spinecor

[jillw]

Well, we had another appointment for Katie. It's been 2 1/4 years since Katie has been wearing her brace. I'd asked her doctor for an OUT of brace xray also this time-while he really didn't think it was necessary (for reasons discussed elsewhere) he kindly accomodated us. Her out of brace curve is now basically half of what it had been in the beginning:it is down to 10T/3T. (see my signature for it's history) I had been told it takes at least 2 years for curve reductions with spinecor to potentially start to "stick". Since we were so close to 2 years, I was just hoping to ensure that her out of brace curve hadn't crept up 5 degrees or more-I wasn't expecting to see a curve reduction. It was a pleasant surprise. I know with scoli we still have a long war ahead of us, but it's nice to have little victories here and there. Because the curve was so low they didn't feel they needed to take an in brace xray also so we avoided the extra radiation exposure.

Just thought I'd post my update...it's been quiet on this board and I hope the rest of you will post your updates as you have your appointments!

[jillw]

p.s. just saw my previous post from before today - where I referred to a "stabile" curve. what, do I think i'm channeling my italian ancestry? Like "fragile" in the movie "A Christmas Story" where the father pronounces, "frajeelay - must be italian"! This right before he opens the lovely leg lamp.

[mamamax]

My heart is smiling big for you and Katie :-) Cause to celebrate for certain - and a good day this!

[christine2]

Excellent news Jill


We also had an out of brace in Oct 09. 11*, did the same, did not bother w/ an in brace at that time. Yes we still have a long road ahead but the little victorys keep us going. I have a good feeling that when all this is done my daughter may end up around 11*. That would be incredible!!

My daughter is still doing well emotionally in brace. I have been slightly flexable about wearing it. She actually slept w/out last night. She does that prob. 2x a month.

Our next appt is in April, I will start stressing mid to end of March

[mamamax]

A reason for my heart to smile big two days in a row? How wonderful is that! Congrats and best wishes for continued success :-)

[jillw]

THanks guys.

Christine, glad to hear your daughter is still doing well emotionally. I'm feeling a little more relaxed going into the summer - not that katie isn't going to comply with brace wearing most of the time, but those days in the summer when she goes 4+ hours straight without the brace (instead of 2 hours twice a day) I won't worry as much. We have to be realistic and it happens numerous times over the summer with swimming and such, I just won't be as uptight in my head about it. That will be nice.... (on the other hand she's getting closer to that dreaded growth spurt that usually brings the onset of scoliosis for the AIS folks. i'm told 10 ish and on is when that growth often begins. i suspect she will be a late developer though)

[MJB]

It's been a very long time... stressed out...

We went to see Dr. Rivard yesterday and every time we go Halle is getting worse... Last time she had gone up to 14 degrees (in brace) from 9 and now this time she is up to 23 degrees (in brace). I don't know what to do anymore... she wears her brace 24 hours a day, only takes it off to shower, she doesn't take breaks because her back hurts during breaks. She is 10 years old now and starting puberty, so Dr. Rivard said that this time is critical... I am so worried because it seems like with her onset of puberty she is getting so much worse and this is IN her brace... what is she OUT of her brace? How is she going to hold up when she is full blown going through puberty, gets her period and everything?

[mariaf]

Hi MJB,

I’m sorry to hear of this latest result and can certainly understand your stress level. Did Dr. Rivard say anything else beside that this time is critical? Did he make any recommendation(s) to try to avoid fusion?

My first thought is that I would get an out-of-brace x-ray as soon as possible, after your daughter has not worn the brace for 24-48 hours. You need to know what her curve really is. Unfortunately, I’ve heard of similar cases before where a child’s in-brace numbers started to creep up, and then when an OOB x-ray was finally taken, the child had progressed to the point where fusion was the only option.

I am NOT saying that is the case for your daughter – but I feel you should act quickly – maybe get another opinion from a doctor who offers other alternatives (perhaps a different type of brace? VBS?). The bottom line, as I’m sure you are aware, is to keep the curve at a level where you can avoid fusion.

Depending on where you live, I’m sure you could get some recommendations. In particular, I would look for a doctor who specializes in juvenile scoliosis. You can’t go wrong with Dr. Betz and his team at Shriners in Philadelphia. There are also a few doctors in NY who treat lots of JIS cases and seem to be on the cutting edge when it comes to treatment options (Drs. Vitale and Lonner come to mind).

Hope this helps. Best of luck and please keep us posted.

[MJB]

Thank you so much for your response. I am terrified that out of brace her curve is probably so bad... she started off at 32 degrees, once they got her in the brace it was down to 9 degrees. Now it's 23 degrees in the brace. I have made an appointment with my family doctor for tomorrow, I called and left a message for a nurse at Sick Kids hospital in Toronto, which is where we live anyway. They have given me all the information to give to my doctor for a referral to them. They would use a different brace, as they do not use Spinecor there. She mentioned the TLSO brace, I am so nervous to put her in a rigid brace but I don't know what to do anymore. She is terrified that she will need surgery, she is only 10 and has a major growth spurt ahead of her, so I don't see things getting any better with the Spinecor.

[MJB]

and no, he didn't say anything else... all he said to her was "what's going on, are you not wearing your brace?" to which I jumped in and said she wears it 24 hours a day. He only spends like 2 minutes with us every time we go there, I feel so ripped off travelling 6 hours to get there for such a short appointment with him.

[Pooka1]

and no, he didn't say anything else... all he said to her was "what's going on, are you not wearing your brace?" to which I jumped in and said she wears it 24 hours a day. He only spends like 2 minutes with us every time we go there, I feel so ripped off traveling 6 hours to get there for such a short appointment with him.

OUTRAGEOUS! I guess he can't even imagine that his brace might not hold a curve. That is NO WAY to conduct research which he is claiming to do.

Maria has such good advice here. Don't start worrying yet. You might still be within VBS range and you are ahead of the growth spurt.

If the curve has progressed markedly, don't beat yourself up. T curves have the highest rate of progression. That's not your fault. All your decisions to date and into the future are correct by definition.

Good luck.

[emarismom]

MJB,

I am so sorry to hear that your daughter's curve is progressing like this. I am with Maria on this one. Go and get an out of brace xray. This is the one aspect of the Spinecor that I have always had issue with. I do not understand how they can go for years without an out of brace xray.

I too would be upset to travel that far, and having invested so much time, effort, and money into this "product" to be seen for such a short time. The reality of it is that you have done all that you can to try to prevent your daughter's curve from worsening. All of us who have gone this route have known that this may or may not work. If your daughter's curve has progressed, it is not because you didn't do enough. Some curves are like that.

By the way, Emily's out of brace curve has gone up too. It is at 27. In brace it is still in the upper teens. I think she is in her growth spurt, if not, she is very close. If I see that the Spinecor is truly not holding her curve, I won't be trying any other brace. I may consider VBS, but more than likely I would wait for surgery.

[MJB]

Thanks everyone! I appreciate the responses and encouragement! We are getting an out of brace xray tomorrow, she will only be out of her brace for 22 hours by the time she gets it tomorrow but that will be pretty good still. She has been complaining of discomfort since she took it off 3 hours ago, as I said before, she hates taking her breaks.

Her father does not want her in a hard brace, because of the muscle atrophy thing but we will see what Sick Kids says... He would really like her to somehow strengthen her core... Dr. Rivard will not allow any type of physiotherapy or chiropractor or anything. DH does not agree with that and he has already done his research today and found things to support having added things to the treatment. He is also going to start training her in boxing soon, he is a boxing instructor and teaches adults, teens and children... this will be good for her to gain some strength in her core for sure.

[MJB]

OUTRAGEOUS! I guess he can't even imagine that his brace might not hold a curve. That is NO WAY to conduct research which he is claiming to do.

Maria has such good advice here. Don't start worrying yet. You might still be within VBS range and you are ahead of the growth spurt.

If the curve has progressed markedly, don't beat yourself up. T curves have the highest rate of progression. That's not your fault. All your decisions to date and into the future are correct by definition.

Good luck.

Yep, that's exactly how I felt... that is why I jumped in and made sure he knows that she is probably one of his most serious patients with wearing her brace all the time!

[mariaf]

OUTRAGEOUS! I guess he can't even imagine that his brace might not hold a curve. That is NO WAY to conduct research which he is claiming to do.

It certainly is outrageous!! The patient in this case has obviously been very compliant - and even if she wasn't, geez, SHE'S 8 YEARS OLD!! How dare he try to make her feel that it was something she did that made her curve go up.

I can't even come up with the words to decribe how wrong that is!! As a parent, I would be absolutely furious with him as well.

I'm also in agreement with everyone else, MJB, when they say it is also NOTHING you did either. These curves sometimes have a mind of their own. Had you not been so vigilant with your daughter's care, her curve could be larger today.

Hopefully, there is still time to try other options. I think Sharon said it best when she said "your decisions to date and into the future are correct by definition".