spinecor

[pat]

I'll bet "all together" we'd be able to put together a outline letter which everybody who needs to could use for this purpose.

Once you put something together feel free to post it or sent me copy by email so we can help you to improve it.

I wrote how a 20% reduction in lung capacity and overall muscle atrophy is common during hard brace . . . Spinecor treatment has been effective in 89% of cases either by stabilization or improvement in cobb angle of curve (especially when started early), and the whole compliance issue w/hard bracing vs. Spinecor bracing and other particulars specifically for our daughter. p

[cherylplinder]

Do you know if the reduction in lung capacity is reversible?
Just for the information. The Boston did not touch Rachel's curve. There was no reduction of her thoracic curve. I am fairly certain, at least for now, that this is working. Rachel grew a couple of centimeters, and her curve in brace went from 30T/19L to 23T/22L. I hope that means we will have success. I guess I am nervous that we will hit a particularly aggressive growth spurt that will not respond to the brace.
I am still so grateful that she is not in a hard brace. She is so comfortable! And so far results are good.
I would nominate Drs. Coillard and Rivard for a Nobel prize. That is how amazing I think this brace is. I probably sound stupid. Oh well! That never stopped me before !

[Celia]

No it doesn't sound dumb at all ....I would nominate them too ! In the event that anyone is curious here is a website on conditions for nominating someone for the Nobel Prize:

http://www.britannica.com/nobel/nobelprizes.html

[Celia]

Do you know if the reduction in lung capacity is reversible?

This is something I've been wondering about too ! What if you have a small child under the age of 8 who is wearing a restrictive confining brace ???? Will they ever regain their lung capacity ? What kind of things can parents do to prevent this from happening ? Are there exercises that can be done ?

[cherylplinder]

OK, I ditto Celia's questions from the above post. If anyone knows the answer, let me know.
Second,
Sarah left for her missions trip today. She will be gone 10 weeks. I just felt blessed. She has often been lonely, even though she is a social animal. She will be with a great group of kids all summer. No loneliness this summer. She will make lifetime friends. I am smiling.
Pray for her protection. She will be in the inner city. It is a rough environment. The kids are well supervised, but pray for her anyway.

You all have a warm place in my heart!
Hope you are looking forward to a great summer!
Hugs!
Cheryl

[Celia]

Cheryl,

Lots of prayers for your little girl, I'm sure she'll do great !

As you said in your P.M., I could request a lung function test for Deirdre and holding one's breath in the water seems like a good idea Deirdre is doing lots of bobs in her swimming classes. I was doing a google search and I found the following abstract so I guess I shouldn't worry too much about all those years in casts:

Respiratory Function at Maturity in Infantile-Onset, Non-Congenital, Non-Syndromic Scoliosis

Caroline J. Goldberg, M.D.
Children's Research Centre
Our Lady's Hospital for Sick Children
Dublin, Ireland

Imelda Gillic
Children's Research Centre
Our Lady's Hospital for Sick Children
Dublin, Ireland

Olivia Connaughton
Children's Research Centre
Our Lady's Hospital for Sick Children
Dublin, Ireland



Abstract from the SRS 2003 Annual Meeting

Background Data: The natural history of infantile onset scoliosis varies from complete resolution to severe and relentless progression throughout the growth period. Historical studies of untreated cases have shown an increased morbidity and mortality from respiratory compromise in those with severe deformity. Treatment aims to reverse the deforming process and prevent these sequelae. Because the condition is uncommon and results cannot be finally assessed until the end of growth, outcome tends to become lost in the discussion of newer methods.

Study Design: Prospective review of respiratory function in patients with non-congenital, non-syndromic, scoliosis of infantile onset (before age 4 years) who were at least 15 years old at the time of study. Method: After ethical approval and informed consent, patients with infantile onset scoliosis (N=23, 11 male and 12 female) were recalled for full pulmonary function testing (spirometry, lung volumes, gas diffusion) and surface topography. Results were correlated with radiographic and surface topographic parameters and with treatment history.

Results: Those whose scoliosis resolved or stabilised at an acceptable stage, (N=6, 1 male, 5 female) with (N=3) or without (N=3) serial casting, had normal cosmesis and pulmonary function at a mean age of 21.1 years (mean FVC=98.83%, FEV1 = 98.7%) Those who were managed by casting or bracing and had avoided surgery until after age 10 (N=6, 3 male, 3 female, mean age at surgery 12.9) had variable cosmesis and good pulmonary function (mean FVC=68.33%, FEV1= 71.5% at a mean age of 20.3 years). Those who received surgery before age 10 (N=11, 7 male, 4 female, mean age at surgery 4.1 years, and at testing 20.5 years) had significant recurrence of deformity and respiratory restriction (mean FVC=41%, range 12-67%, FEV1=41%, range 14 - 72%). In all cases, measures of respiratory function correlated positively with age at surgery and negatively with the most recent Cobb angle and surface topography parameters. DISCUSSION: The aim of early surgery was the preservation of respiratory function, and the control of deformity. It was recommended only for those who were failing to respond to or inappropriate for serial casting, i.e. the malignantly progressive. Those who had the worst prognosis in infancy, now have the worst outcome. While there is variation, there is also a clear pattern of continued progression of deformity after early surgery and a concomitant decline in pulmonary function, such as would be anticipated in an untreated case.

Conclusion: In this type of scoliosis, numbers will always be small and natural history plays out over a long time, making meaningful assessment difficult. It is not possible to form an opinion on the efficacy of non-operative management, but the evidence suggests that early corrective spinal surgery has not prevented deformity or preserved respiratory function.

[MATJESNIC]

I'm Back

Hi Everyone,

We had a great vacation. I thought of you, Celia, in Epcot when we saw Canada. Of course, I thought of you, Gerbo, when we saw England. I heard a lot of lovely English accents in Disney. Nicole and I love those accents. I know, Gerbo, you are thinking that I'm the one with the accent. I also spoke with a Mom who was there from England with her kids for 3 weeks.

Highlight of the trip was staying at the Hard Rock Hotel and going to Universal and Island of Adventure. They gave us adjoining suites because the room we had booked was unavailable. The pool was so nice and the parks were walking distance. You get to avoid the lines for the rides with an express pass.

Nicole wore her brace and bodysuit in the heat every day but the last. I was very proud of her. I hope you are all doing well. I have tons of wash to do.


Take care,

Melissa

[Celia]

Melissa,

You actually thought of us when you were on vacation ? That is so sweet ! I hope you and your family had a great time and what a wonderful way to celebrate your birthday.



hugs,

celia

[desheah]

appt with dr. rivard

okay, i decided to go directly to the inventor since dr. sanders isn't convinced about the spinecor in young children. i have an appt. for tues july 25th at 12:30p at ste. justine's. it can't hurt!

deshea

[MATJESNIC]

Deshea,

I think you made a wonderful decision. I would do the same if it were my child. I keep having great ideas after the fact. This way you will reduce the amount of "What if?" and If Only..." I wish you the best of luck.

Celia,

Of course, I always think of my "friends" from other countries whom I have never met. We all share a common bond that many of our "real friends" in our lives can't understand. I appreciate each one of you.

Melissa

[Celia]

Melissa,

I can't even talk about scoliosis with inlaws who themselves have it


Deshea,

I won't be here that week to get updates, we're at the cottage for 10 days with no internet access. On the bright side, there will be lots of sun and sand.... maybe you can send smoke signals


celia

[cherylplinder]

Oooooooooooooooooo! That sounds nice. Y'all make me want to plan a vacation.

Best of luck, Desheah!

[AILEA]

Melissa,
Your vacation sounds wonderful! It´s great to have some days to enjoy your family, and to stop thinking about scoliosis! You make me want to plan a vacation too.! In fact we have been planning a vacation in the Caribean for months, but my teen-daughter is not very happy with the idea of going with her parents, and i´m not sure if i want to left her with her "grands"....So I suppose that this summer we´ll choose to have a relaxed vacation in the spanish coast (again)
I usually think of all you too, nobody out there can understand what you feel. I don´t use to post, but i "come" to this forum nearly every day, and i´m allways looking forward to hearing good news from someone.
Cheryl,
I´m glad to see your daughter is doing great with the brace, I´ve read your latest post; I think it´s very important to achieve a correction not only in the degrees but in the posture and appearance.

Best wishes!!

[cherylplinder]

Hey Ailea!
I have been thinking about you every day and missing you! How are you? How is your summer going?
I hope you have the best news at your next checkup! Hopefully the positive changes you noted in torsion will be complemented by a decrease in degree of curvature.
I know it is a while til your next check up.
BIg Hugs!
Cheryl

[Mom37]

Shirley
At first Pooks correction was only 5 degrees but when Jon re-measured her original xrays he determined that the curve was greater than we thought so the correction then went up to 10 - I saw your old post about the small amt of correction concern

Karen,
I am so glad you were able to get Spinecor! I have alot to catch up on. I was on vacation for 12 days and there is about 4 pages! Thanks for the info. We were told that curve was higher degree than original xray of 30 to 38, but only because of the way measured. After initial bracing only 5 degree correction from new measurements to 32, but at 1 month 10 degree correction to 28. I was thrilled to have Andrew Mills do the one month adjustment. We are going to Shriners in Erie in less than 2 weeks for her 3 month adjustment from initial bracing and opinion for Dr. Sanders! Shirley