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Thread: Update On Danielle

  1. #31
    Join Date
    Jan 2008
    Location
    NC
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    8,901
    Quote Originally Posted by Kitty View Post
    Sharon, i'd be happy to read the article if you can find it?

    Thanks,
    Lisa
    Lisa, I found a recent review that references the article I was referring to as far as I can tell. But the review itself is a quick synopsis of the situation and might be better.

    I'll post it as a new thread in case it draws discussion but it's called "How much correction is enough?" by Winter, Lonstein, and Denis. Spine 32(24):2641-2643.

    sharon
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  2. #32
    Join Date
    Jul 2008
    Location
    Perth, Western Australia
    Posts
    108
    Hi Mary Ellen,
    I think our surgeon said 6 months, but the orthotist said about 3-4 months, so your guess would be as good as mine!!! LOL! Tahlia herself says she hopes it's just 3.

    Thanks Marian and thank you to you Sharon, I will go and seek it out.

    Cheers all,
    Lisa

  3. #33
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    I didn't check the board over the weekend, but wanted to kind of clarify my comments (and apologize to anyone who was offended by what I wrote - totally not intentional, at all!).

    I DO know what it's like to see your child's body and feel sad that it isn't "perfect". Maybe I have become a little callus to this over the years, watching Braydon's "very not-perfect" back and wondering if we've made the right choices for him so far. His body is not ever going to look like anyone would like it to look. He has multiple scars, a significant rib hump, a solidly fused spine (T5-L1, 65 degrees), a significantly shorter torso, one leg shorter than the other, etc. This is (so far) the outcome from having tried to give him the best QUALITY of life, and trying to keep the physical appearance as "normal" as possible. With all the abnormalities he was born with, it isn't hard to ignore the imperfections (in ignorant peoples' eyes) and realize that he is healthier than we had hoped. Medical professionals continue to tell us that had he been born even 20 years earlier, his quality of life would be drastically worse. Not my idea of fun. He really is doing great, with the body he was given.

    I guess I came across a little harsh, and did not intend for that to happen. We ALL must grieve for the loss of the "perfection" we had hoped for. Once we get past that grief (and everyone must go through it, to one degree or another) then we can embrace the challenges a little easier, and give our children the best quality of life that we know.

    Lisa - Tahlia is so very soon out of surgery, and your emotions are likely very high and on a huge roller coaster. I can only imagine the "discussions" you have with yourself over her medical issues. You have a very full plate - maybe you need a bigger plate? Hopefully as she continues to recover, and feeling better, you will be able to find peace in your heart and know you've done everything in your power to give her the quality of life she deserves.

    Mary Ellen - I also send more cyber-hugs and wishes to you and Sidney for a continued smooth and safe and speedy recovery. I will be anxious to hear from you in about a year to see what your perspective is at that point. Lots to consider, and lots more healing to do, but in the end, I'm sure you both will be pleased.

    I also think these examples are more reinforcement that EVERY scoliosis patient is different. Each one has unique circumstances and conditions. Too many variables to compare apples to apples. I'm very happy for those who seemingly breeze through surgery and recovery, and feel sad and frustrated when patients have complications and concerns. But, we have a collectively large shoulder here to lean on. I hope everyone uses it to feel uplifted and buoyed.
    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/

  4. #34
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    Hi Carmell,

    I don't think you sounded callous or harsh. I personally think you sounded sympathetic in an experienced, realistic way. You certainly know how we all feel so for me at least, a reality check never hurts. Your son has had so many surgeries so you have a broader perspective than many of us who have "only" had to go through spinal surgery once.

    Hasn't Braydon had a VEPTR expansion recently? How is he doing now? Is he back in school after taking off much of last year? How is his leg/foot?
    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.

  5. #35
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Laurie,

    Thanks - sometimes I'm glad to hear how my posts come across. I often write without thinking well.

    Thanks for asking about Braydon. He is finally doing well. His latest expansion was Oct. 13. He had some very bad nerve pain (said all the ribs on his right side felt broken) that was hard to get rid of. A week after surgery he started taking Neurontin. Within 24 hours, there was a great improvement in pain. After about 4-5 weeks, the pain was gone. He has been on a very long road trip with Mike (hubby) and Blake (other son). They have had a great time and he hasn't called me once to say he's hurting or having a hard time. I take that as a great sign! He forgot to take his school work with him, so he's even farther behind! Silly kid. He is taking four classes at school (the core classes) and that has worked well. Anything longer than 3.5 hours is too much for him. His leg is doing well. No more pain! I like that. It was a very long year to recover from that leg surgery and infection issues. His "only" issue with the leg now is his lift/build up on his shoe isn't as good as it should be. It's too soft on the outside and causing his ankle to turn easily. He is also turning in his foot too much again. Hopefully this new lift he recently got will make a better difference.

    I've been reading your little inputs about Alexander and his continued recovery. I keep hoping he's one who suddenly has an epiphany (of sorts) and is magically better with his posture and any discomfort is completely gone. It's very hard to see them when they aren't appearing the way you expect them. Hopefully as he goes through his teen years, he'll get good benefits from growing.

    Take care.
    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/

  6. #36
    Join Date
    Sep 2007
    Posts
    338
    Carmell--

    I, too, wanted to weigh in and say how much I appreciate your posts. They always help me see things in perspective and count my blessings, and realize how fortunate many of us are to be dealing "just" with scoliosis.

    Two years ago I was telling a friend about Sidney's newly-diagnosed scoli. Just last week she emailed to say she wanted to meet and talk--her 14 yo daughter has just been diagnosed. She doesn't know the details of the curve or Risser or anything yet, because she is waiting for an appointment with a specialist. Of course, she is very worried. I hope I can be of as much of a comforting influence in her life as you are on this forum.

    I'm glad to hear Braydon is doing well.

    Mary Ellen

  7. #37
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    Hi Carmell,

    I'm so glad to hear that Braydon is doing better this year. That kid has been through so much and he deserves a fun time off with his dad and brother. You get some relief too. How nice!

    Thanks for thinking of Alexander. Maybe you're right and growing is what he needs to be straighter. He's only grown an inch or so since the surgery so we keep expecting a growth spurt at some point in the near future. He is doing better though and does sometimes self-adjust his posture without my input.

    Your wisdom, support and honesty are huge assets on these forums.
    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.

  8. #38
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Mary Ellen,

    You will be (already are) a great friend and support to many people. I can tell just by the way you write here. You have even more personal experience (being a parent is not easy anyway, but these experiences add "character" and wisdom) now to share support and strength to others who need a shoulder to lean on. Great job and many best wishes to your friend's daughter. Hearing a new diagnosis is never a simple nor easy task. Lots of deep breaths... Thanks for your nice comments - very much appreciated.
    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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