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Nicole's pre-op at CHOP

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  • Nicole's pre-op at CHOP

    Hi Everyone,

    It was a long day. But it was great to meet with Dr. Dormans again. What a nice man. Nicole's curves are at a 45 and 60. I am so anxious to have this surgery done before it gets much worse. Part of me feels we should have done it sooner. But she is still a 0 and Dr. Dormans thinks she has another year of growth left. Probably an inch or two.

    We had a tour of the surgery area and we met a nice family who had the surgery done last year with Dr. Dormans. Talking to them was extremely helpful for all of us. I am so at peace. We have done all the research and it is now out of our hands.

    Both surgeons (at Shriner's and CHOP have commented about how knowledgeable the Parents are today. Internet access, of course).

    Anyway, thanks again for all of your support.
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

  • #2
    Melissa,

    I"m so glad to hear you say you are at peace with everything. Peace of mind is so important in every day life as well as in these situations - not easy for us worry wart parents!

    Don't beat yourself up about not having it done sooner - things happen for a reason, WHEN they are supposed to happen - hope that makes sense
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

    Comment


    • #3
      I am so glad everything went well. I am praying for you.
      God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

      Comment


      • #4
        Melissa,

        I agree with Maria above. Peace of mind is important. I didn't know your pre-op was so soon. Ours was the day before surgery and was almost 7 hours with waiting, but they admit and let you stay and do alot that day. Well I am glad you were able to ease your mind,if needed ahead of time, and any questions answered. I also agree don't second guess your previous actions as you did the best you could and had no way of knowing the outcome. Well take care. My daughter is doing very well at 3 weeks, and amazingly mobile. They bounce back so well when they are young so you will be surprised.
        Shirley
        Mom to Amanda, 18, Scoliosis T58, previous Spinecor bracing for 9 months before diagnosed with Chiari I CM, and Syringomyelia (Syrinx) SM. CM/SM decompression surgery 12/4/06, Spinal fusion surgery with titanium rods and hardware and full correction 8/1/07 at Texas Scottish Rite Hospital for Children.

        Also mom to Megan, 14, with diagnosis PDD-NOS on the autism spectrum

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        • #5
          I'm so glad your pre-op went well too. I don't think you need to regret not having done the surgery sooner. It sounds like you decided to get it done after you realized Nicole's curves were definitely progressing & after she was mostly done growing. You wouldn't have wanted to commit to such a big surgery for your daughter unless it was absolutely necessary which you now know it is. From what I've read, you still had hope the brace would prevent the need for surgery until you were told by several surgeons that surgery was the only thing to stop her curve's progression. It's great that you're now at peace with the whole thing though. Keep on doing whatever you're doing to stay that way.

          Take care,
          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


          • #6
            I don't regret not having it done a year ago. But when her curve was at 50, it would have been better to have had it done. Of course there was a 3-month wait for Dr. Dormans. And I first had an opinion at Shriner's so that took time. I guess I couldn't have had it done sooner, but I think the surgery would be a little easier if she was only at a 50. I can't believe how rapidly she is progressing. She can't wait to have it done. They took pictures of her back and showed her and she could not believe how bad it was. She has such a rib hump.

            We had the pre-op early because Dr. Dormans will be away until a few days before surgery. Nicole's is his first surgery when he gets back. We have to go back to CHOP one more time to do a quick blood test and then that will be it.

            Nicole will be followed up there until she is 23 so I am glad we all love it there. That is so important.

            Thank you all for your thoughts and support.
            Melissa
            From Bucks County, Pa., USA

            Mom to Matthew,19, Jessica, 17, and Nicole, 14
            Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

            Comment


            • #7
              Melissa, hang in there, I know that there may be some nail biting in the next year or so of waiting. You all are on the right track. Nicole is (I presume) still in the brace, and the doctors are following her. While the goal is to wait until she has gotten to the end of her growth, if they feel it's necessary, they can always schedule the surgery earlier if there's evidence that there is significant progression of her curves based on symptoms and or xrays. At this stage, the only benefit to waiting, is getting the maximum height that she can get. I've browsed through some of the posts under your login, and it seems that some of them are from your husband. Nicole will do well because she has both parents very involved in what's going on and providing support to her. Hang tough.

              Comment


              • #8
                Thanks. Nicole is getting the surgery in less than 3 weeks. We didn't have a decision to make. It was made for us. She seems to be increasing at about 4 degrees a month. Yikes!!!!
                Melissa
                From Bucks County, Pa., USA

                Mom to Matthew,19, Jessica, 17, and Nicole, 14
                Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

                Comment


                • #9
                  so pleased to hear that things are moving forward and soon nicole will be sorted once and for all and you can start putting it all behind you

                  thinking of you

                  gerbo

                  Comment


                  • #10
                    One more item on your "to do" list down. Good for you guys. We'll continue sending our best wishes to you and Nicole these next few weeks. Keep up the great work.
                    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/

                    Comment


                    • #11
                      Hi Melissa,
                      My daughter Shelby had her surgery in June of 2006. Her curves are similar to Nicole's curves. Shelby's were 44T and 64L. She is fused from T4 to L4 and her curves are both at 10 degrees. Shelby's curves also progressed very rapidly. She was only 12 when she had her surgery and we had put it off for 1 1/2 years to get her as much growth in her spine as possible. She gained two inches in height after her surgery. She is doing awesome and is so glad that she had the surgery. We will be thinking of your family and Nicole during this time and her surgery. I know that it is so hard to watch your baby go through this but remember there is a light at the end of the tunnel.

                      Kathy
                      Daughter Shelby 13 years old
                      Before 44T 64L
                      After 10T 10L
                      Posterior Spinal Fusion June 19,2006
                      Fused T4 to L4

                      Comment


                      • #12
                        Melissa,

                        Glad to hear the pre-op went well. Best wishes to you and Nicole as you go through this phase of the scoliosis journey. Like others have said, don't second guess yourself for not having it done sooner. I could have scheduled surgery over summer when my son was at 49T/44L but I put it off for 6 months to give him a little more time to grow (he was also a Risser 0), start 1st semester of high school and give me time to research and learn about the surgery and come to peace with the fact that there were no other options. During that time, he rapidly progressed to 60T/53L and the rib hump significantly increased.

                        If I had the chance to do it again I don't think I would do it any differently. I feel in my heart it happened at the right time. Even though we weren't happy about it, we were resolved it had to happen and we were as prepared as we could be. Most important, it allowed him to grow as much as possible before surgery.

                        Renee

                        Comment


                        • #13
                          Thanks so much to all of you for your continued support and kind words.

                          I hope all of your families are doing well and are enjoying the summer. We are off to Penn State to bring our son to school. It is a 4 hour drive and we are doing it in one day. Last year we stayed over. Anyway, it is a nice family tradition started last year.

                          Believe it or not, right now I am stressing more about Jessica who just got her driver's license. She is ready to take off and go and we are holding her back telling her she still isn't ready to drive alone. It was so much easier when they were little.

                          Enjoy the weekend.
                          Melissa
                          From Bucks County, Pa., USA

                          Mom to Matthew,19, Jessica, 17, and Nicole, 14
                          Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

                          Comment


                          • #14
                            Originally posted by MATJESNIC
                            It was so much easier when they were little.
                            HOW TRUE!!!!
                            mariaf305@yahoo.com
                            Mom to David, age 17, braced June 2000 to March 2004
                            Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                            https://www.facebook.com/groups/ScoliosisTethering/

                            http://pediatricspinefoundation.org/

                            Comment


                            • #15
                              Melissa

                              Like Renee said, if I had the chance to do it again I don't think I would do it any differently either in terms of timing. Even though Patrick's curves were increasing rapidly I just wouldn't have been ready to go through with it earlier. Patrick could have done it the day after the doctor said let's schedule the surgery.
                              Thank goodness for the needs of your other kids to keep you distracted. Just before Patrick's surgery we had to help move my 19 year old son from his first year at university (a 5 hour drive one way) and my 17 year old daughter was just preparing to go to South America for a month. Life goes on and these distractions help keep us sane.
                              We'll be thinking about you.

                              Ramona
                              mom of Patrick, age 15 at time of surgery
                              diagnosed July 2006 curves T58 L 38

                              Nov. 2006 curves T72 L38
                              also lordoscoliosis

                              feb.2007 curves T79 L43

                              Surgery May 16 2007
                              fused T4 to L1

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