spinecor

[WNCmom]

Cheryl--

I'm a little hesitant to answer that question, since the term was used by a message (MFR) therapist and it's only her perspective, however, my understanding of what she was saying is that when a curve reaches a certain point and the muscles around it are stretched to the limit on the convex side and tightened up on the concave side, the muscles themselves can pull on the curve without any growth happening, and increase the angle, or, as she put it, cause additional spinal "collapse." At least part of the idea of SI and, in our case, MFR, is to break the pattern and allow the muscle to release the curve so the spine can grow straight if it wants to. Only time will tell if this will help.

Best of luck with Rachael's checkup. Please let us know how it turns out.

Mary Ellen

[rtremb]

Thank you everyone for your posts. It is really really nice to know we have your support as go through this big ordeal.

Dr. Rivard talks about spine collapse too - sounds awful!!

We had a brief discussion about traction yesterday with Dr. Rivard - he did not favour it since it could lead to weakened muscles. He said if they put Esme in traction she would have a great x-ray - maybe 35 degree curves but that it would not be good for her though.

We asked when an out of brace x-ray would be done and he said they don't like to do one until the brace has been worn for 18 months because it can discourage the patient. We go back in mid-February for another check-up unless Esme is having trouble with the brace and not wearing it then he asked we come back sooner.

Celia:
No we haven't discussed the fusionless surgery any further with Dr. Rivard.

I gave Dr. Rivard a copy of the letter to Spinecor in England (about Ontario Assistive Devices). Spinecor have responded to me by email saying a Canadian representative is going to submit the information about the brace to Assistive Devices.

Ruth

[WNCmom]

Just a question, Ruth:

Am I correct in thinking they feel okay about not doing an OOB x-ray for 18 months because if the curve progresses it will show on an in-brace x-ray? That would be particularly important in the case of Esme or my son Sidney, where curves are advanced....

Mary Ellen

[rtremb]

Yes, Dr. Rivard said that they would know if the curves are progressing - it would show on the in-brace x-ray. Sorry about that it is hard to remember everything that is said.
Ruth

[flowerpower]

Ruth,

There is no quick fix to this condition and people who believe that surgery should be the first line of treatment are seriously deluding themselves. Complications from surgery even though immediately not evident but manifests later on can be pretty nasty especially when it involves the vertebrae and is so close to the spinal cord. Surgery should always be a last resort after all other treatments have been exhausted - at least that's my philosophy. I'm sure whatever you are doing is having a positive effect on Esme's curves even though the changes are not immediately evident. The news is encouraging! You're doing a great job!!!!

Did you ask dr. Rivard anything more on the fusionless surgery they are investigating in Europe?

Celia,

There certainly is no quick, perfect, 100% forever guaranteed fix to this condition, spinecor included. Has anyone really said they believed surgery should be the first line of treatment? Please remember, there are people who have tried other methods first, including spinecor, that didn't work. Some people may have chosen surgery because other treatments weren't feasible for them. I don't think anyone who has chosen a surgical method has done so lightly so to say they are delusional in choosing a surgical approach (like VBS) first is rather mean-spirited. A while back there was a post (I think on this thread) where someone made the comment that spinecor is the only brace that can "cure" scoliosis - now that comment I find delusional as there is no cure for scoliosis, only treatment, which one hopes will hold the curve(s) and keep them from progressing. Which other treatments will you choose in the event spinecor isn't successful...hard bracing? We all know your stance on surgery, indeed it is not an attractive choice for anyone, it is one of the hardest decisions to make as a parent. So please, stop putting other people down for their choices in treatment; that is not what this forum should be about. Discussion and debate is fine, I love to hear other experiences and opinions, there is much to think about and learn. Maybe choose your words a little more carefully, show some compassion for others.

And just to be clear I am still keeping an open mind and researching all treatment options should my 9 y.o. show curve progression at next appt.

Renee

[Celia]

I belong to a support group that deals mainly with non operative treatments to scoliosis and I found out the hard way by going to the libraray that the following articles are in Polish even though the abstracts are in English SO.... one of our members who speaks Polish sent Dr. Karski an e-mail to ask if he could provide us with the English translated copies and he said YES!!!!! He did all this research, why not take advantage of it! ....Baby steps.


1: Ortop Traumatol Rehabil. 2005 Feb 28;7(1):28-35.
New conservative treatment of idiopathic scoliosis: effectiveness of therapy.
Karski T, Madej J, Rehák L, Kokavec M, Karski J, Latalski M, Ka³akucki J.
Background. This article provides basic information concerning a new conservative treatment for idiopathic scoliosis, with appropriate asymmetric flexion-rotation exercises and special redressing positions. Material and method. The analysis was based on 288 children with scoliosis and a control group of 268 children. The authors describe the most important exercises and provide a statistical analysis of treatment outcome in children with idiopathic scoliosis. Results and Conclusions. Early detection of the risk of scoliosis and correct therapy through new conservative treatment based on exercises make it possible not only to limit the progression of spinal deformity (61%), but also, in some cases of incipient scoliosis, to reduce the curvature (32%).
PMID: 17675953 [PubMed - in process]

[Celia]

Has anyone really said they believed surgery should be the first line of treatment? Renee

Yes! Dr. D'Andrea at the most recent SRS meeting indicated that she would staple a child with a 15 degree curve as the first method of treatment.

[flowerpower]

I meant has any parent on this forum said that they believe surgery should be the first line of treatment?

Renee

[Celia]

If parents are going to doctors who have these belief systems don't you think they'll be swayed in choosing the surgical route. Think about the BRAIST study which in effect will eliminate bracing as an option if they find bracing is ineffective which everyone knows is true in the later stages but yet....is not offered in the early stages of scoliosis. Is this what we want for our children????

[flowerpower]

There are parents who have been advised by drs. that surgery is needed yet are choosing another approach first. One good example is Ruth, it's posted in her sig. I do see your point though, how one could be swayed by one dr. opinion if they don't look elsewhere. That is why forums such as these are beneficial, you're not just hearing from a dr. you are actually hearing from other people with different experiences, different dr. approaches. Bracing is not totally ineffective; it works for a few and does have its place in at least holding/maintaining curves to maximize growth prior to surgery. However, the physical, emotional, and compliance aspects of bracing are very hard to deal with, and many take that into consideration. It appears that drs. are exploring/researching/inventing ways to treat early onset scoliosis. Deciding which choice is better; years of bracing to possibly avoid surgery or surgery to avoid years of bracing and possible surgery is really a matter of opinion and individual choice. Can't say either is right or wrong, we are all trying to make the best choices for our different situations.

Renee

[Celia]

I'm trying to think longterm and the options that will be availble for my children's children many years from now. As we all know there is a genetic link to scoliosis. I certainly hope surgery is not the only option available to my grandchildren and I pray these decisions are not made for us by doctors alone.

[flowerpower]

I totally agree with you there-

Renee

[cherylplinder]

Mary Ellen,
Thanks for your response.
My pastor was just relating to me today that he felt the massage techniques used on his son with Cerebral Palsy delayed his fusion for many years.
He said that muscle bends bone. That would be factual in Cerebral palsy.

One wonders how much it translates to AIS and Juvenile Idiopathic Scoliosis.
I want to remember to ask this time about how the fascia affects Rachel's scoliosis and if there is anything else that might help us achieve correction.

[jillw]

Cheryl, I was just looking at your signature and see Rachel last went in July...does that mean she will be going again some time in Dec or Jan?

Jill

[amandap]

Celia,

I just listened to Dr. D'Andrea (twice) @ the recent SRS meeing and not once does she that.

I welcome everyone here to listen:

http://www.istreamplanet.com/srs/def...&conf=7&edi=23

scroll down and click on Dr. D'Andrea's presentation.

~A