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Just found out my 12 yr old has Scoliosis :o(

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  • #16
    I saw the pictures of your daughter. If you look closely at the picture of her standing up straight, I noticed that one side dips in. I am by no means a professional but it just doesn't look the same to me. As for her not starting her period-and not weighing 100#-I've never heard that before, but I don't think that is true. My daughter is 13 1/2 y.o. and hasn't reached 100# yet and she started her period two years ago. Hang in there and keep us posted. We're all here for you.

    Mary Lou

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    • #17
      Originally posted by nikyergen
      But, if he can't give you degrees of curvature, he hasn't done his homework on your child. Did he tell you if your daughter has one curve, or two curves.

      I showed him the xrays but he says they arent the TYPE he is looking for. He wants from her shoulders down to her hips. So I told him I would get more xrays when I take her to her regular doctor Wednesday. Im sure they will want to take more their too.

      You can't just look at the xray and say this or that. This stuff can progress, and very well could as she get older. On the other hand, it may be as bad as it's going to get too. This could be functional and not structural. But, the specialist will get to the bottom of it, and if it is functional, get to the source of the problem.

      Keep in mind that the treatments for this can get expensive and Shriner's Hospital does all the services, from start to finish, for free. Keep this in mind since you don't have insurance.


      Actually I have Medicaid until my husbands insurance kicks in and we will have Blue Cross Blue Shield. But that is great to know about the Shriners


      Next time you see a parade and you see a bunch of men in Red Fezz Hat's, tell them thank you for the work they do. They raise money all year long to support the Shriner's Hospitals.

      We see them all the time around here standing on corners asking for money. My husband really like them

      Please keep us posted as you go down the road.

      Oh I will. I need all the info, help and support I need and so does my daughter. I really appreciate how great everyone is on here!


      Don't get upset over anything you find out. These things happen.


      I know what youre saying but I am the biggest worry wart as they would say LOL..She has already made up a thing on the computer all about scoliosis and copied pictures and made out like a whole report on it, shes really into finding out more information on it.


      I will keep you in my prayers. I really do appreciate that. Thank you so much! Good luck with your children also! I might as well tell you all my name since Im the one that posts more than my daughter, I am Tammy.


      'til later,
      Nikki
      For some reason it says my message is too short I have to add 10 characters so hopefully this last sentence will help LOL

      Comment


      • #18
        Krystal

        I have 2 daughters that have scoliosis. I have had it since 11 1/2. I want to let you know first that being scared is o.k. But to your daughter this is the most horrible thing she can imagine. By all means downplay it. It will consume everything she does or doesn't do. I remember my mom telling me no p.e. The only thing I loved. Let her be normal.

        I actually did say that to her. I thought playing around, jumping, bending, twisting would make it worse.


        I saw the pictures and wanted to remark that she has a curve about like my 7 year olds. It is starting out. By no means did that bat swinging cause it, maybe from the swinging it caused a slight shift that would feel like burning.

        Some people think it was from the swinging some people dont. Im so confused right now. But I do know that I have been telling her for over a year now that her shoulder blades were sticking out really bad and it looked horrible. I was trying to get her to stand up straight thats why I told her that it looked bad hopeing she would stand up straight. Now Im wondering if it was the scoliosis? Oh and she said that it hurt really bad to breath in right after she hurt her back that night at the batting cage.


        I did that way after I knew I had scoliosis. There are many treatments out there. I have a left curve and if I am not mistaken the left is the worst due to the pressure on the rib cage near the heart.

        Unless my husband got it wrong he said the Chiropractor said the curve was to the right and that was the worse one because it was going towards the heart. Maybe it was to the left since he said something about the heart.

        So dont let them scare you like that whichever way. It is no where near the terrible sickness children go through with say cancer. This is a mild to sever deformatey it can be fixed and she will live a great life. she can have kids work whatever she wants to do.

        I asked the Chiropractor last night will she have to wear a back brace? He said "No she wont" He thinks he can fix it.


        Tell her for me to stay in school and have a nice cushy job LOL. I opted to go a different route and now another surgery is inevitable.

        I will and sorry to hear you have to have the surgery now

        I give my girls a massage to ease the stresses on there backs.

        I have thought about that too. I actually did rub her back the other night hoping it would help some.


        Stay calm for her sake. Tell her it is all good. I will try my best Tammy


        Krystal

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        • #19
          Mary Lou

          I saw the pictures of your daughter. If you look closely at the picture of her standing up straight, I noticed that one side dips in. I am by no means a professional but it just doesn't look the same to me.

          No its not just you. Her right side in the picture does sink in more than the left. It looks like she has no hips on the left side. But I do have to say since we have gone to our Chiropractor twice since Friday it HAS improved. I will take some more pictures as soon as I get some batteries for my camera.

          As for her not starting her period-and not weighing 100#-I've never heard that before, but I don't think that is true. My daughter is 13 1/2 y.o. and hasn't reached 100# yet and she started her period two years ago. Hang in there and keep us posted. We're all here for you.

          She shows all the typical signs of her period coming soon. She is majorly cranky in the morning, and her body is changing if you know what I mean She would kill me if she knew I was posting this about her LOL....Tammy

          Mary Lou

          Comment


          • #20
            Tammy,
            It is so nice to have a first name for you. I don't know about you, but I get tired of being someone's mom or someone's wife. I like having an identity.

            It is okay to get the adjustments at the chiro, because it does releave some discomfort. That is the only way my daughter gets through basketball season. It keeps her lined up enough to play. However, scoli isn't something a chiro can fix.

            We have Blue Cross/Blue Shield for insurance too. But, there is a portion they won't pay, some of the treatment the insurance considers experimental and won't pay for, and I can't afford that. So, before you have any treatment find out what your insurance will pay, so you aren't surprised.

            I am glad your husband likes the Shriner guys. My husband is one of them. And, I am so thankful for the work they do. Never thought we'd have to use them though. But, we are and that is that. I even argued that my children weren't crippled. Someone looked at me and said "If you don't get them treated, they will be crippled." That was all it took for me. I have also had a great support team here from all the Shriner guys. But, you have to really enjoy a bunch of old grey haired guys. They are a lot of fun to be around. Our Shriners here host a huge football game in August. It is all graduating seniors that are nominated to the teams. We call them the East/West games. There are numerous East/West Shrine Games all over the nation. All the proceeds go to support the hospitals. My 16 year old daughter will be the East Queen for the 2006 year.

            Keep your chin up. Keep you faith in God.

            'til later,
            Nikki

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            • #21
              Thanks for all the comments. I just checked my daughters back tonight and since she has been going to the Chiropractor her back doesnt have that hump anymore and her hips are almost normal again. I do think it is helping. I am still keeping my appointment tomorrow morning with the pediatrician. I am hoping they will do xrays so I can see for myself if anything is wrong. Ive looked at enough xray pics online to know what to look for LOL...I will keep you all updated.



              Tammy

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              • #22
                I went to pediatrician today

                This is what the doctor told me. She obviously wants me to take her to a orthopedic surgeon tomorrow morning at 9:00 am. She says she does have scoliosis and I told her what the Chiropractor said and before I could tell her that he said he could fix her she goes " I bet he said he could fix her back" I said, yeah he did. She goes, "you cant fix scoliosis" She also said with my daughter having back pain she thinks she may have something wrong with one of her disks. She seems to think that she had scoliosis before the back injury that we just didnt notice it until now. I will let you know what the Ortho says tomorrow..Man this is getting aggervating!

                Tammy

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                • #23
                  Tammy,
                  I know how frustrating this can get, remember I have three daughters with it. I am sorry that the doctor confirmed your fears. I am so glad you are going to the Orthopedists tomorrow. It's just, that I've went your route and, today, I really regret it. Reading your threads was like walking in my shoes all over again. My heart really goes out to you and I am keeping you in my daily prayers.

                  I will tell you a little story about our chiro. When we asked him about our oldest daughter, he told us it was just lazy posture, so we believed him. He said he could fix it. She asked him numerous times about a brace to correct her posture, he said there wasn't such a thing. Believe me, after we got done at the Ped.Ortho, he got an e-mail from me. I was nice about it, but also let him know that he should of been referring us on to a specialists, since this was so far out of his league.

                  I know on the other board you were upset that all anyone talked about was having surgeries. That is the worst case scenario. Remember, I have three girls with this. One is a wait & watch, one is in a brace, and one is having surgery next Tuesday. We have from the best case scenario to the worst case scenario. Actual symptoms, other than the posture aren't clear. The doctors will sometimes tell you that there is no pain with scoliosis. Well, I can tell you there is with my oldest daughter. But, what it actually is, is muscle spasms from her spine pulling so bad. Ask the Ortho tomorrow about putting her on Aleve, it really seemed to work for my daughter.

                  Hang in there. You will get more comfortable with dealing with this. You have to pick up the pieces and go on with life as normal. If your daughter wants to play softball, or do other sports let her. Mine do basketball, track, volleyball, plus all the stuff on the ranch that they are into. Be normal and do normal things. Keep her active. Don't turn her into a couch potatoe. Don't feel anyone was ganging up on you. We were all just telling you our personal feelings and we knew what the chiropractor would tell you.

                  Anyhow, let us know how your appointment goes tomorrow. See if your husband, another family member, or friend can go with you. You will have a lot to remember. Take a note pad to take notes. Make a list of questions tonight. And ask them. If you thought of them to ask, they are worth asking. There is never a silly question.

                  Keep strong. And we will all have you in our prayers.

                  'til later,
                  Nikki

                  Comment


                  • #24
                    Tammy,

                    Please don't think that all Scoliosis patients end up having surgery. Surgery is the VERY last resort. My daughter had surgery three months ago. We saw five doctors in three different hospitals; we tried a Milwaukee brace and also a Boston brace in addition to doing physical therapy and still ended up with surgery. Why did Jamie need surgery? Several reasons: 1) she wouldn't wear either of her braces; 2) she has not only Scoliosis but also Kyphosis; 3) her numbers were pretty high when she was diagnosed; 4) she has reached skeletal maturity and her curves still continued to progress. So, yes, surgery was necessary.

                    It seems that a lot of people are having surgery on this forum. I know there a lot of people out there dealing with wearing a brace, but once you get over the initial shock of the diagnosis and get past the start of wearing a brace, you don't really need as much reassurance as we parents do when our children are facing surgery. Have you ever checked out Spinekids? You'll find a lot of pre-teen and teens on that forum who wear braces and do very well. Most kids do very well with their brace but my daughter was just not one of them.

                    Good luck tomorrow. Let us know how you make out.

                    Mary Lou

                    Comment


                    • #25
                      Tammy,
                      I woke up with you on my mind this morning. How was your appointment at the Orthopedic surgeons. I want you to know that we are really trying to support you. I've been dealing with this since the middle of August, 2004. Some have dealt with it for years, some less time than I. It is no easy task. There is no simple answer or no simple way to fix the problem. But, it is something that can be treated and everyone go on with life.

                      Oh shoot, we all feel guilty about it. We wonder why we didn't notice it and what did we do wrong to let it happen. There is no answer for any of that. A friend of mine that has a daughter in a brace for scoliosis is the one that saw it in Crystal. She was getting ready to show her show ram and was looking at the ram. She saw Crystal bend over to pick up a brush and noticed the hump in her back. She told me which pediatrician to see in town and to have all of my girls checked. Boy, was I shocked. Her daughter is like our daughters are. Very active and needs to go on with life. I have another close friend that I hadn't talked to since in a while. I found out that during our absence of contacting each other her daughter had to have scoliosis surgery, which explained our absence of visiting. Our high schools play in the same league, so when they played each other at a basketball game, we sat together and she reassured me that everything, with all my girls, would be okay. You will find that now that you have child with scoliosis, you will really start looking at other people, young and old, male or female. You will notice a lot of uneven shoulders and actual curvatures in the spine that go undetected or untreated.

                      I spent a lot of time on the internet searching for information and answers. I finally quit, not that you should. You need to be comfortable with your information. I had finally decided that God was going to take care of my precious girls and I just had to trust him. That is the only thing that is going to get me through Crystal's surgery on Tuesday.

                      Oh, sure, I have an incredible family support system. But, sometimes I feel alone, like you do. My husband has been the best, while he usuall doesn't say much. He has been reassuring this past week, while I have been my most uptight. We talked last night and he reminded me that we have one of the best doctors in the world taking care of our daughters and that God will always be on their shoulders watching over them.

                      Did we ever slow down with our girls? No, not one bit. We have treated them as life goes on as normal. We never told them they couldn't play their favorite sports or do their favorite things on the ranch. We have encouraged them to stay active.

                      I know I am getting long winded. But, I am hoping that I will say something to help you feel better. I hate seeing you so distraught over this.

                      Let us know how you appointment went today. You are in our prayers.

                      'til later,
                      Nikki

                      Comment


                      • #26
                        Hey All,
                        I wanted to tell you all that don't think of surgery being so bad. It is dreaded by us as parents because we don't like to see our children like that. I had back surgery when I was 16 and I don't remember the pain. I felt 100% better after the surgery. I recovered quickly. If I had not had it my spinal cord would have never grown anumore than it did. I would have been paralyzed and never would have been able to have children. I wish I had never had to work hard so I would not have to have surgery again. That will place a huge burden on my 7&9 year old. They hate to be disrupted on schedules so months of recovery for me will be hard on them too. I can't wait to get better though. I want to go back to working and living comfortable again.
                        I had a sleepover for my 7 year old and the little girls were playing puppy on the floor. One of them stayed farther back away from them all. I then noticed a scar on her back. I immediately went to her and asked if she was able to play and she looked at me like I was nuts. I was thinking she had a big problem or something. I took her took her to the side to ask her if her back was why she wasnt playing (because they would have played something else fast), she said no I just don't want to be a puppy. My back never hurts. I asked what happened. She said when I was a baby I had a tumor on my spine and it had cancer in it. I almost fainted hearing it. I thought at least with scoliosis I would never run a risk of losing my child due to cancer. I thank God everyday for my girls. I almost wasn't able to have them. They both have the back problem like I do and it made me crazy to think it was my genes that did it. But they too will find there strength through trials like this. It can always be worst. Chin up. Take care.
                        Krystal
                        Diagnosed 11 at school screening, surgery 16.
                        Had Harrington rods w/fusions.
                        Luque-thorasic.
                        Full term pregnancies,no major issues.sciatica with the first. Epidurals with C-sections
                        2005:lumbar reconstruction, 2 plates, 6 screws in sacrum, and 2 cages with my own bone.
                        2007: cervical surgery to correct 4 bulging discs, two fusions with cages using cadaver bone.
                        Both of my daughters have scoliosis. Both were diagnosed by 7.
                        http://spinedoctors.md/ Dr, Jospeh Flynn Jr

                        Comment


                        • #27
                          Update on Lanna :O)

                          Yes its good so far She went this morning and they said she does have scoliosis but its not like what you think. If you look at her spine from straight on it looks like a straight line. But somewhere in the middle the vertebra's are twisted instead of curved. Does that make sense? He said if he had to measure anything it would be less than 5% He said he sees no need for a back brace or anything. But he would like to see her again in 6 months since she hasnt started her period yet. He also said that he thinks the reason her back has straightend out since we have been going to the Chiropractor she probably just had some muscle strained and they were pulling. He did have us make an appointment to go get a MRI done on her lower back stomach area. She is still complaining of pain their. He said with scoliosis their is no pain. I know one of you said your daughter does have some pain. As far as me being mad because I was only hearing about the surgeries that wasnt the case I just wanted to hear more of the before things like how did they look and how did the kids feel before they found out. No biggie So I guess so far everything is really great!!!

                          Tammy

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                          • #28
                            Tammy,
                            We are all so glad for you. Do be sure to get your appointment for six months. Like I told you I have one that sees the Ped Ortho every three months and one that sees him every six months. Every case, varies. There is no set pattern to any of this. All three of my kids show different signs and have different levels of problems. I think what some of us were trying to get through to you is that, every single case is very different. I am glad she had a pulled muscle, and that the sports injury didn't cause the scoliosis. As far as a lot of the before things. Some of us never had a chance at the before things. Surgery was the treatment. By the time you get to there, bracing, etc., doesn't help. That's why we went straight to the surgery option.

                            Take care. And go on with life as normal.

                            Nikki

                            Comment


                            • #29
                              Hey Tammy,
                              I had a twist like your daughters too. Maybe when you go to do the M.R.I. you will see if it is pinching a nerve. I really hate when people say people with scoliosis doesn't have pain. It is like a man telling you child birth doesnt hurt. LOL. Everyone is affected differently. If you have a twisted spine the nerves are pressed on can hurt. So for them to say someone with scoliosis, that they aren't feeling pain from it, is just plain ignorant. My younger daughter has a 5 degree curve also and she complains alot of back pain. She points to the same place. All the muscles spasm to try to keep the spine straighten. My chiro has a site I think I gave it earlier but I will give it again. It helps to understand all of the back.
                              www.DrRacine.com

                              www.uppercervical.org (I swear by this technique) pill free for 4 months.

                              KRYSTAL
                              Diagnosed 11 at school screening, surgery 16.
                              Had Harrington rods w/fusions.
                              Luque-thorasic.
                              Full term pregnancies,no major issues.sciatica with the first. Epidurals with C-sections
                              2005:lumbar reconstruction, 2 plates, 6 screws in sacrum, and 2 cages with my own bone.
                              2007: cervical surgery to correct 4 bulging discs, two fusions with cages using cadaver bone.
                              Both of my daughters have scoliosis. Both were diagnosed by 7.
                              http://spinedoctors.md/ Dr, Jospeh Flynn Jr

                              Comment


                              • #30
                                I believe that the reason some doctors say that scoliosis doesn't cause pain is because many people with scoliosis, even some with severe curves, do not have pain. (I had scoliosis most of my life, but didn't have back pain until I was in my 30's.) If scoliosis caused pain, than everyone would have it. Instead, I believe that what happens is that the curving and rotating of the spine can cause other problems like facet joint dysfunction, which can cause pain.

                                One way or the other, I think medical professionals need to understand that when they tell their patients that "scoliosis doesn't cause pain," many patients feel that the doctor thinks they're exaggerating their pain.

                                --Linda
                                Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                                ---------------------------------------------------------------------------------------------------------------------------------------------------
                                Surgery 2/10/93 A/P fusion T4-L3
                                Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

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