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3 parents of Greenville Shriners' children

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  • #31
    Hi Kris,

    What a relief! I'm so glad you got your notice. Dawn, I'm sure your notice is right around the corner. In the mean time, my thoughts and prayers are with you.

    Susanna
    Susanna
    ~~~~~~
    Mother of a 17 year old daughter. Her "S" curve was 40 degree thoracic from T3 to T9, and a 70 degree rotatory thorcolumbar from T9 to L4. She was operated on March 9th, 2005 by Dr. Boachie-Adjei at the Hospital for Special Surgery in NYC. She was fused from T11 to L3, using an anterior approach, and the major curve corrected to 20 degrees. She's doing great!

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    • #32
      Good for you!! I hope we hear soon as well. It would be nice to be there together and to actually talk in person.

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      • #33
        Dawn, I see you are continuing research regarding choices. I hope you find what you are looking for! Did you get a surgery date yet for Shriner's? I agree you need to continue getting all the info possible as you still "plan to have surgery" at Shriners. Erica is in Puerto Rico right now. She got to go, since the date is in July. How are things going with the Boy Scout Jamboree? Kris

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        • #34
          Hi. Sorry I've been so guiet as of late. We have been researching, talking with doctors, praying, talking amongst ourselves, etc. I hated to dump my confusion on this forum. I'd never thought I'd say this, but I kind of wish my son had a more common form of spinal deformity since there would be a more clear cut answer to what is best. We met today with Dr. Stasakalis (msp?) and decided to have the surgery at Shriners. We have decided to go with the approach that has the least likelihood of paralysis. I feel better right now since we have made the decision. I'm sure that anxiety will creep back in soon enough. Our surgery date is July 13 and he enters the hospital July 11. He will be at camp until July 8. I can only imagine that I'll be a nervous wreck that he will do something that will require us to put off surgery, but I couldn't bear the thought of denying him his 2 weeks at camp since he won't be going to Jamboree. I'm so glad your daughter was able to go to Puerto Rico. My sons and husband are on a mission trip with our church youth group to St. John's Island this week. I imagine we'll see each other at Shriners.

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          • #35
            Dawn, glad to finally hear from you. I understand you wanting to make some decisions without discussing them with the forum. Each of us has our own needs. I'm glad you consult God and your husband through it all. You'll have to tell me more of what Dr. Pete said regarding your son's surgery. I register in with Erica July 14 at 8am and her surgery is July 18. We are planning to go down the night before to get a hotel or McDonald house so we don't have to drive so early in the morning. I will finally get to meet you and your family July 14! Then, you can help me know what we will encounter. Glad you got the surgery date worked out and the camp too. I thinks Mary is in Shriners with her child now. We can pray for her, too. Tell me about what type of surgery you are getting, if you don't mind. Kris

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            • #36
              He will have posterior in situ fusion. Dr. Stasakalis will decide whether to use hip bone or cadaver bone during surgery. I feel very comfortable with relying on his judgement. He will use no instrumentation. I assume he will only fuse the 4 vertebrae that are already fused in the anterior. He has suggested that the only way to make absolutely certain that he is fused completely is to "open him up" again in about 4 months and "take a look". I am praying that that won't be necessary. I am really glad to be having the surgery at Shriners. It has such a calm feel to it. Is it just me or do you feel that way also? I also know that it will be a huge advantage to have surgery at a place which specializes in children and adolescents. I will be saying a prayer for Mary and her son.

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              • #37
                Dawn, now I am totally confused about Wells's surgery. If he is already fused by God, then why would they need to fuse the same areas again posterior? Do they end up taking care of the kyphosis and the rib hump or is this totally to prevent it from getting worse? I am not counting on Erica looking a lot different with her rib hump, etc., if the surgery is safer just to prevent it from getting worse, but I wonder if you have decided on a method to just control it or to also decrease it? Who all did you get opinions from in the way of doctors? By the way, I am not trying to affect your decisions at all, just curious how it is going. Take care, Kris

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                • #38
                  I understand your confusion. I have spent the last 3 months wallowing in confusion, so it's good to have company. Wells if fused in the front (congenitally) and not in the back; therefore, his spine is growing in the back and not the front. They will fuse him in the back just over the four vertebrae that are fused in the front. This will stop the uneven growth that is causing his kyphosis. They will not correct the curve that is already there. We saw Dr. Wattenbarger (Charlotte) and Dr. Bruce(Emory) and our regular orthopedist, who is a friend and shared his advice on interpretting the very different information we were getting. I look forward to meeting in person although I imagine we both wish it were under different circumstances.

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                  • #39
                    Seeking Info Regarding Reduction Of Rib Hump

                    Dawn, I reread your post and it finally makes sense. I was wondering how they could fuse without instrumentation. Of course: In your case, Wells already has the congenital fusion holding the spine in position from the front, so they don't need rods to fuse the back! Consider it an advantage, a gift from God, Dawn! I have a question for the forum also: I have been trying to understand and research kyphosis surgery. I finally got to information that says some doctors usually go ahead and reduce the hump as they do the scoliosis surgery. The rib hump can go away on its own after they straighten the spine, but not very likely if the curve is rather high ( my daughter's is considered in the "high" range, at least 69). There are apparently different methods of attempting to reduce the hump, and it is recommended for health reasons, but can be done for appearance reasons. My daughter said that hard chairs aggravate her back, so I am suspecting her kyphosis is aggravating her. The info I gathered refers to removing ribs or parts of ribs in the front and in the back, depending on what info I read. Anybody have any ideas to guide me more? Thanks, Kris
                    Last edited by KRIS ATKINSON; 06-23-2005, 04:46 AM. Reason: add title

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                    • #40
                      Kris,

                      I don't know if this will help or not, but I'll try. My daughter had surgery almost 7 months ago for her Kyphoscoliosis. Her Kyphosis was about 72* before surgery and corrected to about 33* and her Scoliosis was about 46* pre-op and corrected to about 13*. Her rib hump is gone, but I must admit that her left shoulder blade still sticks out. Her doctor did "osteotomies" on her back and removed some bone which he then used for her fusion. She did not have bone removed from her ribs or her hip. Jamie's doctor corrected all three of her Scoliosis curves plus the Kyphosis. She is fused from T2-L3.

                      Mary Lou

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                      • #41
                        Mary Lou, I have researched osteotomies on the net to try to get an idea of this procedure. I also just responded to your private message. I have never heard of getting the bone from the back before. I thought it was always from the hip or the rib. Is this something special? Also, my daughter's scoli curve is about 70, so it may be too high to use the osteotomies. I'll look at your pictures when I see them. Thanks, Kris

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                        • #42
                          Mary Lou, I don't know if you got my message. Kris

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                          • #43
                            Kris, Usually an osteotomy is done to correct the front to back curve or to help correct the saggital balance (which is front to back). I just had surgery again on June 2nd to have an osteotomy done at the L3 level to correct a forward leaning problem that I was having after my A/P surgery last year. What the surgeon does is cuts out a wedge shaped section of bone from the spine (in my case it was a little over an inch thick). The spine is then pulled back together and fused in place. The best way that I have explained it to my family is like when a tree is being chopped down with an axe. They chop a V-shaped section out of one side of the tree and then it falls down on itself and then to the ground.
                            Theresa

                            April 8 & 12, 2004 - Anterior/Posterior surgery 15 hours & 7 hours
                            Thorasic - 79 degree down to 22
                            Lumbar - 44 degree down to 18
                            Fused T2 to sacrum
                            June 2, 2005 - Pedicle subtraction osteotomy @L3 7 hours
                            MAY 21, 2007 - Pedicle subtraction osteotomy @ L2, extended the fusion to S2 and added pelvic instrumentation 9 hours

                            FUSED T2 - SACRUM 2

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                            • #44
                              Theresa, thank you. Kris

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                              • #45
                                Mary and Dawn, how is it going with you two? Mary, I assume your son's surgery is finished. Dawn, is your son at camp now? Kris

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