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  • #46
    that must have been fun snowshoes!!! What a great idea. That was nice of your neighbor. At least she got to go out in the snow for a while. It amazes me how great these kids are doing. I worry though what the future holds when they are older. I made the mistake of browsing on the revision board. It was very scary. I worry about all that.
    Jennifer

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    • #47
      Looks like you guys got all of our snow! We only got about 4 inches.

      Has anyone complained of pain in their upper thigh? Jamie did not have bone removed from her hip but has mentioned that her thigh hurts lately when you touch it. Any suggestions? Can they still get blood clots this far out from surgery? It doesn't appear red or swollen, but the slightest touch causes her pain.

      I don't think any of us were thinking about snow/ice when we scheduled surgery. I know I was scheduling to use Christmas break to avoid missing as much school as possible and we were thinking about where she will be in her recovery come summer.

      Mary Lou

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      • #48
        hi marylou
        sorry i can't help you with upper thigh pain. I'm sure someone here will tell you if you can still get a blood clot, but i would think it isn't anything to worry about. I know a few weeks after nicole's surgery she kept complaining that her knee her and we figured out what it was it was from her bending at the knees instead of at the waist. She wasn't used to doing that and she must have pulled a muscle or something. It only bothered her for a day or two. See we always have something to worry about.
        stay in touch
        jennifer

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        • #49
          I hear you Jennifer, about that revision board, makes me nervous too. I can only pray and hope, and love the moment we're in. MaryLou, Jamie's thighs have always been sensitive since the surgery, I don't know if I'd say pain. But she's as sensitive about her thighs as her back. And her doctor said because the lenght of time during surgery/the pressure there. And now the nerves there are reawakening, a little more sensitive/painful.

          We thought long and hard about winter surgery vs. summer, and I think if Jamie had no siblings, we would have waited for the summer. But, then everyone would have lost the summer, and now with the other two in school, it really works out better, and the summer we'll be relatively back to summer fun!! Pat

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          • #50
            hi pat,
            that is also the reason why i didn't want to wait for the summer, i wanted her to be all recouped and be able to enjoy the summer and not have to sit in the house while her friends were out having a good time. We just have to worry about putting sunscreen at all times on the incisiion. I wonder how that's going to go since nicole will not let anyone touch her back. She says that it feels weird and sensitive, but i thought of the spray sunlotion.
            jennifer

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            • #51
              First day of school

              My first day back after my 1st surgery was only for one class. I was 17 and I had missed the first month of my Senior year of high school. I started going back just for chemisty and lab because I couldn't make those up. I had a fabulous teacher that came to my house once a week and tutored me on all of my other subjects.
              Teachers were very easy going with me, besides the fact that I was a senior. My first period teacher even told me if I needed to miss his class once in a while that that was ok.
              My mom actually took me to school a little after a week after my surgery so I wouldn't miss class pictures. That was exciting to me, my friends were great.
              Your children may or may not deal with what I had to deal with....it took a long time for people to touch me again. I missed the hugs and arm tugs of my friends.
              Good Luck with your children and as a teenager whose gone through it, let me know if you have questions about how we deal with it.
              Had surgery at 17, 19 and 21! Almost 25 and hoping that's it!

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              • #52
                hi kell bell
                thanks for writing us. It's always good to hear people who have gone through this in their teens and how they are now doing years later. I'd love to hear how you are now doing years after your surgery.
                Jennifer

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                • #53
                  hi there

                  Well - my story is interesting. My scoliosis was congenital and not idiopathic as most cases are.
                  I had my first surgery to put the rods in when I was 17, they did posterior and anterior so I have 2 large scars and they used a rib for a bone graft.
                  I was in ICU for 4 days because my lungs kept collapsing, that's also when they found out I was allergic to morphine!
                  I was in the hospital a total of 8 days. It took me a long time to heal, my parents had a hospital bed in the living room for me so I wouldn't be left back in my bedroom by myself. My surgery was in August but I stayed in the living room until december. I was scared to go to a normal bed!
                  My second surgery was to remove part of the posterior bar, and the third surgery was to remove the rest of that same bar.
                  My problem was that I had such a severe curvature (two 77 degree angles) I didn't really have a choice about surgery. It was that or be dead by 23.
                  My doctor said that by having the surgery it would relieve any back pain I may suffer from, but I never had any pain before the surgery and nothing but pain since.
                  I now go to a clinic that specializes in pain and I have learned to live with a certain amount of pain that I've accepted as a part of my life, my dad says he knows that if I admit that I am in pain that it is a pain that would not a grown man to his knees!
                  I think that is one good thing about all of this...I have an extremely high threshold for pain.
                  If I had it to do all over again, I'd really have to think about it, I don't know if I would.
                  Had surgery at 17, 19 and 21! Almost 25 and hoping that's it!

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                  • #54
                    Hi Kell Bell,

                    I'm sorry to hear you are having problems now. That's my biggest worry about my son's scoliosis issues. He is only 9yrs old, but has had fusion surgery (at 11 months old) and had VEPTR rods (2) placed at age 6. My fear is that as an adult, he will have chronic back pain with nothing, medicinally, to help.

                    I see you live in SLC - PLEASE email me at boulderfam@hotmail.com - I would love to hear more about your story (i.e., who the surgeon was, why they recommended surgery, what they are suggesting now, etc.). Braydon has his rod expansion surgeries at PCMC and I feel we have an excellent surgeon. Any advice you could provide would be greatly appreciated.

                    My best,
                    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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                    • #55
                      hi kell bell and carmell
                      that is what i worry about alot also. It's a scary thought and i worry that if there are problems down the road our dr. will be retired by then or something.
                      Jennifer

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                      • #56
                        Pat and Jennifer,

                        I know we've spoken before about pedicle screws and I figured since I was the one who brought the subject up, I should be the one to try and make sense out of all of this. I asked Linda to explain. Here's what she said: Pedicle screws actually replace hooks, and go directly into bone. Set screws (which are the only screws mentioned in Jamie's surgery) are what tightens the rods to the hooks, etc. The hooks are topped with an eye through which the rod is threaded. Once threaded, the set screw is tightened, locking the rod in place.

                        Just thought I'd share this with you.

                        Linda,

                        Thanks!

                        Mary Lou

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                        • #57
                          hi marylou,
                          okay, now i understand, but i have no clue what nicole has in her and now i'm curious. I will find out at next appointment. I don't know if i remember seeing hooks. I'm going to ask my husband when he gets home if he remembers.
                          thanks
                          jennifer

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                          • #58
                            HOORAY! We finally got all the steri-strips off last night. At 7 1/2 weeks post-op we finally got a look at her back without steri-strips. It really looks good.

                            Jennifer,

                            I would bet that Nicole has pedicle screws in her back. Jamie's case is different because she is so small. She is 13 y.o. and about 4' 10" tall and only weighs about 90 pounds. Her pedicles are very narrow and even her veins are small. They had a very hard time starting an arterial line before surgery. Like you though, I would be curious and have to ask her doctor what type of screws he used.

                            Mary Lou

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                            • #59
                              Hi Jennifer,

                              Dr. Boachie said he was going to use the Monarch device with our daughter (which he helped design). I don't know if he used the same with Nicole.

                              Here's a like to the site:

                              http://www.depuyacromed.com/products.../monarch55.asp

                              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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                              • #60
                                Hi Mary Lou,

                                So glad to hear you guys continue to do well, and that the steri-strips are all gone. I hope we're in your shoes this May with our little girl well on the mend!

                                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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