spinecor advice

[christine2]

We recently found a 30 degree S curve in my 6 year old daughter. My husband and I are compiling information so we can decide how to treat this. Does anyone have personal experience with the spine cor brace pro or con.

[Snoopy]

Hi Christine, and welcome. If you use the "search" button and type in Spinecor, you'll find a huge thread about Spinecor.

Mary Lou

[christine2]

I tried the search and did not find much. am I missing something

[Snoopy]

YES! You are missing a lot. If you type in SpineCor brace (sorry, I wasn't exactly sure what the thread was called), you will find a thread that is 56 pages long (I think it is simply titled SpineCor). There are a handful of people there whose kids are currently in the SpineCor and are having good results.

Mary Lou

[Celia Vogel]

Hi Christine,

You would first have to get a consult with a Spinecor doctor - many parents believe that Dr. Rivard and Dr. Coillard are the "BEST" and would not consider going to any other spinecor doc. :D (Melissa - what do you think ???) I don't know if the spinecor brace would be appropriate for your daughter however, I don't see any reason why it shouldn't be if she has idiopathic scoliosis. A 30 degree curve for a six year old is already quite advanced and it would appear that bracing is very much in your child's future. My daughter's situation is a little different as she was diagnosed with infantile scoliosis at the age of 19 months and we went through a period of serial casting before choosing to go with the spinecor brace. My daughter is wearing the spinecor brace and it's FANTASTIC and I have absolutely no regrets with my decision to go with it.

[christine2]

Hi Celia
Thank you for responding. I am so new to this and am worried that I will make the wrong decision. In about 1 week we have an appt. w/ the ortho in the am then Dr. Deuschmen (sp?) in the afternoon in New York who is a big wig with the spine cor brace. My husband and I both think it is a no brainer. My daughter is so young with so many growth spirts left to go that we are worried about muscle atrophy and such. I hate to go against the standard hard brace but fear that if I do not have an open mind to different treatment that we could miss out on a wounderful alternative.

We are having issues with the insurance Co. which concerns me. Do they know something that I don't. I have not heard any negatives about the brace but if anyone does please let me know so I can research.
I suppose you can call me a bit suspicious of the positve effects.

I am glad your daughter is having success with the brace are there any corrections yet?



Christine

[christine2]

hi Snoopy

I dug deeper and did see the threads that you were speaking of however they seem to be dated. It seems that Spinecor has research funding issues which concerns me. I will futher investigate the threads after the kids go to bed.

Thank you
My fear is that I will regret the decisions that I make. But I am sure every parent, scoliosis or not has the same fears.

Christine

[MATJESNIC]

Christine,

I would be happy to talk to you on the phone or through E-Mail. I don't know where you live. But we live in Pa, outside of Phila and we travel 7 hours each way to Montreal for our appts. for our 12-year old.

I know it is such a difficult decision. We were denied in-network payment from our insurance because we could not get an orthopedic doctor in our network to say that our daughter should wear spinecor.

We have spent thousands of dollars. We don't know if the brace will work for our daughter. But we could not put her in that hard brace. We just couldn't do that do her. We also know that she would not have been able to tolerate it.

If I had to do all over again I would choose Spinecor again. We don't think a hard brace would work any better. But I wish I had started with the doctors in Montreal from day one. They are orthopedics and they know their own brace better than anyone. But I never thought about going to a different country to see a doctor. I also never realized that Montreal is not so far from where we live. You get used to the 7-hour drive. Let me know if you want to talk. I am happy to help. I understand. Believe me.

Melissa

[christine2]

MATJESNIC
I would love to talk. My E mail is firstcmd@sbcglobal.net

Over the phone would probably be more productive. I live in Connecticut.

My 3 hour trip will seem much easier now considering you are doing 7 hours!
(1 hour by car then 2 by train)
New York City makes me a little nervous I am a country country girl.

Thank you!!
Christine

[christine2]

I spoke to melissa today (Matjesnic) We had a great conversation. I feel much more confident about the route I am taking with my daughter's treatment. Melissa suggested I speak to you because your daughter is younger as is mine. My E mail is firstcmd@sbcglobal.net

Hope to converse soon.

Christine

[pat]

Christine, interesting, we also live in Connecticut, and my daughter's been in the Spinecor for about 10 months now; we do travel to St. Justine's to see Drs. Rivard and Colliard. We've all been very pleased, so far! pat

[christine2]

Dr Rivard called me back today and said someone will call me tomarrow to set up an appt. I think this is a good move for us. How often do you go for re checks? I was wondering if the possibility of getting a correction with spinecor then stapling would be a possibility. My daughter is so young and to be in a brace for 10 years seems like torture. I am also scared to death by any kind of surgery.

My mind is in overload!!

[Celia Vogel]

Hi Christine,

I just got your post. I'll e-mail you privately later this morning - I'm in a rush right now to get the kids to their swimming classes. Hopefully we can chat :)



celia

[Mom37]

I wanted you to know how helpful everyone on the Spinecor thread has been. I have a 12 year old daughter whose curve seems to be progressing. I believe Spinecor is a great bracing alternative to a hard brace, although for us we are not getting correction, but trying to hold the curve from getting worse. My daughter was braced in Spinecor by Dr. D in NYC in March. Stan at that office was very helpful in helping me with filing with my insurance. My insurance covered the brace and visit at out of network cost since there is no one in network doing the brace. It has covered most of the costs at out of network. Another option is Shriners in Erie, PA, who braces with Spinecor. They are masonic funded at no cost to you. I did go there for a second opinion the from an orthopedic doctor who is familiar with Spinecor. He felt no brace may hold her curve, but felt Spinecor was as good as any. We are continuing Spinecor as she is not a surgical candidate now, and trying to keep it that way. Spinecor has been very successful for others and am still glad we are able to have an alternative to a hard brace. I would talk to those on the Spinecor thread with children your same age and curve degree if possible. All the people on this thread are very helpful. Also more doctors in the US are being added to the Spinecor list, so you can always keep looking for one close to home if that is a necessity for you. Best wishes.

[christine2]

My daughter has an Appointment in Montreal on Monday 8/21 I am so excited. I had a great conversation with Celia tonight and feel so GOOD about the spinecor brace. I also spoke to Melissa Yesterday and both of you have made me feel like there is hope. I will let you know how things go I understand Dr. Rivard is the best!!! I have not felt this relaxed since I found out about my daughters scoliosis. I think I may actually be able to get some sleep after we go to Saint Justine Hospital.

I think my daughter is a great canidate for the brace since she is only 6.

[Celia Vogel]

Christine,

It was great talking to you too! I can't wait to hear the results you get with the brace :) Yay !!! We have another spinecor convert :D

[christine2]

I am working from home today and trying to plan our trip. My son who is also 6 is going too (they are twins).

My next mission is to research back packs!

signed

Another Spine cor convert

[Celia Vogel]

Montreal or bust....that made me smile! As for back packs, I got both my kids the ones that roll on the ground - I can't remember what they're called. :confused:

[mariaf]

Hi Christine,

Just another option to keep in the back of your mind, should you need an alternate plan, might be the stapling - particularly because of your daughter's age. My son had it done over two years ago when he was 5 years old in the hope of avoiding many more years of bracing. And, more recently, another mom who comes on here (Amanda P.) brought her daughter, Lorena, to Philly for this procedure and they are very happy with the results. Lorena is six years old. If you search the forum you can find Amanda's posts.

Best of luck with everything,

Maria

[christine2]

I will definately research stapling. I am curious if we can get the curve down then staple. Those are all ? for docs. I plan on seeing another ortho as soon as I can, possibley Shriners in W. Springfield. I understand that they are experienced with stapling. I did not want to wait on the Spinecor to long I am peranoid about the possibility that the curve will increase if we wait too long to take action.


Thank you

[mariaf]

Hi Christine,

Sounds like you have a great game plan. Perhaps you could, as you say, get the curve down first and then consider stapling. The general criteria for the stapling is a curve between 20-40 degrees and some growth left in the child. Again, these are general criteria and questions for the docs as you say. Perhaps you could even use the stapling in conjunction with the Spinecor. Or if the Spinecor is working and not a problem for the child, you could just stay with that and see how it goes.

The very best of luck to you - and keep us posted.

[pat]

Hi Christine, we went to Springfield Shriners a couple years ago to talk to them about stapling, we were dissapointed, they were not receptive to stapling at all, I hope that's changed. Let us know please if you hear anything different, Thanks! Pat

[mariaf]

Christine and Pat,

I wanted to mention that the place to go for the stapling is the Shriners in Philadelphia. They've done the most surgeries and are very receptive to the idea if the patient fits the criteria.

Good luck,

[christine2]

We just got back from Montreal. My daughter went from 33 Degrees to, are you ready a 9. Amazing!! The doctors think that it will continue to go down too.

We were very lucky to find the curve so early. Erica may only be in the brace for 2 years. (Then watched very carefully)

She hates the brace but it is still very new.

Christine

[Celia Vogel]

Christine,

Amazing news !!! Although I'm not surprised in the least bit :cool: I think it's time to PARTY !!!

[MATJESNIC]

Christine,

That is awesome news. She will get used to the brace. What helped Nicole was seeing the alternative brace the other doctors wanted her to wear.
Kids' spines are so flexible. I am very happy for you.


Melissa

[christine2]

Erica woke up this am saying "the brace feels better already!!" She is in our family room as I am typing doing Tae kwan doe (sp?) kicks !! Not a single complaint yet.

LIFE IS GOOD!!!!!!

Some how parents around the world need to be informed about early detection. I do not know how but I may be on a mission!!

Christine

[mariaf]

Christine,

That is great news!!! As Melissa said, a traditional hard brace is much harder to wear - in any event, if it's only two years, that time will fly by!!!!

[AILEA]

Christine,
From 33 to 9! It´s a good reduction to start with! Good an hopeful news!
I tryed Spinecor for my daughter, but it wasn´t seem to be doing anything special for her, so, we left it and came back to a rigid brace; She achieved a little reduction when she was fitted, only arround a 25%; but if the brace is able to keep tour daughter´s curve under 10 degrees...I think it´s the biggest reduction we´ve seen in this thread!

[christine2]

We were very lucky to have early detection. Erica was a PRIME canidate. The doctors could not wait to try it. They knew all along because of her age and degree of curve it would be a huge success.

[cherylplinder]

Christine,
I am so very happy for you! Celebrations are in order!
Cheryl

[christine2]

We just got back from the pediatician. When the Doctor found Erica's curve 3 weeks ago they also found a heart murmur. (not the innocent kind) I am not sure if it is due to the spinecor but the murmur is GONE!!!

Another thing that I want to throw out there is that it is possible that Erica's curve progressed slightly in just 3 weeks. My point is that if these curves are left to "watch" they can progress Fast I am so glad we got treatment as soon as we did.

Christine

[Mom37]

Glad to hear you went to Canada and got Spinecor which had great correction. I wish you the best and hope it continues to go well.