spinecor

[MATJESNIC]

Spinecor

Hi Everyone,
I know some of you have tried to send me private messages. I just deleted some old ones. Sorry about that.
We are going to N.Y. to our Spinecor Doc on Tuesday. We actually talked to 2 orthos at Shriner's in Phila because there was a mix-up. So we had 2 appts. Even though Nicole's main curve is holding at 41 after such a crucial growing time, neither ortho would credit or recommend the Spinecor brace.
We are continuing with the Spinecor because we believe it is still the best option for Nicole.
Does anyone know what can be done for a thoracic curve of 39. Other than a hard brace. Nicole now has two curves. The other is a thoracic-lumbar of 41. The next 6 months are very important. She has to make it through without increasing. Then most of her growing should be done.
Of course, we wish the Spinecor would have brought her curve down. The ortho uses a different instrument to measure the x-rays. So when Dr. D in N.Y. said she was at a 32, they measured it a 36. So basically, she went up from 36 to 41 in 4 months. Of course there is always room for error. But I would rather the error in the other direction.

Melissa

[MATJESNIC]

Spinecor

I forgot to mention that I took your advice, Gerbo, and threw the entire brace in the washing machine (wrapped in a pillow case). I threw the top in the dryer for a short time and let the bottom air dry. Of course, this was right before her x-rays, so she wasn't going to wear it for 24 hours.
The brace survived. So I will probably continue to do it like this. Soon the weather will be hot enough to hang it outside.

Melissa

[Celia]

Melissa,

I'm not sure if I should be jumping for joy or not ? I know you wanted to see some improvement but if she has grown three inches within the last 6 months and her curve is stable (?) we couldn't ask for any better, right ? Let us know how the appointment goes on Tuesday....

Crazy question.....has anyone had trouble with the snaps coming undone ?? Strap # 1 is not holding as of today and as you know it's a long weekend and I doubt anyone will be in the office - I left a message with Dr. Rivard nevertheless. I'm kicking myself for not having spare straps on hand, what a horrible situation to be in....

Cheryl,

How did the appointment go ?

[Mom37]

One month Spinecor brace check went well!

Upon talking to LATigner, she helped make it possible to go to California and see Andrew Mills, the orthotist, a head of Spinecor from England today. My 12 year old daughter went down 10 degrees from original curve to a 28 with no compensating curve. I quote Mr. Mills stating a positve "significant change" to a "unique" European curve. Very positive result we wanted to share. Thanks to Lori, for all your support in every way possible! Mr. Mills commented his agreeing with all Dr. D in NY did before we even Xrayed today.

[cyprusmom]

.
Does anyone know what can be done for a thoracic curve of 39. Other than a hard brace. Nicole now has two curves. The other is a thoracic-lumbar of 41. The next 6 months are very important. She has to make it through without increasing. Then most of her growing should be done.
Of course, we wish the Spinecor would have brought her curve down. The ortho uses a different instrument to measure the x-rays. So when Dr. D in N.Y. said she was at a 32, they measured it a 36. So basically, she went up from 36 to 41 in 4 months. Of course there is always room for error. But I would rather the error in the other direction.

Melissa

I would think that you will get a re-adjustement on Tuesday so that the straps hold the thoracic curve more. Maybe a new type of exercise? Let us know what the Spinecor docs say. Wasn't Nicole found with a double curve from the beginning? If so what was the degrees then?
I hope she stays stable now that you know her growth is about to slow down. It will be a tough 6 months but all worth it.
Good luck
Pola

[MATJESNIC]

Celia,
We are pleased that her curve held during that crucial 6 month growth spurt. However, the compensatory curve in her thoracic has gone up 10 degrees in 4 months and is now considered a real curve. The ortho at Shriner's said there is nothing that can be done for that curve because they would not recommend a brace ring and Nicole wouldn't wear it anyway. So she basically has 2 40-degree curves. We have no control of the thoracic.
That is very frustrating.

Melissa

[MATJESNIC]

Pola,
Nicole never had a double curve. We just heard of the top one in Dec when Dr. Deutchman mentioned that it went up. When she had her initial diagnosis with a top ortho, only one curve was mentioned. In Dec, her top was at a 29 and now it is at a 39. She now has an S curve.

Pola, the school nurse recommended a book for Nicole called Growing Up With Scoliosis by Michelle Spray. I bought it from Amazon. Nicole has been reading it. This true story takes you through the teen years of Michelle, all the way past her surgery. Perhaps Anastasia would like to read it.

Melissa

[cyprusmom]

[QUOTE=Celia Vogel]


Crazy question.....has anyone had trouble with the snaps coming undone ?? Strap # 1 is not holding as of today and as you know it's a long weekend and I doubt anyone will be in the office - I left a message with Dr. Rivard nevertheless. I'm kicking myself for not having spare straps on hand, what a horrible situation to be in....

QUOTE]

This is a frustrating situation....I know we had one come off and it was replaced immediately cause it was indeed faulty. Yours might be worn out.

[cyprusmom]

Pola, the school nurse recommended a book for Nicole called Growing Up With Scoliosis by Michelle Spray. I bought it from Amazon. Nicole has been reading it. This true story takes you through the teen years of Michelle, all the way past her surgery. Perhaps Anastasia would like to read it.

Melissa[/QUOTE]


Thanks for he recommendation Melissa, I saw that book on Amazon a long time ago, I wasn't sure back then if I should get it for her...you know, having secret hopes that scoliosis would not be in our life for long The time is right now and she is a bookworm so thanks for reminding me of it.
Pola

[Celia]

[QUOTE=cyprusmom]

Crazy question.....has anyone had trouble with the snaps coming undone ?? Strap # 1 is not holding as of today and as you know it's a long weekend and I doubt anyone will be in the office - I left a message with Dr. Rivard nevertheless. I'm kicking myself for not having spare straps on hand, what a horrible situation to be in....

QUOTE]

This is a frustrating situation....I know we had one come off and it was replaced immediately cause it was indeed faulty. Yours might be worn out.

Pola,

Guess what ?!!! I took Deirdre to the local shoe repair shop and he replaced two snaps that had been worn out and was charged a whopping $5.00 !!!! So the brace is good as new.....yahoooooo !

[LATigner]

Spinecor checkup

My daughter had her check-up on Thursday with Dr. Gorrie and Andrew Mills. Andrew was there to train Dr.Gorrie as he is now doing Spinecor in his Tustin office. Very nice not to have to drive 2-3 hours! Anways, my husband & I were quite impressed with Mr. Mills and his calm, very educated approach to reading the x-rays, the brace, etc. He told us some things we did not know such as that she has a true double curve that is very well balanced - both in the mid to upper 40's. Because she has no pain and her posture is very good he said that he would not recommend chasing down a surgeon at this point. He said if we saw orthopedic surgeons here in the US they would be more likely recommend surgey for a curve her size than doctors in England and Europe. But because of the double curve any fusion would be really long and very limiting movement wise.

She has made some progress in the SpineCor brace but he said because of her age (almost 16), risser sign and physical maturity we would probably not be looking at a tremendous amount of correction but are shooting for stabilization of the curve. He declined to x-ray her again saying that in girls her age the changes come slowly and not over just 30 days of more time in the brace and it was not worth the x-ray exposure to take another one now. He adjusted her brace to fit a little more comfortably and measured with the scoliometer. There is about 5 degrees correction just between being in the brace and out and quite a bit of correction in her rotation. He was amazed that all of Dr.Gorries patients (he saw 4 of them) are extremely flexible and their curves are not rigid (even the two older ones with curves in the high 60's). This is apparently due to the chiropractic care and physical therapy that Anna has done since diagnosed 3 years ago. Because of this she may actually get more correction than he expects of a person her age. He also explained to us that it's not just the curve degrees that are important but where the curve is and the type of curve, apparently a single curve in the 30's might be operated on but a double curve in the 40's might be ok if it is balanced and can be stabilized. So a very informative visit. Of course, I would have liked to have an x-ray that showed 50% improvement (especially since during the last 6 weeks she's actually worn the brace almost the recommended hours per day) but we probably won't be x-raying for another couple of months and 50% correction is more than likely only my stress- induced day dream.

To all of you who have younger children and kids with lesser curves - check out Spinecor if you haven't already!

[Celia]

Upon talking to LATigner, she helped make it possible to go to California and see Andrew Mills, the orthotist, a head of Spinecor from England today. My 12 year old daughter went down 10 degrees from original curve to a 28 with no compensating curve. I quote Mr. Mills stating a positve "significant change" to a "unique" European curve. Very positive result we wanted to share. Thanks to Lori, for all your support in every way possible! Mr. Mills commented his agreeing with all Dr. D in NY did before we even Xrayed today.

That is amazing news!!! I thought you mentioned in a previous post that the initial the correction was less than 5 degrees ? Has it improved with time ?

[Celia]

Celia,
We are pleased that her curve held during that crucial 6 month growth spurt. However, the compensatory curve in her thoracic has gone up 10 degrees in 4 months and is now considered a real curve. The ortho at Shriner's said there is nothing that can be done for that curve because they would not recommend a brace ring and Nicole wouldn't wear it anyway. So she basically has 2 40-degree curves. We have no control of the thoracic.
That is very frustrating.

Melissa

I'm really sorry to hear about the compensatory curve....has it become rigid ? What is a brace ring ?

[Celia]

she has a true double curve that is very well balanced - both in the mid to upper 40's. Because she has no pain and her posture is very good he said that he would not recommend chasing down a surgeon at this point. He said if we saw orthopedic surgeons here in the US they would be more likely recommend surgey for a curve her size than doctors in England and Europe. But because of the double curve any fusion would be really long and very limiting movement wise.

She has made some progress in the SpineCor brace but he said because of her age (almost 16), risser sign and physical maturity we would probably not be looking at a tremendous amount of correction but are shooting for stabilization of the curve.

Lori,

What a difficult situation to be in....

[LATigner]

Thanks Celia - I do have hope that her curve will still go down because of her flexibility and if it stabilizes she should be ok for many years. Fortunately, my daughter is very strong-minded and not willing to let scoliosis get in the way of living her life to the fullest. It is hard to accept as a parent that there are things we can't fix for our kids, things they have to suffer through and learn to live with. We watched our friends daughter go through treatment after treatment for a brain tumor from ages 6 to 12 - and then lose the battle so every day I am thankful that it is scoliosis we are dealing with and not cancer. Thanks for the support and encouragement. Lori