Spinecor and Chiari?

[emarismom]

Hi all,

My daughter has scoliosis secondary to Chiari/Syrinx. She has been decompressed and currently the Chiari has been resolved and the syrinx is greatly reduced with no cord expansion. Her scoliosis is at 23 degrees now.
Down from 28 pre decompression. Her curve decreased after surgery and has remained stable for two years 5 months.

My worry is that as she grows, if she does progress, because of the Chiari/Syrinx, the use of traditional braces has not been shown to be very effective.

I have read the Spinecore website and found no indication that it CAN be used with this type of scoli. Has anybody with this type of scoli ever used the spinecor? If so what were the results? The idea of continuing to watch and wait seems ridiculous knowing that if progression starts, fusion surgery will probably be unavoidable.

I don't want to brace her if it is not necessary, and will not put her in a rigid brace until there is no other choice. However, I also want to be proactive and prevent progression if there is any way possible.

[christine2]

Emarieson

If I were you I would go right to the source. Either E mail or call Dr. Rivard in Montreal. He will be very open to talk to you. He will also tell you his HONEST opinion.
Christine

[emarismom]

This morning I did send them an email. I assume I will not get a reply until Monday. I have been researching alot today and it seems more than likely, they will not be willing to put her in a brace. I do know that if they will, I will only go to an orthopedic to have her evaluated and fitted. I will not go to a chiropractor, so I guess I will be traveling to Montreal. It's a long way for me as I live in Miami.

[cherylplinder]

I know what you mean. We live in Mississippi and have been traveling to Montreal for the past year.
It has been well worth it.
Rachel had no chance of avoiding surgery with traditional bracing.
She is holding at 22 degrees, down from 38 degrees.
Best of luck!
Cheryl

[christine2]

When we were there March1 Dr. Rivard said he had just seen a child from San Francisco. He was fixing a mess a chiropractor had made in bracing.

[Kalarasy]

My son has a small syrinx on the thoracic side, we did not have to do sugery or anything yet. He was placed in spinecor in november last year and his cuve went down from 31 to 3 degrees in brace, so I think it's worth to try it.
Take care
Adriana

[MATJESNIC]

Adriana,

that is wonderful!!!

[gerbo]

seems to me you have little to loose (but money and time) by trying.

[emarismom]

I am going to see what the response is when I get one. Adriana, that is great about your sons curve. How old is he?

Do you think that my insurance will at least cover the cost of the brace and the doctor visits? I have a very good PPO. At least that would help offset some of the costs. Is it easy to get appointments with Dr. Rivard, or does it usually take a while? I would have to plan it for the summer, as there is no way I can get away sooner.

[christine2]

We also have good ins. they covered up to our durable medical max ($850.00 I think) then cover all of our x rays and OV's. We were have trouble getting any coverage when we were considering going to New York. My husband is also going to check with our accountant to see if we can get deductions on our taxes for travel expenses to Montreal. Wouldn't that be get. Has anyone else done this?

[christine2]

Adriana

I did not realize you had such great results in Spinecor. Congrats.

Just a suggestion to everyone: It would help me and I think alot of people if you were to do a signature that way I can keep track of everyone, what they are using and their results. Just an idea.....

[MATJESNIC]

Christina,

That is a great idea. I am having trouble keeping track of people and their history.

[Kalarasy]

My son is 9 years old now. He was diagnosed with scoliosis when he was 7 and a half. He had a 20 degree curve. He didi competition gymnastick for about 3 years. We went to Shriners, the orthopedic didn"t want to put him in spinecore, his curve was then 26 degrees and he ordered a providence night brace. My son will wear it for a half an hour and start crying so we will take it off. We have tried Asco, massage and medical gymnastick in Europe, nothing seeded to help, his curve was at 31 degrees,when I start reading your spinecor thread more seriously and decided to go to Montreal. Spinecor brace was the only thing that worked for us and the prayers.Of course I was advised not to use spinecor by our doctor, so I didn't see him anymore.
Christine
Sorry I don't really know how to do a signature, I will try.
Adriana, mom to LUke 9 years old 3 degree thoracic curve in spinecor brace and Mark 7 years and a half no scoliosis yet
Saw dr Rivard since Nov. 2006, he is wonderfull

[emarismom]

Adriana, so everytime you need a follow up, you travel to Montreal. If your son were to progress in the future, what would you do? Would you be able to have surgery in Montreal with Dr. Rivard or would you use a doctor here in the states? Did your doctor here refuse to see your son again because you are using the spinecore brace?

Are there ANY orthopedic doctors in the US that use spinecore? If so where
are they?

[MATJESNIC]

Although most orthopedics in the U.S. do not recommend the Spinecor, none of them have been nasty about our using it. For Nicole who has the text book adolescent idio type, they know that a hard brace may not work for her anyway given her age and high curve. They don't recommend the Spinecor, but they respect our decision to do what we feel we need to do for Nicole.

I believe most of us who live in the States and travel to Montreal for Spinecor, would stay in the States for surgery. Don't want to speak for others, so correct me if I am wrong. I, for one, am surrounded by at least 6 amazing hospitals that are within an hour or two away. Children's, Shriner's, DuPont, and many in New York and Maryland, just to name some.

Melissa

[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]

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]

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.

[gerbo]

In a way it is a very good reply, and encouraging in that they give a very balanced view and there is surely no case of being encouraged to jump on the band wagon.

Their wait and see advice is based on current knowledge that the majority of curves round the 20 degrees will not progress, so by bracing you have a fair chance you go through a lot of effort and costs for no benefit. I do not know the exact figures (somebody will), but I guess there is a 1 in 5 chance of progression (help! anybody??)

Still, encouraging, he states very clearly that although he has little experience with scoliosis sec to chiari, there is no theoretical reason it should not work and the few cases he has done have been very succesful. So no discouragement there!

He leaves the ball in your court, leaving i t to you to make your own decision based on the facts he has given you. And there are advantages and disadvantages to each decision.

1) Not to brace advantages; no cost, no time lost, no inconvenient brace to wear, 80% (?) chance she'll be ok anyway
2) to brace advantages; peace of mind, possible improvement from current 23 degrees, possible avoidance of progression and future surgery

Hard one to call; neither decision would necessarily be a wrong one as there certainly is no certainty.

[cherylplinder]

I agree. He is leaving the ball in your court. He is saying there is no reason that if you do not wish to watch and wait, since there is a significant chance of progression, you may brace her with Spinecor. He is saying there are no guarantees. If you wish for them to proceed with bracing her in Montreal, I am sure they would agree to see you.
It is encouraging that they are not trying to tell you anything different than what you have heard, but that there is hope with Spinecor. They have treated 2 patients with Chairi successfully.
I watched and waited as Rachel progressed from 18 to 38 degrees in 1 year. I would not wait if I had it to do over.
I do not believe that they are saying that they will not see you in Montreal. If you call and say that you would like to schedule your child for a fitting, I am sure they will accomodate you. Insurance may not pay for it, and the traveling expenses are substantial, but if you don't want to see a chiro, that may be your only option, if you decide to brace. They certainly have the most experience with the brace.
Best of luck. It is easier if the path you should take is clear cut. I really understand.
Cheryl

[emarismom]

Gerbo, just out of curiosity, any idea where the 80% chance of not progressing came from. I realize that she really may never progress, in which case I'm being "obsessive" for nothing. However, due to the chiari, if she does progress, it is generally less likely that any type of bracing will help.

Convincing my family that this is the best course of action, bracing her without most doctors approval, traveling to another country, paying for it out of pocket based on a treatment that has only been used on two children in a similar situation to her (I'm not sure of how similar the cases were). Is a very hard sell.

I think at this point I will visit one of the orthos here again. I'm going to ask him straight out his opinion on spinecor, her % of chance of progression, any
other options there may be to prevent progression, etc.

I am not due for another x ray until Jul/Aug.

[gerbo]

sorry, i really do not know the figures properly, and was hoping that others, with the figures at hand, would confirm or correct. Otherwise an orthopedic doctor needs to advice you on chance of progression in her situation, but i would have thought it was in that order of magnitude.

With that very inprecise info at hand you have two decisions to make

1) to brace now (preventative) or wait till there is evidence of progression (which might never occur)

2) and only after you decided on the first question, and IF you want to brace, try to decide between systems, i.e. boston type or spinecor. I would imagine that the varios pro's and cons about using spinecor in idiopatic scoliosis (as expressed in the spinecor thread) will apply equally to treatment in your daughters situation. I.e, if you believe in the benefits of spinecor in idiopatic scoliosis, it would be logical to have confidence in the potential benefits in your situation. Same for othopedic; if they are prepared to believe in spinecor, they should be able to support you in your situation, if they do not believe in it, or don't know anything about it, they are unlikely to advice you to go ahead with it

[gerbo]

http://www.icaa.cc/WCI/articles/000068_7.htm

this gives some idea of risk of progression

[emarismom]

Gerbo, Thank you for the article. I do appriciate it.

Even if I were to decide to go with the Spinecor, if her curve stayed as it currently is, never progressing nor improving, I would really never know if the brace had any effect in stopping progression. I would have placed her into a brace for a period of at least two years with no proof that she really needs it nor that it ever really helped her.

Also being that it is not a doctor, but me who is making the decision, compliance would probably become an issue. She of course would never know
that it was my decision, but everyone else would. Would everyone, including myself, be as compliant as we should? I'm thinking REAL world here.

The hardest part of this dilemma, is that research has shown that scoliosis progresssion sec. to Chiari tends to be rapid and difficult to manage with any traditional brace. So to go into this, with the knowledge that a) she may not need it or b) it may not work if she does need it, makes it appear not worth it. I can argue also the point that because it progresses fast and is difficult to control, she should be put in a brace sooner, rather than later.

Finally, it all comes back to Cheryls' situation. I don't want to look back and think I should have done it differently, especially given I am aware of all the possibilities. An easy decision it isn't.

[gerbo]

Even if I were to decide to go with the Spinecor, if her curve stayed as it currently is, never progressing nor improving, I would really never know if the brace had any effect in stopping progression. I would have placed her into a brace for a period of at least two years with no proof that she really needs it nor that it ever really helped her.

and


The hardest part of this dilemma, is that research has shown that scoliosis progresssion sec. to Chiari tends to be rapid and difficult to manage with any traditional brace

is exactly your dilemma and only you, with whatever support and info you can get, can make a decision which way to go.


Even if I were to decide to go with the Spinecor, if her curve stayed as it currently is, never progressing nor improving, I would really never know if the brace had any effect in stopping progression

i don't think this is necessarily true. At first fitting you'll get an inbrace and out of brace xray. The initial correction usually gives a good indication of what outcome you can eventually expect. So; initial fitting > no correction means less likely to have a great impact, but if good correction > better chance it will do something. With other words, you have fairly early on an impression of what the brace is likely to do.


compliance would probably become an issue
only time will tell, but i'd expect that if it appears to be working well, compliance will be less of an issue as both of you will feel more motivated to keep going.... We do not find compliance a huge issue


research has shown that scoliosis progresssion sec. to Chiari tends to be rapid and difficult to manage with any traditional brace

that would be an argument for trying something to prevent progression and as hardbracing hasn't got a good trackrecord in this situation you might as well try spinecor (nothing to loose)


I don't want to look back and think I should have done it differently, especially given I am aware of all the possibilities.

so, considering there is no certainty, you need to decide what "on balance of probabilities" is the decision you are most likely able to live with, both immediately, and "the rest of your life"

[emarismom]

Gerbo, Thank you for being a great sounding board. It's great to have a place to go where others understand the issues and can give unbiased opinions. I have made no firm decision, rather for the moment I'll put it in God's hands and hope that I'll get a sign as to which way too go. (That sign better not take long to come:eek:

[emarismom]

Hello all. I'm not exactly sure if this was a sign from up above, but alot has happened since I last wrote.

After recieving the email from Mr. Mills at Spinecor (posted previously on this thread), I decided to wait and see what happens. A few days later I recieved an email from Dr. Brian Oulette from Georgia. Apparently he is working with a chiropractor here in Miami and Mr. Mills had told him about my situation and he contacted me.

Today my husband and I went to see him for a consult on the Spinecor brace. I found him very knowledgable and willing to discuss many aspects of my daughter's situation. Much more so than any of the orthopedic MD's have done. Because Emily's case is very complicated, he agreed to contact Dr. Rivard or Colliard in Canada to discuss the case and help me decide if a brace is necessary at this point or if I can wait a little longer since at this point we are unsure if her scoliosis is progressing.

I have made no firm decision yet as to which way to go, but I feel much better about knowing I can get the brace here in Miami, with some input from the Dr's in Montreal. If anyone has had any experience with Dr. Oulette, please let me know your opinions.

[MATJESNIC]

That should give you some piece of mind. Sounds like you are handling everything well. Haven't heard anything negative about the chiro from Georgia. In fact, there are a few people who use him. There was a girl named Lauren who used to come on here. Her Mom's name is Lori. They seemed pleased with him.

[Mom37]

Sent you a private message. Messages too long and kept starting over on thread and on private. will reply more later. Your info has helped me.

[Mom37]

Just wanted you to know all these people on the forum, Spinecor parents, kids, and others were very helpful. Many on this thread were helpful in our decision to go with Spinecor. I certainly would try if bracing is recommended. We didn't have success, but our situation was different, being older and at a higher curve, and not knowing of Chiari until after more progression. I hope that if you go to bracing it is an option for you.