spinecor

[mpj]

Back from Montreal again.

Hi All,

I am a little tardy in posting, as we visited Montreal a few weeks ago. Just a little crazy with the end of the school year and getting into the summer groove. Anyway, all is well. Madeline is still holding at about three degrees.

Sarah

[RugbyLaura]

Sarah, excellent news about Madeline!

Just back from Immy's 1 year review. Curve measured 26 degrees, she has grown 1.5 inches in 3 months. All is well.

Only in brace xrays for the forseable future. We are happy with this approach.

Laura

[bb1013]

I was wondering if anyone has even seen Dr Craig Cohen. He is in Charlotte,NC. I spoke with him last week and was considering taking my daughter to him. I was just wondering if anyone had any opinions?

Thanks,
Jason

[jillw]

Jason, Sorry I dont know anything about that doctor.

Sarah, what wonderful news! Thanks for sharing. I don't remember, how long has she been wearing the brace?

Laura, great news about Immy too! I always wonder how spinecor will do during that fast growth spurts that come with pre-adolescent and the fact that her curve held despite the fast growth is very encouraging! When do you go back, in 5 months?

[emarismom]

Laura and Sarah,

Great News!! I am taking Emily to her regular orthopedic doctor here in Miami on Thursday, as we haven't seen him in over 6 months. She will be getting an out of brace xray. I hope I et the same type of news that you two did!!

Michelle

[mpj]

Madeline

Hi Jill,

Madeline has been in her brace for a little over 1.5 years. She started out at about 21 degrees.

Sarah

[jillw]

Sarah, I hope in another 10 months or so (which will be approx 1.5 years for katie) that we will be in your shoes!

Michelle, good luck on thursday - let us know how it goes! How long are you going to have Emily out of brace before the xray? Don't they say it should be at least a few days? (if i recall correctly)

[emarismom]

Her appointment is for 2:30 on Thursday, so I am going to take her out of the brace on Wednesday morning. That will give her about 30 hours brace free. (She is so excited) If her curve is around 10-12 degrees out of the brace, I think we are going to try keeping her out during the days at least for the summer. Her chiro (Dr. Oulette) told me to have her xray done here (Miami), let him know the results, and if things are going well, we can try and see what happens.

Remember, that Emily's curve is not idiopathic, it is caused by her Chiari/Syringomyelia. That may be why he is willing to handle her case a little differently. He also mentioned that he did not want to have to keep her in the brace for a straight 6-7 years. Since she was braced at 8 and is a risser 0, and has no signs of development yet, I guess he thinks we can give her a few months of wait and watch. I'll be talking to him on Thursday afternoon to see what he thinks after the xray.

All I know is that I think I am more excited about the thought of taking her out of the brace than she is. It has been so hot here, I feel so bad for her.

[emarismom]

Emily's appointment went well and there has been no progression of her scoliosis in the past year. I guess that is the "good" news. The bad news is that her out of brace curve is 23 degrees. This is basically the same as it was one year ago when we put her in the brace (21 out of brace then).

So while it isn't bad, it leaves us in the exact same place I was one year ago. Except we are one year closer to maturity, when this will hopefully all be over with.

At this point I have no idea if the brace is holding Emily's curve, or if the scoliosis is never going to progress. I guess everyone here is in that position, but because of Emily's prior surgery (brain decompression for Chiari), that may have halted the scoliosis progression, which has been stable for the 4 years since the surgery. She has stayed between 18-24 during this time frame.

I put her in the brace hoping to keep her curve low and to hopefully reduce it. I'm sorry for the ranting, I'm just disappointed and really not even sure if it is fair to keep her in the brace, with no proof that it is doing anything to "help" the situation. Part of me wants to just take her out and wait for actual progression to start. Of course if I were to do that and her curve did progress I'd be miserable too.

I was very surprised that the orthopedic was really leaning towards keeping her in the brace, stating it is better to over treat than under treat. I expected him to say "I never thought she needed it in the first place". I contacted the chiro who is following her. I am going to send him pictures of her in the brace tomorrow and FED Ex him the xray from today and the last one he took. Then we will decide when I need to make my next trip up.

[WNCmom]

Emarismom--

I just want to acknowledge your post. It must be frustrating to be in this situation. But what wonderful news that the curve has not progressed! I wish that were true for my 12 yo son, whose curve is progressing in SpineCor. Dr. Ouellette also fitted my son's brace. Lately we have been told his scoli is also not ideopathic, but a Marfan-like condition is driving it. We are looking at surgery (And I apologize if you already know this; I can't remember all the people who responded to my post). In spite of that, he is now attending a residential camp for a month, SpineCor and all. Of course, it's a bit cooler here in the NC mountains than where you are.

I just want you to know that if you do continue with the brace, it's still so much better than a Boston or other rigid orthosis.

Thank you for posting, and I hope you'll continue to let us know what's happening. I'm thinking of you.

[emarismom]

I know that the Spinecor is MUCH better than the rigid brace!! One of the reasons I got the Spinecor was to try to prevent the need for a rigid brace in the future.

Emily isn't even that upset that she won't be losing her brace now, as we hoped to try and do. Today she told me the real reason it is bothering her is that at camp when the girls go swimming, she has to take it off and hide it in her bag. She is really scared that the other kids will see it. She has recently become very concious of people seeing it or asking about it. Sometimes if someone new asks why she wears that (with some shirts a portion is visible), she replies "It's none of your business." Granted she is right, it's nobodys business, people, especially children are curious and want to know.

It is wonderful that your son is able to go away to camp. We spent a week in the NC mountains about a year and a half ago, what a beautiful place it is.

[RugbyLaura]

Hi Michelle,

I'm so sorry that Emily's curve measurement was disappointing. I don't really know what to say other than at least it has not increased...

Immy had an activity residential last week as thoroughly enjoyed it! She was totally independent as to when she took the brace off and appears to have been very sensible. She said it was a bit annoying having to remember to take it off / put it on / carry it around but her friends are all aware of it & are not really interested anymore. The only interest they show is when they argue over who is going to "help" Immy because they want to feel special too!

She is also reluctant to wear anything that shows even the smallest bit of brace - I am trying to understand this obsession but still think she should wear it with pride!

I hope Emily has THE BEST time at camp & please keep us up to date with what the chiro thinks.

Love,

Laura

[RugbyLaura]

Hi all,

Just going back to the "How long do the straps last" conversation of some time ago...

At Im's last appointment - 1 year into wearing the brace - most of the straps were replaced. She had some really bad rubbed bits on her waist & Mr Mills said these had been caused by the straps getting old & losing their elasticity.

The lack of elasticity means that they don't move with her when she bends & stretches.

Just a word of warning to others, if unexplained chaffing occurs out of the blue, check out the straps!

Her new straps are much better (although, as always after an appointment, I'm worried that he has made them too loose!)

Laura x

[christine2]

Hi Laura

Dr Colliard does not want to change the straps unless absolutly necessary. We are coming up to 2 years in the same brace, no replaced parts except for snaps. We will be needing the new crotch staps this next visit only because they are getting to short. My daughter is growing like a weed. Tall and slender!!

[mymollybt]

New......

My daughter Brooke has just been diagnosed. She is 7 1/2 and her initial xray shows an S shaped thoracolumbar curve 33 degrees and 29 degrees. We're not new to scoliosis as my older daughter has been monitored for the same curve but so far holding at about 18 degrees (fingers crossed!)........We will be seeing our local ped. orthoped tomorrow (deals mostly with broken bones not juv. scolio)....and we will be visiting Shriners in Philly next week. I've been reading up on everything offered and am VERY interested in learning more about the SpineCor brace. Am I going to have to fight to receive a prescription for this brace? The data seems so promising regarding this system and the philosophy behind it makes so much sense to me. Also I love the fact that sports can be played in brace. She is a competitive soccer player who plays on a U10 team at 7 years of age.....she'll be crushed if she can no longer play...that is one of my biggest fears.

Anyway.....please feel free to pm me any info, stories, etc....or just reply here.......are your children adapting well to this brace. I am so afraid of bracing just crushing her spirit. I've been a wreck since we received this diagnosis........I've got to snap out of my funk and focus on what to do here.

Thank you so much for any info you can supply.