PDA

View Full Version : SpineCor - What about the large curves? Is surgery the only option? :(



carebear23
01-12-2009, 02:28 AM
I guess I disappeared for a while. Back again, missed the support of everyone here!

So.. at one point I was told I was getting surgery for my curves. Then they said I wasn't. My doctor insisted (though he'd probably deny it now) that my spine would not get worse if I had another child. It did. I had a 12 degree progression on my 56 degree "stable" curve. I am in a lot more pain now. About a month before my 2nd daughter was born, my eldest daughter was diagnosed with a 40 degree curve (there were 2 curves but they only measured one ever) They put her in a Boston brace and I promised her that we would try to get her a SpineCor brace ASAP.

Well.. now her curves have progressed to over 50 degrees for the top curve and 80 degrees on the bottom one. She's 12 years old, still a lot of growing left. I think her Risser score was 2 or 3.

We found someone who does SpineCor near my home. I always expected them to tell me that they could help my daughter, but not myself. Then we get the most recent measurements and they tell me the opposite. They want her to get surgery. She doesn't want it (I don't blame her though I would get it for her in a heartbeat if she asked) Her body is functioning fine with this curve right now. No complications that we can find.

I have been hunting through the posts, but it's really hard to find specific information on large curves, maybe it's all over the place. Anyway, has anyone ever had the SpineCor for a large curve while still growing? I know it's definately not recommended. I was just hoping I could find someone who has dealt with this.. someone who might be able to give me more information. I feel useless!

concerned dad
01-12-2009, 12:30 PM
Those curves are high.

I would email Dr. Rivard in Montreal (as opposed to asking a different SpineCor providor) although I would be very suprised if he suggested SpineCor as an effective treatment for an 80 degree curve.

and then weigh his response with the advice of your ortho.

( I would be personally interested to hear his response if indeed you contact him)
good luck.
PS, I know nothing about SpineCor and curves that large. I just have the impression that it is inappropriate.

carebear23
01-18-2009, 10:34 AM
They don't want to brace her, I don't think. Not with the information they have so far.

I was just hoping that someone maybe tried it before and could tell me their experience with it.

I feel like I'm grasping at straws without using my hands.

scoliboymom
01-18-2009, 02:51 PM
Any chance you can see another ortho for a second opinion, even out of province? Even if you could talk via e-mail and sending x-rays?

My son's surgeon at Sick Kids Hospital in Toronto said that bracing him when his curves were that large (over 80 at time of surgery) would make it worse more because of the way he was rotated (inward) and it would push his spine more inward. Don't know if this would be the case with your daughter. I also don't know anything about spineCor bracing so I can't really advise you there. But I do know how heart wrenching it is to think of your own child going through a surgery like this.
good luck with your decisions

Ramona

rtremb
01-20-2009, 03:02 AM
Carebear:

Our daughter Esme wore the Spinecor brace with large curves. Dr. Rivard did not want her to since he did not think it would work but we asked if we could give it a try and he reluctantly agreed. It did not work for her, her curves progressed.

I have heard that the Spinecor brace is being used by adults to help with pain management but I don't know a lot about this.

If you have any specific questions I would be very happy to answer them.

Ruth in Ottawa, Canada

carebear23
01-30-2009, 12:33 PM
Did Dr. Rivard feel that the brace made it worse? Or that the curves would have progressed farther or less without the brace?

We know my daughter's back has a good chance of not getting better at this point. And currently there is no plan at all to slow the curves. It feels like her Dr. is waiting until the curves progress so much that we have no choice but to put her through surgery.. meanwhile we're all waiting by the phone for him to give us another option.

Writer
02-26-2009, 01:43 AM
SpineCor is not the only brace option. You might also investigate the Rigo-Cheneau brace, which is more common in Europe than North America. If you contact Cindy Marti at Spinal Dynamics in Wisconsin, they work with orthotists who make that brace and she could tell you the pros and cons. Her contact info is on the homepage of the NSF (scoliosis.org) -- just scroll down to the bottom to find the Schroth therapists.

They also do Schroth physical therapy there, which is a well-developed and proven conservative system to try before deciding that surgery is necessary. To answer the question in your title, no, surgery is not the only option.

Pooka1
02-26-2009, 07:10 AM
Surgery is the only proven option to reduce and stabilize curves permanently.

Curves that are as large as yours and your daughters can be expected to increase throughout your life if not halted and corrected by surgery.

No brace or exercise program has large amounts of good evidence that they work at all.

Karen Ocker
02-26-2009, 01:58 PM
carebear23, you wrote about your daughter:


They want her to get surgery. She doesn't want it (I don't blame her though I would get it for her in a heartbeat if she asked) Her body is functioning fine with this curve right now. No complications that we can find.

I do not believe a 14 year old has the maturity to make that decision. My mother actually delayed my surgery against the Dr's advice to give me a "summer". I progressed so badly in those 4 months that my hump became pointed and no amount of spine straightening can totally remove that deformity. When I had a revision as an adult I had a thoracoplasty to partially reduce that hump.

Pooka1 is right. Nothing has been shown to permanently halt or correct curves short of fusion surgery.

Recent genetic studies suggests-that idiopathic scoliosis had complex genetic causes. Genes were found which might indicate whose curves would progress and those which will stay small---no matter what kind of brace. Right now this has not been perfected but it is a clue. We have seen and it is generally been accepted, if the curves are over 40 degrees at physical maturity, they will progress over the lifespan. It happened to me and I see it in my family. So if your daughter's curves is 50 deg at age 14 and it will progress. By age 20 it could be over 60.

I have read many scholarly articles about Schroth. Most of their patients are young adolescents with smaller curves. They use bracing and a specialized physiotherapy. A certain percentage of these teens still go on to surgery.

Pooka1
02-26-2009, 02:03 PM
I have read many scholarly articles about Schroth. Most of their patients are young adolescents with smaller curves. They use bracing and a specialized physiotherapy. A certain percentage of these teens still go on to surgery.

And a large percentage of those with small curves would have stabilized or improved even doing NOTHING but are claimed to be treatment successes because these "geniuses" pushing these alternative treatments don't understand the need for controls in research.

mariaf
02-26-2009, 09:48 PM
And a large percentage of those with small curves would have stabilized for improved even doing NOTHING but are claimed to be treatment successes because these "geniuses" pushing these alternative treatments don't understand the need for controls in research.

I agree completely. Many small curves might very well remain stable with no treatment. Nobody know for sure and yet, as you say, folks claim "successess" nonetheless.

I suspect this same reasoning with regard to smaller curves is one of the reasons why VBS is not even considered for curves under 25 degrees.

Karen Ocker
02-28-2009, 02:57 PM
Pooka 1,

I agree with you.

Perhaps those successes did not have the progression gene?

macky
02-28-2009, 07:05 PM
Pooka1 and Karen, I am sitting here in Tassie absolutely agreeing with all your comments regarding this subject.

I truly am so thankful every day I had the operation, even with the pain now, I can cope. I honestly do not think I would be here now without it and that is why I just get so frustrated with people who are looking for another way out, I know you are scared but please take the advice of your surgeons.

I can guarantee that Karen is just so pleased she had surgery and Pooka with her excellent posts as well. I just love reading your advice as I whole heartedly agree with all of it, you guys just put it so much better.

Congrats to you both for trying so hard to get people into the real world. I just truly admire you both.

Bless you both
Macky

macky
02-28-2009, 07:12 PM
Mariaf, your up there with the best of them as well.

Please try to keep it up, all of you.

Bless you
Macky

Cat Eyes
03-01-2009, 01:08 PM
I wear a boston brace, i personally think that this one is the best. I had a 30 degree curve wich in your case doesn';t sound that big of a curve, but the boston brace changed my life. I only have a 2 degree curved. After a week in the brace i was down to 5 degrees, i think that it could work for everyone.
Good luck, it sounds like your in a difficult situation. I will keep you in my prayers.
Katelyn
Age 13
Grade 8th
Boston brace
30 degree curve