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Oldest person here with congenital scoliosis?

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  • Oldest person here with congenital scoliosis?

    I am 72 right now and have congenital scoliosis. The scoliosis is my big nemesis now. I'll be getting more pulmonary tests in late October to see how bad things are getting. I don't mind telling you.....this is no fun....and I know it's going to get worse. Staying positive minded is my standard way of thinking, but as things go on, I am wondering how posititive I will remain. I have no real pain from scoliosis, but it's my breathing that is the problem. It was bound to happen, but when I was younger, it seemed so far away. Now it's right on me. Thanks for letting me vent.
    TIMING IS EVERYTHING!

  • #2
    Hey Gerry!

    Vent all you want! Thats what we are here for.

    There are going to be days you get depressed and down, thats gonna happen, sometimes our fears for our future just catch up with us. But you know what? You have the love of a good man, and you have the love of your friends, you also have us here on these boards. All of us will support you. I know I have fears for my future, and I have no idea what is going to happen, but I have my wife who loves me and the support of my family who lift me up.

    So when you get down, just think of those who love you and are there for you. And come here and vent.

    Brad
    Surgeries July 26th & August 3rd 1983 (12 years old)
    Still have 57 degree curve
    2 Harrington rods
    Luque method used
    Dr David Bradford
    Twin Cities Scoliosis Center
    Preop xray (with brace on)
    Postop xray

    Comment


    • #3
      There is hope

      Gerry,

      I feel your pain. I am 62 and have a lung impacted by my spine. Causes breathing problems and due to the impingment my immune system is not up to par.

      I have been wearing the spinecore brace for two years and it has helped me a great deal. It is not going to pull my spine out of my lung but it has improved my curve by 7 degrees (I had a 65 degree "S" curve). After two weeks of putting on the brace all discomfort from my scoliosis disappeared and I had a lot more energy. The brace is very dynamic and easy to wear. It is something you might want to look into. I would think it would help and definitely keep the curve from getting worse. Check out www.scoliosissystems.com

      Comment


      • #4
        Thanks for the tip, carolbills. I looked at that site and it looks like that brace is for growing children. I'm glad it is working for you and you have more energy. At this stage of my life I just want peace and harmony and don't want any big, expensive productions. That's just how I feel about it, right or wrong. Had enough braces and casts when I was a young child. I guess I'm just tired of being tired, and tired of battling pneumonia all this year.
        TIMING IS EVERYTHING!

        Comment


        • #5
          i ended up with pneumonia because of not being able to take a deep breathe due to pain. I have had nerve ablations a couple of times to stop the pain so I could take a deep breath again.
          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


          • #6
            I don't know how I got pneumonia in the first place, but it wasn't diagnosed for a long time. Finally Xrays were taken and there it was. Since then I've had several rounds of antibiotics, and most recently, taking prednisone. I'll be on it till the end of October, and I hate it. I just don't feel good when I take it.
            TIMING IS EVERYTHING!

            Comment


            • #7
              Hi Gerry,

              I was wondering, if you don't mind my asking, if you ever had surgery for your scoliosis? Also, how has your curve been progressing throughout your life? Finally, what are the congenital issues causing your scoliosis?

              My son has congenital scoliosis and just had surgery but I wonder how he'll do throughout his life with a fusion so young. I rarely read about adults with congenital scoliosis here or elsewhere, that's why I'm asking.

              Thanks for answering (if you feel you can do so).
              Laurie

              Mother of Alexander & Zachary:
              Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
              Zach is 13 years old and very energetic.

              Comment


              • #8
                When one is born with a birth defect, I'm not sure if anyone (even a doctor) can determine why or how it happened, laurieg6. It could be anything, but probably NOT heredity.

                No, I have never had any surgery for the scoliosis. I did see a chiropractor a few times about 10 years ago, and I actually did grow about 3/4 of an inch. But it got expensive to go all the time. I would guess that my curve has had a very slow gradual progression, as I am 72 now. Most people get shorter as they age, and we who have scoliosis also do. This causes less area in the chest cavity eventually, and breathing problems develop. I am not sure what the degree of my curvature is. I never did know.

                I feel lucky that I haven't been in a lot of pain, and that I can walk and sit at my computer with little or no problems. I am thinking of getting a scooter type vehicle soon, so I can get outside and ride around on it, and visit some friends. I walk around the apartment without any walker, but when I walk down the hall to the community room, I do use a walker. It does help.

                Have I answered your questions? If not, I will try to clarify.
                TIMING IS EVERYTHING!

                Comment


                • #9
                  Gerry ... I have to ask - why have you not have your curve monitored vs. wasting money on a chiro? They're worthless for scoli - whatever you assume is the cause. How can you really KNOW?

                  Just me, but I can't imagine merely assuming the details.
                  Fusion is NOT the end of the world.
                  AIDS Walk Houston 2008 5K @ 33 days post op!


                  41, dx'd JIS & Boston braced @ 10
                  Pre-op ±53°, Post-op < 20°
                  Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                  VIEW MY X-RAYS
                  EMAIL ME

                  Comment


                  • #10
                    Here's the story. When I was diagnosed with congenital scoliosis back in 1937 or so (I was less than 2 yrs old), they were very primitive in their treatments....plaster cast or leather strapping, heliotherapy, traction. After a year or more of this, they found no improvement. We were not rich and since I was able to walk and go to school, etc. with no pain, my mother saw no reason for treatment. I guess it was assumed I would just live my life and she would protect me as much as possible against being hurt.

                    Fusion was experimental then and my mother was fearful that it would cripple me. She had heard of another case where this happened, and she decided that if I wanted to have it done later in life, I would make the decision, not her. I am glad she did nothing about that. She made the right call for me and I had no intention of fooling around with my spine. It's kind of late now to have surgery, since I am approaching the end of my life. Seems senseless to me now.

                    This is the way my life really was. I had no pain, I was protected, I went to school, then upon graduation from high school I went to work, and later on I bought a car, got my own apartment, etc. THings worked out for me.

                    Then about 1988 is when the pulmonary problems started and THAT is the main problem now. I have pulmonary arterial hypertension, which is not good, and it will only get worse. Of course, the scoliosis is a big factor in breathing, since with age we all get shorter, leaving less room in the chest cavity to expand our lungs. I am very short waisted, so it's worse for me.

                    I have always been positive minded and assumed that I was OK and that I would live life in a healthful way. I always was able to do what I wanted to do, within limits. I never wanted to climb a mountain anyway. So, I only went to the doctor if I had regular problems, like flu or other such things, like sinus infection, etc.

                    Around 1988 I did see a physical therapist and I was able to get a lift on my right shoe to help me walk better, with less of a limp. That was a good thing and has helped me.
                    At the moment my pulmonary problems are being monitored closely. I've been battling pneumonia for most of this year, but I think I have gotten rid of it now. Still on prednisone, finishing up my prescription. But I know eventually I will be in the hospice program and that my Big Moment will be coming up. Maybe this will be in a year or two, who knows. I am on oxygen 24/7 right now, but I may improve a bit after the prednisone is finished.

                    Thanks for asking, txmarinemom. --- May I ask if YOU are in pain now?
                    TIMING IS EVERYTHING!

                    Comment


                    • #11
                      Hi Gerry,

                      Thanks for responding to my questions and for telling us your story. I'm sorry you're having breathing problems right now and I hope the prednisone does help you to feel better soon.

                      I wasn't asking, though, why or how your birth defect happened. I was asking what it was that caused the congenital scoliosis. I think we have a difference in understanding of what congenital scoliosis is. My understanding of it is that to have a diagnosis of congenital scoliosis, there has to be specific malformations of the bones of the spine. My son has (had before surgery) one hemivertebra (half/wedge vertebra) with growth plates on one side of it only. The growth plates on only one side led his spine to curve toward the side with no growth plates. Some kids have multiple malformations of various kinds that I don't need to go into.

                      From what you've said, I think you may have been born with the scoliosis but if there's no specific spinal malformations, what you probably have would today be diagnosed as infantile idiopathic scoliosis. I'm very sorry to have caused any confusion with my questions or definitions. I don't suppose that any of this really matters for your life.

                      I really hope you are able to feel better soon.

                      Take care and good luck with everything,
                      Laurie

                      Mother of Alexander & Zachary:
                      Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
                      Zach is 13 years old and very energetic.

                      Comment


                      • #12
                        Originally posted by Gerry View Post
                        Thanks for asking, txmarinemom. --- May I ask if YOU are in pain now?
                        Gerry,

                        Firstly, I didn't intended my question to sound accusatory, but reading back, I can see where it may have been construed as such. Right or wrong, I just always have a "what??" kind of reaction when someone is unaware of their curves details. I've always known what my curve measured in adulthood, even if I couldn't do anything *with* the info (well, until I decided to have surgery that is).

                        You made a point with the mention of "diagnosis in 1937" that explains a lot of how our thinking differs, I believe.

                        Yes ... treatments were primitive and risky then, and when I talk about how little they knew about scoli when *I* was diagnosed in 1978, it pales in comparison.

                        To answer your question, no ... I am not in pain now (post-op).

                        I'm more sore than I would have been pre-op when I do something like spending the better part of 2 days cleaning up after a hurricane by myself (i.e., cutting down broken trees, carting them to the curb, and bending over raking/picking stuff up that was blown around). But in pain? No.

                        Prior to my surgery, however, I was in a LOT of pain. I tried every means possible (at least once ... with no success) to treat it. It hurt whether I laid down or was active ... so I just stayed active, and was determined to continue living my life.

                        In that aspect, it sounds as if we share the same outlook (keep living until we, well ... don't). I understand my curve wasn't as severe as yours, and I can only hope I'd have the courage you've displayed living with this - and facing things so matter of factly. You strike me as a very brave woman. As much as I hate to admit it, your view on surgery at this point has merit .

                        I wish you all the best, and I do hope you get some relief from the pulmonary issues.

                        Regards,
                        Pam
                        Fusion is NOT the end of the world.
                        AIDS Walk Houston 2008 5K @ 33 days post op!


                        41, dx'd JIS & Boston braced @ 10
                        Pre-op ±53°, Post-op < 20°
                        Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                        VIEW MY X-RAYS
                        EMAIL ME

                        Comment


                        • #13
                          Laurieg6, it seems that I am not familiar with the terms connected with scoliosis, since most of my life I have not had to learn such a glossary of terms. I guess I thought that being born with scoliosis meant that's what I have, since it's been with me since birth. Please forgive my ignorance of this subject. You would think, with a severe case, I'd know all about it, but I have had no scoliosis treatment other than when I was a tiny girl less than 2 yrs old and then later in life, getting a little physical therapy and a lift on my shoe.

                          Maybe I should have described what it looks like. What I do know is that I have deformities that were there before birth. I have bones where there should be none, and none where I should have some. But I have been spared the pain that some with scoliosis have suffered. I DO have a very severe case of scoliosis, going up the left side. On my right side I have just about no ribs at all, but just a bony mass. My right hip is tipped up and juts out, if you can picture it. My left shoulder is up high, my neck is short with the left shoulder up so high. I have one larger lung and one smaller lung (large one is on the side of the curve). It is easier for me to sit in a position slumped to the left side, as you can imagine.

                          As I said, please forgive me for not knowing how to answer your questions. I know very little about it. I am ashamed that I don't have the kind of info I should have had decades ago. But as I look up some of the sites, I can see I am really ignorant of my condition. But I do know my condition was determined in the womb and I feel blessed that I have had so many years of painless living.
                          TIMING IS EVERYTHING!

                          Comment


                          • #14
                            texmarinemom, you are no doubt right about the reason we think differently about my scoliosis is because of the generational difference between when I was born and you were born. Remember that I was just a little child when I was in the hospital and was diagnosed. All I had was my mother and she took me home after nothing was improving after a year or so. How else would I have gotten information as a child? I only got a computer decades later when it was getting too late to do anything worthwhile as to improving my condition, considering the cost (I already am a burden on my health insurance with pulmonary medications and osteoporosis meds).

                            Looking back now, I'm wondering why none of my doctors ever suggested that I stay monitored and given info that might help me. I only got a lift on my shoe because I felt I was getting limpy and needed some help. I feel a bit neglected by all my previous primary care doctors now. I really do. I can see now how naive I've been all these decades. And I apologize for my lack of info in trying to answer anyone's questions.

                            I think some of my previous reply to laurieg6 will help understand me better.
                            TIMING IS EVERYTHING!

                            Comment


                            • #15
                              Hi Gerry,

                              There is nothing for me to forgive regarding anything you wrote. You were raised in a time when much less information was available and what was available took much more effort to acquire. All the different definitions and terms are fairly meaningless anyway, unless someone is pursuing treatment. I think that in many ways you were very lucky not to have to deal with the scoliosis for so many years; although it is pretty rotten sounding what you're going through now...

                              People usually are expected to rely upon their medical practitioner to provide them with appropriate and necessary care. I think that lots of doctors choose to ignore problems unless patients, or their caregivers become "squeaky wheels" about them. I know that we switched pediatricians because ours let our son go without any follow-up for his spinal issues until I pushed my concerns upon her. She knew about the hemivertebra but did nothing to check on it until it was obviously causing the scoliosis. So I'm not surprised that none of your doctors ever mentioned a need for treatment of your scoliosis nor that you were able to ignore its importance for your future if no doctor (or anyone else) told you or helped you to deal with it.

                              Please don't let what I said stop you from calling your scoliosis whatever you want to. It sounds like maybe it is "congenital" (caused by spinal malformations) rather than "idiopathic" (of unknown origin) scoliosis anyway.

                              I hope you feel better soon.
                              Laurie

                              Mother of Alexander & Zachary:
                              Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
                              Zach is 13 years old and very energetic.

                              Comment

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