Spinecor and Chiari?

[emarismom]

I did read on the spinecore webpage that they will be having a conference in
Las Vegas in April. Do you think that this will be attended by some orthopedics, or will it be mostly for chiropractors?

I also have very good doctors and medical centers near me and am meeting with some resistance (from family), for considering traveling so far for a brace that none of the doctors here support nor believe she needs.

[christine2]

To post a signaure click onto usercp.

I have sent my daughters results to our ortho at Childrens Hospital in Ct asking him to consider the brace. When we at our last OV he said to keep doing what we were doing because he had nothing to offer us (this is before our great results). So he was not against it. As someone said recently on this forum we are trailblazers. It will come, docs will start to see the results and spinecor will be more and more recommended thanx to Dr. Rivard and Coillard.

If god forbid my daughter were to need surgery I would definatly have it done at our local hospital. Connecticut Childrens Hospital has a fabulaous reputation!!!

[emarismom]

I just found a doctor named John Emans at Children's Hospital in Boston. The
website says that he does use the Spinecor brace. Has anybody gone to him? What was your experience?

[MATJESNIC]

Emily's Mom

That is great that you may have found an ortho in Boston who uses Spinecor.

Yes, Christine, travel expenses could be deducted. That is certainly legit.

My Parents were extremely supportive of Spinecor. Many times they told us they would do the same thing. My children are very close to my Parents and my Mom said she couldn't put Nicole in that brace. They even surprised us with a check for a thousand dollars right before one of our trips to Montreal. My Mom always says, "Thank God for that Spinecor!!"

[pat]

I just found a doctor named John Emans at Children's Hospital in Boston. The
website says that he does use the Spinecor brace. Has anybody gone to him? What was your experience?

I had spoken with Dr. Emans about two years ago, and at that time, he told me he HAD used the brace, but no longer did; sounded like it was used on a small percentage of kids with inconclusive results. I know kids who have had spine surgery there, great hospital, happy w/good results. p

[gallathea]

Emans and Spinecor

Hi Emily's Mom:

We got out initial diagnosis from Emans this last September. He didn't mention the Spicecor to us as an option (he wanted her in the Boston Brace full time for eight years), but when we discovered it on our own and contacted him about it he was open to it although he doesn't prescribe it. He told us that he had used it for a period of time and had had some terrific successes but "many more failures." He attributed the failures primarily to compliance issues (I think he was bracing older kids who tended to move the straps) and also a problem with the company being sold overseas, making it difficult for docs here to get support. (Interesting note: when we were in Montreal in October, Rivard told us that they now have a US distributor which should solve this problem, but I'm not sure I fully understood him at the time. I'll ask more when we go for our follow-up next month.) Emans told us to go directly to the inventors (Rivard and Colliard) if we chose to go the Spinecor route, which we did. Although we haven't been back to Emans, he's been supportive and says that he will be happy to continue as our daughter's local doc if need be.

Hope that helps,
Caroline

[Kalarasy]

emarismom

Yes, we go to Montreal every time. I think we will do surgery in USA if need it, hopefully not. Our doctor told us that if we do not use the Providence brace and do what he recommends we have to do check ups for spinecor in a differen place because they do not recommend it and they do not know the protocol. So we just have dr. Rivard as our orthopedist and we go to the chiropractor to adjust his hips, it seems like one of his legs is shorter and he is always checking the length, we also started to do the pneumex program to try to strengthen his back. Actually we started the pneumax program before we placed Luke in brace. The chiropractor said that he had best results with pneumex and spinecor in the same time, so we followed the advice. We didnt do any x-rays out of brace, but I can see when he is off the brace that his right shoulder blade is not sticking out as much, also when he bends over he looks much better. So to tell you the truth I am no sure which one helped more the pneumex or the brace, but I am assuming that the brace because I could see results right away and he wore it all the time.

[christine2]

Hi Caroline

How are you? How is your daughter? I have not talked to you in ages!!

Christine

[gallathea]

Hi Christine:

I just sent you a private message.

Caroline

[mariaf]

My Parents were extremely supportive of Spinecor. Many times they told us they would do the same thing. My children are very close to my Parents and my Mom said she couldn't put Nicole in that brace. They even surprised us with a check for a thousand dollars right before one of our trips to Montreal. My Mom always says, "Thank God for that Spinecor!!"

Melissa,

That was so good to read!! Made me smile

It also reminded me of the reaction that I got from my mom and other family members when I first told them about the stapling. Even though it was something new and not yet proven, the unanimous reaction was that it was EXACTLY what they would do. My cousin, who is a mother of 4 herself, said without hesitation that she would opt for the stapling in the hopes of avoiding many more years of bracing. My mom is also very close with David and she is extremely grateful to Shriners that he no longer has to spend 22 hours a day in a brace. Isn't it wonderful to get that kind of support!!

[mariaf]

I also have very good doctors and medical centers near me and am meeting with some resistance (from family), for considering traveling so far for a brace that none of the doctors here support nor believe she needs.

Don't be discouraged. Hopefully, your family will come around. Just give it a little time.

[mariaf]

Did your doctor here refuse to see your son again because you are using the spinecore brace?

When we told our former ortho that we were considering the stapling, she did not in so many words refuse to see us anymore but she might as well have.

Anyway, once David had surgery at Shriners we decided to do all our follow-ups there. Luckily, it's less than three hours away and we are more than happy to make that trip a few times a year.

[emarismom]

I heard back from Spinecor today. They didn't appear to think that any bracing should be done at this point. Further, they have only used the brace on two patients with Chiari, so it may or may not be helpful. Here is the letter:

Thank you for your enquiry regarding your daughter’s scoliosis treatment.



Whilst SpineCor was developed for the treatment of Idiopathic Scoliosis it has been successfully used on patients with scoliosis from other causes.

In theory SpineCor should be able to correct scoliosis caused by Chiari Malformation and other neurological defects once these have been successfully resolved.



It is rare but possible that your daughter’s scoliosis might resolve after her surgery, the initial post-op reduction is encouraging but at only 8 years of age she has a lot of growth remaining and significant risk for progression. Whilst ever the curve remains around the 20 degrees it is perhaps best to do nothing as we have no way of knowing whether progression will occur.

If at her next 6 month x-ray review she has an increase of 5 degrees or more bracing should be considered.



Whist personally I have treated over 300 patients with SpineCor I have only encountered two cases similar to your daughter’s so I can not say with any certainty that SpineCor will work. Both cases did actually do very well with complete correction which is very encouraging to investigate further. You could reasonably try SpineCor and if you were in my clinic we would certainly suggest you did, however, you will find it difficult in the U.S. to find an orthopedic doctor to support a treatment he knows little of for an indication that has yet to be proven.



If you really want to pursue this line of treatment assuming progression is documented I would advise you to travel to Michigan University if you are completely against seeing a Chiropractor. There is, as you probably know, a chiropractor trained in SpineCor treatment in Miami if you do wish to reconsider.



So traveling to Montreal will not be in my near future, but it appears more waitng and watching will be as I really don't want to use a Chiropractor and
I know that there will be no way to convince my husband of that one. Further, even Spinecor seems to indicate that it is best to wait at this point.

Michelle

[Celia]

What a difficult decision this must be for you! On the one hand they're saying that it's rare that the scoliosis will resolve on it's own and there is significant risk for progression and on the other they say to wait because they don't know if it will progress. Consider that at 23 degrees she would be a candidate for vertebral stapling.


******

[emarismom]

I do believe that there are very few(if any) doctors that will recomend anything now except watch and wait. I have been doing this for two + years now. It just doesn't seem to make any sense to just sit around waiting for it to get worse knowing that there is a significant chance of progression. Can't any of these doctors do any thing other than follow some type of protocol! Rather than trying to think outside the box, they are willing to let her progress, and then do a fusion. Fusion is the safe way, just like c-sections are for pregnant women.