spinecor

[cyprusmom]

Hi Pola,
I am glad that Anastasia's curve is stable. I assume he confirmed everything the spinecor doctor said. I agree with you that surgeons are going to prepare for surgery because that is what they are trained to do. I have said a prayer for Anastasia that this brace continues to hold her curve. We both know our girls are at "high risk." That is not news at all. Did the Dr. have anything positive to say about Spinecor?
As far as exercises are concerned, they are to be done in the brace. Every movement that is made is supposed to be conditioning the body to be made correctly. That is why our girls should have their 2-hour break when they are just sitting around watching t.v. or doing homework. When they are active in dance, or running around, or playing a sport, they need to wear their brace. Did your surgeon say this to you today or did your Spinecor Doctor say it? Because I thought the surgeons didn't believe in exercises for scoli.
Anastasia mentioned something about possibly coming to the United States this summer? We would love to meet you somewhere if you come. Let me know. Take care. My thoughts are with you. If our girls need surgery, we will all get through it like all the other children have. We are in the same boat even though we live so far away!
Melissa

Thanks for all your good thoughts. The orthopedic surgeon we see in Greece is in favor of the spinecor and collaborates with the orthotist. Although his first reaction was to prescribe the Boston probably because of her advanced curves, he later said that both have the same chances of success or failure. And he added that the hard ones fail mostly because of the kids discomfort and ending up not wearing it sufficient hours. (It is also the financial matter as with all of us, Boston is cheaper than Spinecor,and most people here in Cyprus do not have medical insurance that would cover that.)

As far as exercises, both the orthotist and physiotherapist instructed us originally to do the spinecor exercises out of the brace and everything else, ballet, PE, basketball, etc in the brace. The surgeon insisted that ALL exercises should be in brace. Like I said, this surgeon is in favor of the spinecor and believes in its philosophy about movement. I think Anastasia prefers to do them in brace anyway so maybe she won't react so much now.

These next 3 months will be so critical for her. She is in good spirits which is so important but I will be on top of her like never before.... I will be watching that shoulder blade and the thorax like a hawk.....

We also have an appointment with doctors from a Shrinners hospital who visit Cyprus every April. For a second opinion, hopefully not a confusing one.

As far as us visiting the US this summer most probably we will be in California but I will send you a private message on that.

[MATJESNIC]

Pola,
I think it's wonderful that the orthopedic surgeon is supportive of Spinecor. I would love to find someone like that here. I just sent a letter of appeal to my insurance company who is insisting on paying us $250 for a $3,500 brace. That is great that Anastasia will get looked at by a doctor from Shriner's. Nicole hasn't done her exercises for the last 2 days. Sometimes it is difficult to find the time because when she comes home from dance, she has to take her 2-hour break. She can't do the exercises without the brace. Sometimes it's after 10 on a school night and she is beat. Every day is different as far as schedules is concerned. But it really upsets me when we miss. At least she is doing her corrective position when she does the side bend in ballet. She just started district chorus. That is one more thing to add to the list. It is so difficult to find a 2-hour block of time. I usually leave it til the end of the day because Nicole hates taking it off and putting it back on when she is pressed for time.
Nicole just bought a dress for the father-daughter dance. In the back, I can see where her shoulder blade sticks out. I wonder if I would have noticed if I didn't know about it. As far as the bodysuits go, Nicole doesn't like the ones from Special-Clothes. But is wearing them. She really loves the Spinecor ones. Take care, Melissa

[Celia]

Hey gang,

Some of these insurance companies are really the pits ! We've had really good service with our insurance company, so I can't complain.

Pola, congrats on the positive appointment with the ortho ! Hopefully we'll see further improvement at the next visit. I think Gerbo and Lisanna are having their fitting with Mr. Mills tomorrow and I want to wish them well. Cheryl is also scheduled to have an evaluation with Dr. Rivard next week ? If so, good luck !!!!! How long is your stay in Montreal ? Try to visit the Biodome and the old Montreal district - very fascinating !

Alison, thanks for the kudos ! I've read your story on Spinekids, very nice !

[gerbo]

I think Gerbo and daughter are having their fitting with Mr. Mills tomorrow and I want to wish them well.

thanks (+ Louise, my wife, is coming as well) All very nervous, not somuch about the brace as such, but about her being braced again after 5 weeks of bliss and freedom (head in the sand can be a comfortable position)

gerbo

[MATJESNIC]

Gerbo,
Lots of luck with the appointment.
Well, gang, Nicole just left for the Father-Daughter Dance at her school. The last one because she is in 6th grade. She is brace-free for the evening which will probably be about 5 hours total (the ice cream place afterwards is always so crowded). But she has earned it. She is wearing a beautiful pink dress and looks like a teenager already. My baby is all grown up. Hopefully she won't do any growing until she comes back and puts her brace on!! Have a good weekend all!
Melissa

[cherylplinder]

Gerbo,

I've had you on my heart all day. Hope you had a wonderful fitting!

Melissa,
It's bittersweet to watch them grow!

[cherylplinder]

Montreal

We are all set for our visit Tuesday with Dr. Rivard. I am anxious because the Boston brace ended up not correcting Rachel's curve at all, even after modifications with pads. I started out thinking I needed to choose betweeen the two braces a couple of weeks ago. Now the Boston is not even an option.
IF this doesn't work I am not sure what our options will be, so pray that it does!
Thanks for all the encouragement and advice, all!
Cheryl

[MATJESNIC]

Cheryl,
I wish you lots of luck on your visit. I will be thinking about you that day. Did you ever mention your daughter's age and degree of curve? If so, I am sorry I missed it. Some of the Parents have been discussing stapling as an option to bracing for kids whose curves are small enough. Did you see that discussion over on SpineKids. Feel free to ask me anything about Spinecor. I am always here to answer your questions. Also, if your daughter wants to talk to my daughter about it, that could be easily arranged. Good luck and God Bless!
Melissa

[cherylplinder]

Rachel's Curves

Melissa,

Rachel has a thoracic curve of 33 degress and lumbar 27 degrees. She is 10 years old and has had scoliosis for 2 years. In the beginning her curves were 18 to 19 degrees each. In July her thoracic curve increased to 24 degrees; he did not measure her lumbar curve on that appointment. He asked me what I wanted to do, as he usually didn't brace until 25 but 24 was close enough if I wanted to brace her. I just left the decision to him. I had never done any research and didn't know what a huge increase that was. She had been stable for 2 years and my older daughter's curves never increased ( although we didn't catch her scoliosis until she was 13 and had her period.) Sarah's curve was in the low teens and was a single curve. I was horrified at her December appointment at the 9 degree increase.
Do you know where they do stapling and what degrees? I asked my ortho about it last week, but he indicated it was still a surgery and didn't comment further. It seemed minimally invasive to me, and the article indicated good results.
I had been thinking about how to explore that option. I read about it at one of the Shriners Hospital sites, but the article was dated 2001, I think. I didn't know if it was still being done. I need to check out Spinekids. I have not been there.
Thanks for your encouragement and thanks for caring.
Cheryl

[cherylplinder]

Rachel's Curves

Melissa,

Rachel has a thoracic curve of 33 degress and lumbar 27 degrees. She is 10 years old and has had scoliosis for 2 years. In the beginning her curves were 18 to 19 degrees each. In July her thoracic curve increased to 24 degrees; he did not measure her lumbar curve on that appointment. He asked me what I wanted to do, as he usually didn't brace until 25 but 24 was close enough if I wanted to brace her. I just left the decision to him. I had never done any research and didn't know what a huge increase that was. She had been stable for 2 years and my older daughter's curves never increased ( although we didn't catch her scoliosis until she was 13 and had her period.) Sarah's curve was in the low teens and was a single curve. I was horrified at her December appointment at the 9 degree increase.
Do you know where they do stapling and what degrees? I asked my ortho about it last week, but he indicated it was still a surgery and didn't comment further. It seemed minimally invasive to me, and the article indicated good results.
I had been thinking about how to explore that option. I read about it at one of the Shriners Hospital sites, but the article was dated 2001, I think. I didn't know if it was still being done. I need to check out Spinekids. I have not been there.
Thanks for your encouragement and thanks for caring.
Cheryl

[cherylplinder]

Rachel's Curves

Melissa,

Rachel has a thoracic curve of 33 degress and lumbar 27 degrees. She is 10 years old and has had scoliosis for 2 years. In the beginning her curves were 18 to 19 degrees each. In July her thoracic curve increased to 24 degrees; he did not measure her lumbar curve on that appointment. He asked me what I wanted to do, as he usually didn't brace until 25 but 24 was close enough if I wanted to brace her. I just left the decision to him. I had never done any research and didn't know what a huge increase that was. She had been stable for 2 years and my older daughter's curves never increased ( although we didn't catch her scoliosis until she was 13 and had her period.) Sarah's curve was in the low teens and was a single curve. I was horrified at her December appointment at the 9 degree increase.
Do you know where they do stapling and what degrees? I asked my ortho about it last week, but he indicated it was still a surgery and didn't comment further. It seemed minimally invasive to me, and the article indicated good results.
I had been thinking about how to explore that option. I read about it at one of the Shriners Hospital sites, but the article was dated 2001, I think. I didn't know if it was still being done. I need to check out Spinekids. I have not been there.
Thanks for your encouragement and thanks for caring.
Cheryl

[cherylplinder]

Rachel's Curves

Melissa,

Rachel has a thoracic curve of 33 degress and lumbar 27 degrees. She is 10 years old and has had scoliosis for 2 years. In the beginning her curves were 18 to 19 degrees each. In July her thoracic curve increased to 24 degrees; he did not measure her lumbar curve on that appointment. He asked me what I wanted to do, as he usually didn't brace until 25 but 24 was close enough if I wanted to brace her. I just left the decision to him. I had never done any research and didn't know what a huge increase that was. She had been stable for 2 years and my older daughter's curves never increased ( although we didn't catch her scoliosis until she was 13 and had her period.) Sarah's curve was in the low teens and was a single curve. I was horrified at her December appointment at the 9 degree increase.
Do you know where they do stapling and what degrees? I asked my ortho about it last week, but he indicated it was still a surgery and didn't comment further. It seemed minimally invasive to me, and the article indicated good results.
I had been thinking about how to explore that option. I read about it at one of the Shriners Hospital sites, but the article was dated 2001, I think. I didn't know if it was still being done. I need to check out Spinekids. I have not been there.
Thanks for your encouragement and thanks for caring.
Cheryl

[cherylplinder]

My computer went haywire as I entered that post! Sorry!

[mariaf]

Hi Cheryl,

As you can see from my signature, my son had the stapling...and, yes, they are still performing these surgeries, more and more it would seem. I'd be happy to answer any questions you have here or you can PM me.

Best of luck,

[gerbo]

Hi everybody

Long day on friday. First appointment with consultant due at 11.20, but running a good hour behind saw him at 12.30 only.

Pleasant at straighttalking, seemed to listen and answer questions much better then previous consultant.

Spinecor is the only brace they use mainly because of its wearing comfort and because the evidence is considered to be as good as for other braces, although as far as he was concerned, "the evidence for bracing in general wasn't particu;arly convincing anyway". However, "as we have nothing to offer between observation and surgery" "we might as well try the spinecor". "If he had a daughter, she'd be in a spinecor" He wasn't raving about the current spinecor evidence as it has been produced by the makers and developpers of the brace "who have a personal interest". However, on the other side "she should be an ideal candidate, with a curve in the 20's and major growth spurt to come) Interestingly, he measured our last months picture out of brace at only 21 degree, which made us slightly insecure again; had the previous approach been ok afterall????

Next; a "Qualscan", which is an imaging method using zebra stripe type lights projected over the body and little stickers placed over the spinal processes to give an indication of the curve. This method is additional to x-rays, to hopefully reduce the need for x-rays, whisl still having an objective measuring method. Quite interesting

Next; fitting of spinecor with orthotist. What we thought was going to be an at the most one hour appointment, turned out to be an at least 3 hour marathon session, with a once again to me very novel assesment method using rather advanced looking electronic equipment to produce a three dimensional image of her trunk on the computer with the aim to classify the scoliosis, which is relevant for the way the brace bands are being fitted.

Eventually left after lots of instruction on how to put on/ take off and with advice on a slow building up of wearingtime over 7-10 days.

Initial impressions; yes it feels much more comfortable, although I am a bit worried about the bands around the groin area and how much irritation they might cause, Louise already ordered some cycling shorts to deal with that (moles are a protected species here, so cannot use their skin ( ))

hugs feel normal with the brace on

shopping on saturday she noticed a bondage type outfit in the window of "Ann Summers" (a high street shop offering lingery and other equipment designed for let's say "adult entertainment purpose"), and pointed out that it was "just like her brace" (don't they grow up quick)

still feel insecure as we now have 3 months to wait till next x-ray and 6 months to next consultant appointment. Is it going to make a difference?????? I kind of know we are doing as much as we can do currently, do not feel much easier at the moment though, it all feels rather tough to all of us.

gerbo