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  • Newbie on the Block...

    Hi.

    I'm Chudi and I am new here to the forums. This is my first post and I don't really know what to put down. So, I guess I will tell a little about my background, and I hope things take off from here.

    Im 19 and I have had scolosis for about 7 or 8 years now. Im not sure when it first started developing, but my family and I first recognized when I was about 14 and just starting high school. I was flat out scared when I first heard that I had scoliosis, and I can remember my mother crying right there in the doctor's office. What made it worse? He said I have no other options to treatment except surgery.

    My mother would NOT have that, seeing as that I already have a sibling with scoliosis, and it was hard for him to adjust to life with it, so she didn't want that with me. At the same time, she didn't want surgery, so we went for bracing instead.

    Long story short, I got the brace, and surprisingly, I went through a couple of them. I still have a big curve, and I'm living day to day now, with college and all.

    If no one minds me asking, could anyone share how their experiences were when they found out they have scoliosis? Did you find anything your doctor did for you to be helpful? And finally, can anyone pass some advice along about how to deal with bracing? I know, it may be a dumb question, seeing that I had to wear a brace for years now, but I still worry about how it looks on me, and how helpful it really is.

    Thanks a lot guys.

  • #2
    I found out I had scoliosis when I was 15. My curve was progressing quickly and the doctor told me that if I didn't have surgery, I would be dead by 30. I chose to have the surgery. Back in the 70s you spent a month in the hospital and I spent 9 months in a plaster body cast. The only clothes I could get to fit over it were maternity clothes. It was not fashionable to be pregnant in high school back then and I got called a lot of names. I had a friend who found out at the same time he had scoliosis. He chose not to have the surgery and he died when he was 28.
    I am the mother of 2 and grandmother of 2. I carried both girls full-term and they were both almost 9 pounds at birth. One daughter had a small curve that she outgrew and the other developed hers the same as me. She had her surgery at 14 and spent 5 days in the hospital and had no brace or cast post-op. She is a college student now. Was going for early childhood education but has changed her major to occupational and physical therapy. She is very active. She teaches hip hop, ballet, and pointe (she loves to dance). Ahe didn't let her fusion stop her from dancing during high school or even now! I used to be a teacher. What I went through helped me understand special needs kids and be a better teacher.
    Scoliosis can only change your life if you let it. I kept doing what I enjoyed but just a little bit different. My daughter calls her donor bone Sir Francis and when she would get in trouble, she would say it was Sir Francis who did it.
    T12- L5 fusion 1975 - Rochester, NY
    2002 removal of bottom of rod and extra fusion
    3/1/11 C5-C6 disc replacement
    Daughter - T7 - L3 fusion 2004

    Comment


    • #3
      Hi:

      I'm sorry to hear about your friend from way back. That must have been really traumatizing. Reading about that kind of puts things in perspective for me: I guess wearing a brace isnt the worst thing in the world to deal with. Looking back, I could have accepted not to have ANY treatment done on me; needless to say, I'd be going through hell now. Thank you for sharing that with me.

      I am also happy to hear about your children and grandchildren. I thought it was kind of funny that she actually named her fusion site Sir Francis. I would have never been as upbeat as THAT for any type of major surgery like that.

      I myself am, or at least was active. I never played sports, but I did a lot of exercise, lifting weights...the usual. I stopped mainly because of pains in my legs and the insurmountable work I have to do in college. Luckily I havent gained weight...yet.

      Again, I have to thank you for sharing with me. It probably didn't take much, but its amazing how something as simple as a blog post can really make you stop and think. I know that what I have, scoliosis, is bad and not really what I want to have at this time of my life. But I can't let that stop me from doing anything. I have way too much on my plate to worry so much about it.

      Thanks for letting me see that.

      Comment


      • #4
        Originally posted by cokafor View Post
        If no one minds me asking, could anyone share how their experiences were when they found out they have scoliosis? Did you find anything your doctor did for you to be helpful? And finally, can anyone pass some advice along about how to deal with bracing? I know, it may be a dumb question, seeing that I had to wear a brace for years now, but I still worry about how it looks on me, and how helpful it really is.

        Thanks a lot guys.
        Hi Chudi.

        I am wondering why you are still wearing the brace. If you are female, then you are almost certainly past the point of skeletal maturity. If you are male, you have very likey passed that point. There is no evidence bracing prevents progression in skeletally mature patients.

        So the advice on how to deal with bracing would be to stop wearing it. Please ask an expereinced board-certified orthopedic surgeon specializin in scoliosis this exact question.

        Do you know the angle of your curves and where they are located?

        I can only imagine how my daughters felt when they were diagnosed. I know my husband and I were shocked and depressed. We got over it.

        The surgeon did help them... he fused them. They look and feel normal. They are not expected to need any further surgery for their scoliosis. They have moved on.

        Good luck.
        Sharon, mother of identical twin girls with scoliosis

        No island of sanity.

        Question: What do you call alternative medicine that works?
        Answer: Medicine


        "We are all African."

        Comment


        • #5
          Experiances

          Chudi,

          Welcome. Here is a great thread that talks about Brads experience, and also mine when we found out we had scoliosis. Please remember that this was many years ago and things have changed quite a bit since then. Dr Bradford is a scoliosis pioneer.

          It’s a long one, but it’s a great read.
          Ed

          http://www.scoliosis.org/forum/showthread.php?t=9393
          49 yr old male, now 63, the new 64...
          Pre surgery curves T70,L70
          ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
          Dr Brett Menmuir St Marys Hospital Reno,Nevada

          Bending and twisting pics after full fusion
          http://www.scoliosis.org/forum/showt...on.&highlight=

          My x-rays
          http://www.scoliosis.org/forum/attac...2&d=1228779214

          http://www.scoliosis.org/forum/attac...3&d=1228779258

          Comment


          • #6
            Originally posted by Pooka1 View Post
            Hi Chudi.

            I am wondering why you are still wearing the brace. If you are female, then you are almost certainly past the point of skeletal maturity. If you are male, you have very likey passed that point. There is no evidence bracing prevents progression in skeletally mature patients.

            So the advice on how to deal with bracing would be to stop wearing it. Please ask an expereinced board-certified orthopedic surgeon specializin in scoliosis this exact question.

            Do you know the angle of your curves and where they are located?

            I can only imagine how my daughters felt when they were diagnosed. I know my husband and I were shocked and depressed. We got over it.

            The surgeon did help them... he fused them. They look and feel normal. They are not expected to need any further surgery for their scoliosis. They have moved on.

            Good luck.
            Hi:

            Im wearing the brace now because my family and I chose not to have surgery earlier. I wear it to stop some of the pain I have when I don't have anything on.

            For the degrees of my curves, I dont know specific numbers, but as of now, they should be between 35-50. Thats a gross estimate. I also have a double curve thats in the thoracic and lumbar areas.

            I personally want to have surgery done now, rather than later, but my family would not prefer so. I know I will have to eventually, its just a matter of time.

            Comment


            • #7
              Originally posted by titaniumed View Post
              Chudi,

              Welcome. Here is a great thread that talks about Brads experience, and also mine when we found out we had scoliosis. Please remember that this was many years ago and things have changed quite a bit since then. Dr Bradford is a scoliosis pioneer.

              It’s a long one, but it’s a great read.
              Ed

              http://www.scoliosis.org/forum/showthread.php?t=9393
              Hi Ed:

              Thanks for the link. Unfortunately, I cant read it all now because of schoolwork, but I will definitely. If you dont mind me asking now, do you think you pass along any contact information for Dr. Bradford? I would like to speak with him about myself personally, and then ask some questions about scoliosis in regards to other young adults my age.

              Again, thanks.

              Comment


              • #8
                Chudi

                Dr Bradford has retired....

                It would be best to talk to a "scoliosis surgeon". Not just a regular Orthopedic, but one who does ONLY scoliosis surgeries, and on a regular basis. My surgeon did 19 years of schooling with a fellowship. When you study the spine that long, you don’t do knees. If you need help finding one in Jersey, we can post lists for you.

                Just because you talk to one doesn’t mean that you have to make a decision. Its just good to have one you like and trust, and have documented dated x-rays burned to disc (if possible) for future comparison. Its good to have these in your possession in case you move or the Doctor throws out your records. I've had this happen to me years ago.

                I used to wear a brace years ago, I know what you mean by stopping the pain or at least reducing it. I used to ski in my brace! Believe it or not, it was cold.
                Wearing it will not correct your curves, or necessarily "hold" them. I did have twin 50s when I was your age and my curves held for many years.

                We have a great group of experienced scolis here. Ask any questions you like.
                Ed
                49 yr old male, now 63, the new 64...
                Pre surgery curves T70,L70
                ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
                Dr Brett Menmuir St Marys Hospital Reno,Nevada

                Bending and twisting pics after full fusion
                http://www.scoliosis.org/forum/showt...on.&highlight=

                My x-rays
                http://www.scoliosis.org/forum/attac...2&d=1228779214

                http://www.scoliosis.org/forum/attac...3&d=1228779258

                Comment


                • #9
                  Hi Ed,

                  I guess I should talk with a doctor. Better yet, have my mom talk with him also. I think she is convinced that the brace will straighten me out, litterally. Over time, I realized that it wont actually do that. But I guess I will have to see about that, won't I?

                  Also, if you don't mind me asking two questions this time, would it be possible to get a list, or post, of specialists around the tri-state area (nj, ny, etc.)?

                  I remember the first time I went to Shriner's Hospital in Philadelphia, and the visit I had with a local orthopedist in my city. They both said, flatly, that I would need surgery right then and there. I don't remember any of them offering any type of consolation. My family and I pretty much dealt with what we felt on our own. I just want to know, did you ever encounter a physician who, after giving his diagnosis, didn't really offer much help besides a drastic decision? I ask because I assume you were faced with the decision of whether to have surgery or not at some point.

                  Anyways, thanks again,
                  Chudi

                  Comment


                  • #10
                    Chudi

                    It would be a good thing to go to a "Scoliosis" surgeon. Any other Doctor just wont have that expertise and cannot offer "credible" data. Yes, take your mom. 2 heads are better than 1. Its ok not to make a decision, that’s fine, but at least have an expert take a look, and get copies of your x-rays for future comparison.

                    The bracing thing.... Well, I wouldn’t worry about having to wear it. You can wear it to help with pain, but in the long run, if you are a candidate for surgery, with 40s or 50s, someday you "might" need surgery. You can get "temporary" correction,(I've been there, and have documented x-ray proof) BUT, it just wont hold. I tried, and many others have also.

                    Yes, I was told that I needed surgery in 1975. Man-O-man! Woah!, lets put the brakes on Doc! You want to do what? I'm an active skier! Well, you know I waited.

                    You must be in southern Jersey if you went to Phily. Some of the well known are up in NYC, Dr Boachie at HSS Hospital for Special Surgery, Dr Errico etc. Linda has a list on her site. Take her quiz.
                    http://www.scoliosislinks.com/
                    http://www.scoliosislinks.com/ScoliosisSpecialists.htm
                    http://www.srs.org/find/

                    I'm sure there are good Docs in Phily.
                    Let us know what you decide.
                    Ed
                    49 yr old male, now 63, the new 64...
                    Pre surgery curves T70,L70
                    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
                    Dr Brett Menmuir St Marys Hospital Reno,Nevada

                    Bending and twisting pics after full fusion
                    http://www.scoliosis.org/forum/showt...on.&highlight=

                    My x-rays
                    http://www.scoliosis.org/forum/attac...2&d=1228779214

                    http://www.scoliosis.org/forum/attac...3&d=1228779258

                    Comment


                    • #11
                      Hi Ed,

                      Sorry for the delay in responding. Schoolwork is killer, as usual...

                      I would like to speak with some surgeons about my current situation. If you could give me a couple names and addresses that I can contact, I would really appreciate it.

                      Going back to the schoolwork, I was wondering if I could ask you your opinion about this plan I am trying to propose for a school project. I am researching scoliosis and its affects on adolescents, and as a potential solution to the problem of noncompliance with some of them, I want to incorporate something of a new addition to the curriculum of medical schools to additionally prepare them to handle the psychological aspects of handling adolescent patients.

                      Do you think that would be a good idea? If not, do you mind giving me some advice on how I could make it better? If you do like it, what else do you think I should add to it? I really do appreciate the feedback.

                      THanks a lot,
                      Chudi

                      Comment


                      • #12
                        I will look forward to what advice Ti Ed has for you but I was confused by this part...

                        Originally posted by cokafor View Post
                        and as a potential solution to the problem of noncompliance with some of them,
                        Non-compliance with what and what problem does that cause?

                        Just wondering.
                        Sharon, mother of identical twin girls with scoliosis

                        No island of sanity.

                        Question: What do you call alternative medicine that works?
                        Answer: Medicine


                        "We are all African."

                        Comment


                        • #13
                          do you mean non-compliance with wearing brace?

                          jess

                          Comment


                          • #14
                            Originally posted by jrnyc View Post
                            do you mean non-compliance with wearing brace?

                            jess
                            Hey maybe you are right.

                            Chudi I hope you aren't beating yourself up over non-compliance with brace wearing. There is no good evidence bracing works. After all these years. Considering all the studies and all the commentaries on bracing, you can never assume bracing lets anyone avoid surgery.

                            Medical schools know this.
                            Sharon, mother of identical twin girls with scoliosis

                            No island of sanity.

                            Question: What do you call alternative medicine that works?
                            Answer: Medicine


                            "We are all African."

                            Comment


                            • #15
                              Chudi,
                              I agree on the bracing thing. I’m also assuming this is what you mean by non-compliance. Bracing is an attempt, like traction, performed by Hippocrates in 400BC. People have been debating this for 2400 years, and still don’t know the pros and cons on this. Lately, I have read about dangers involving traction. Hmmm...

                              Check out the links I posted for a surgeon. Linda’s site and SRS. Insurance companies don’t like it when you leave your home state.

                              I found out I had scoliosis when I was 16. I can offer some views from an older perspective. You know, Brad would be great at this... He was a congenital, so he would be of great assistance. He truly is a trooper and had an extreme surgery done by a master back in the day. He also has a fantastic attitude.

                              I think that education and communication about scoliosis with a child is key. The correct amount of facts given at the proper age with positive flair is the way to approach this. No child needs to know about extremely rare complications from surgeries.

                              You would have to think of questions to ask, how you want to structure and we will try to answer. Do this, and I will PM Brad. You could start a new thread on this.

                              Sharon
                              I will reiterate....Love your sig! Comedy on every post!
                              Ed
                              49 yr old male, now 63, the new 64...
                              Pre surgery curves T70,L70
                              ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
                              Dr Brett Menmuir St Marys Hospital Reno,Nevada

                              Bending and twisting pics after full fusion
                              http://www.scoliosis.org/forum/showt...on.&highlight=

                              My x-rays
                              http://www.scoliosis.org/forum/attac...2&d=1228779214

                              http://www.scoliosis.org/forum/attac...3&d=1228779258

                              Comment

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