spinecor

[rtremb]

Gerbo:
Thanks for your post. We are definitely not prepared to accept surgery as an option yet. We will not have the surgery done for cosmetic reasons. Unfortunately we have not been able to find torso rotation equipment in Ottawa - if we could we would be doing it. We are looking seriously at structural integration (SI) having read several research articles on the role of fascia in scoliosis. We have some calls out to physiotherapists at present who do SI and are hoping they will call us back to discuss. If we can find therapy or chiropractic or exercise or osteopathic treatments to keep Esme's curves where they are we will be happy with this for now. We hope to buy her time until new treatments become available. There is tons of research being done and we can only hope and pray that something will emerge during her lifetime that will avoid the spinal fusion.
Martha Hawes book Scoliosis and the Human Spine arrived today and my husband and I are finding it a very interesting read so far. As an adult she successfully reduced her surgical curves by 50% with exercise.
Hope springs eternal!!
Ruth

[WNCmom]

Ruth, you're an inspiration. Thanks for the tip on the book. We are also looking at more exercise options.

Mary Ellen

[rtremb]

We have an appointment with an advanced structural integration speicalist on Thursday afternoon. She has 20 years experience. We are excited to find out if she can help Esme. There are some websites we have found which show the treatment for SI scoliosis I will put them on the forum under a different thread.
Ruth

[rtremb]

Not too long ago I complained to the Ontario Ombudsman's office about the Spinecor brace not being covered by the Ontario Assistive Devices program. I posted a short note about it on the forum. This program provides about 75% financial coverage of TLSO back brace cost to Ontario residents.

Yesterday afternoon the Ombudsman's office called me back, after having had discussions with high level staff at Assistive Devices about my complaint. The Ombudsman's office has asked that I contact the manufacturers of Spinecor and ask them to submit detailed information about Spinecor to Ontario Assistive Devices in order that it can be considered for inclusion in this Ontario government program. I am to stay in touch with the Ombudsman's office about progress with this.

I emailed Dr. Rivard to ask for the correct contact information for Spinecor and he replied that it is the Head Office in England. I will try to reach them by telephone or email and hopefully they will submit the required information and the Spinecor brace will receive appropriate, unbiased consideration for inclusion by Ontario Assistive Devices.

While our family will likely not benefit from this my hope is that other families will. I am hoping that if Spinecor is covered by Ontario Assistive Devices more Ontario doctors will prescribe this brace when children's curves are lower when they will receive the most benefit from it. A frustration for our family has been that no action was taken when our children's curves were lower which might have prevented progression.

Ruth

[Celia]

Ruth,

What an incredibly wonderful thing you did! When Deirdre was still at Sick Kids the orthotist expressed the frustration many parents felt who were at one time getting reimbursed from the provincial plan for the Spinecor and then it was abruptly discontinued. I wonder if this had something to do with the brace no longer being carried at Sick Kids?? It's a shame these things boil down to money in the end. I don't regret the commute to Ste Justine and having the inventors of the brace treat Deirdre - she actually looks forward to the mini vacations to Montreal and the "Joie de Vivre"

[rtremb]

Celia:
Despite being told by Assistive Devices that they would not cover a brace we obtained in Quebec I have been informed by the Ombudsman's office that they do actually cover braces made/fitted anywhere in Canada. The Ombudsman's office said Assistive Devices suffered from a failure to communicate well with the public!! So if I can get Spinecor to submit the information a Spinecor fitted anywhere in Canada for an Ontario resident should be covered. This is, I think, progress........
Ruth

[MATJESNIC]

Ruth,

Good for you. I'm with you for helping other families even when it doesn't benefit our own children. Don't beat yourself up over not finding her curves when they were low. Dr. Rivard explained to me that there are many types of scoliosis curves and some are the progressive type that do not respond to treatment as well as the other types of curves. It really is not just about finding it early. I have met (and talked with) many people whose kids started treatments when curves were tiny and they still ended up with huge curves. You are doing the best you can and you can't expect any more from yourself.

[qiling]

SpineCor or Boston ?

Hi, all
My name is Elaine,my daughter Jennifer is 11yrs old diagnosied scoliosis on 7/30/07, the curve was T38L20, we seeing Dr.Police in Oakland Children Hospital CA, she had 20days in Boston brace, due to the rashes on the body, she changed to Spinecor by Dr.Deuthman on 09/24/07,before fitting in the Spinecor was T31L20 out brace.T21L18 in brace.
One month x-ray on 10/26/07 was T34L28, Dr.Police was not happy with it, I call Dr.Deuthman, he said Jennifer may have a growth spurt,she needs to stay in the system long enough, Spinecor is an only brace can reduce the curve, he needs an out brace x-ray.
I need help! my e-mail is qling_z@yahoo.com

looking forward to your reply

Elaine

[rtremb]

Elaine:

We have learned there can be a big difference between one doctor's readings of x-rays and another doctor's reading of the same x-rays...it is accepted in the medical field that there can be at least as much as a 5% difference. If possible why not take your daughter's x-rays to another doctor and ask them to measure the Cobb angles? Also my husband tells me it depends how the child stands when the x-ray is taken - this can increase or decrease the cobb angle quite a bit.

Do you know if your daughter's height changed dramatically recently? I measure my daughter's height each week (on the back of the closet door) to watch out for growth spurts. A height growth has always corresponded with an increase in my daughter's curves.

I think it is true that the Spinecor is the only brace which can actually reduce curve size so if I were you I'd stick with this brace especially since your daughter got a rash from the hard brace. Also her curves are smaller so they should respond to Spinecor in time unless they are the aggressive curves that won't respond to bracing treatment anyway. Try not to panic about the increased curve readings - you are doing a good thing by having your daughter wear a brace.

Does your daughter do any other activities to keep flexible like yoga or physiotherapy or exercise?

Ruth

[rtremb]

Melissa:

What annoys us is that our daughter's curves were found early - below 20 degrees but we were told not to do anything at that time and at no point ever did her doctor ever, ever mention the Spinecor brace to us - not once. We live two hours from where it was invented. I cannot understand how our doctor could have been so clueless. Whether or not it would have done any good for Esme we will never know. This is why I feel motivated to get Assistive Devices to cover this brace for future Ontario children hoping the Ontario doctors will no longer be able to ignore Spinecor as a treatment option.

He was equally clueless about stapling when I brought it to his attention telling me it was only done on small children. He also said why have an operation to avoid an operation - obviously not understanding the difference between temporary staples and permanent spinal fusion.

Ruth

[qiling]

Ruth,

Thanks for your opinion.She grew one inch in July 30 to Oct 26, she is 61inches, 98lbs.she has 3 programs softwere from Spinecor 1.right hemistim left pursuits. 2.left optokimetics 3.physiotherapy exercices home program.It takes 15 minutes. I paid $5290.for fitting the Spinecor and the programs on 09/24/07 plus $150 ahead for booking an appiotment, she takes dance class 1 hour a week, an hour swing 2 or 3 times a week.
I want to do best for my daughter, when she was in the Boston brace, she had a very hard time, sometimes we cry along.I wish the Spinecor works for her. but Dr.Police mentioned that, he tried Spinecor 2 years ago, he likes the Boston better, the hard brace has 80% successful and Spinecor also claim 80%.he recommended the hard brace.I afraid that the bad out come causes by my mistake.

Elaine

[gerbo]

elaine, who made the last x ray (the 34-28), and was it with the brace on or off?

gerbo

[qiling]

gerbo,
The x-ray was in Spinecor 34/28 taken in Oakland Children Hospital for Dr.Police10/26/07, he did not have one. the original x-ray ordered by Jennifer's family Dr. was 38/20 which I bought it with me,that was first diagnosed she has scoliosis,the 09/24/07 x-ray 21/18 in Spinecor he did not have it.

Elaine

[leigh9p]

Thought I'd jump in on the subject of exercise. Taylor was fitted a little over a month ago and will be starting a program next week. It's being given by a chiro Dr. who specializes in scoli in San Francisco. I don't know what will be involved, but I will certainly let you know.

That was shocking to hear that Pilates is actually causing people problems! I would they they must be doing it in the extreme.

Elaine - I understand your concern, but agree with the others about x-rays varying. The other thing is if Dr. Police is a regular surgeon - he will not be very supportive of the Spinecor. They typically aren't. I know we all worry if we are doing the right thing for our kids - it seems impossible to know for sure. At some point we have to make decisions and then trust our guts. I think the Spinecor will work if anything will. Like others have said, if your child has aggressive curves, no brace is likely to work.

Taylor pretty much hates the brace, but she is wearing it 20 hours a day give our take. It still hurts her hip at times. I'm hoping the exercise and chiro treatment will help that. Do you all have regular chiropractice done on your kids with scoli? It makes me a little nervous frankly. I sure hope they can't make anything worse. They always say she is really tight and she does seem to feel a bit better after.

As for the fitting, our Dr. said that the leg bands and belt are just for stabilizing the straps so they don't have to be tight. I know the belt twists around a bit when Taylor wears it. Again, I sure hope this is OK. He wasn't worried about it. So many things to consider.

[structural75]

leigh9p,

Do you all have regular chiropractice done on your kids with scoli? It makes me a little nervous frankly. I sure hope they can't make anything worse. They always say she is really tight and she does seem to feel a bit better after.

If they are always saying she is really tight then maybe it might make more sense to address that tension/tightness in the soft tissues rather than trying to 'adjust' bones within that sea of hypertension.??? There's little chance or purpose behind adjusting bones if the soft tissue responsible for their positioning is in an aberrant state of tension... just waiting to pull them "out of place" again. Just my opinion... It might even help what the brace is trying to achieve... ???