spinecor

[Christina_in_NC]

higher curves than we thought...

We saw a surgeon yesterday, he measured the upper curve (which the last surgeon did not do) - 36 degree thoracic curve and 32 degree lumbar. I am trying to get an appointment at the Shriners in Erie to decide between SpineCor and Boston.
Do any of you who are using SpineCor have upper curves in that range and does it seem to be helping at all? With this new data we are not quite as certain anymore about the SpineCor.
Our surgeon here would rather us get the boston if she is willing to brace at all, but he said if we got Spinecor he'd still be happy to follow her for us. We go in December for a second x-ray to check progression and would love to get a spinecor asap so we can see if the in brace correction is worth going with that brace.
Thanks,
Christina

[LATigner]

My daughter (now 16) got Spinecor at age 15 & 3 mo. Basically she was already done growing (Riser sign 4-5). Both curves were in the low 40's. With the Spinecor brace she got 10 degrees of correction after 1 month of wearing (5 degrees initially). This was with wearing the brace only about 10-12 hours per day rather than the 20 hours. Unfortunately, she had already done hard bracing earlier and was not willing to wear the Spinecor the amount of time she really needed to. So we are back to curves of 44 & 44, she is wearing the brace at night only and the curves are holding. I will tell you it is night and day with respect to comfort and compliance. I believe if we had gotten the Spinecor when she was 12 1/2 (first diagnosed) there would have been no issues with wearing it. Aside from comfort & invisibility (which is huge to a teenager) with Spinecor you are re-educating the soft tissues (muscles, tendons, ligaments) so that there is a much better shot at retaining the correction you get. With hard braces they only hope to slow the progression & usually the curve reverts back to wear it was after the hard brace is discontinued. If it were my child, I would absolutely go to Montreal & get their opinion.

[cherylplinder]

Christina,
My daughter Rachel's curve progressed by 20 degrees last year(from 18 thoracic in January to 38 thoracic in December.) She turned 11 September 28th, 2006. We traveled to Montreal in January of this year and put her in the Spinecor brace.

Her first x-ray in brace was 31Thoracic/ 19 Lumbar, the day of the fitting. In April, her curve was 23T/22L in brace. In August, her curve was 20T/18L in brace. She has grown at least three inches since she got her brace in January. By contrast, the year her curve progressed so much, unbraced, she had only grown a couple of centimeters(about an inch.)

She was in a lot of pain in 2005. She could not function normally. She couldn't play for very long without coming in with her back hurting. She couldn't sit at the paino more than 10 to 15 minutes without being in pain. She is now completely pain free. This brace has been amazing!

I was told by Shriners in April that Rachell had a 100% chance of surgery. That is correct according to the literature, but the literature is based on traditional bracing, I am certain. So far we are beating the odds.

I have the highest regard for Dr. Rivard and Dr. Coillard. They are some of the most amazing physicians I have ever met, with consumate integrity and compassion. I would not hesitate to go to them.

[MATJESNIC]

Cheryl,

I hope Rachel continues to do well with Spinecor. Nicole's curves always increased with growth spurts. We don't know what will happen now that the major spurts are probably done.

Question for you Spinecor Parents out there. Do your kids complain of back hurting without Spinecor on? Nicole's back feels fine with brace on but when walking aroung the mall without brace (going dress shopping for example), her back hurts and she can't wait to put it back on. This does not seem too encouraging to me. I will talk to the Docs in Dec. when I see them.


Melissa

[Mom37]

Spinecor is a great brace.

I tried to catch up on your history but I didn't see what your daughter's curve is. Did they think the Spinecor would not hold it because the curve is too high, or because of the other complicating issues going on with it?

My daughters curve is in the upper thorasic, almost cervical area. The curve is in the upper 40's out of brace. That is why an MRI was ordered as her curve is a high thorasic curve, and not quite typical of ideopathic scoliosis. Her Chiari, and Syrinx is the believed cause of the curve, and the believed cause of the high progression. We are still using Spinecor, as we want to reduce the chance for a rapid increase. Andrew Mills, head of Spinecor, and great orthotist, came from out of the country, and did our first "adjustment" to the brace at 1 month. He was very happy with the bracing, and said he would have done the same. I really think Spinecor is the best brace out there. I would certainly find out what you can from Shriner's in Erie, PA. If we were unable to PA, they were going to do an evaluation by us sending in films and getting back to us. I think that is a great alternative to the trip, if it is hard to get in, or go there. We were told to get a Boston brace, but many Orthopedic Surgeons do not know about, or enough about Spinecor. Shriner's doctor told us Spinecor was as good of a brace as any, but just not sure any brace would hold hers. I found the staff helpful at Erie, just make sure to schedule when the orthotist for Spinecor is there if you go in person. Then confirm before you leave that the orthotist and brace is going to be there before you make the trip. That the orthotist is still going to be there is the one thing I forgot to reconfirm and he wasn't there to check and adjust her brace. I didn't agree to just not continue a brace, and since we already have it, we are certainly not going to just stop and give in without a fight. We went to Scottish Rite in Dallas, still planning to use Spinecor. We just wanted to be an established patient if fusion ever becomes necessary, and as a third opinion. We really liked Dr. Birch there. I am seeing more hositals and doctors on that Spinecor list in the U.S. and I believe that the benefits are worth using Spinecor. We plan to use after Chiari surgery if possible. Hope this helps.

[cherylplinder]

In the first couple of months, Rachel's back hurt when she was out of her brace for very long. In August, we went camping. Rachel was out of her brace for extended periods of time, often several hours at a time more than once a day. Her back did not hurt. I found it very encouraging. She never complains of back pain anymore.

[cherylplinder]

Just an encouraging word..........

One of my friends commented tonight that she could see that Rachel's posture and alignment were much straighter.
That is the first time any adult has commented that they had noticed that she was not straight or that they had noticed the improvement.

The kids in her Sunday school class had noticed and asked her about it last year. Her shoulders were noticeably uneven, by an inch or more. They are now completely even.

She is growing like a weed!!!!!!!! An inch in the past few weeks!!!!!!!

[Celia]

Cheryl,

This is such great news!!!! I'm glad you mentioned the leveling of the shoulders because Deirdre has a left "C" curve and the straps push her in one direction - to the right. At the last clinic appointment I noticed a little kink above her curve going in the opposite direction - to the right. There is still some rotation to her spine so I guess that's why the kink developed. Dr Rivard assured me that this is strictly postural and I'm hopeful *praying* that over time everything will balance out. We were give a different size #4 strap (40 cm versus 50 cm) so that her right shoulder wouldn't tilt so much to the right. The different size strap seems to be doing the job because her shoulders are now level whereas before her right shoulder was significantly higher than her left and I wrongly thought that this was "normal". Anyway...I thought I would mention this so that others could keep a heads up for potential problems developing in their own children. This is purely an FYI and keep in mind that each case is unique so what may apply to Deirdre may not apply to anyone else - remember this is an art not a science.

Here is a picture of Deirdre wearing the spinecor brace taken before our trip to Montreal and you can see how the right shoulder is higher than the left. Still....she looks like such a sweetie doesn't she

http://i41.photobucket.com/albums/e2...004_edited.jpg

[pat]

Yes, she is a cutie!!! Thanks for shoulder and different size strap info; we head up next month for our next appt; it's been a year now! p

[cherylplinder]

Yeah, she's a doll!!!!
I think Rachel's strap may be pulling her right shoulder a little lower than the left. Before, her right shoulder was higher than the left, and I thought that maybe it was desirable for the left to be higher than the right slightly to correct her curve. She has grown since her appt. I don't think it was that way right after her adjustment.
I have been wondering, as fast as she is growing right now, if I should take her back before January. She has put on almost 2 inches in the last 2 months.
Any input would be welcome.

[Celia]

Cheryl,

Wow !!! Rachel has grown 2 inches since the last appointment?! Wasn't that in August ? She's right in the middle of the growth spurt. I would contact Drs Rivard or Coillard and make sure that everything is O.K. - they have your daughter's profile on the computer. I know that the spinecor works on the principle of postural disorganization and that any kind of disorganization that occurs should be temporary..... I think


Pat,

Good luck next month and know that we're all sending you our best wishes for a good uneventful appointment.

[gerbo]

lisanna's right shoulder is deliberately pulled down to help to correct her (Right T11) curve

[Christina_in_NC]

CherylPlinder and Mom37,
thank you so much for the info. It is very helpful. At this point we have an appointment at Johns Hopkins because it is easier to get to for us. We may yet change that.
Rachel sounds like she is doing great!
Christina

[cherylplinder]

Christina,
I corresponded with Dr. Paul Sponseller in the beginning. He was very kind. Because Rachel is plump, he was unsure about putting her in the Spinecor. That is when I contacted to Dr. Coillard to ask if the biomechanics of the brace would be affected by that. Dr. Rivard called me within hours and encouraged me to let them take a look at her. The biomechanics of the brace and outcome do not seem to be affected by weight as with the TLSO or Boston.
And I am quite encouraged by Rachel's progress. I am beginning to be hopeful that we might avoid surgery. But even if we don't, she has been extremely comfortable in the brace. When her back hurt her so much at the beginning of the year, she was reluctant to take it off because she would begin to hurt when it was off. She is now pain free even out of the brace, so that would have been worth it all.
She has also achieved a much better alignment of her body. She used to have one foot that turned out. It made her walk funny. The brace corrected that also. I was really amazed by that. It had occurred to me, in the beginning that the two might be related, but our orthopedic surgeon at that time dismissed my observations about the change in her foot corresponding with the change in her curve(it had not always been turned out.) I trusted him and therefore I had mentally dismissed it. A few months into the Spinecor, I noticed that her gait was greatly improved.
Anyway, if she takes a turn for the worse, I still have absolutely no regrets and am very grateful for all this brace has given us.
She was absolutely miserable in the TLSO. She couldn't move. She was hot. Of course, since the TLSO did not correct her curve at all, she only wore it until she had her first in brace x-ray, about a month. We had no other choice but to consider other options. I am so glad of that now.
Best of luck.
Hugs!
Cheryl


Gerbo,
Thanks!
Cheryl

[MATJESNIC]

Deirdre is a cutie.

I'm happy for all of your daughters who are doing so well with Spinecor. Although I don't know if Nicole will avoid surgery, I will never have any regrets about my decision to go with Spinecor. I would not, could not have put her in the hard brace. If her curves are evil and uncooperative, it is not Spinecor's fault. I have even convinced Nicole of that. She was going to burn Roxy (her Spinecor) in the fireplace if it didn't work. Now she has changed her mind because she knows Roxy is doing the best job she can. Yes, we are all going nuts here. Roxy even "talks" and has a very interesting voice and unique language. It sounds a little bit French and a little bit of other dialects mixed in. Hey, whatever helps you get through this, right?

Melissa