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Thread: spinecor

  1. #2686
    Join Date
    May 2007
    Location
    Rugby, UK
    Posts
    269
    Did you like it? I can add it back on
    I stole it
    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.

  2. #2687
    Join Date
    Mar 2004
    Posts
    1,138
    The expression "Eh" is a very Canadian thing.....so I'll add it back on LOL!!

    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

  3. #2688
    Join Date
    Mar 2004
    Posts
    1,138
    I never blamed Cheryl for Rachel's progression. I try not to have a defeatist attitude towards this whole thing and who knows what the outcome will be. I could have thrown in the towel years ago had I listened to the naysayers and doctors. I try to learn as I go along but if I listen to all the studies, I might as well just give up. I'll keep lessons learned to myself in the future. Not a peep from me.
    Last edited by Celia; 12-13-2007 at 11:26 AM.

    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

  4. #2689
    Join Date
    Jan 2006
    Posts
    513
    Oh no!

    Celia,

    You never blamed me, I blamed myself. You recognize that some facors with the brace in the last 5 months were not optimal. That is just reasonable.

    Nonetheless, You are all right.

    If I keep blaming myself, whatever the cause, I am stuck on stupid.

    I won't ever know if my mistakes contributed to the deterioration. I talked to Dr. Coillard yesterday and asked her and she said she didn't know, that it would be difficult to say that that made the difference.

    I am trying to keep busy deciding our next move. I get a little better every day!

    I know that every word said to me on forum relieves some of the pain and frustation. That you all care so much is SOOOOOOOOOOOOO COMFORTING!!!!!!!

    When I feel bad, I come and reread some of your posts to me.Then I feel strengthened and comforted.

    Melissa,
    Thank you for reminding me that when this is all over, I will wonder why I fretted so much.

    Thank you all for letting me vent my frustations, fears, and disappointments to you. No one else really understands like you do. I helps so much to be understood and sympathized with!!!!!!!!!!!!!!!!

    Hugs and love,
    Cheryl
    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.

  5. #2690
    Join Date
    May 2007
    Location
    Rugby, UK
    Posts
    269
    So glad you're feeling stronger Cheryl. It's great that we're all there for each other whenever we're needed.

    Celia, I don't remember any suggestion that you blamed Cheryl??? Please don't stop peeping. I like your peeps!


    edited for typo
    Last edited by RugbyLaura; 12-13-2007 at 02:28 PM.
    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. #2691
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    369
    Celia: Keep on posting your ideas, thoughts, research you have found and suggestions. I appreciate them all.

    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).

  7. #2692
    Join Date
    Mar 2004
    Posts
    1,138
    Aww....you guys are so sweet! This birdie can continue to peep and and not be silenced forever more??? LOL!!!
    Last edited by Celia; 12-13-2007 at 03:06 PM.

    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

  8. #2693
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    369
    Pam:

    My children and I have never had "supine" x-rays taken (i.e. x-rays laying down, face up). It is my understanding that lateral bending x-rays are used to identify structural and non-structural curves.

    As for whether a person's curves will progress or not - that must be in God's hands because as far as I can figure out no human knows whether idiopathic scoliosis curves will actually progress or not. For example, research is currently being done in Montreal, Canada, collecting blood samples and testing same to attempt to find a way to predict whose curves will or will not progress despite all treatment attempts. This research wouldn't be being done if the doctors already had an answer to this most important question which faces all of us as we deal with scoliosis and attempt to find the best treatment. Even identifying the scoliosis gene hasn't actually identified whose curves will progress.

    As for Celia's knowledge about scoliosis - I don't think you are qualified to comment on how deep her knowledge might be. It is obvious she has spent years and years reading about scoliosis. I would not be so quick to think she doesn't have anything of value to share with you.

    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).

  9. #2694
    Join Date
    Sep 2005
    Posts
    195
    Today I took Emily back to the Ped. Ortho. He read the xray at 24 degrees, so I guess the curve is definitely in that area (Chiro said 23). Todays doctor did at least make me feel better in the sense that "There is nothing more that I can do at this point". He says he is not convinced that real progression is occuring and will wait until I come back with the next xray to make that determination.

    The chiro wants me to do another xray in three months. Ortho feels that is too soon and suggests 4-5 months. I beleive that the Spincor protocol would not have me taking another xray until one year in the brace. I know that waiting 6 full months is way too long for me to handle. Any opinions on how long I *should* wait to do the next xray.
    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

  10. #2695
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Quote Originally Posted by rtremb
    Pam:
    As for Celia's knowledge about scoliosis - I don't think you are qualified to comment on how deep her knowledge might be. It is obvious she has spent years and years reading about scoliosis. I would not be so quick to think she doesn't have anything of value to share with you.
    Ruth
    Ruth,

    It's true that none of us would be able to know how deep another's knowledge of scoliosis might or might not be. We are not doctors. I'm sure though, for example that Pam - after living with scoliosis for nearly 30 YEARS - is quite knowledgeable as well. I know I would be if I had the condition for three decades (Pam - I have almost ten years on you in age so I am not calling you old -LOL!).

    I don't think Pam was disputing Celia's knowledge of scoliosis (in fact she posted earlier to Celia "you have much of value to offer here..."); I think she was rather disputing her interpretation of medical evidence, an interpretation Pam just happened to disagree with, as I'm sure you would agree she has every right to do.

    Regards,
    Last edited by mariaf; 12-13-2007 at 09:14 PM.
    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/

  11. #2696
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    369
    Celia:

    I don't want to leave because I enjoy the forum and I don't think you should either however I can't engage in battles on here because my real battle is here at home with my daughter's scoliosis and my son's scoliosis and NF, my brother-in-law's early onset Alzheimers, my sister-in-law's cancer, etc.

    If my heart starts to pound and I feel intimidated when I read a post on the forum I know it is time for me to stop reading and go do something else.....!

    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).

  12. #2697
    Join Date
    Mar 2004
    Posts
    1,138
    Ruth,

    There is a feature that allows you to add certain members to your "ignore" list and any posts they make won't be seen by you.

    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

  13. #2698
    Join Date
    May 2007
    Location
    Rugby, UK
    Posts
    269
    Phew!! I go to bed happy & all **** breaks loose on the other side of the pond... Ruth, please don't go.

    Michelle - Yes I saw your post in there. For what it's worth - I stress (for the benefit of txmarinemom) that I am not a medical professional, just a fellow mum, trying to get by & share information with others in the same boat - I would not go for an earlier xray. Knowing that there has been ?4??? degrees of progression in 4-5 months or 5 degrees in 6 months will not make a great deal of difference. I don't think that anything you have done, re washing, positioning, etc has made any difference. We are very relaxed in our attitude towards Spinecor. As I've posted before the whole thing is washed & tumbled as if an ordinary garment. Imogen wears it for less that the prescribed hours and has breaks of up to 5 hours at a time (occasionally) yet it seems to be working for her.... Hard to say, and much harder to do I'm sure, but if you can, just keep up the good work & relax for 6 months.

    I expect I shall be told off for this post And not sure how I'd be feeling if we'd had your results.... Good luck with your decision.

    Laura

    -How can you accuse Celia of being personal when you have been attacking her so unpleasantly? Your posts were extremely hostile from the outset - it would take a saint not to repond in a defensive manner. Ok, so celia's not a saint (insert some silly smiley face here ). If you have a point, could you please make it in a more polite way in future? Pretty please.... We're all friends here, trying to get by the best we can. Don't spoil this tread.
    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.

  14. #2699
    Join Date
    May 2007
    Location
    Rugby, UK
    Posts
    269
    Not wishing to get drawn into an arguement (although apparently failing - insert some silly smiley face here ). You appear to be doing exactly that of which you accuse Celia . You are obviously an intelligent woman. I am trying to understand your motives for this attack, but failing in this too.

    I won't be editing - even if my spelling is less than perfect.

    Michele, I should have said ealier that I think the fact that "he is not convinced that real progression is occuring" is good news. I know it's frustrating not knowing for sure what's going on. Immy's curve went from 28 to 32 to 38 in 6 months but due to different xray methods & different doctors noone was prepared to say that it was progressing. We felt completely out of control and that noone was listening or taking it seriously. We were sure that it was progressing. Looks like we may have been wrong, and all that worry and heartache was unnecessary.

    Thinking of you,

    Laura x
    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.

  15. #2700
    Join Date
    May 2005
    Posts
    776
    this is one of those occasions where you can see the tension slowly building up between people, and in a way it is hard to understand why as both people involved are clearly sensible and reasonable people, but things just deteriorate as the discussion slowly turns into an argument.

    It isn't as bad yet as it has been in the past and it must be relatively easy to pull back from it and just focus on the issues at hand rather than focussing on each other. Both Pam and Celia have much to offer in knowledge, experience and personal support and I am sure face to face they would be the best of friends.

    It is so easy to make or take things personal on these essentially inpersonal sites, it would be good if we all could continue to respect and appreciate eachother's individual value and situation, and try to lighten eachothers burden, rather than adding to it.

    gerbo

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