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Thread: spinecor

  1. #2701
    Join Date
    Sep 2005
    Posts
    195
    Thank you Laura for your response. I think I just over worry and try to do to much. Quite ironic when there is really NOTHING I can do, as all of this is completely out of my control

    I guess I need to change my signature. Somehow doing that seems to make it more real. I'll get to it one of these days.
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

  2. #2702
    Join Date
    May 2007
    Location
    Rugby, UK
    Posts
    269
    I don't think there's such a thing as over worrying when you're a parent! I have done plenty in the last year!! I guess we were just lucky enough to have good news this visit so can take some time out from worrying...... This rollercoaster rattles along, remember that Immy was 38 degrees age 9 and is now 27. Who knows what's next for any of our wonderful children??
    UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
    10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
    Surgery due to take place early December 2011 at the RNOH, England.

  3. #2703
    Join Date
    Sep 2005
    Posts
    195
    Thanks Laura. I took the day off today to just go shopping, have lunch with my hubby, and hopefully forget about scoliosis for awhile.

    What's most upset me this week is that rollercoaster ride. With Emily looking sooo much better, I had gotten a false sense of hope that the ride would be ending and I wouldn't have to worry for 5 more years. (Emily was diagnosed at 5, so I've already been in this for 4 years). This is my wake up call that nothing but time will solve this. At least I have the knowledge, that in time Emily can be "cured", whether it be with surgery or not. Alot of parents don't have that.
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

  4. #2704
    Join Date
    May 2005
    Posts
    776
    I guess I need to change my signature. Somehow doing that seems to make it more real. I'll get to it one of these days.
    just change it to "curve approximately 20 degrees", which could well be kind of correct and reflects all the variables involved and variation that occurs in measuring a curve

  5. #2705
    Join Date
    May 2007
    Location
    Rugby, UK
    Posts
    269
    I guess we've been quite lucky as Immy was first diagnosed only a year ago. We've sort of known about it for a year or so longer but didn't look into it or take it terribly seriously. When she apparently progressed so quickly immediately after diagnosis I felt HUGE amounts of guilt. I was sure that not having taken it seriously meant that we had missed the critical period for treatment - although here in the UK they tend not to brace until 30 degrees plus -. At the time I was very cross that they don't screen here. Since then I have seen arguments that state that screening causes unnecessary worry when mild Scoliosis is picked up which would probably never have progressed. I'm sure there are good arguments for both, but what I'm trying to say in a particularly inarticulate manner (!) is that I'm glad we were spared those extra four years of worry.

    Have a great lunch and buy yourself something expensive
    XX
    UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
    10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
    Surgery due to take place early December 2011 at the RNOH, England.

  6. #2706
    Join Date
    Aug 2007
    Posts
    388
    Emily's Mom, I probably wouldn't want to wait 6 months if I were you either. What if you do a 3-5 month range...if she grows a lot in the next few months go back in 3 months, if her height (and weight since I suppose if they were growing curved we wouldn't necessarily see an increase in height) were only slowly increasing or were stable maybe go in 4 or 4 1/2 months?

    I would say definitely go in 3 months but the whole frequency of xray radiation exposure that our children are subject to scares me so I would probably try to wait an extra month or two unless there were other circumstances (such as growth) that made me want to get in sooner. Of course I'm not a professional and I have way less experience with scoli than just about everyone else on these boards - Good luck with whatever you decide!

    Was Emily braced before Spinecor? You mentioned she had scoli for years; i'm guessing she probably wasn't given the size of her curves. (had they been around 16 degrees all those years or had they creeped up a bit if you don't mind my asking?)
    daughter, 12, diagnosed 8/07 with 19T/13L
    -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
    -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
    -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

  7. #2707
    Join Date
    Sep 2005
    Posts
    877
    We were told that the ideal was every 4 months, three times a year. This way they are not exposed 4 times a year. That was just one orthopedics opinion. I always thought 5 months was too long.
    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

  8. #2708
    Join Date
    May 2005
    Posts
    776
    spinecor protocol says once/ 6 months, more frequent is not going to make any difference in practice as it will not change the management!

  9. #2709
    Join Date
    Mar 2004
    Posts
    1,140
    I just wanted to say Good-bye and Good Luck!! I love you guys!!! A few of you know my private e-mail so you could send me updates. If you don't know it, ask Gerbo.

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  10. #2710
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    369
    I have a question about the Spinecor brace. My daughter's back is developing a dent where the lumbar curve is. This has developed over the last week or so. I am wondering what this is and whether it could be being caused by the Spinecor brace? Have any of you noticed this on your children's backs? She is wearing the brace 17-19 hours per day. Is it possible this is spine rotation?

    Ruth
    Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

  11. #2711
    Join Date
    May 2007
    Location
    Rugby, UK
    Posts
    269
    No Celia! Please don't do this. You are valued and dare I say needed on this forum. I can understand you feeling very angry about your treatment. For some reason you seem to be the main target of abuse from certain quarters. I have also seen an extremely rude post directed at Ruth. The moderators (are there any on this forum ) need to act to curb the behaviour of this particular person.

    It would be a terrible shame if genuine, caring people like you were driven away, please reconsider.
    UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
    10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
    Surgery due to take place early December 2011 at the RNOH, England.

  12. #2712
    Join Date
    May 2007
    Location
    Rugby, UK
    Posts
    269
    Sorry Ruth, can't help - no lumber curve & no dent.
    UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
    10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
    Surgery due to take place early December 2011 at the RNOH, England.

  13. #2713
    Join Date
    Sep 2007
    Posts
    338
    Quote Originally Posted by rtremb
    I have a question about the Spinecor brace. My daughter's back is developing a dent where the lumbar curve is. This has developed over the last week or so. I am wondering what this is and whether it could be being caused by the Spinecor brace? Have any of you noticed this on your children's backs? She is wearing the brace 17-19 hours per day. Is it possible this is spine rotation?

    Ruth

    Ruth:

    I'm not sure what you mean by dent, but here is what I see on Sidneys: His spine "disappears" for several vertebrae at his T curve, which is the main one. He is very slender and I can't see the knobs of his spine there, but I see them everywhere else--it's because of the rotation. My husband has something similar, with a much smaller curve (never been x-rayed).

    But it were rotation, why would you just be noticing it on Esme? Surely she's not just beginning to have spinal rotation? Odd that it would happen in just a week.

    Mary Ellen

  14. #2714
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    Quote Originally Posted by rtremb
    I have a question about the Spinecor brace. My daughter's back is developing a dent where the lumbar curve is. This has developed over the last week or so. I am wondering what this is and whether it could be being caused by the Spinecor brace? Have any of you noticed this on your children's backs? She is wearing the brace 17-19 hours per day. Is it possible this is spine rotation?

    Ruth
    Ruth

    Sheena had a dent on the concave side of her lumbar curve prior to surgery. If you would like to see her before and afters, send me your email in a pm, it was more noticeable in person, but you can still see it on her photos. She had a lot of rotation.

  15. #2715
    Join Date
    Sep 2005
    Posts
    877
    Gerbo,

    Even though it wouldn't change the management, for someone like Nicole, we lost a little bit of time before surgery. If a curve gets out of control a month after your appt and you don't get seen for 4 or 5 months, you have wasted so much time. Time that could have been better spent in a new brace, in a new program or getting surgery.
    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

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