I think Karen has their appointment today at Erie. I can't wait to hear how everything goes. I hope they are very supportive of your choice. We have a couple more forum members and lurkers that are going there this month, I think. This will be the first of several. God Bless!
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Last edited by cherylplinder; 05-22-2006, 01:19 PM.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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Shriners
Originally posted by cherylplinderI think Karen has their appointment today at Erie. I can't wait to hear how everything goes. I hope they are very supportive of your choice. We have a couple more forum members and lurkers that are going there this month, I think. This will be the first of several. God Bless!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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hi karen,
this is my first time posting on the spinecor thread although i've been a secret lurker for a long time! my son is 4 1/2 yrs old and currently sees dr. sanders for serial plaster casting to treat his infantile scoliosis (similar to celia's daughter deirdre's treatment prior to her going into the spinecor). anyway, the reason that i'm coming out and posting is because we will be returning to erie june 27th and 28th. lucas has been in his current cast since feb, and we are possibly going into something removable for the summer. dr. sanders has been thinking about a bivalve cast, but i'm not so sure. since erie is one of the approved spinecor places, i'm definitely interested. of course, we travel from boston, ma so it's a bit of a hike by plane or car. so, the reason that i'm writing is to ask -- did your daughter get fitted for and put into this brace in one day or was it two? i'm always thinking about timing and such. with "hard" braces, it takes 2 weeks to get them made. just my wheels spinning at this point . . .
thanks so much,
deshea
mom to lucas and ruby
north of boston, ma
p.s. we love dr. sanders as well. he is a wonderful person and a compassionate doctor.mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
spinal detethering due to a tight/fatty filum at 22 mos;
tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
and ruby (3 1/2 yrs old and a handful!)
north of boston, ma
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karen,
thanks for your quick reply. now i'm really thinking that if dr. sanders is for a brace for the summer, i might request the spinecor. it would be wonderful for my son to have the benefits of this brace while strengthening his trunk muscles.
again thanks!
desheamom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
spinal detethering due to a tight/fatty filum at 22 mos;
tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
and ruby (3 1/2 yrs old and a handful!)
north of boston, ma
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Hey Deshea ! I thought I'd pop in and say hi
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
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Karen,
I am extremely happy for all of you. I am kicking myself thinking about all of the money I have spent when I perhaps should have gone to Shriners, as well. If I had to do all over again, I would have done that and then gone to Montreal for a second opinion. Hindsight is indeed 20/20.
I remember when Nicole was complaining about one of the straps hurting and sure enough, it was fine by the next day.
The only think that I do differently than what you mentioned is that I put the bolero and straps into the dryer for a few minutes after washing. That is supposed to keep the straps in good working order.
Are you going back after a couple of months?
We are taking the kids to Disneyworld for an extended Memorial Day Weekend (and my birthday). So I will not talk to you all until next week. We leave early Friday.
Take care everyone. I don't want to think about a spine or a brace for the next week. The only part of the body I want to think about are the ears on a very famous mouse!!!!
MelissaMelissa
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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Oh Karen,
I am so excited that your trip was so wonderful and productive! I was so hoping that it would be!
It could be that you are putting the base on a little high and making your crotch straps high. Look at your pictures and see where the base hits the tree or(in Rachel's case, she would kill me if she knew I said this) I could see her little hinny crack above the base and knew about where to place it.(My pics were of her in undies and bra)
You could also e-mail pics of her in the base to Jonathan for him to double check!( I know you have the technology! )
Hooray!
Hugs!
CherylGod 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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Celia,
What did Deidre's curve measure out of brace when she was fitted for Spinecor? I have always assumed that it was in the 20's at that point, but never asked.
Karen,
It is good that they are seeing you back in one month. The brace will need tightening by then to get the full benefit.
Melissa,
Have fun at Disney! Happy Birthday!Last edited by cherylplinder; 05-24-2006, 01:27 AM.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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this is my first time posting on the spinecor thread although i've been a secret lurker for a long time!
my son is 4 1/2 yrs old and currently sees dr. sanders for serial plaster casting to treat his infantile scoliosis (similar to celia's daughter deirdre's treatment prior to her going into the spinecor).
did your daughter get fitted for and put into this brace in one day or was it two?
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If I had to do all over again, I would have done that and then gone to Montreal for a second opinion. Hindsight is indeed 20/20.
We are taking the kids to Disneyworld for an extended Memorial Day Weekend (and my birthday).
I don't want to think about a spine or a brace for the next week. The only part of the body I want to think about are the ears on a very famous mouse!!!!
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Hi Celia,
That's what is so great about the system at Shriners Hospitals - it is not the insurance companies, but the doctors who decide on what's best for the patient
I really believe that's why their treatment is often so effective - because the focus is completely on the child - and not on what an insurance company will or won't allow them to do.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/
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Originally posted by gerbowelcome, glad you have "come out"
Originally posted by gerbohow well is your son doing in his serial casts??
Originally posted by gerboall can be done in one day as all the parts are prefabricted
thanks,
desheamom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
spinal detethering due to a tight/fatty filum at 22 mos;
tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
and ruby (3 1/2 yrs old and a handful!)
north of boston, ma
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Hi everyone,
I haven't posted on this thread yet, but have been following for a few weeks (Hi Cheryl). My daughters curves are 34T/45L and has been in the Spinecor brace for about 6 weeks now. There was only a 2deg correction in brace at both the initial fitting and 1 month eval. We live in Texas and are seeing someone here local to us. I spoke with Dr. Couillard yesterday and she said these are the results that she would expect with a 45 curve, that it's already rigid and very hard to correct.
My question is this, has anyone here had better results in the Spinecor with a larger curve like my daughters? We are most likely going to Montreal to get a second opinion from them despite the fact that she wasn't optimistic about being able to correct it more.
Thanks for any replies,
Sherie
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Hey Sherie!
Welcome! I was going to send you a PM. Did they do a supine x-ray when they fitted her for the brace? That is how Dr. Rivard determined the rigidity of Rachel's curve. Standing she was 38 out of brace, but her supine the same day was about 22.
Hugs to you!
CherylGod 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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