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Thread: spinecor

  1. #796
    Join Date
    Jul 2006
    Posts
    3
    Thanks Gerbo,

    We live in Cardiff so the referral might be more complicated as the NHS in Wales is run separately and has not gone as far down the choice agenda. My wife also had scoliosis as a child and had surgery and is keen to do anything to avoid that for our daughter. She is absolutely convinced that we need to get her into a spinecor brace, but I am unsure of exactly how to go about that given the approach locally. That's why I'm so interested in your experience so any tips gratefully received. I've noticed on lists that Southampton and cambridge also use spinecor, but couldn't find anything on their websites.

    She is due for a four monthly review in October. As I said it seems that they only observe and do not believe in any sort of bracing in the Ortho department here.

    She has not started her periods and from her x-ray seemed to have a fair amount of growing to do. She is already quite tall for her age. All I was told was that she had a 21 degree curve with a smaller compensating one in her lower back and that they observed every 4 months and operated if the curve progressed beyong 45 degrees. He said that the odds were against it progressing but... and yes she also dances like so many on here.
    Wack

  2. #797
    Join Date
    May 2005
    Posts
    776
    few things you can do

    - contact mr mills via email/ contact details on spinecor website
    - contact "health authority" (is it the local health board???) area where you live, ask whether there is a patient liason person, speak to him/ her and explain your situation, basically asking for a "second opinion" and as this particular treatment is not available in wales you would like that in the UK, is that possible? In the past we had something like "extracontractual referals" in the UK, not sure whether they still exist. See how far you get that way.

    - private option; we paid about 400 pounds for initial assesment for suitability and xrays, I thought it was worth it, mr mills would give you all required details. I remember being quoted about 1500 pounds for the spinecor itself as a private option. Regular reviews would be on top of that i would think

    in cambridge you'd deal with a different consultant, but still with mr mills, so that would be ok, in southampton, you'd deal with a different orthotist; skill of the person applying the brace is important, that's why i would not go anywhere different than sheffiled or cambridge

    - if my wife had surgery for scoliosis i would get my child braced earlier than otherwise; spinecor is a relatively person friendly option, knowing what i know now, i would go for it

    - this is an excellent forum, but mainly USA based, additionally consider visiting www.scoliosis-support.org which is more UK based, I use both forums myself, giving you a wideranging set of opinions and experiences

    gerbo

  3. #798
    Join Date
    Dec 2004
    Posts
    236
    Quote Originally Posted by Wack
    was that she had a 21 degree curve with a smaller compensating one in her lower back
    Wack
    My daughter, whose been in a Spinecor brace for 9 months now started w/a 19 thoracic and a smaller compensatory lower curve; we put her in a brace so early cause her sister had fusion surgery two years ago. She's doing beautifully with it, complete compliance and her curve's down to a "1" (in brace). pat

  4. #799
    Join Date
    Jul 2006
    Posts
    3

    Thumbs up

    Thanks Gerbo and Pat that's really very helpful.
    Wack

  5. #800
    Join Date
    Mar 2004
    Posts
    1,140
    Pat,

    So happy to hear the spinecor is holding your daughter's curve at "1" degree !!! YAY !!!!

  6. #801
    Join Date
    May 2005
    Posts
    776
    You're back then! Holidays I suppose, enjoyed it?

  7. #802
    Join Date
    Mar 2004
    Posts
    1,140
    I was dangerously close to getting cabin fever with hubby around LOL ! All kidding aside..... it was really nice. Thanks for asking. Here are some pics of the vacation, hubby is the one fully dressed on the beach (with cap and sunscreen of spf 50 ) He wants us to spend the *entire* months of July and August next year at the cottage


    http://i41.photobucket.com/albums/e2...5/beacg215.jpg
    http://i41.photobucket.com/albums/e2...5/beacg235.jpg
    http://i41.photobucket.com/albums/e2...ly25/beacg.jpg
    http://i41.photobucket.com/albums/e2...5/beacg230.jpg
    Last edited by Celia; 08-04-2006 at 12:45 PM.

  8. #803
    Join Date
    Jan 2006
    Posts
    513
    Hi all! Rachel had her appointment today! Her thoracic curve was 20 degrees and her lumbar was 18 degrees. She grew 2 cm. That is down a bit from last measurement. Last was 23T/22L. Yay!
    Today was the day for Pola's daughter's surgery in Springfield. I look forward to hearing.
    Hugs to all, my friends!
    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.

  9. #804
    Join Date
    Sep 2005
    Posts
    877
    Cheryl,

    That is great! Did you go to Montreal or somewhere else? Are you talking about in-brace? I'm so happy for Rachel.

    I have been thinking about Anastasia all day. Today is Pola's birthday. I spoke to her on E-Mail and they were just about to close her up. That was the last I heard. I'm sure those first hours after surgery are some of the most difficult. I'm sure we will all hear something tomorrow.


    Melissa

  10. #805
    Join Date
    Jan 2006
    Posts
    513
    Hey Melissa!
    Yes, We came back to Montreal. I am so comfortable with Dr. Rivard and Dr. Coillard. They are so wonderful. They have done such a wonderful job with Rachel. I am afraid to change anything.
    I can't tell you how relieved I was today. I expect the worst and hope for the best. 20/18 would be a best for me.The 20T/18L is in brace. She was last measured out of brace in April. Her curves were 30T/20-somethingL, out of brace-that is down from 38T/27L in January, but you never know how measurement error has played a role. I was just happy that it didn't measure larger than January.
    Not only that, but Rachel is completely pain free. She has had back pain for so long(2 years). Even if her curves were getting worse, I would not take her out of the brace.
    She used to have pain if her brace had to be off for more than an hour or so, but now she never has pain. She can play for a couple of hours and has occasionally gone longer, and not have any pain.
    We flew to Albany and drove to Montreal from there this time. I hope to drop by and see Pola tommorrow. Springfield is a little over and hour from Albany. We don't fly out until Friday morning. I took Wednesday free from travel. I was just too beat to travel every day this week(We got back from camping in the Smokey Mountains at 1:30 AM Monday morning, and I drove to Birmingham, AL at 10PM Monday night to catch a really early flight Tuesday.)
    When is your next appt for Nicole, Melissa?
    Hugs to all my dear friends! You are the best support group! I love you! If you need anything, I obviously travel.(lol)Be glad to help!
    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.

  11. #806
    Join Date
    Mar 2004
    Posts
    1,140
    Cheryl,

    I am soooo happy !!!! YAY!!!! I know you were really worried.


    I haven't heard from Pola in ages! I'm hoping everything is well with Anastasia and that Dr. Masso got great results.
    Last edited by Celia; 08-17-2006 at 07:05 AM.

  12. #807
    Join Date
    Nov 2005
    Location
    SPAIN
    Posts
    64
    Cheryl, good news!
    I was looking forward to hear from you; Now, with those results, you can see you made a good decision; (We all know how difficult is to make such a decision!).
    Im looking forward to hear from Pola too, ive been thinking about her all day. I hope theyre ok, and we hear from them soon!
    hugs!

  13. #808
    Join Date
    Nov 2005
    Location
    Cyprus
    Posts
    71
    Hello wonderful mothers and fathers,
    thank you for thinking about my daughter. She had a very successful surgery yesterday, all went very well, doctors and nurses are very happy with the results and how she is doing now. Doctor Masso of Shriners in Springfield is an excelleny surgeon and (with a rather long fusion, T3-L4) got her corrected to less than 10 degrees. I can't say Wow, because fusion is fusion and believe me I was the last person to think I would let that happen to my daughter who's been dancing for years.....like most of us spinecor mothers and dads kids. Unfortunately we didn't see her scoliosis until it was 40degrees and there wasn't much any brace could have done for her.....
    After meeting Pat (yes Pat from spinecor) and her wonderful 14 year old who had the surgery 2 years ago I realised that fusion especially for a healthy kid, doesn't mean the end of their being 'normal'. And great Pat also invited us to one of her scoliosis support groups she runs at the Hartford hospital which coincided perfectly 3 days before my daughters surgery. We met about 20 kids mostly post-op who are all wonderful healthy, 'normal' looking and happy.
    Anastasia is now almost 24hours post-up, I am staying with her at all times which is great, she has her own room and own nurse. Excellent staff here at Shriners, excellent doctors, highly skilled and specialised to help the families too. Never felt safer in a hospital/doctor situation.
    Cheryl, thats great about your daughters results, keep it up!
    Hugs to all of you, those that I met, that I am about to meet, Melissa and Cheryl, and those I might never see in person....
    Pola

  14. #809
    Join Date
    Sep 2005
    Posts
    877
    Pola,

    We are so happy that the surgery is over and Anastasia is on the road to recovery. We wish you all the best.





    Melissa

  15. #810
    Join Date
    Jan 2006
    Posts
    513
    Pola, Anastasia, Bill, and Odie(sp?),
    It did our hearts good to get to see you yesterday! We are all on this journey together, and being together makes it bearable! I hope all is going well today!
    Much love!
    Cheryl and Rachel
    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.

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