spinecor

[MATJESNIC]

Gerbo,

Thanks for asking about the sleep issue. It was just that one night that I couldn't sleep. Not sure why.

They didn't comment on the way she was braced. They made a change by wrapping one of the straps around the top of her shoulders. It is hard to explain. It was obviously a difference of opinion. We just showed them how she was wearing it and asked if they would do anything differently. Boom, boom, boom, it was like someone doing origami, Dr. Coillard walked over to Nicole and did her fancy hand work and voila, a different way of wearing it. It was one change with one of the straps. We still don't know how Nicole is doing in it. We will know Nov or Dec.

Remember, Nicole only had one real curve in the beginning. So the way she was braced for 6 months was based on that curve. Then her compensating curve became a big, real curve. That is when we wondered if she needed a change. The Docs in Montreal thought she did.

Did you know there are 10 ways you can wear a Spinecor?


Melissa

[Carly's Mom]

Dr. Smouse?

Has anyone gone to Dr. Smouse in Sugar Land, Texas? We are not sure where to go. There or to Atlanta Georgia. Our daughter Carly is 14 and has a 26 degree. She has been wearing the Boston brace for 9 months and it has been terrible. She has gotten worse by 4 degrees. Very uncomforatable and HOT!. We are in Fort Worth, Texas

[MATJESNIC]

Hi Carly's Mom,

I don't blame you for wanting to find an alternative brace. But don't let the 4 degrees influence that decision. There is always a margin of error. Four degrees falls within that.

Good luck with finding the right Spinecor Doctor. I'm sorry I don't know anything about either of those Doctors except that 2 girls on SpineKids go to the one in Georgia.


Melissa

[Carly's Mom]

Thanks Melissa,

How is your daughter doing with her brace? Do you also see an Orthopedist? I am not sure yet if ours will write a prescription for the Spinecor brace. We sure hope so. Do you still see Dr. Deutchman?

[MATJESNIC]

Carly's Mom,

We see the orthopedics in Montreal for our Spinecor. We have also seen a few orthopedics at Shriner's in Phila because that is where we would go if Nicole has to have surgery. We don't know how Nicole is doing in her brace. Unfortunately we didn't catch the curves when they were little. You are so ahead of the game in that area. Nicole has been on the verge of surgery since her diagnosis, so we really need a miracle here. Even the doctors in Montreal don't expect anything more than a five degree correction out of brace. And that would be the best-case scenario. Next best would be staying the same. The worst would be getting any worse and needing surgery.
Did you say what your daughter's risser is?

Melissa

[gallathea]

Shriners docs against Spinecor?

Hi Melissa:

I just read your post on the Philly docs being anti-Spinecor. I'm curious about this since we're going to see Dr. Betz in a few weeks. Our six-year-old has been in the Spinecor for six weeks (we go to Montreal for her follow-up on Monday), but we wanted to find out more about the vertebral stapling in case her curve just gets worse. Did you see Dr. Betz? From everything I've read about him from other posts, people really like him. But I'm curious to know why he'd be against Spinecor. I guess I assumed he'd be more progressive.
Any thoughts? I want to be prepared.

Caroline

[cherylplinder]

I can't wait to hear the results of your followup. Your initial correction was amazing!
Cheryl

[MATJESNIC]

Caroline,

We didn't get to see Dr. Betz. But let me say that the Doctors were especially not supportive of Spinecor specifically for Nicole. She had a curve of 37 and from what they had read, Spinecor works mostly for small curves. With that being said, the Doctors, in general felt that there was not enough research on Spinecor. Of course, they are not going to prescribe something they don't know enough about. But if you go in there and show them that Spinecor has worked well for your daughter so far, then maybe they would have an open mind. None of the Doctors ever told us to please get our child out of that Spinecor because we are going to mess up her scoliosis. To be honest, I believe that most of the orthopedics look at my daughter (diagnosed at 11 with a big curve) and think that she will probably need surgery anyway.

Good luck to you.

Melissa

[Celia]

Melissa,

I totally agree with you on the perception by orthopaedic surgeons that rigid bracing is ineffective. The few times that I've read about a "success" the parents will often describe the doctor's reaction as one of amazement and disbelief! I don't know why this is, it could be they are so removed from bracing these children and the job now rests solely with the orthotist. In the old days they worked closely with orthotists to ensure that the brace fit properly and I think there were more success stories. Obviously they feel their only role is a surgical one.

[LindaRacine]

Melissa,

I totally agree with you on the perception by orthopaedic surgeons that rigid bracing is ineffective.

You're definitely getting a different impression than I am.

--Linda

[Celia]

O.k. Linda what gives you a different impression ?

[MATJESNIC]

Celia and Linda,

I was actually talking about Nicole in particular. I get the feeling that when an orthopedic sees an 11-year old with a risser 0 and a 37-40 degree curve, s/he thinks "90% chance this child will eventually need surgery no matter what we do." If she had a higher risser or a lower curve, then that might not be the case. There are some orthopedics who don't believe in bracing at all. There are a lot of opinions out there.
All the orthopedics in Phila who saw Nicole wanted us to put her in a hard brace.

Melissa

[LindaRacine]

Hi Melissa...

Scoliosis specialists have the responsibility of providing cost effective care to as many people as possible. Putting a kid who has a significant chance of requiring surgery into a brace, is not very cost effective... especially since compliance is such an issue.

I routinely talk to parents whose kids are being effectively braced with rigid braces. I've followed some "kids" for more than 15 years, whose curves never progressed to the point where they've needed surgery. Whether we're talking about rigid braces, or the Spinecor brace, obviously, the key is catching them at the right time.

Regards,
Linda

[LindaRacine]

O.k. Linda what gives you a different impression ?

Well, I routinely talk to parents whose kids have been put into a Boston brace, and when I attend UCSF scoliosis clinics, I see kids in Boston braces all of the time.

As I mentioned above, scoliosis specialists have to do what is right for the community as a whole. I think what you might be observing are cases where the specialist doesn't feel that a brace is appropriate, or that the child will be compliant.

--Linda

[Snoopy]

Celia,

I totally disagree with your comment about surgeons believing their only role is a surgical one. Like Melissa's daughter, my daughter was diagnosed with a curve that was already 36* and she too was a Risser 0. I took Jamie to FIVE different surgeons at three different hospitals and every one of them recommended a hard brace for her to try to avoid surgery! Jamie's orthotist and surgeon worked very closely together. We'd go downstairs to the orthotist and then go upstairs to see the surgeon. After her x-rays and exam, the orthotist would come into the room and we as a team-Jamie, surgeon, orthotist and myself--would decide what adjustments/changes we would make. We'd go back down to the orthotist's office make the changes, and then go back upstairs to the surgeon and this went on at each appointment until everyone was satisfied.

Had Jamie worn her brace as prescribed, could we have avoided surgery? I doubt it. When she was diagnosed, her Kyphosis was already at a point where we could have considered surgery but because she was only a Risser 0, thankfully they didn't want to do surgery until she was done growing. Had I known about Spinecor and put her in it, would we have avoided surgery? Probably not.

Mary Lou