, because she will have the look-after-yourself-routine down pat
          Let us know how you are doing and when you see your doctor, let us know how it turned out. Progress is so slow, but at least it is progress.
          Carol

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          • #6
            scoliosis

            Thanks to the both of you for writing me.
            I had talked to my mom about this a while ago and she said that its hard to see me go through the pain, and it would hurt her to see me in a brace. But she said she'll do anything for me, to feel better. I asked my dad about it and he just ignores me. My mom says cuz he doesn't want to think about it.

            But yeah, When I went to my ortho last he said that there was a great possibilitie that it could progress to 50 before i turn 20.
            It's just hard cuz it hurts real bad and it feels as though I have been curving more and more to the side, which doesn't feel to good. My dad thinks it too, and wants me to see another doctor but he never does anything. But yeah...You guys are so cool to talk to me about this. It just seems as though no one around me has it and there is no one for me to talk to.

            So I guess I'll go for now but please write back!! I enjoy it!
            Thanks,
            ***ASHLEY***

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            • #7
              Hey ashley,
              I got your nrw letter and at this rate we will be writing 10letters a day!
              I hear that you said that your dad ignores you but my dad is totally the opposite. He treats me like i am going tto break and he always wants to talk about it. That's okay though...Guess what I have to take up rowing to strenthen my muscles. And the only other form of physiotherapy that I have'nt tried yet:aquepuncture. I know that it won't hurt though.
              Do you know what... I think that you really need to wear the brace because if you don't then the curve will most likely progress! You really don't want that to happen.
              Hey...I was thinking, I have had about 40 x-rays,and MRI's,andany other tests and there is a lot of radiation coming from them. So try and refrain from 2 many x-rays. I don't want cancer right after I deal with this.
              Well I have to go but I will write back later.
              Luv Lea Me-xoxo-T.O.Y

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              • #8
                Hey Leah!!!
                I wish my dad was like yours. Yeah, my mom is kind of like him. She doesn't want me to fight with my bro or sis or anything cuz she thinks I'm going to break cuz I'm so fragile. But I guess thats okay, tho. Geez that is alot of x-rays you have taken! Hopefully you don't get cancer! That would be horrible.
                Well, your right about the brace. I need to get one but I know I probably won't use it. Have you ever read the book Deenie? It's really good! If you haven't, then you should!
                Well, I guess I'll go now!! Talk to you later!


                T.O.Y.2!!
                ***ASHLEY***

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                • #9
                  Hey Ashley,
                  How are you?? I got your letter and I thank you for it. It sure is nice to talk to someone who understands!
                  I got a private lesson for ballet and yoga with this one lady because I have been having so much touble in real ballet class. I don't think that my real ballet teacher understands that I do actually have a problem. I don't do pe either in gym. I don't think that it helps my back that much and it always hurts too much. I just have a free block instead. I like it that way so that I don't have too much homework.
                  I have to go now bwcause sadly we have not taken down our x-mas decorations yet. Sorry
                  Luv Leah Me
                  xoxo
                  toy

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                  • #10
                    Hey!
                    Its alright we were late with our decor too!!
                    So, Your lucky you don't have to do PE! If I had know about my scoli than I wouldn't have had to do it either. This is great that I can talk to you because no one understands what I have been going through. But yeah, have you ever read Deenie? Cuz if you haven't its about a girl who gets a brace and stuff. I love it! But if you have thats great too. SOOOOOO.....................How long have you known u had scoli? How would you rate ur pain from 1-10? And which way are you leaning, cuz I lean to the left. I hate that cuz its bein more visible cuz I don't like wearing big shirts, and the tight ones show all the curves. Soo, yeah I guess thats all.
                    Talk to you later!
                    T.O.Y.2!
                    ***ASHLEY***

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                    • #11
                      Hi Ashley
                      It's Carol here. Leah loves Pe but I think it's nice to get an extra block for study time, too. But she actually hates missing PE and will join in when they are doing fun stuff like football and capture the flag. But then the back hurt s and she wishes she hasn't. she was saying her hips hurt too.
                      They did Yoga and Pilates today witht the private instructor and kind of liked the session so only time will tell if that will help. I'm sure she will fill you in on how it went
                      Leah wears the same clothes she wore before her curve and ribs began to show. You can have curves and wear cool clothes or you can wear uncool clothes and still have a curve. I say wear the attractive clothes. We all think people are staring at our figure faults when in reality most people are more worried about how everyone sees them. I know a girl who wears tiny tops over her brace and it looks quite stylish. we noticed the scoli May of last year. She leans to the right and her back has become very curved -- her ballet teacher hits her on the scapula to make it go back in. Crazy.

                      Let us know how you are doing.
                      Carol

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                      • #12
                        Hey!

                        Why the heck is her ballet teacher doin that? That is so mean!
                        I was just on ispine.com and was watching the movie on McKenna. I'm getting so mad at my doctor because she is not getting me my referral for another ortho. We keep calling her and she says "Oh, well we Justins (my bro) but not Ashley's, we just can't seem to find a doc yet". ( My bro has a cholesterol problem thing. His blood pressure is always high) So yeah, my back is hurting really bad right now. OW!!!
                        So when was the last time Leah went to the doctor?
                        Yeah, I guess your right I'll just stick with the more fashionable clothes. I hate wearing big shirts.


                        A funny thing that my dad says alot is that he thinks that my scoli will completely just disappear if I workout at the gym. I always try to tell him that, thats not all thats going to help it. He makes me so mad sometimes!!!!!
                        And....my step-mom, well, she is worse. She straightens me out as best as she can and tells me to walk around like that all day.


                        Well,gotta go
                        ***ASHLEY***

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                        • #13
                          Hi Ashley I'm sorry it's taken us so long to get back to you!
                          I don't know about your spine, but Leah's is spiral shaped so trying to stand up straight really doesn't do much good. going to the gym doesn't help the curve either, although many people say that doing the abdominals/ rhomboids strengthens the muscles and helps to manage the pain.
                          As far as getting a referral goes, our doctor could not do it as we live in Canada. So I got on our insurance provider's website and did a websearch to find apediatric orthopedic surgeon. the search returned quite a few names and then we made the appointments ourselves. Maybe you and your Mom could just do it by yourselves. It was a three hour drive to get to the appointment, but worth it as the dr. spent two hours with us.
                          It sounds as though your Mom has a lot on her plate with two kids with health problems. It is hard for all of you.
                          Leah's ballet teacher is just plain mean sometimes but she knows her stuff. But she is very discriminatory, so next year we will switch studios or find a private teacher.\
                          Leah had acupuncture yesterday in desperation to help her pain. So we will see how that goes. She says her back hurts from the acupuncture. Can't win for losing! But on the positive side we have had freezing rain so no school for the last 2 days! Yay!
                          Have you browsed the adult forums (forae) yet? there is some pretty interesting information on there from people who have had this condition for a while.
                          Take care
                          Carol

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                          • #14
                            Hey! How are you both doing? I'm doing okay. I'm staying home today because I have an ear infection. It hurts!

                            Yeah so, yesterday my doctor called and said she found an ortho for me but when my mom called them they said they don't even do anything to do with scoli. That was kind of weird. But I guess their still looking for me. Well, thats good that your going to get a private teacher for Leah, that'll be good for her. Yeah, I was just thinking about having my mom and I trying to get a doc, by ourselves. Well, she's still thinking about that right now.

                            I hope that acupuncture thing went well for Leah. It sounds scary. Did it do anything for her? What is it supposed to do? I only have heard of the name I've never really seen it been done.

                            Well, I'd better go! I gotta go rest.

                            T.A.B.O.Y!!! ( thinking about both of you!)


                            Talk to you later,
                            ***ASHLEY***

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                            • #15
                              Too bad about the ear infection! Those are painful. And too bad about the ortho. Do you live far from a large city? In our whole province, there is only one pediatric scoliosis specialist, so it takes forever to get in to see him.
                              But really hit the insurance people's website to see if you can find an ortho. There is actually a website with a search engine to find specialists near you, and I will see if I can find that link for you. then you can see if your provider covers him or her.
                              Acupuncture is different. They put needles in at certain points and then run electricity through them for 40 minutes and then do some massage. It takes a few weeks of treatment to get results. The needles don't really hurt; they are so fine they slide in between the nerves instead of puncturing them. It is supposed to cause the nerves to stop sending pain signals after awhile. It really works for some people.
                              We will see about the ballet. I talked to Leahs teacher and we have called a truce. And ballet is very very good for the back.
                              Well, have a good rest and get well soon. It is now raining here again and all the ice is gone, so we are all back to school.
                              Take care,
                              Carol

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