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Sugery For My Angel

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  • #16
    Hi Ron,

    Mary Lou pretty much made the point. Even though i had heard doctors would be different, I was surprised at just how much.

    My first opinion told me that I should do surgery as soon as possible (I'm 28, with an upper curve of 46, slowly progressing), that it would take me 3 weeks to recover with no major side-effects. He was a bit blase for my taste--he called the surgery "easy"! Maybe I would have been an "easier" case than some he takes, but it was a bit of a warning flag that he wouldn't suit my personality.

    The second opinion told me I was in great shape, that I might never need surgery if the curve didn't progress any more, and that it would be "no problem" to have surgery in my 40s or 50s. He seemed trustworthy, but certainly was not particularly interested in my individual case and was a bit abrupt with my questions.

    My third opinion fell somewhere in the middle, recommending I delay surgery until my curve reached about 55-60, when progression would be inevitable. He took plenty of time in answering my questions. However, I really took a dislike to the attitude of some of his office staff, so that might influence my future treatment options. (I get the impression you have to deal with the office staff a lot during recovery and for insurance purposes.)

    As you can see, a lot of my "issues" with the surgeons were personal impressions about how I would be treated along the way if I trusted them with the surgery, as well as their medical recommendations. From what I've read, knowing and trusting your surgeon can really help make the experience somewhat less stressful. One thing I learned from Dave Wolpert's book, which didn't apply to me as I went the rounds this time, but which seems very important, is to have the doctors specify which vertebral levels they would fuse in surgery. Even one vertebral level can make a difference to future mobility and risks. (Have you red the Dave Wolpert book? It's really great. You can get it from this website, if you call they might rush it to you as well.)

    All the best with your appointments. We'll be hoping you find somebody right for you and your daughter.
    ~Laura
    30y/o
    Upper curve around 55
    Lower curve around 35

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    • #17
      Laura,

      Thank you, for sharing your experience. I appreciate hearing about what you have learned.

      We feel pressured to have this done quickly, because of the severity of her curve, but we want to make sure we are doing what's best for our daughter.

      No, I have not read that book. I will look for it on the website. I very much appreciate your comments on the vertebral levels. I feel there is so much I do not know.

      Ron

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      • #18
        surgery for my angel

        hi laura
        i was curious as to which three drs. you went to. If you don't want to say their names on the boards could you send me a private message or an e-mail my e-mail is
        jc3palm@aol

        thanks. My daughter's surgery is in 2 weeks, she has a 52 degree curve and she is also having some ribs removed.
        good luck
        jennifer

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        • #19
          Laura,

          Can you please tell me how to get Dave Wolpert's book and it'sd title?

          Thanks,
          Ron

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          • #20
            Dave Wolpert's book

            You can order it from http://www.curvedspine.com/

            I just ordered the download version, and have not gotten very far yet, but it seems really good!

            I just finished reading "The Scoliosis Sourcebook" by Dr. Michael Neuwirth (reccomended to me on here) and it was really informative, too.

            Christine
            Age: 30
            Pre-surgery: upper curve 44 (and kyphosis), lower curve 45
            Post-surgery: under 20, both curves (doesn't even qualify as scoliosis anymore )

            surgery: August 29, 2005
            fusion T5-L3
            Surgeon - Dr. Ted Wagner at University of Washington (Seattle)

            Scar getting to the point where people either don't notice it or think it is from something much less serious!

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            • #21
              Christine,

              Thank you very much!!
              Ron

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              • #22
                You can also order the Scoliosis Surgery book on this website at:

                http://www.scoliosis.org/store/books.php

                --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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                • #23
                  Thank you.

                  Ron

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                  • #24
                    hi ron,

                    i have a cousin who has Angelman Syndrome. she's 17 years old and a sweetheart. she always smiles when she sees me. like your daughter, she can't walk or talk and she's tubefed (don't know if you're girl needs that). anyway, i wish you and your angel luck



                    Ginny

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                    • #25
                      Ginny,

                      Thank you for your wishes. No, she is not tube fed. She actually has a healthy appetite and can use utensils with assistance. She can't walk, but she trains everyday on a partial weight bearing treadmill. We hope she will walk with assistance one day. She is initiating steps on her own, after a year of training.

                      We had our first meeting with her Orthopedic doctor/surgeon, last Wednesday. He is recommending fusion from T-3 to the sacrum. This sounds very radical to me. He says she may loose some or all of her ability to take steps. I was wondering if you or anyone would like to comment on that?

                      Thanks again for your kind response.

                      Ron

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                      • #26
                        That is likely (but not definetaly) that she will lose her mobility, but it would be alot better than to have the scoliosis get worse and cause trouble for her lungs and heart. she could die from her scoliosis if it does get bad enough (i'm not trying to scare you) but it would have to get into the 100 degree category for that to happen

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                        • #27
                          Thnaks, for your input. We will be seeing other doctors. I just want to know that this extent of fusion is necessary. I want to be certain there is no alternative.

                          Ron

                          Comment


                          • #28
                            Hi again, Ron,

                            The fusion recommendation you mentioned sounds very radical to me. That is a HUGE amount of the spine to fuse. Fusing to the sacrum restricts more mobility than fusing the entire thoracic spine. I'm glad you are getting more opinions. Hopefully the other opinions will be by a surgeon who has experience with patients your daughter's age and with similar medical backgrounds. Good luck and keep us posted.
                            Carmell
                            mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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                            • #29
                              Carmell,

                              The doctor who suggested this has a great deal of experience with these surgeries and with children with similar conditions. I asked him if there were any alternatives to such a radical procedure and he said "No". In fact, I rephrased the question and asked what options there were and he said "none".

                              We have an appointment with a doctor at Duke Medical Center, in a few weeks. We have copies of my daughter's x-rays, which we will be taking along. We are also waiting for an appointment with Shriners Children’s Hospital, as well as continuing to explore other hospitals and doctors.

                              Thanks, for your comments.

                              Ron

                              Comment


                              • #30
                                hey

                                Hey
                                My name is alexandra and I am 25 years old, I I was you I would try Shriners they have already helped me so much and I am looking foward to My surgery on November the 3rd in portland oregon. Shriners helps kids enfant to 18 all you have to do is find the nearest shriners club type place or waht ever they call it and get an application from them.

                                hope this helps
                                Alexandra

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