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  • Hi New here!

    Hello everyone
    I am new to this board, and I was not sure where to introduce myself, so if a moderator needs to move this post I will surley understand.
    Anyway, my name is Suzy, I am 47 yrs old. I have scoliosis and had surgery back in 1970/71. What a procedure it was back then. I was totaly bed ridden for 1 year. First 6 months in the hospital, then 3 months at home in the body cast, then another 3 months back in the hospital getting the body cast off and learning how to walk again. I was also wondering if anybody who had the surgery back then remembers a table, it looked llike a ironing board? They would lay me on this table, put a top on it, and then flip me over, because I was not to be moved.
    Well after the surgery I was fine. But the past 10 yrs have gotten worse. The pain in my back and sometimes legs is really bad. I have been out of work for about 8 of those years, trying to get onto disabilty but they keep saying there is nothing wrong with me. And of course no work, no insurance.
    Last year I was able to secure insurance so I have going back & forth to doctors. Today was my appointment with a ortho doctor. They did a bone density test, and a spinal scan, and they are showed it to me. Wow, what a mess. The doctor said he is amazed I am still standing. I do have osteoperosis, and I am at the beginging stages of menopause, (oh joy).
    But, other then back pain, I feel pretty good. The doctor told me today that I can not use my staionary bike nor do anymore arobic exercise, does this sound normal? I mean I know when I have pushed myself.
    So here I am, looking for support and someone to chat with..
    Oh, by the way, I stopped smoking, I am smoke free for 5 weeks and 1 day.

  • #2
    Suzy,

    Was your curvature and hump (if there was any) corrected by the surgery? Word of advice too on osteoporosis. I get my calcium from drinking a lot of milk.

    Lily

    Comment


    • #3
      Hi Suzy...

      Congratulations on the smoking. I absolutely know what an accomplishment that is!

      I'd like to encourage you to see a doctor who has a lot of experience treating people with prior scoliosis fusions. I don't think I know of anyone on Long Island, but there are lots of good choices in NYC. Here are some docs I've heard people mention:

      Oheneba Boachie-Adjei
      Thomas J. Errico
      Jean-Pierre C. Farcy
      Baron S. Lonner
      Michael G. Neuwirth
      Edward D. Simmons Jr

      Good luck!

      Regards,
      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

      Comment


      • #4
        Hi Lily
        yes they say it was corrected, but nobody ever told me I would suffer with pain from this condition over 30 years later. I was young when I had the surgery, they showed me a x-ray everyone was happy, I didnt have to wear a brace anymore, so I was happy too, and life went on. Until I left my parents home of course I was under there watchfull eyes all the time, 24 hrs a day, 7 days a week, I couldnt stand it. No matter what I did one of them would have a fit, no swimming, no running, no playing ball, no horseing around, no NOTHING! So I got married and moved out LOL. The marriage didnt last long, but I was out of my parents hands and I lived and did everything and anything. I always had pain to some extent, but nothing like what I am experiencing now.
        I knew something was wrong though about 8 yrs ago. My back was killing me after work everyday. I even wound up quitting my job. Then I got a desk job, thinking if I am off my feet, well that didnt help, sitting is no better then standing. So now I just made a appointment with a othero who specialises in scoliosis to see why all the pain.
        I think about that operation and I panic. The last thing I want to do is go threw any kind of surgery again for my back. I dont think I could take it.

        Comment


        • #5
          Suzy...

          I know it's daunting to think of going through more surgery, but if there was a good chance that you'd have less pain, wouldn't it be worthwhile? Just something to think about. :-)

          ---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

          Comment


          • #6
            Suzy...

            I think you're probably referring to a Stryker Frame. You can see a picture of one here:

            http://history.amedd.army.mil/booksd...stCorps/86.jpg

            --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

            Comment


            • #7
              Hi Suzy, I'm new to this site as well, and oh can I relate to your postings. I'm finding this site to be very helpful, for validation if nothing else. That's what we need. This site is keeping me from feeling so alone. I wish I had found it long ago.

              Sounds like I'm about 10 years ahead of ya. I'm 39 and my surgeries were back in 1984.....barbaric style!

              About 2 1/2 years ago, the pain became unmanageable to the point where I too had to quit my job. Hang in there with the Disability. I just got approved, after 2 years. I had a lawyer, who con't to encourage me (or else I would've given up). they make you start thinking you're crazy. I ended up not even having to go to court. I'm not sure how it works where you are.

              My surgeon forgot to mention a future of daily pain, as well!! I remember him saying, "your back will just be stronger than anybody else's." I have convinced myself that he did the best he could with what he had at that time. He was very old. Going with the older ones with lots of experience isn't always the best route. who knows, who knows.

              Revision surgery can be very helpful or not. Get opinions and trust your gut.

              Congrats on quitting the cigs!

              Camille

              Comment


              • #8
                Hi Suzy,
                I'm new here also and it is so validating to find others who understand what scolis go through.
                I had surgery in the ancient days of 1968 when I was 12. Fused T3 to L4, Harrington rods, was on the Stryker frame for a week--it was horrible. After the cast, flat on my back, relearning to walk, etc. I did alot of swimming for therapy. Still do.
                I was considered a success by my doctor. This was in CA. I was never told I might have complications later.
                Started having a lot of pain 10 years ago. Now it's pure agony and I've been through the wringer with doctors, people sayingand thinking I was crazy. Well now I am!! Pain and depression and fighting for and being denied SSD have worn me way down.
                I do have a lawyer/advocate working on my case for no fee. But I've been unable to work for 9 months, burned out all my family members staying with them, and have hit a wall on what to do to survive. Yikes.
                I do meditate when I can manage to stop the worry.
                Hang in there, it's what we all have to do.
                jan

                Comment


                • #9
                  Dear Jan, I just had to respond to your posting, cuz I related so much. Chronic pain + Depression + SSD denials = insanity! I'm with ya!

                  Personally, I'm coping by having frequent meltdowns!, lying down a lot, ice packs, heat, ibuprofen, very low-impact exercises, meditation, lots of kisses from my dogs, talking with friends, as well as a therapist, anti-depressant meds., and prayer and gratitude and faith.

                  And I do believe, we all do the best we can with what we've got.

                  Don't give up on the SSD. That's what they would prefer us to do. And considering what all ya have to go through to get it, they probably save a lot of money by those who end up saying "forget it". I know I felt like saying that many times during the process. So, hang in there.

                  Sincerely,
                  Camille

                  Comment


                  • #10
                    Camille, Thank you sweetie, for encouragement and support. Bathtub meltdowns are really good. Noticeing things to be grateful for helps alot too--roses, clouds, cats...
                    Take care,
                    jan

                    Comment


                    • #11
                      Hi I'm new & would like to make friends w/ people like me

                      Hi my name is Laura. I'm 35 years old, with 2 daughters. My husband is currently serving in Iraq with the U.S. Army. I was diagnosed when I was 13 with scoliosis. My parents chose not to have me treated then. I guess they just thought it would go away. Or maybe they didn't realize how serious it was, I really don't know. Anyway, fast forward to september 19, 2001. I had already had my kids and could not take the daily pain...24-7. My back, my hips, sciatica down my legs. It was awful & I was in tears every day. My youngest daughter was 3 by that time, and I just couldn't be the mama I wanted to be. I had my surgery...Boy, was that an experience that I thought I'd NEVER repeat again! I'm proud of myself for being as strong as I was, though. I didn't think I had it in me. I seemed like I felt alot better after I started healing...actually, it hurt worse, for a longer period of time in my hip, where I had the bone graft. Well, by october of 2002, I started noticing that the pain was coming back, sometimes worse than before. I knew I'd better do something. By then the Army had sent us to a new place and I went to a different doctor. My rod on the left side had pulled away, causing it to press against the nerves. Surgery #2 was scheduled for december 31, 2002...Happy New Year!!!It was alot harder that time. From late november until the end of december I had to have my blood taken every week in case I had to have a transfusion. So I was very tired and sluggish to begin with. The surgery was longer this time, and I had to be in intensive care afterward. I did end up having to have a blood transfusion, and they ended up using every bit of blood that was taken. My face was swollen so much I was almost unrecognizable. That was due to be turned upside down & at an angle and all the blood rushed to my head...Man I was beautiful my husband says...The 1st surgery the dr. used hooks & rods. This time screws & rods were used. From T2---L5. My scar is awsome & I'm actually proud of it. Being cut twice in the same place wasn't fun, but I look at it as having battle scars! I was in the hospital for 9 days, came home and was under the care of home health care for 1 month. My first surgery I had to wear a fiberglass brace for 6 months afterward. My friends & family jokingly called me Ninja Turtle! 2nd time, I was in a TLSO brace for 6 months so that wasn't nowhere near as bad as my turtle vest! Through all of this I have been diagnosed with spinal arthritis, degenerative disc disease, and I've also had migraine headaches since I was a little girl. 2 weeks ago i was diagnosed with emphysema. That might have happened because I smoked since the age of 15, huh? It's also hard to breathe because the scoliosis & emphysema aggravate each other. At this point I feel like I'm 90 instead of 35. It really gets me down that I'm not active like I used to be and have to give up so many things...But then I look at my beautiful girls...and I realize how much worse I could be, ya know? So I thank God for giving me my girls and my wonderful husband and know that He gave me all this for a reason. If you need to talk & would like to talk with somebody who has been there....email me or post a reply. I'm a good listener...Take care & hope you have a great day...Laura

                      Comment


                      • #12
                        Hi everyone!

                        Well this is my very first message posted on this site, I only found the site by accident but I wish I had found it years ago.

                        I am 35 years old, and apart from having a form of SEMD (not sure quite which form though, there are so many variations with similar formations), I also have a kyphoscoliosis.

                        When I was 10 years old (gosh! a quarter of a century ago - what a creaky old thing that makes me feel) I had a spinal fusion and a Harrington Rod (remember those?) fitted. I was told that correction was virtually out of the question as there was a high risk of paralysis. I spent 6 weeks in a Stryker bed, frequently shouting at the nurses "That was the WORSE turn I have ever had!!", and then I spent 8 months - YES! 8 MONTHS - in a body plaster cast. No bath or shower for 8 months! Poo!

                        I had regular follow up check ups, but when I was 16 years old was virtually told to go and enjoy myself. I have since seen, on the odd occasion, so-called specialists, all who have told me there is no further improvement that can be done. I have been told that corrective surgery to try to lessen the raise of my back would be too risky to my lungs (my scoliosis is quite severe).

                        My SEMD means that I am very tiny (just 3ft 9 inches tall) and so I wonder if I'm "chasing a rainbow" by still wondering if there is anything further that can be done?

                        Any ideas folks? Has anyone experienced similar to myself? Is there anyone out there with SEMD as well as scoliosis?

                        I would love to hear from anyone to chat my e-mail, please feel free to send me a private message and I PROMISE I WILL REPLY!!

                        Lots a love

                        Jayne

                        Comment


                        • #13
                          What is SEMD?

                          Comment


                          • #14
                            Hi Letty

                            SEMD stands for Spondylo Epimetaphyseal Dysplaysia. It's a bit long-winded to spell, that's why I abbreviated it. Sorry 'bout that!

                            Jayne

                            Comment


                            • #15
                              Hi Jayne. What is your email address? I would be interested in corresponding. My address is camille14@alltel.net

                              Thanx,
                              Camille

                              Comment

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