spinecor

[txmarinemom]

Didn't mean to sound harsh, I just find it odd to be braced for 2 years and not know your measurements.

[gerbo]

Considering I started this thread, I might as well put you in the picture about our current situation. In line with what happened with melisaa's and cheryyl's daughter, we haven't been doing well at all recently, we had our latest check last wednesday and as feared; not good at all, primary curve; about 31, sec curve at T4 39 degrees, no difference in or out of brace, so she has been taken out of it. Mr Cole (orthopaedic surgeon) doesn't think a hardbrace is likely to make any difference (specially as T4 is hard to brace anyway) and is preparing us for surgery (at 50 degrees) which seems inevitable, and about which he seems very relaxed.

mixed feelings plenty; just upset, failing and even guild as I fear that some of the steps we took (even the spinecor) might have contributed to deterioration (specially of the top curve)

not sure what to do next, if anything. Don't think Lisanna and her mum can stomach thinking about taking the hardbrace route as no garantee it will work and emotionally so difficult, she surely is currently happy as anything not wearing a brace and interestingly even previously occuring nightmares seem to have disappeared. Prospect of surgery is too far of to bother her now

Not sure yet what will be more harmful; accepting she is happy now and accepting she will have surgery eventually, or by "encouraging" hardbracing with no garantee of succes, but the garantee of a further couple of years of emotional and physical hardship

tough one to work out....

[emarismom]

Gerbo,

I am so very sorry to hear that Lisanna is progressing. At this moment I truly do feel your pain, as with what has been happening of late, I think many of us are beginning to think of the "what ifs" of surgery in the future.

Please remind me of where Lisanna was at last check up and how old she is now.

With Emily's bad news recently, I have been thinking alot about what I will do if I am faced with the fact that she has begun to progress. I have come to the conclusion, that I will not bother with a hard brace. It is almost like adding insult to injury in my mind. If the spinecor does not work, which may be the case with Emily, I will let her progress until surgery. It is not my call, but I do believe that Lisanna should be happy. I know that the prospect of surgery is scary, I have been there, and may one day be there again. But the truth be told, these young children bounce back so well. Emily dealt with her surgery, and forgot about it. It is me, who is still reliving it.

I haven't posted this yet, but I did visit Dr. Brian in Atlanta over the holidays. He refitted Emily's brace again. I have made an appointment with him again in late March.

[RugbyLaura]

So sorry to hear your news Gerbo....

It's so hard for us parents to know what to do. I really don't think right & wrong come into it. We all do the best we can & still end up feeling guilty - that's what being a parent is all about :(

Is Mr Cole positive it will progress? Lisanna is nearly 14, if she is nearly fully grown perhaps it won't get any worse now? Maybe not wearing the brace will stop the secondary curve from progressing?

If surgery does become necessary will Lisanna only need a small portion of her spine fused? I imagine that fusion of the thoracic area will have less impact on flexibilty than lumber???

Sending you & your family love & support. Thank you for all you've done for us. I can't imagine how awful Immy's life would be now in a hard brace. I don't expect the outcome to be any different using Spinecor but I know that it makes this time so much easier to bear.

Laura x

[gerbo]

thank you Renee, emarismum and Laura; every bit helps

[cherylplinder]

Hey my friend,

I just wanted to post Dr. Sanders opinion again.
Lisanna and Rachel had very similar profiles. Rachel's curve was 33 to 38. Dr. Sanders measured her at 33 in April of 2006. So did Dr. Conklin in December of 2005. The 38 was in Montreal in Jan of 2006, between the two 33 degree measurements. I was never sure whether the 38 was within the margin of error or if there had been progression and then correction.
He told me in April of 2006 that nothing would hold Rachel's curve, given her risser age and degree of curvature. He felt Spinecor would hold her as well as anything.
He refused to cast her. He didn't say lose that extra 10 pounds and I'll cast her, which I think he would have done had he thought it would help. He just didn't want to cast her.
He didn't think any other brace would be more effective.

Let go of the guilt, my friend. You helped me let go of mine.
You are such a great dad! Lisanna could no have had a better advocate. We have all done our best!
You have said before that many have travelled the road to surgery successfully. Lisanna will also, if that is the only choice. Her life is going to be great! I know it!
If she is anywhere near as wonderful as you are, and she is YOUR daughter, she will make her way fabulously! Her trials will only serve to add to her strength and compassion.
I love you! I will be praying for you all!

BIG HUGS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Cheryl

[MATJESNIC]

Gerbo,

You know how I feel. I am sharing all the emotions you have as I can relate to them. Being helpless to do anything is the worst part of this scoliosis. When you have the progressive type it is so far out of our control. I am so glad to see that Lisanna is coping with this so well and no longer having nightmares. You have my support throughout all of this. You are not alone. You are a wonderful Dad.

Cheryl,

Your post brought tears to my eyes. And I am sorry I don't remember who said this, but it is true, Nicole is going on with her life and I am the one who is harping on the cruelty of it all. I am the one having a difficult time letting go of it.

We really are all on this journey together. We are all in different stages. But thankfully we all have one another to lean on.

[rtremb]

Gerbo:

So very sorry to hear Lisanna's curves have progressed. There is still a chance that her curves won't get any worse given her age. Do you know her Risser?

Were the in-brace and out of brace x-rays taken a couple of days apart? Dr. Rivard told us that you have to be out of the brace for at least 24 hours before the out of brace x-rays will show the actual real curves. Just wondering.

Have you tried the SI (Rolfing) and yoga?

Ruth

[AILEA]

Gerbo, so sorry to hear about your latest news. I use to come to this thread to see how all you are doing with the spinecor; I feel I know you, after years of reading your post.... We had a similar appointment nearly two years ago, when my daughter was still wearing the spinecor. As Cheryl has pointed out before, when one treatment falls, it’s time to start another one, and if surgery is in the future, we have read lots of successful stories in this and other forums.

I wish you the best
Hugs!

[cherylplinder]

Sarah,
I hope all went well at your appointment.
Cheryl

[jillw]

Gerbo, Sigh, I know you had been worrying that there had been progression and I am very sorry to hear that it was confirmed. I'm glad her nightmares have gone away, but feel bad that she has been having them at all...has she had them every since she started wearing a brace? (My daughter, interestingly, started sleeping with a nightlight again about a week after she got her brace and I can't help but think the two are related). So if I'm interpreting correctly, Lisanna's primary curve was a lumbar curve and her secondary curve's apex is at T4? I hope that given Lisanna's age she never progresses to 50 degrees.

[stephanieC]

Gerbo,

I am so sorry to hear that Lisanna has progressed. Guilt is a tough emotion to carry around for a long period of time. Let go of yours. You are a great dad who has done everything a parent should do for their child.

Let Lisanna enjoy being brace free right now. Enjoy it with her!! She does not feel the burden of a possible future surgery the way you do. Kids are lucky that way.

Hugs to you.
Stephanie

[stephanieC]

Cheryl,

I am glad your daughter is comfortable in her new brace. What is the cheneau brace?? Is it for larger curves?

Stephanie

[cherylplinder]

The Cheneau is a brace that is popular in Europe. It is similar to the Boston, but different enough to help curves that are often not helped by the Boston. It is a custom TLSO with pressure achieved by indentations in the brace at the level of the curves. There are negative pressure areas to allow for curve movement in the desired direction. It also corrects rotation. It is useful for small and large degree curves.
Luke Stikeleather is a master orthotist and in some cases achieves permanent correction even of large curves. He says he wishes he had gotten his hands on Rachel a couple of years ago. At this point, I do too. He said that when her curve was 17 degrees at 7 years of age, he would have braced her. Our ortho refused. This is an amazing brace. I'll bet it would have worked. I also think the Spinecor would have corrected her then. Her curve was very gentle, i.e. not sharp, then.
Ann, one of his staff, told me that she brought her 12 year old to him with a 45 degree curve that he permanently corrected to the low to mid 30's by the age of 15. Every shred of hope helps.

[mpj]

Hello all,

We just arrived back from Canada. Another good trip. Snowed the entire time! Madeline's curve is at 3 degrees. We started around 24, at our last appointment it was about 5. She looks straighter each visit. We have been using Spinecor for a little over a year. Dr. Rivard said that things will probably stay about the same until she starts her big growth spurt. She is 91/2. So we will just sit tight and keep our fingers crossed.



Gerbo,

Sorry to hear that you have not had the news you hoped for. As my mom says "Let's not worry until we absolutely have to." Hard advice to follow!Hoping you can avoid surgery, but knowing you will get through whatever lands in your lap.

Take Care.

Sarah

[emarismom]

mpj,

It's great to get some good news around here!! You must be thrilled!!

Michelle

[cherylplinder]

Sarah,

I am so thrilled. We have been on this forum for a long time. When Rachel progressed, I wondered how many people I had influenced with Rachel's initial results, to make this decision. The first year Rachel's response was great!

And if I had changed courses in July to the Cheneau/Schroth, I would have done much better.

Madeline was one I thought of. I remembered that we corresponded by e-mail at first. That makes me feel better.

Hurrah!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am more than happy for you!

Cheryl

[cherylplinder]

The Cheneau is a brace that is popular in Europe. It is similar to the Boston, but different enough to help curves that are often not helped by the Boston. It is a custom TLSO with pressure achieved by indentations in the brace at the level of the curves. There are negative pressure areas to allow for curve movement in the desired direction. It also corrects rotation. It is useful for small and large degree curves.
Luke Stikeleather is a master orthotist and in some cases achieves permanent correction even of large curves. He says he wishes he had gotten his hands on Rachel a couple of years ago. At this point, I do too. He also said that when her curve was 17 degrees at 7 years of age, he would have braced her. Our ortho refused. This is an amazing brace. I'll bet it would have worked. I also think the Spinecor would have corrected her then. Her curve was very gentle, i.e. not sharp, then.
Ann, one of his staff, told me that she brought her 12 year old to him with a 45 degree curve that he permanently corrected to the low to mid 30's by the age of 15. Every shred of hope helps.
__________________

[AILEA]

I am so thrilled. We have been on this forum for a long time. When Rachel progressed, I wondered how many people I had influenced with Rachel's initial results, to make this decision. The first year Rachel's response was great!
That is what I’ve been feeling, We too had good results at first with the spinecor, and I’ve been concerned about the fact that someone has made their decisions because of our first results; Perhaps I was too optimist, thinking spinecor was like a little “miracle-brace”, and well, in fact there are no miracles, and nobody knows what is going to happen with some curves….
So, I’m very thrilled for all of you who are having good appointments, and I’m looking forward to hear from all you… Congrats Sarah!

[mpj]

Hi Cheryl,

Thanks for the info. on the new brace. Don't feel bad about influencing us. We still work with our orthopedic in Madison and our primary care doctor as well.

Thanks for the good thoughts.

Sarah

[mpj]

Aliea and Cheryl,

How long after using SpineCor did progression begin for your kids? Was it gradual or fast? How old were they? I have a hard time keeping track of everyone.

Since our orthopedic in town has thought we should just watch and wait for now, we thought that we would try SpineCor in the mean time. We would switch to more conventional bracing if needed. Hopefully we won't have to though :)

Sarah

[stephanieC]

Thanks Cheryl,

I wish Rachel much success in the cheneau.

I know what you mean about influencing other parents. But all we are doing is sharing our stories and journeys with eachother. At this point with my daughter, who just had VBS surgery and is doing great, I pray and do believe the stapling will hold. But we all know that the "growth spurts" are the time of testing so to speak. My daughter is 9. I will feel better when she is 16 or so and has stopped growing. Only then do we know if our chosen path or paths have worked. Let's face the truth, some children progress to fusion no matter what we do, or how many things we try. We all pray it won't be our child, but we have all learned that children do well and live beautifully even after a fusion surgery. This we know thanks to other parents who continue to share there journey with us even after there original hopes were crushed.

Parents make there own decisions about their child's care. We simply let others know their options and what we are all doing. Look at how many different paths we have all taken. New parents have full access to all our paths, then they choose.

We are all doing the best we can for our own child and simply sharing the journey.

Stephanie

[jillw]

Sarah, Yay! I'm glad to hear your good news. We are like you, we were told to watch and wait so are trying spinecor in the meantime.


But many thanks to all of you who have posted with your initial good results because they DID influence us and I am glad it did! (otherwise we'd probably just be waiting now). And thank you for continuing to post so we can get information that helps us make decisions in the future as well. From the beginning I've had it in my mind that we might need to try something else when (or slightly before if we could time it) she's getting ready for the big growth spurt. Maybe spinecor usually works well for those who start it with small curves, or maybe it only works well for a year or two, but either way it is a good thing, in my opinion, because the quality of life during that time period it does work is so much better. So please don't feel bad about any of your postings. I am in all of yours debt from the help I have received!


I would LOVE it if spinecor could take my daughter through her whole treatment period, but I know the odds are not on her side.

[jillw]

Cheryl, How does the cheauneux (spelling it wrong but too lazy to go back and look!) fit under the clothes compared to a boston brace?

[stephanieC]

Hi Jill,

I remember speaking with Dr Rivard on the phone and he seemed very positive that curves under 30 degrees are held very well with the spine cor. If Katie's compliance with wearing the spine cor are good and she wears it through her coming growth spurts, over the next 6 years, it is my understanding that your daughter would fall into the "best" category as far as likely success. Her spine is currenty being held very straight as she grows and strengthens. This is the philosophy of the spine cor. I really hope Katie has success and others too!! It would be nice if 6 years from now you and I could be writing about our different paths to SUCCESS for our children. Giving new parents options!!

:) Stephanie

[cherylplinder]

Obviously, there are success stories on our forum too. Celia and Deidre, Pat and her daughter(Pat had a daughter braced conventionally that progressed to fusion and began early intervention when her other daughter was diagnosed. I can't remember her beginning measurements, but she was either in the teens or 20's degree wise and is now around 6 or 7 degrees and has been for a while.), Desheah and Luke, all are having wonderful results. Sarah, I have been thrilled with your results with Madison. Jill, I think you are having amazing results.
None of the kids that progressed ever had readings as low as the success stories I mentioned above. That makes me hopeful for you.

Some of our progression stories run about the same, with curves initially correcting in the first year to the high teens to 20's and then progressing in the second year, if I remember correctly. I don't remember all the ages, but you could look back. I think most were already near 30 or over when they started.



Rachel started Spinecor at 10 and progressed from 11 to 12.

The Cheneau is visible under Rachel's clothes, but she doesn't mind.

The first year, I did consider the Spinecor a miracle brace. Really, 5 to 6 inches of growth with no progression was a dadgum good accomplishment.
I just wish I had switched strategies when she began to progress.

[qiling]

Hi,Gerbo, I'm so sorry to hear that Lisanna has progressed. I know how you feel.

Hi,cherly,
Thank you for keeping posting.
We had a x-ray follow up with the surgeon, it showed T42/L28 in Spincor, we all shocked. :eek: I'm still hoping that was some kind of error, do you think it is possible from T28/L27 out brace (in Montreal) jump up to T42/L28 in brace within one month? :confused: if that is not a case than the machine in Montrael and here are different. I'm so disappointed, upset and guilt.The surgeon is not support Spincor at the beginning, Jennifer is in Boston brace, we are dealing with rash now,does anyone have experience with rash in hard brace?

Elaine

[BraceGal]

we are dealing with rash now,does anyone have experience with rash in hard brace?

Elaine

Hi,
Just to answer that when i got my third brace with no holes in it, i got a big itchy rash on my stomach.
i can't remember what i put on it it was either aloe vera or calamine lotion.

Hope thats helpful,
Tayla

[qiling]

Hi BraceGal,
Thank you for the information,we have it drilled 21 ventilation holes ,order 10 of the Bonston t shirts,used draft laundry soap and corn star baby power. hoping that could help.

Elaine

[BraceGal]

what r the boston tshirts?? :confused:
I use plain bonds singlets
and tryed some tubey stuff
ive never heard of boston tshirts.
the other stuff sounds good ive had holes put it my brace scince then. I evengot my name!

Tayla

[qiling]

Hi Tayla,

The boston t-shirt is a tank top-ish body sock , it will stretch more than 150% to assure a wrinkle-free form fit under your brace.it is a cushioning and wicking perspiration away from your skin. made by coolmax/lycra with antibacterial fiber .you can order it from your brace man.

Elaine

[HaleyMom]

Hi Everyone
I'm new to this forum - lots of really great info! I've read through all the SpineCor posts and was wondering if there are any signs to look for when children start to progress with this brace - ie back pain, brace doesn't fit properly, etc.

My daughter was diagnosed at 6 with an 18T curve. Our orthopedic recommended watching and waiting, telling us that bracing and exercise was not the least bit effective. By the time she was 9 her curves had progressed to 34T,18L. At that point she was put in a Boston brace to try to slow things down and put off surgery for a few years. Luckily, after several months in the Boston Brace, we stumbled across SpineCor and a new doctor (still kicking ourselves for not doing it sooner). After 7 months with SpineCor she's back down to 16T. I was really surprised how much more energy and coordination she has after switching and doing all the associated exercises. Hopefully things will be stable for a while.

HaleyMom

[rtremb]

HaleyMom:

So glad to hear your daughter's curves were reduced by the Spinecor brace.

Ruth

[BraceGal]

Heyy,
the boston shirts sond pretty good ill have to ask!

[RugbyLaura]

Hi all. Just thought I'd say hello and wish everyone well. Immy is still doing fine. She has grown a bit and is complaining of a little pain in her right side. We have an appointment on March 14th but I don't know whether to go sooner....

xx

[rtremb]

Esme is having the same problem - the pain is in her right hip. We were scheduled to go to Montreal on Monday to see Dr. Rivard and Colliard but their office called today to reschedule because Monday is a holiday for the hospital workers at Ste. Justine for Valentine's Day! We are rescheduled for mid-March but I don't know if we can wait that long since the brace is hurting Esme's hip a lot and she hasn't worn it much the last couple of weeks. Esme was very upset when we told her the appointment had been rescheduled because she was really hoping the doctors would have a solution for the pain.

I am going to call (or email) Dr. Rivard and Dr. Colliard with her latest measurements since she has grown a lot all over and gained weight since her period started Dec. 31st. Hopefully they will have some suggestions.

Ruth

[cherylplinder]

Well, if things are not well, it is better to find out sooner rather than later. Rachel grew a lot in August and September. I think she was fine then. Her growth patterns were great (I marked her every day.) She was gaining in height and probably not progressing. When her 4 strap got too tight, I called and they said to come sooner if I was concerned. She had only grown a couple of cm and I thought(That's really not that much, she'll be OK) Dr. Coillard said her lumbar couldn't become structural, which was what I was most concerned about with the 4 strap so tight. I decided to leave things as they were. I think it was a big mistake.

You are not facing the same set of circumstances, but I have found that if I feel I need to go sooner, I do. In 2006, I went almost every 3 to 4 months. She did fine. I just called and said I thought we needed to come. I delayed in 2007 with disastrous consequences.

Who can say it is because I delayed? No one. But I can't help but know that if the tight strap contributed to the progression, going would have helped. If progression was what was occuring, I could have changed strategies sooner. If you think you need to go, push for it. It is OK. You won't regret taking a precaution and you could regret the delay.

Just my opinion from my experiences. I wish you all the best!

I also recommend getting your x-rays read from more than one source. Dr. Rivard and Dr. Coillard measure from the same vertebrae every time. Most orthos measure the worst angles they can find in the curve. It puts them on a different plane than the other orthos. They are not being deceptive. Dr. Rivard told me their system himself, but I have had 2 other orthos tell me their system of measurement, and it is different.

I still do not regret the Spinecor, just delaying when Rachel started to progress.

Hugs!

Cheryl

[rtremb]

I emailed Dr. Coillard last night and she wrote back today asking for our phone number. It was on the bottom of the email below our signatures but I guess she didn't see it. She said she would call back quickly .... maybe we will hear from her tomorrow. I am not comfortable waiting until mid-March so hopefully the doctors will offer us an earlier appointment.

Ruth

[cherylplinder]

That's good to hear, Ruth. I am glad you forged ahead.

William was just diagnosed with scoliosis last week. His curves are not large, but I don't know what I am going to do yet. We haven't had an ortho visit, so I don't know the degree.


I am certain he has some lower extremity discrepancy. His hips are too uneven for the degree of curvature. He either has some leg length discrepancy going on or an asymtomatic subluxation of the femur. I''l know soon.

Rachel likes her Cheneau even better than her Spinecor. It was an adjustment, but so was the Spinecor. She is very comfortable.

We met with Dr. Timothy Kuklo of Shriners in St. Louis. I liked him a lot. He was empathetic and supportive of my desire to avoid surgery. We have another appointment in July.


Hugs to all!

Cheryl

[HaleyMom]

Cheryl, Ruth
How often do people typically get their SpineCor brace adjusted? We were told we'd need it adjusted every 3 months for the next few years.

[cherylplinder]

Montreal schedules visits every 5 months. The first year, I went every 3 or 4 months. Rachel did much better with every 3 or 4. You can catch a potential problem sooner. I think when they are growing fairly rapidly, every 3 is essential.

[mariaf]

Just my two cents - I agree with Cheryl that with any brace, it's best to go as often as you can to have it checked (3 mos. vs. 4 or 5). If the child has a growth spurt and there is, say, five months between visits, he or she could be wearing an ill-fitting brace during that time and you want to avoid that.

Good luck.

[RugbyLaura]

We go to see Mr Mills every 3 months for brace adjustment. We see Mr Cole (surgeon) every 6 months. Immy has x-rays every 6 months.

Cheryl, so sorry to hear about William. How old is he?

Ruth, Hope you hear from Montreal soon. I would find it hard to wait until mid March if I had concerns.

Immy seems more comfortable now. I think the bodysuit was just a bit scrunched up.

Winter is sooo much easier with the brace as it doesn't show under clothes. We had a beautiful, sunny spring day today. I'm dreading summer!

xx

[jillw]

Cheryl, I'm sorry to hear about William. How does he feel about it?

[MATJESNIC]

I believe every 4 months is good. Then you get x-rays three times a year. Curves can get big very quickly. Better to find out sooner than later.

[rtremb]

We still haven't connected with Dr. Coillard yet. She left a message yesterday but we couldn't understand what she was suggesting we do. I will try to call her again tomorrow.

I am wondering if anyone has ever had the hockey shoelace part of belt adjusted. The belt does not fit Esme the same way now as it did when she first got it - the straps can't be closed all the way. I am wondering if this is making the belt not fit right and therefore causing the hip pain. We were told to never move the shoelace so I am reluctant to play around with it.

She's gone all weekend without wearing the brace at all and this is really starting to bother me!!

Cheryl - so sorry to hear about William. If it is a leg discrepancy does this make the scoliosis easier to deal with (i.e., a shoe lift)?

Ruth

[RugbyLaura]

Ruth, Immy has every part of her brace checked and adjusted at each appointment. Her shoelaced plastic pieces have never met at the back. I'm sorry to hear Esme is having such a hard time with the brace at the moment. I'm afraid I have no advice for you...

I am happy with x-rays twice a year. Her curve is measured using a Scoliometer at the 3 month appointments. If this measurement was different from previous she would be referred for immediate x-ray.

[christine2]

Hi everyone

We are back from Montreal with GREAT news. My daughter is down to 3 degrees and Dr Rivard anticipates it will be to 0 at our next visit. We still have a long road ahead but for now we can relax a bit.

I firmly believe that her compiance has made the difference. Compliance is the key to any brace. I am just glad we found spinecor so that my daughter can have a great quality of life.

My suggestion to anyone who has questions about the fit of the brace is to have it checked by their Dr. There has been many times that I have wanted to "play with it" but didn't with out discussing it with the docs. And each time they say don't alter it. Apparently each part of the brace is "balanced" to give the proper tension on the areas needed. If your children are having pain in the brace The doctors should check.

I was also concerned about the shoulder tilt and Dr. Rivard said that that is what is giving her the correction (makes sense) He said the the upper compensatory will disappear once out of brace.


So all in all things are great

Good luck to all!!

[mpj]

Hi Christine,

So glad to hear that you had a good trip. Great news for your daughter! :)

Take Care,

Sarah

[HaleyMom]

"I firmly believe that her compiance has made the difference. Compliance is the key to any brace. I am just glad we found spinecor so that my daughter can have a great quality of life."

Great news!!
Hopefully we'll have similar good results.

What type of exercises did Drs. Rivard and Coillard prescribe for your daughter and how often does she do them?

My daughter has been really good about doing her exercises every day - and it shows.

HaleyMom

[jillw]

Christine, that is WONDERFUL WONDERFUL news! I know her curves were measured slightly higher in your previous visit - such a small difference that you wouldn't call it a progression of her curves since its well within the margin of error, but nonetheless you must be extra tickled pink to have it drop to the lowest yet! Thanks for sharing your news with us.

Ruth, we've only had one follow up appointment so far so the shoelace part has never been adjusted (in fact, given my daughter's size, the pieces are fairly close together and there is a TON of extra shoelace hanging around and making her pants lumpy - I keep meaning to ask them if I can cut the extra shoelace a little shorter, but then it might fray and/or I don't know if this same piece is supposed to last for years in which case she might eventually need the full length.) I hope you get some answers soon!

[jillw]

Christine, a follow up question, you mention they said the upper compensatory curve would go away when not wearing the brace... how large is that curve? (i'm guessing the 3 degree curve is the primary curve?)
thanks! Jill

[emarismom]

Christine that is wonderful news!! I'm sure that you are on cloud nine right now. Congrats.


Michelle

[christine2]

I do not have a measurement for the upper compensatory curve. I believe Dr Rivard does not even measure it because it is only temporary.

My daughters laces were also very long we cut off about 6 inches figuring by the time the brace gets let out that much it will be time for a new brace. We cut & burned the frayed edges. I am always tucking the laces into her pants because they are hanging, she doesn't care she is always saying
"Mommy, (whining) NO ONE KNOWS WHAT THEY ARE"

We do not do any exersizes. My daughter just stays active. We BRIEFLY tryed craniel sactral therapy but had a hard time with the commitment. So decided to go with the flow and if we needed to get more aggressive with exersizes down the road we would. I think my daughter will really need to kick it in durin puberty.

[cherylplinder]

Congratulations!

I am sooooo happy for you!

Compliance is key to any brace working. But Rachel has always been compliant. Her curve progressed anyway.

And if your child has a growth spurt and the brace looks different on them to you, go get it checked.

I called when Rachel's 4 strap looked too tight to me. Dr. Coillard thought it would be OK, but offered to check it if I was concerned. I convinced myself to wait and leave it til the next appointment. I still think it was a big mistake. That strap was too tight because of growth and set off the delicate balance of the brace. It definitely caused her lumbar to progress. And probably caused her thoracic to progress.
She progressed at the appointment before that, also, and her 4 strap was not too tight then.
Go figure.

[christine2]

Hi Cheryl

I firmly believe that the path of scoliosis will take you where it wants despite what we do. It is something that we must try to fight but in the end, it will do what it is destine to do. I can only hope that in my daughters case, we will beat it. If we do not we will at least know that we gave a good fight!!!

One of the problems most parents need to fight is the "wait & watch " theory. We as scoliosis fighters must get out to others do not wait!! Start fighting right away, at the 1st sign of trouble. That is the only way to at least try to beat it!! Early detection and early bracing no matter which type of brace you choose.

I wish you well

[rtremb]

Christine:
Great news. You must be thrilled.
Esme goes for Rolfing again tomorrow.
Still haven't connected with Dr. Coillard.
Ruth

[jillw]

Ruth, I'm sorry to hear you haven't connected with Dr. Colliard yet - the wait must be frustrating. Hopefully you'll get some good answers soon - didn't somebody say that there was a canadian holiday this week (or some portion of this week)? Good luck with the Rolfing tomorrow!

Christine, same happens to katie. Especially after she goes to the bathroom she forgets to make sure the shoelace is tucked in her pants also. We call it her tail. (in public I can mouth the word "tail" and she'll laugh and know she has to tuck it in without others picking up on it) So did burning the ends of the shoelace keep it from fraying? If so, I'm cutting of some lace also. I agree by the time she needs to let it all out she probably would need a new one...things are already starting to wear out a bit and its only been 4 months! (i assume that some parts can be replaced piecemeal, but at some point they just start over? I'm realizing between snap replacement and the likely need to replace velcro very soon and I'm guessing repeatedly that this is going to be like an annuity expenditure :)

[emarismom]

Jill and Cristine,

Emily used to have that problem of the shoelaces hanging out over her pants. It didn't bother her, but it drove me crazy. So I just put a safety pin on them, connecting them to the rest of the shoelace part. They never came out again!

[MATJESNIC]

Christine,

I am so happy for your family. I wish you continued success.

[RugbyLaura]

Great news Christine!!! :D

Re Shoelaces; Mr Mills (Spinecor expert in UK) cut Immy's straps himself & burnt the ends with a lighter. (she wasn't wearing it at the time :eek: ). He cut them fairly short (about 3 inches) so I'm assuming he's not worried about them having to last a long while. The gap between the two plastic bits is about 2 1/2 inches.

Immy has not been prescribed any exercises but she is a dancer & gymnast & is always stretching!

I'm not expecting Spinecor to hold Immy's curve and avoid surgery as we didn't catch it early enough. I'm really hopeful for those of you with younger children who caught the curve early.

xx

[RugbyLaura]

Hey Ruth!

Tried to send you a thank you but your mail box is full!

So I'll say thank you here instead. :D

Laura

[Mom37]

I just wanted to update everyone that Amanda is doing great after 6 months pos op and is cleared to do anything mom and dad allow. She is slowly getting back into swimming, but needs to build endurance. She is really tired after 30 minutes of light laps, but is doing fine. Thanks for everything. Shirley

[MATJESNIC]

Shirley,

That is awesome news!!!!! I am so happy for Amanda. I hope she enjoys her new freedom.

[Mom37]

Shirley,

That is awesome news!!!!! I am so happy for Amanda. I hope she enjoys her new freedom.

Thanks for the quick reply! How is Nicole? and yourself? Great I hope! Unfortunately she is already talking about Six Flags rollercoasters at Spring Break in a few weeks. The doctor said she can bungi jump or whatever we her parents give her permission to do. Hopefully we will be out of town, and hope we can deter that a while longer.

[MATJESNIC]

Shirley,

When you said she could go back to activities, I didn't know you meant everything such as roller coasters. I know many doctors don't let the kids do them until one year.

Nicole is counting down the days to her appt. We have a little over two weeks to go. Nicole can't wait to start having some fun. Some days it really gets to her.

Have a good time watching Amanda really enjoying life again. You all deserve that big time!!!

[Sherie]

That's great news Shirley. Is she completely fused? I'm so anxious now to see Sheena's new xrays and to see if any of her restrictions will be lifted (not that they interfere with her lifestyle). Maybe you can hold off on the roller coasters until summer, you should feel a lot better about it by then.

Have a good spring break!

[jillw]

Melissa, i'm glad nicole's appointment is just around the corner. i hope they give her the ok to dance again at this appointment.

Shirley, that's wonderful she was given full clearance for activities!

Has anyone heard from Gerbo? I was wondering how Lisanna was doing and if he went ahead with a Cheaneaux brace (i spelled it wrong, I'm sure)

[Mom37]

Sherie, Melissa, and Jill,

Thanks for your replies. Yes the doctor said no restrictions. She asked last visit on when she could do rollercoasters and they said not yet, but not this time. She felt his saying bunge jumping was ok if we said so meant rollercoasters should be ok. I think he figured she wouldn't do anything daredevil. We told her to ask him if that is what she wanted. Well she tells me this evening that Six Flags opens this Saturday, March 1st, and is asking about season passes. I hope no friends ask. She has one who already renewed before the park closed after Christmas. I work weekends, so we wouldn't go, and I doubt dad would take her or her sister, so we will cross the hurdle when she is asked to go. I am going to try to have her hold off as long as possible on rollercoasters. That is really the only thing that she is asking, and otherwise doesn't have anything I would worry about. In fact, I hope she will be more active as time goes on. I am having to push her a little, and I we will be swimming a lot this summer, as that is the plan.

[gerbo]

Has anyone heard from Gerbo?

I have, seeing him in the mirror on a daily basis.

Re Cheneaux; seems to be a non starter, consultant not particularly encouraging and Lisanna and wife not keen. Currently feel might have to bow to inevitable future surgery, although I am still trying to change course of history with some exercises and osteopath input. Not hopeful though. Demoralised? a bit!

gerbo

[emarismom]

gerbo,

You have put up a good fight, sometimes we just have to take what is handed to us and make lemonade. Thankfully, as bad as it is, we do have fusion surgery that CAN correct these curves. We may not always like the means to the end, but in the end Lisanna will fine. (I tell myself this on a daily basis to keep myself going).

Mom37,

That is wonderful that Amanda is able to do so much SO soon!! I think I would hold off on the rollercoasters as long as possible too. Especially with the syrinx (Is it completely gone or has it reduced?). Emily has never been tall enough for big coasters, and also not too interested, but in March we will be going to Six Flags Over Georgia, and I have been getting worried about the bigger coasters and her CM/SM.

[jillw]

Gerbo,
Emarismom is right...you certainly have put up a good fight and in the process have educated people such as myself to all kinds of alternatives to a boston brace. It was through you (by starting this thread) that I learned of spinecor and from your other posts first heard of the Cheneaux brace and torso rotation exercises, etc. You take a very thoughtful/logical and holistic approach to this condition that I wish I could find in a Dr.! I am very grateful to you for your help and knowledge and will keep my fingers crossed that the exercise/osteopath work better than you expect. How does Lisanna feel about the potential for fusion in the future? Please keep us updated when you have time!

[gerbo]

thanks

i'll try to stop feeling sorry for myself

Lisanna is just happy being braceless, I don't think she has a clue what fusion might entail and mean in practice, might be better for now

and yes, I will keep you updated of new developments as and when they occur

.....and thanks again :) :)

[MATJESNIC]

Gerbo,

Hang in there. I feel sorry for myself many times, and for Nicole, of course. Other times I think, "What am I carrying on for?" It varies from day to day. We are all rooting for Lisanna and we will help get you through anything you will be facing. This support group has been so necessary for me. I hope you find comfort in it, as well.

[jillw]

Gerbo, Scoli su**s and if I were in your shoes (and I very well may be in the future) I would also be feeling very bad and sorry for my daughter. I think you have every right to feel that way (and we can't really control how we feel anyway, can we?)

I'm glad she's enjoying her brace free time but it must be very hard for you knowing that at some point she may be forced to learn the reality of fusion surgery. I think the hardest part of our "journey" so far was when I learned all the implications of what might lie ahead for Katie but she was still innocently ignorant. She's still ignorant, of course, in most ways but at least she's gotten used to the idea of wearing a brace for a while. You have probably seen that Melissa is taking Nicole for her 6 month check up in a couple weeks. I hope that in a few months Melissa is posting that Nicole is back to dancing and able to perform at the level she previously had. I hope that will offer hope for you if Lisanna does eventually need fusion (and again, I'm hoping that she won't!)

[jillw]

Hi Melissa, it looks like we were posting at the same time... I was just "talking" about you!

[Mom37]

Mom37,

That is wonderful that Amanda is able to do so much SO soon!! I think I would hold off on the rollercoasters as long as possible too. Especially with the syrinx (Is it completely gone or has it reduced?). Emily has never been tall enough for big coasters, and also not too interested, but in March we will be going to Six Flags Over Georgia, and I have been getting worried about the bigger coasters and her CM/SM.
Thanks. Amanda will be doing her 1 year follow up since her 3 month post op for Chiari in April. She had enough reduction of the syrinxes to to spinal fusion 9 months later. Her neurosurgeion gave her clearance to do roller coasters so we aren't worried about the Chiari/SM. Check with Emily's doctor on the rides, but I bet it isn't much of an issue if any. Have fun at Six Flags.

[rtremb]

Gerbo:

You have been on this forum a lot longer than I have and probably already read all about these two things but I'll suggest them anyway in case you haven't.......

Did you try Rolfing for Lisanna? Esme's posture has really changed since she started having this done. Don't know about her curves yet but for sure she is standing up straighter. Worth looking into perhaps?

Also, Esme used to walk with her toes pointing outwards (like a duck). Her rolfer recommended Esme wear Superfeet pronator insoles. After wearing these for a few months Esme now walks with her feet straight even when she isn't wearing her shoes. There seems to be some belief this walking with the toes pointed outwards contributes to scoliosis.

Just a couple of suggestions sent with the best intentions.

Ruth

[emarismom]

Mom37,

Emily's NS did release her to do anything, including rollercoasters, ice skating, horseback riding, etc. It's just me being overly cautious. Since I know that the syrinx is there (even though it is a lot smaller), I still try to keep her safe from anything with jolting and jerking motions. As she gets older, it will get harder to say no, especially now that she is getting tall enough to ride more. On April 4 we will go for her next MRI. (This is the 5th, and its with sedation, Emily refuses to do it without). Every year since decompression the syrinx has gotten smaller, so I am keeping my fingers crossed that this year will be the same. I'll be keeping them crossed for Amanda too.

[Mom37]

Emarismom,

I understand. I am not sure what we will allow ride wish. We didn't have to worry about Six Flags until we got that approval and now it is opening tonight. She has a friend who wants to go in the next few days. We are not sure, and are not really thriled with the idea. She has been careful before so that I was really not worried. I think that you and I will just have to use our gut and decide. I think that she will need to test lower/smaller rides and work her way up to see what her body is comfortable with. I wish you the best. I hate to be too cautious, yet we don't want to do the wrong thing either. Let us know how the MRI goes if you can, and I'll try to do the same.

[WNCmom]

Hi Everyone--

We've been gone for the past 6 weeks and I just caught up with this thread. We have an appointment for our first 4-month check-up next Thursday. I'm quite nervous; I'm hoping against hope that Sidney's curve hasn't progressed (he grew an inch while we were gone--it was summer where we went), and worried that it has. I've been reading all your comments about curves that just won't stop no matter what. Perhaps Sidney, too, is headed to surgery eventually. But since he's only 12, I do wish we could hold off until he stops growing!

HaleyMom:
We are also in North Carolina, and I would be interested to know who your first ortho was (the one who said exercise and bracing would make no difference). Ours told us something similar... Who did you switch to (if you don't mind sharing)?

[rtremb]

Welcome Back Mary Ellen. Hope you had a good holiday. Hope all goes well Thursday - will be thinking of you both.
Esme isn't wearing her Spinecor at the moment - it seems to be really pulling her down & forward at the left shoulder and it is also hurting her hip. Tried without success to discuss this over the telephone with Dr. Coillard. Anyway, we go to Montreal on March 13th so we will be able to explore alternatives then with the doctors in person.
The rolfing (SI) is going really well and Esme's back seems a lot better to me (hope I am not misjudging this or I will be crushed). Her back looks flatter and she is standing up straighter all the time. When I run my fingers along her spine (I do this once a day or so - can't help it) it feels less curved. Miranda (her Rolfer) keeps saying her spine is unwinding/unravelling. Hope she is right. Miranda is showing Esme some new yoga moves too.
Ruth

[jillw]

Hi Mary Ellen, Good luck at the appointment! let us know how it goes (is it on the Thursday in 3 days or the Thursday the following week?) Katie's next appointment isn't until mid April and I'm already starting to get nervous so I can guess how you might feel.

Ruth, Esme's appointment is just around the corner also! I hope they are able to do something to make the brace feel/work better. I hope you get good news also.

[WNCmom]

Thanks for the good wishes, Jill and Ruth. Our appointment is Thursday March 6 in Atlanta. Off and on I've been in a real panic, but over the last few days I've felt calmer--I hope it lasts!

Ruth, the SI sounds really good. I'm looking forward to hearing how the March 13 appointment goes. It'll be here before you know it.

Mary Ellen

[wnorm]

I'm a 55 year-old woman with untreated AIS. I just got my Spinecor Brace today from Dr.Louise Marcotte in Montreal. I feel pretty good. I have never felt staighter. I recommend it . Of course, today is my first day with it. Let's see how I feel after a week of looking slightly weird in clothes and feeling like I'm in a straight jacket. I guess I will get used to the inconvenience for the sake of avoiding a collapsed spine and spinal fusion. I welcome any questions.

[MATJESNIC]

Ruth,

Your daughter and my daughter both have their appts. on March 13. They are very important appts. for both of them. I hope we all get some good news. I will be thinking about you that day.

Good luck to all of the adults getting Spinecor. I hope it brings you some relief from your pain.

[jillw]

Wnor, I"m glad you feel pretty good in it - hopefully you'll feel even better as time goes by.
Its funny, I've noticed that the way the brace fits my daughters torso, the crotch straps act as a fanny lifter...my daughter doesn't need that, but I thought I sure could use something to offset the effects of gravity over the years on my tush! (maybe an added benefit for adult spinecor wearers ;) )

Anyway, good luck.

[wnorm]

Dear jillw,
I never thought of the spinecor brace as a tush lifter. I'll be honest with you. My clothes don't look too great over the brace. Call me vain. But the snaps and straps show up a lot. I'm very short and ~ size 6. I wear city-type clothes as I live in Montreal. It only looks Ok with sweats.
I'm glad your daughter is improving. Good luck to her.

[Allegra]

i knew i wasn't the only one who noticed it!
some of my friends agreed that my butt totally looks bigger with my brace :)
ahahahahaha

[wnorm]

Are you now the Jennifer Lopez of the Spinecor Generation? Good for you. It's good to keep a good sense of humour. Today I had to take my brace off after about 8 hours. I had a bad migraine today. It felt better after I took the brace off. Yesterday, too. It could be a coincidence. This is my first week. I heard that you have to get used to it gradually. I sent an e-mail to Dr,Marcotte about this. I didn't get a response yet.

[Allegra]

i got a lot of headaches and arm numbness when i first started wearing it.
i think it's easier to get used to if you wear it at night first.
just my opinion. then you get the feel for it for when you actually start moving around and going about your day.

haha the Jennifer Lopez of Spinecor?
most definitely :)

[WNCmom]

Well, I told you I'd keep you posted. Yesterday we went to Atlanta for a check-up and x-ray of Sidney's back after 4 1/2 months in the Spinecor. The news was both good and bad. Sigh.

The Good: Before the x-ray was taken, Dr. Ouellette noticed that Sidney's left hand hangs in front of his body, something he said is difficult to achieve even in-brace. When he noticed it, Sidney was not wearing his brace, so the doc was even more pleased. My understanding of that is that it means his left shoulder is rotating forward--a good thing, since the scoliosis is wanting it to rotate back (it wants his right shoulder to rotate forward).

The Bad: The in-brace x-ray shows his curve has increased 7 degrees since November 21. He didn't take an out-of-brace x-ray and won't do that for a few months yet. We imagine the curve is greater out of brace, but don't know for sure. When Sidney first got the Spinecor brace, it reduced his curve 7 degrees from where it was out-of-brace--so we can only assume his curve has now progressed in-brace to what it was out of brace 4 1/2 months ago.

The doc said the culprit is T6, which is tilting just slightly more and leading the curve. Below T8 Sidney is fine, he said--the compensatory curve had only increased 1 degree. Sidney grew 4 cm in 6 weeks while we were away on a trip in January and February--a fast growth spurt. Apparently the tendon and muscle on the concave side is so strong and tight that it is pulling on the vertebra. In addition, the spinal rotation at T5 has increased 3 degrees from 12 to 15, which the doc said was a "slight increase." I have to say it was interesting (and nice) to be given so much detail.

Amazingly, I'm not panicking--so different from last August when we found his curve was progressing and we switched from a Boston brace to Spinecor. I think it's the attitude of the practitioner. Last August, the ped. ortho. surgeon told us there was nothing left to do except wait and continue to wear a brace that's not working. Dr. Ouellette is offering us some new intensive physiotherapy/chiropractic treatment (spinal rotation, etc.) that he feels may reduce the curve, since Sidney is so young and has no wedging. He's not promising anything (in fact he's making a no reduction = no payment offer). At the moment, we are just breathing and considering that. Perhaps we're stupid to even consider it, but what other options do we have? We're not quite yet ready for surgery, although we know it's likely, and even the ortho told us he would delay surgery as long as possible to allow as much growth as possible. If we could reduce the curve, perhaps we can delay the surgery, at least. Sidney is only 12 and will be very tall--he's already 5'6"+, and has lots of growing to do. We are working with a therapist doing MFR, and with this new information we will see if there's any help for this through that. We have our regular appointment next week.

It's where we are right now. Dr. Ouellette did readjust Sidney's brace before the x-ray because he's grown and it wasn't holding him in place as well as he would have liked.

Mary Ellen

[emarismom]

Mary Ellen,

Well it is good to hear that the news wasn't all bad. Hopefully, there will be correction at the next visit. You really sound like you are coping with this well. I'm sure that even with the possible progression, Sydney is much happier in the Spinecor than the Boston brace.

I also see Dr. Oulette. We will be going back on Mar. 31. I have been a bundle of nerves for about a week now. He is very detailed and does explain everything very explicitly (something I have gotten from very few of the doctors my daughter has seen).

[jillw]

Mary Ellen,
4 cm growth in 6 weeks - wow these kids really do grow fast when they hit their growth spurts, don't they? When you said he is working with a therapist for MFR did you mean myofacial release? (structural integration did come to mind when you mentioned the doctor said the tissue is too tight). I hope that the other avenues you are pursuing will help lengthen the muscles and connective tissue and that you'll have better news at his next appointment. How long before they'll xray him again? Well it sounds like you are exploring all avenues to give him the best shot possible - I can't remember if you posted what his curve was before so I don't remember how much "wiggle room" you have before you have to worry about surgery, but I hope the next several months bring some good news.
Just curious, is his thoracic curve to the left or the right? (i'm still trying to get my hands around this rotation thing)

Allegra, I refer to that as the brace's "butt bra" feature :rolleyes: -it makes my daughter look like she's got a high athlete's butt and makes her legs look longer - like (healthy) a model right? or as wnorm said JLo!

Wnorm, I hope you find clothes that you feel works better with the brace. I have found that different cuts look better on my daughter than the stuff she tended to wear before. Do adults have the same wearing schedule (i.e. 2 hours out of brace 2 spread out times a day?) Of course if you're going out its likely to last more than 2 hours so that doesn't help you too much.

[WNCmom]

Jill--

To answer your questions, Sidney (12) was at 48T/43L in October when he went into a Spinecor. His first in-brace x-ray had him at 41T/31L, which was holding 5 weeks later when we went in for the first check-up. Probably a surgeon would say there is no wiggle room at all....

The curve is a right thoracic type III with a compensating lumbar curve. He will have an out-of-brace x-ray in June regardless; if we do the (physio)therapy Dr. Ouellette is suggesting, it wll be sooner (likely May) because we will need one to document any reduction from the therapy. We're not ready to throw in the towel yet.

[wnorm]

When I go out socially I don't always wear the brace. I know that it's for more than 2 hours at a time, but I don't comply as I should. I am very short and this brace really shows up even under sweats. I feel freaky. The top part of the brace shows up a lot above the neck of my t-shirt. I wear regular neck-line clothes. I have to accept the fact that looking like a reject from a junk yard will be my fate in life forever. It's too late for me to show any improvement in my curvature @ 55.

[txmarinemom]

When I go out socially I don't always wear the brace. I know that it's for more than 2 hours at a time, but I don't comply as I should. I am very short and this brace really shows up even under sweats. I feel freaky. The top part of the brace shows up a lot above the neck of my t-shirt. I wear regular neck-line clothes. I have to accept the fact that looking like a reject from a junk yard will be my fate in life forever. It's too late for me to show any improvement in my curvature @ 55.

Try wearing a brace as a pre-teen/teen.

I *hope* the ones wrestling with it now miss your desciption. Everything at that age is a social event.

At this point in my life I'd like to think I'm beyond "give a sh**" how my friends judge my attire. ;-). I do know if I *chose* to spend the money on it (an aside, I wouldn't ... but that's just me), I'd damn sure wear it as prescribed.

It's a fairly expensive exercise in non-compliancy for an adult - even if it IS just a test for pain relief. Just how do you plan to judge the efficacy?

BTW, this is now another reason I'm dubious about Spinecor stats.

An adult *elects* to wear it, and doesn't as prescribed: How is minimum/optimal time required in brace actually measured, and is pain relief perceived or real?

Regards,
Pam

[ElleBelleCurvz]

Pam-COuld nottt agree more (and also with the whole issue i wasnt trying to put feelings first, if thats how it looked so again im sorry! :))

but first of all why are you wearing a brace at 55 (wnorm) its kinda pointless rite? and u have a spinecor, not only should you try wearing a brace as a teenager, but how about as a boston or milwaukee brace or with people whispering freak behind your back (almost said brace...) and your friends were embarassed to tell you? How about if people were feeling that because it showed thru your clothing and you got more attention that they shoudl stop any contact you had with your firends? This probably makes no sense at all, but I gotta say, Ive been thru ALL that, and i wear my brace, heck my brithdays in 2 hours and im wearing it as we speak! So please, wear the brace it's wayyyyy more important than your feelings (sorry) or how other people look at you, heck half them will probably only see you once, or forget about it in 20 minutes...i have people that i see everyday that i thot knew and they still don't , it could surprise you how little people can tell, even when MY brace is thick plastic that goes to my neck, and not fancy thin cloth straps... :cool: puttin it in perspective for ya, but do w/e u want

[txmarinemom]

^5 for getting my point, Danielle. I hated my brace, and I had no choice in wearing it. I know all the feelings you describe, and unfortunately, some others I hope you NEVER pass in the hall.

To hear an adult complain (who CHOSE to wear it) how it affected their social appearance would have *infuriated* me. Oh, wait. It did.

BTW, 'elle ... Happy Birthday. May every single one from here on out be *more* happy. Hang in there.

Regards,
Pam

[ElleBelleCurvz]

Thanks, this whole experience has just reinforced who's there and who...isn't. Thanks though, and continue to get better from your surgery (ur doing the 5K tomoro??? wow amazing, good luck :))

[txmarinemom]

Yep ... 9 a.m, GMT-6 (CST on the day Daylight Savings Time changes).

It's a walking 5K.

I HATE running (outside basepad to basepad playing ball). I MAY just take it up (grumbling every step) because I CAN, *when* I can. (about another 4 weeks!)

Regards,
Pam

[jillw]

Pam, I'm a little confused, you say you had no choice wearing your brace when a teenager but i thought i read elsewhere that you said your compliance with wearing your brace when you were a teenager was very bad? Maybe I'm confusing you with somebody else...

I thought this board was supposed to be a place to not only learn things, get and offer encouragement, but also, when needed, vent. I thought this was the one place one could say what was truly on their mind related to their scoliosis even if they are feeling down?

[jillw]

Danielle, I'm very sorry to hear that your issues were compounded by people who were jealous of the "attention" you were getting. Hang in there - I hope the brace does great things for you - not just your spine, but the wonderful resiliant compassionate person you will turn out to be because of having gone through this adversity. Good Luck!

[wnorm]

I apoligize for my insensitive complaining about the brace. I should have kept it to myself considering all those out there who have it MUCH WORSE than I do. I guess I need a mother to complain to. Please anyone out there considering a Spinecor Brace please get one. My back feels great with it on, and my neck doesn't hurt as much . It's true what txmarinemom said about wearing the brace in public. No one really cares what you look like. Thay forget about it in a minute but we have to live with the pain of scoliosis.

To the subject of quantification. Since I was not asked to do a log or journal I don't see how use in adults can be quantified. Dr.Marcotte asked if she can use my case for her research. Good point. I have an M.Sc. (Aquatic Toxicology). Random measurements without standardization have no statistical significance.

[txmarinemom]

Pam, I'm a little confused, you say you had no choice wearing your brace when a teenager but i thought i read elsewhere that you said your compliance with wearing your brace when you were a teenager was very bad? Maybe I'm confusing you with somebody else...

I thought this board was supposed to be a place to not only learn things, get and offer encouragement, but also, when needed, vent. I thought this was the one place one could say what was truly on their mind related to their scoliosis even if they are feeling down?

jillw,

I got my brace LONG before my teen years (I was diagnosed at age 10).

I did wear it (no choice ... my parents actually had the teachers check me) the last part of 5th grade/ALL of 6th grade - and I had nowhere to hide it anyway if I removed it. Non-compliancy began as soon as I hit Jr. High and had a sports locker in which to hide it away.

Venting is fine, but on THIS topic? Sorry, I just can't manage to be supportive of statements like "I have to accept the fact that looking like a reject from a junk yard will be my fate in life forever." by a 55 year old woman who *chose* this option.

Imagine reading that as a kid on here.

wnorm, I apologize for jumping on that with both feet, but I only WISH finding clothes that fit was my worst memory from my brace.

Pam

[Allegra]

wnorm,

i completely understand how you feel.
even if it was your choice, you have a right to vent anyways.
it's probably harder to have a brace as a teenager, but easier to find clothes.
the spinecor works great with leggings and a dress, or jeans and cute shirts.
but i'm not sure what older people would wear with it, especially if you had to wear business suits or something.
why do you have one again?

[wnorm]

Dear Allegra,
It was nice to hear a few kind words after the lashing I took for venting about the brace. I thought a forum was meant for venting. I guess I was wrong. How do you find wearing the brace? How long do you have to wear it? Adults like me will have to wear it the rest of their lives. Ihave a curve of ~45 degrees. The last few years I have been getting a lot of neck , back, hip, knee, etc pain. I have had a herniated disc in my neck. I have osteopenia, bursitis, osteoarthritis, tendinosis, inflammation of the sacro-iliac, constant migraines, etc mostly related to my untreated AIS. I am wearing the brace for pain relief and to retard collapse of my spine. The x-rays already show signs of collapse. I was supposed to have spinal fusion in a few years prior. Maybe now I won't need it. Who knows?

[Susie*Bee]

wnorm-- good luck with the brace! I hope it provides a lot of relief for you. Yes, we do tend to get a lot of "extras" on our lists of challenges as we age, don't we?!!!

It makes me chuckle to think of you wearing clothes like Allegra. What an encourager, though. That young lady has a lot of empathy. :) Wouldn't that be fun to wear clothes like she does? I have noticed recently how the young styles are getting back to being more flattering for kids that aren't the super thin type. I like the slightly looser look rather than form-fitting/stretched to the extreme.

Hang in there. Keep us posted with how your body adjusts to the trials of wearing your brace -- it sounds like quite a challenge.

[wnorm]

Dear Susie,

Thanks for the encouraging words. You sure went through a lot. How are you feeling? Do you have to wear a brace now?
I can't wear loose fun clothes. I am very short and conservative. Tall women I think have an easier time of it.

Good luck and best wishes

[Susie*Bee]

I'm feeling pretty good. Thanks for asking. I gave a little more detail in the adult 1st surgery forum a few days back-- 10 month appt. thread. I wore a TLSO brace for about 4.5-5 months post-op. It was hard when I weaned off it-- it had been giving my back all its support, so it was very fatiguing to not have that anymore... but I got through that part ok too. Any of you girls reading this--don't worry. It's because I'm older and had all those muscles cut during surgery. So you won't have that problem. Besides, I am pretty strong now. (or like to think I am! :D ) So it doesn't take all that long, even for someone like me. :eek:

wnorm-- I didn't think you'd really wear those loose fun clothes. It just sounds fun. ;) I wear "age appropriate" clothes too. It goes with the territory... Take care!

[Allegra]

wnorm,
I would totally get a fusion if it would help your conditions, but only if the spinecor wasn't doing anything.
I got the brace last september but i didnt even start wearing it until late october/november. My parents told me i had a choice and then got it anyways, most likely to clear their consciences, but there were no xrays, no Spinecor Assissted Software, no nothing.
I spent about two years before this researching scoliosis and learning about spinecor but it was still a big thing for me.
Then i started getting used to it and actually wore it for a while, but my parents still havent taken me for xrays and they're not following the spinecor plan. I guess i felt like since they werent taking it seriously, why should i?
I don't know. But i wear it to bed every night.
However, I'm a little scared to wear it a lot because i could potentially create a worse curve. it's not an excuse, i read a story on here about a person (icant remember who) who waited to go back and ended up making their curves worse. If i could get it readjusted and get some xrays so i know it's doing something, i would totally wear it more, because it's not that hard to hide.
Sorry for the long post, i just don't know what to do.

[txmarinemom]

wnorm,
I would totally get a fusion if it would help your conditions, but only if the spinecor wasn't doing anything.
I got the brace last september but i didnt even start wearing it until late october/november. My parents told me i had a choice and then got it anyways, most likely to clear their consciences, but there were no xrays, no Spinecor Assissted Software, no nothing.
I spent about two years before this researching scoliosis and learning about spinecor but it was still a big thing for me.
Then i started getting used to it and actually wore it for a while, but my parents still havent taken me for xrays and they're not following the spinecor plan. I guess i felt like since they werent taking it seriously, why should i?
I don't know. But i wear it to bed every night.
However, I'm a little scared to wear it a lot because i could potentially create a worse curve. it's not an excuse, i read a story on here about a person (icant remember who) who waited to go back and ended up making their curves worse. If i could get it readjusted and get some xrays so i know it's doing something, i would totally wear it more, because it's not that hard to hide.
Sorry for the long post, i just don't know what to do.

Allegra,

I realize you are trying to do what your parents SHOULD be handling (I *totally* do not understand them getting you a brace and then dropping the ball), but you are risking serious damage to yourself.

You'd be better off with NO brace than wearing a brace incorrectly.

How exactly do your parents justify their lack of involvement??

[Allegra]

txmarinemom,

I really don't know what to tell you.
I don't think they understand its a serious problem.
My dad always says "do your homework" not meaning it literally, but to research everything.
in 7th grade, my parents signed this paper saying i could be exempt from taking the middle school scoliosis test.
but i was convinced i had it, so i researched it for 2 years.
and i found this forum and read all 400 posts on this thread. they never believed me until i had to get a cheer physical last april.
then i got xrays in august and then the spinecor.
but it just took a back seat i guess.
my dads been really busy (he's a lawyer)
and my mom has been stressing over her job (shes a music teacher in CA and might get laid off)
and my mom said she didn't care considering i didn't and would worry about it over spring break.
wow i'm tearing up right now...it just makes me so mad that they dont understand whats going on, and i'm so scared it's getting worse.
i know i was uncompliant in the beginning, but im still a child. i guess i can't even make one mistake. i just wanted to know exactly how it was working and the degrees i had. why would i put it on if i didnt know how it was affecting me?
i was only supposed to have to wear it this year, but i have no idea what's going to happen.
at least my back is super flexible.

well, i think i justified my side at least a little, even though my parents think i'm some ungrateful selfish child. haha.

[txmarinemom]

txmarinemom,

I really don't know what to tell you. I don't think they understand its a serious problem. My dad always says "do your homework" not meaning it literally, but to research everything. in 7th grade, my parents signed this paper saying i could be exempt from taking the middle school scoliosis test.
but i was convinced i had it, so i researched it for 2 years.and i found this forum and read all 400 posts on this thread. they never believed me until i had to get a cheer physical last april. then i got xrays in august and then the spinecor. but it just took a back seat i guess. my dads been really busy (he's a lawyer) and my mom has been stressing over her job (shes a music teacher in CA and might get laid off) and my mom said she didn't care considering i didn't and would worry about it over spring break.
wow i'm tearing up right now...it just makes me so mad that they dont understand whats going on, and i'm so scared it's getting worse.
i know i was uncompliant in the beginning, but im still a child. i guess i can't even make one mistake. i just wanted to know exactly how it was working and the degrees i had. why would i put it on if i didnt know how it was affecting me? i was only supposed to have to wear it this year, but i have no idea what's going to happen. at least my back is super flexible.

well, i think i justified my side at least a little, even though my parents think i'm some ungrateful selfish child. haha.

I always swear I won't post at 2:26 a.m., and I'm not changing any of my gut reaction text. Melissa, however, brings up some valid questions in the post immediately following this (and I've no clue - I fully admit - how the entire Spinecor system works).

All I could think in my insomniac state in the the wee hours was "OMG ... they aren't doing what??!"

I'll be following this with interest. Major soft spot for kiddos and animals, and I hope this wasn't as bad (parents "too busy" to raise kids) as it sounded ... *sigh. One case, however, is one too many - and there are far, FAR too many :(. ~Pam
__________________________________________________ _______

Allegra, that's just awful ... I'm so sorry. No kiddo deserves the treatment (or lack of) you described, and what you described could even be deemed negligence.

Even if you were uncompliant to start that's NO excuse for your parents to be "too busy" or "too stressed" to attend to your medical needs as their child. You shouldn't feel you have to make excuses for them ignoring your health needs because they're busy, stressed, whatever ... we ALL are. Taking care of you is their job as your parents, and that job should be their first priority.

Did I understand correctly your mother said she would do *something* over spring break? Does she mean "something" once (as in a single visit), or "something" like regular visits? If so (to either question), spring break is soon, right? Has an appointment been made yet?

Do you have a close relative or adult friend with whom you can discuss this? If your parents have insurance, maybe you could just arrange your own visits to the doctor with a little help from an adult??

I'd also offer a gentle suggestion you think about working some of this through with your school counselor. If I've understood you accurately, you're blaming yourself (with what sounds like their help) for some of this.

Please keep posting on how this comes along, hon. You have rights and protections. While many can't *afford* medical treatment, what you described (their refusal to take you to the doctor) sounds more like some form of punishment vs. lack of funds. That's completely different.

You certainly deserve better.

Best regards, (and a big hug).
Pam

[MATJESNIC]

Allegra,

My daughter wore a Spinecor for 18 months so I do know a bit about the brace. I have never heard of anyone getting the brace without having had x-rays, been properly fitted, etc. Unless someone handed you a brace that they were done with, how exactly did you get this brace? From an orthopedic, a chiropractor? Where exactly? I really am trying to understand and to help you with this problem. Could you please explain?

[Allegra]

Pam,
I totally agree with you. It feels like my parents don't care, which they totally should. The spine is like the most important part of the body, considering it holds you up. haha.

I don't want to make excuses for them, but i'm scared to argue because i don't want to be accused of starting problems.

I wish I knew what that *something* was. but i bet it won't happen.
Maybe they do care, but i wish they would just help.

I guess I could talk to a counselor, but if i drag one in, it would just start more problems at home.
Although honestly, I wish i had someone i could just sit down and talk to that would understand, besides the people on this forum.

I know we can afford it, since we have insurance, but i don't have anyone in my family that can help me. I live in mission viejo, CA and my mom's family lives on the east coast. my dad's mom is in leisure world and his brother is in marina del ray. and i know he wouldnt be able to help.

spring break is in like 2 weeks, so maybe something will be done.
ughhh this is sooo stupidd!

[Allegra]

MATJESNIC (melissa)

I always read your posts about Nicole and I'm so glad her surgery worked out. I hope she gets back to dancing soon.
My orthopaedist/surgeon is dr. Aminian, who is supposed to be some famous doctor, idk why. But he sent me to this brace fitter in long beach who basically out the brace on me, put two bodysuits, extra crotch straps, and some pictures in a bag and sent me on my way.
And the whole time my mom was telling me how grateful i better be because of the money she's spending on me, even though the insurance is covering it.

you know it's not my fault i have scoliosis. if they didn't want this responsibility, then they shouldn't have had a kid. too bad im such a mess up.




p.s. if nicole wants to friend me on myspace, it's myspace.com/no_regrets_4_allegra

[mariaf]

My orthopaedist/surgeon is dr. Aminian, who is supposed to be some famous doctor, idk why. But he sent me to this brace fitter in long beach who basically out the brace on me, put two bodysuits, extra crotch straps, and some pictures in a bag and sent me on my way.
And the whole time my mom was telling me how grateful i better be because of the money she's spending on me, even though the insurance is covering it.

you know it's not my fault i have scoliosis. if they didn't want this responsibility, then they shouldn't have had a kid. too bad im such a mess up.


Hi Allegra,

You are NOT a mess up!! And of course it's not your fault that you have scoliosis. I'm so sorry you seem to be going through this alone at home. I really think you might want to consider talking to a counselor or another trusted adult - not to cause any trouble at home or anything, as you said you were afraid it would do - but just to have someone to listen and advise you and just be there for you.

If I wasn't clear across the country I'd come give you a big hug!!

You will see from my signature I have three children and my daughter is just a little older than you. I am often accused of being TOO concerned and driving my kids nuts making sure they take care of their health, go to the dentist, wear the right jacket, etc. It's not a burden for parents - it's what we are supposed to do - so please don't feel like you are asking too much or that you are a "mess up" just because you expect the proper treatment.

Please always know you can come on here and talk to us. I know it's not the same as having someone there in person that you are close to but we'll do our best :)

BIG HUGS,

[MATJESNIC]

Allegra,

I am really sorry you are going through this. I hope your Parents will get you to the right doctors because you need to have x-rays done so that the Spinecor is fitted on you correctly.

I am sorry you are feeling like a burden. I'm sure your Parents don't see you in that way. When we have children, we know there will be lots of bumps in the road.

Remember that you are not alone in this. We are all here for support. I agree with Maria that maybe you can talk more about this with a school counselor or some other adult you trust. You shouldn't have to feel this way.

Thank you for caring about Nicole. It means a lot to us.

[LATigner]

If you live in Mission Viejo, there is an excellent caring doctor in Tustin, which is only about 20 minutes from you. His name is Dr. David Gorrie, he has been treating scoliosis for over 15 years. He is great with the Spinecor brace, trained by Andrew Mills (who makes the brace) himself. If you call him at (714) 544-9789 (his wife Ginny will answer the phone) I'm sure he will answer all your questions (or your parents). He can easily give you an x-ray, lesson on the brace, adjust it, etc. My daughter has fairly severe scoliosis, wore a Spinecor brace and has been treated by Dr. Gorrie for over 3 years. Good luck and kudos to you for pursuing what you need to take care of your health. Don't give up.

[Allegra]

Maria,
thanks for the across-the-country hugs. it means a lot.

LATigner,
We originally went to dr. gorrie when i was first considering the brace and i loved him so much. he was so nice and helpful, and it didnt feel like he was pushing us to get it at all. but then when we went to the surgeon, he recommended us to go to some place in long beach or something.
but more then anything i wish i could go to him. :(

[wnorm]

Dear Allegra,
I'm sorry you having all these problems with the brace, etc. suggest you e-mail the SpineCor Corporation and tell them your plight. If the doctor in Long Beach is an accredited distributor of the brace he has to follow the normal protocol which involved x-rays, putting your data on their specific computer program which distributors have to buy, getting a specific exercise program and follow-up appointments. A brace alone without all these is only worth hundreds vs 1000s of dollars. How much did it cost? I hope you weren't scammed. Please contact Dr.Couillard in Montreal who invented the brace and tell her all this stuff.
Good luck
Harriet
P.S. I'm adapting very well to the brace. It's been 1 week and a half since I got it. The migraines have finally passed. I feel much straighter and have less beck and neck pain.Working at the computer doesn't hurt so much. I'm getting pretty fast at putting it on. If you put the bum straps etc on tightly it looks better under clothes.

[Allegra]

oh shoot!
i think the brace was like $5,000!
ughhh
thanks for telling me.
my parents whould be the ones on here finding out that they got scammed by the most retarded doctor ever who thinks i tell him what to do just because i ask a lot of questions!
kvsnejkrsvfdjksgjrskgjdfsfkg;nfjdskvnjrhgrekg;njfk s!
ok im good

i'm so glad you're doing better in the brace :)
it;s so much easier to wear at nightt
i totally had myself trained to sleep on my back

[mariaf]

Hi Again Allegra,

You see Dr. Aminian, right? It sounds like you don't think too highly of him. I'm curious about what you do think of him.

I have heard his name because I believe he has also started to perform VBS (stapling) so his name has come up, but I have never spoken to any of his patients.

Do you mind telling me how you have found him to be (both as a doctor and as far as bedside manner) so far?

If you don't want to answer that's fine too, but I would value your opinion of him. And I just like to learn as much as I can about the different orthos.

thanks,

[wnorm]

Dear Allegra,
The brace, x-rays, etc shouldn't cost you more than ~$3,100. After that follow-up appointments should be ~$120. I will have several appointments over the next year or two. Please contact The Spinecor Corporation.
How long do you have to wear the brace? What's the prognosis?

[rtremb]

We are going to Montreal tomorrow to see Dr. Rivard and Dr. Colliard again.

Esme and I are pretty nervous as usual - have had some real shocks in the past with these check-up appointments!! Esme hasn't worn the brace at all lately - it is hurting her left hip and pulling her right shoulder forward so much it hurts and makes her bend over. She has grown quite a bit and put on some weight.

We are hoping Dr. Rivard will agree to allow her to have an out of brace x-ray before they put her back in the brace so we know where we are at with this.

I don't think she looks like she needs surgery though so I am hoping and praying for the best tomorrow.

Ruth

[wnorm]

Dear Ruth,
Good luck


Harriet

[txmarinemom]

Allegra, as the patient, you have EVERY right to contact Spinecor.

Dr. Aminian is not listed as "Spinecor Accredited". Who actually fit your brace?

You may email Spine Corporation at: info@spinecorporation.com

Specify you're a patient, and include your mailing address - including the country - along with your questions.

I'm sure others on here have more direct emails. If your parents won't handle this, you need to.

If I understand what you've written correctly, this doctor is overcharging for substandard treatment, non-adherance to protocol on prescription of the Spinecor brace, and is doing so without even *x-rays*. Regardless of whether the brace cost $5 or $5,000, without x-rays, how in the world could you have received a brace that ever fit properly ???

Allegra, these are serious issues you've raised, and he could be in SERIOUS trouble.

Honestly, I wouldn't be surprised if other list members don't check on this doctor and his affillliation with SpineCor.

I am also going to encourage you again to speak to your school counselor. From what you say, things are pretty bad at home *anyway*: It doesn't sound like talking to someone is going to make them worse, and it could very well help YOU.

Regards.
Pam

[WNCmom]

Ruth:

I have been thinking about you all this week and will be waiting to hear the results of Esme's appointment. Wishing you the best of luck.

Mary Ellen

[jillw]

Good Luck Ruth! Let us know how it goes - my fingers are crossed for you. How long has she been out of brace?

Allegra, I know that different doctors charge different amounts - I think we paid close to $4000, but that included the charge for xrays. As the others point out, it would be impossible to fit you for the brace without Xrays. You said Dr. Aminian didn't take any...but did you bring recent Xrays with you from another place when you went to see him? Some orthos will use xrays that were already taken to fit you for the brace to try and minimize xray exposure - in those cases, the xrays have to have been taken shortly before the appointment, of course. They can't be outdated. I'm glad spring break is coming up - most doctors book out in advance though so if you don't have an appointment scheduled yet, you try to get one ASAP. I think Pam has good advice, it would be good to talk to a school counselor (or maybe even the school nurse? both?) - maybe they can act as your advocate and point out how important it is that your parents follow up.

[Allegra]

Maria,
Dr. Aminian is very nice and professional, and his office is nice. I have nothing against him except tht he makes a billion dollars a year (which you can see from his shiny leather shoes and suit) for telling kids they have to wear braces. The first time i saw him, he told us he thought spinecor was nothing more than a few straps that would do nothing. and when we came back in august he couldn't say enough about how impressed he was with the spinecor program. go figure. he was a little late, but apparently he had just finished doing brain surgery on a baby or something. idk.
Oh yes, i think he was the first doctor to do the VBS procedure on the west coast.

wnorm,
I was only supposed to have to wear it this year.
I checked with my mom, carefully avoiding an arument, and she said it was about $3,000. but there were no xrays.

Pam,
You're exactly right. I'm trying to find the person who fit my brace...i believe he is a prosthetics engineer, not a doctor. i don't understand why Aminian would send me there, but i'm looking for it right now.
Once again, i'll be taking things into my own hands, but i can handle it.
I've seen the schedule spinecor doctors follow, xray every 3 months, in brace, and an out of brace one every 6 months and all that. i would love to get this doctor for not following protocol. He also put the bolero upside down, as i noticed from the pictures Dr.GORRIE was nice enough to give me. This "prosthetics maker" said to go to dr. aminian for xrays, which we never did, but they should have been taken right then and there. I expect that Spinecor Assissted Software, and I better get it. I don't want that guy getting away with this. Plus, if i don't find this guy on the list, which is how i found dr. gorrie, i will certainly not back down.
Pam, thank you for turning my feelings of confusion/sadness/anger into determination. I definitely plan on going to a counselor, but i want to start this first.

Jill,
All this "prosthetics maker" did was put it on and show me what my "corrective position" or something was supposed to look like. I had an xray a month before when i saw Dr. Aminian, but there should have been xrays as i was getting it to see which way would work best.
Funny you should mention making appointments. When i asked my mom wht the name of the doctor was, which she didn't even know, she was like, you better not make any appointments without me. if i have to, i'll get my friend to take me. i really want to see dr. gorrie.


EVERYONE: thank you so much for caring. it really means a lot to me. and i'm going to figure this out. obviously, it's up to me. woo. haha

[rtremb]

Well not good news today. Esme's curves have progressed to T63, L64. Not good. We will now have to go with surgery. Esme's back doesn't look so bad and her posture is excellent still but we know if we do nothing she will suffer badly as an adult so........

Ruth

[Allegra]

Pam,
I knew it. That "prosthetics engineer" isn't even on the freaking list!
but why would a famous surgeon send his patients to someone not accredited to fit the spinecor? This guy does make braces, but not spinecor. I'm so disappointed.
However, I took long lookat the list, and I noticed dr. gorri is doing some spine cosultation for free. so is another doctor, dr. colvin. i did spend some time gong through his website and found that he is looking for 4 kids with scoliosis to brace with the spinecor so he can finish his training. they get like $500 off the brace and 50% off all appointments. as for the consultations, he gives them for free. I think i'm going to investigate this, and if i'm allowed, i'm going to ask my friend to take me. Maybe then i can really learn what's going on with my spine now.

Ruth,
I'm so sorry Esme has to get surgery, but at least you know you've done all you could have. Plus, with all the rolfing or whatever, her spine might be more flexible and easier to fuse straighter.....not trying to give you false hope about better correction, just an idea.
I hope you and Esme are doing okay.

[mariaf]

The first time i saw him, he told us he thought spinecor was nothing more than a few straps that would do nothing. and when we came back in august he couldn't say enough about how impressed he was with the spinecor program. go figure.

Hi Allegra,

Yes, that is odd that he had such a change of heart regarding Spinecor.

Keep doing what you are doing - asking questions, demanding answers - hopefully you will get to the bottom of this whole thing about why it seems you were sent to someone who is not certified to fit patients with the Spinecor brace. I know there is a lot on your young shoulders but you're handling it well. Don't be afraid, though, to ask for help from any adults in your life that you trust and can talk to (other relatives, counselors, etc.)

Good luck!

[LorDon]

Hi Ruth,
I'm so sorry to hear that Esme needs surgery. I know the sadness that you are feeling. You are a great Mom who has done everything possible to avoid this surgery and your kids are so lucky to have you as a Mom.

Big hugs to you,

[MATJESNIC]

Ruth,

You know how sorry I am. Your extreme disappoint is something I understand fully. Ten months ago I was in your shoes exactly. I have never known any Mom who fought so hard to try to keep their child from surgery like you have. It is out of your control. You will get through this. Esme will get through this and everything will be okay. I'm very sorry. Please know that I am always here for you and you have so many people who want to support you. Please keep us posted. How is Esme handling all of this?

[WNCmom]

Ruth--

You've been such an inspiration to me--and I know you've done all you can to avoid surgery for Esme. Everyone here is right--you're a great mom and Esme is a lucky girl. We are all here for you and will do our best to support you as you move forward. And chances are, I'll be following in your footsteps before too long as well. This has got to be difficult. Please know I'm thinking of you and your family.

Mary Ellen

[jillw]

Ruth, I'm so sorry to hear that Esme will require surgery. I know you have tried so hard to leave no stone unturned and I'm sorry it didn't work out. How is Esme feeling?

[Sherie]

Ruth

I too am sorry to hear. You have done all you can, the scoliosis was going to progress no matter what. We all understand your heartache but everything will be ok. Esme sounds like a very resilient girl, as most of us have probably experienced, the kids get through this much better than the parents. How soon do you expect to schedule surgery?

[swimmergirlsmom]

Ruth, My heart goes out to you guys as I'm sure you are all emotionally drained right now. You are an amazing mom and an inspiration to us all. You have done everything you could do avoid surgery for Esme and sometimes these things are just out of our control. I admire all your efforts and appreciate everything you've shared with us. I'm sure all the conservative treatments have helped Esme be more flexible and will make this next journey be more successful. Please let us know how Esme is doing.
Jackie

[rtremb]

Thanks for your kind words. We are all more than a bit shocked. Her back really doesn't look that bad.

Esme is vocalizing her feelings to us which is good. She is very scared but is walking around singing tonight. Hard to read her real reaction yet I think. She has been googling rods and screws tonight!! She wants to know all about it. She goes on Spinekids a fair bit so she has followed the stories of other children having the surgery so she knows a fair bit about what to expect.

We have tried everything we could and a big part of me still can't believe this is happening. I am still wondering whether it is too late for a cheneau light brace but I am thinking it is and we very much doubt Esme would wear it anyway. There is also schroth therapy in Germany but again it is probably too late now for this. I still can't quite give up hoping but I am thinking it is important at this point to help Esme get through this with the minimum amount of fuss - as her Dad said "not to go kicking and screaming all the way"!!

We don't know when the surgery will be yet. We will go back to the Children's Hospital of Eastern Ontario here in Ottawa now. We would, for sure, have had Dr. Rivard do the surgery in Montreal but he is no longer doing surgeries. So we will go back to CHEO. Dr. Rivard gave us a referral to Dr. Jarvis who is the head of orthopaedics and who we have seen once before. We really liked him when we saw him - he is soft spoken and was very gentle with Esme when he examined her. He also took the time to talk to us and answered our questions very well. I am not sure though whether he does the spinal fusion surgery though. Will have to call CHEO tomorrow or Monday. We also have the choice to go to Sick Kids in Toronto.

Ruth

[Susie*Bee]

Dear Ruth-- I just want to echo what others have said about how you have been there, doing all you could, for so long. You are such a supportive, loving mother. It's funny (as in peculiar, not humorous) how quickly our hopes can be dashed... but if I know you, from your posts, as soon as this initial numbness from shock wears off, you'll be moving on to this next phase and not looking back. Sometimes we're dealt cards we don't want-- but then we just have to examine them and see maybe they are just as workable-- and possibly even better-- than what we had originally hoped for. The surgery and recovery will be difficult for you all, there's no getting around that-- but in the long run it should provide the stabilization that her body needs to prevent really serious consequences later. She has such large curves...

I'm so glad to hear she's talking (even singing!) and doesn't seem to be internalizing it all. She's such a smart girl to be already searching about screws and rods! Google is great, isn't it! I think the best way to fight fear is through knowledge. Knowing what you're up against-- and what to expect-- makes the fear that comes with moving into the surgery mode much more manageable. I don't mean that there's ever any way to not be afraid, but rather that knowing more helps you to be better able to deal with it.

From one mom to another, I am really feeling for you right now. I know you would much rather have the surgery for her, if that were in any way possible. Instead, you'll just continue to be that very strong, supportive mom that loves her always, and shows it even more so at times like this when she needs you most of all. You are super at that. Keep us posted with plans and feelings and all. I wish I could give you a big hug...

[flowerpower]

Ruth,

Not much more I can add, but I too am sorry to hear Esme will have to move forward with surgery. As a mom, I know how hard that news is to take, especially after the diligence you've taken in seeking non-surgical treatment. I know you both will do well to research and prepare, and of course you have the support of everyone here.

Take care,
Renee

[christine2]

Hi everyone

Here are Dierdre's X rays from Celia

Orig. May 2002

Most recent 3/2008

After serial casting and Spinecor. I myself am just amazed at the results!!
May 2002
http://i41.photobucket.com/albums/e251/sealy25/deirdresfirstx-ray.jpg

March 2008
http://i41.photobucket.com/albums/e251/sealy25/deirdre032008.jpg

[amandap]

Hi Christine,

Thanks for the update but I have a few questions/comments.

1. Is Celia doing okay ~ we have not seen or heard from her in a while and now you are posting updates on Deirdre for her. Is there a reason she's not posting? I hope all is okay with her.

2. The second film is really dark and I am really unable to see the results ~ which I hope are positive.

~A

[jillw]

Amanda, I believe Celia left the boards which is why you haven't seen her posting - but I had seen a post on another forum and fortunately the news was good...1 degree curve (i think she was measured at 2 degrees in her previous appointment); you can't get much better than that! :)

[txmarinemom]

Amanda, I believe Celia left the boards which is why you haven't seen her posting - but I had seen a post on another forum and fortunately the news was good...1 degree curve (i think she was measured at 2 degrees in her previous appointment); you can't get much better than that! :)


jillw, Celia never left this board. She's been a member, and is STILL a member. In fact, she posted here (quite out of the blue) on 2/26/08 (http://www.scoliosis.org/forum/showthread.php?p=56148#post56148) under the same account she's had forever.

I'd have thought she'd have posted Deirdre's results herself: A bit odd those were posted via proxy, but an article about exercise merited a personal post?

If someone has an active account, and is physically able to post, it's my view they should make their own posts.

But that's just my opinion.

Glad to hear Deirdre's doing well ...

Regards,
Pam

[RugbyLaura]

Deidre is doing splendidly!

I can't speak for Celia, but I can say that I do not visit this site very often anymore because of a few aggressive and unsympathetic members.

Such a shame that this has happened.




jillw, Celia never left this board. She's been a member, and is STILL a member. In fact, she posted here (quite out of the blue) on 2/26/08 (http://www.scoliosis.org/forum/show...56148#post56148) under the same account she's had forever.

I'd have thought she'd have posted Deirdre's results herself: A bit odd those were posted via proxy, but an article about exercise merited a personal post?

If someone has an active account, and is physically able to post, it's my view they should make their own posts.

But that's just my opinion.

Glad to hear Deirdre's doing well ...

Regards,
Pam

Do you have any idea how badly your posts come across? Get over yourself and stop upsetting people.

[mariaf]

RugbyLaura,

As much as I HATE to get involved in this BS again, I must ask you - ARE YOU KIDDING ME??? Read Pam's post again - she's stating facts.

YOUR post, on the other hand, got ugly. All Amanda did was ask if Celia was OK - why the attacks???

If you read OTHER threads on here (surgical, etc.) you will see that Pam has been a HUGE help to many adult surgical patients. She is also one of the most knowledgeable folks I've ever met with regard to scoli (heck, she's dealt with it for 30 years!) and her input has helped a lot of people.

I do not mean this sarcastically, but if Pam's posts upset you then perhaps you shouldn't read them - because I'd bet my last dollar she's not going anywhere.

[RugbyLaura]

Ta da!

Point proven.

I shan't be coming back either. SpineCor thread has been hijacked by people with no interest in it.

Bye

[mariaf]

Hmmmmm....A thread being hijacked by people with no interest in that particular form of treatment (VBS) for their child???

Rings a bell!

[RugbyLaura]

Dear All,

Feeling a little :o ..... I have now calmed down and decided to take the advice of my many friends. Thank you guys!

Without this forum, and this thread in particular, Imogen would be wearing a rigid brace 23 hours per day and would have had to give up dance and fundamentally change her life.

I feel I have a duty - it is also a pleasure (most of the time) - to help to keep this thread going to let people know that there ARE alternatives out there. To this end I must also state that I have never had anything against VBS. I would love to explore all options fully but unfortunately VBS is not available in the UK. I would never criticise anyone for any decision that they have made; we are all here, doing our best for our children (or ourselves) and helping each other along the way.

I have visited the forum a few times over the last couple of months with a view to posting and reading information. On each occasion I have seen unpleasant/argumentative posts . I'm sorry I snapped. I should have ignored them, and will in future.

Immy had her 9 month follow-up today. Just routine, no xrays, asymmetry measured using Scoliometer & laser beam. No change from last visit. Has grown 1.5cm in 3 months so growth spurt yet to arrive. Back again in June when she'll have in & out brace xrays.

Love to all & please come back.....

Laura x

[MATJESNIC]

Laura,

I am glad you decided to come back and post some good news about your daughter. It is great to hear she is doing so well with the Spinecor.

[emarismom]

Laura,

I'm glad Immy is doing well. I'll keep my fingers crossed for June.

We will be going to see the doc on Monday, so then we'll see if the brace is working better now. If it isn't, then I guess I''l nave to weigh the pros and cons of keeping Emily in it. Let's hope that it is working now.

Michelle

[RugbyLaura]

Good luck for Monday Michelle, will be thinking of you...

xx

[cherylplinder]

Laura,

So glad Immy is doing well. Glad you're back! It gets lonely without you all!

Hugs!

Cheryl

[MATJESNIC]

Laura,

We just found out last night that Nicole is going to England next spring with her Choir!!!! She is so excited!!!! Cheerio!!!

[flowerpower]

Very exciting, Melissa! Certainly gives something to look forward to.

Renee

[Sherie]

Yes, that's great news Melissa. They must be really good.

[RugbyLaura]

Oh wow! Where's she going? Probably London?? Let me know details when you get them!! (Can you hide in her suitcase?)

We're going to the US this summer - But US is MUCH bigger than UK....

Laura x

[MATJESNIC]

Thanks everyone. They are definitely doing the Beatles tour, Abbey Road recording studio, changing of the guards, etc. etc. Nicole has been begging me not to go. I am an embarrassment, after all. She will probably get that wish after I saw the price of the trip.

[jillw]

Laura, I'm very glad to hear Immy's appointment went well.

Michelle, My fingers will be crossed for Monday's appointment. I hope you get good news.

Melissa, How exciting! What a wonderful experience that will be for her and the choir! By the way, how has her dance gone so far? Didn't she start up again last week? I hope its going well.

[MATJESNIC]

Thank you. Nicole went to dance last night, tap and ballet. It was her first time dancing since the summer. I brought her and her friend, chatted with a few Moms, got into my car and burst into tears. I cried for joy, sadness, anger, fear, pity. I was just a bundle of emotion. I wasn't prepared for those feelings. I cried for only a few minutes then I kept myself busy for two hours until I picked her up again. She was happy. There was a lot she wasn't allowed to do, especially in ballet. But she agreed that being there doing some things was better than not being there at all. It was so hearwarming to see all of the girls coming up to her with their hugs and greetings. The Dance Academy has been her 2nd home since age 3. Thanks so much for asking.

[flowerpower]

Melissa,

I'm happy for Nicole. Even though moderately restricted, sounds like going back to dance has been good for uplifting her spirits. I totally understand your feelings, I still feel that way on occasion. Like just a little while ago, had my daughter (15) try on her new bikini for me. Noticed some waist/hip unevenness right away. Made her bend over for me, which she wasn't happy about at all and while it doesn't "look" too bad, I notice some asymetry. Looks like I will have to make an appt. for her to get checked out...d***, d***, d*** :( :mad:

Renee

[skoshi314]

Thank you. Nicole went to dance last night, tap and ballet. It was her first time dancing since the summer. I brought her and her friend, chatted with a few Moms, got into my car and burst into tears. I cried for joy, sadness, anger, fear, pity. I was just a bundle of emotion. I wasn't prepared for those feelings. I cried for only a few minutes then I kept myself busy for two hours until I picked her up again. She was happy. There was a lot she wasn't allowed to do, especially in ballet. But she agreed that being there doing some things was better than not being there at all. It was so hearwarming to see all of the girls coming up to her with their hugs and greetings. The Dance Academy has been her 2nd home since age 3. Thanks so much for asking.
My heart goes out to all the moms and dads dealing with their child having scoliosis. I'm so very blessed to have 3 healthy children and none of them show signs of scolio. As a parent, it's must be so very heartbreaking to watch your child go through everything associated with this mess, and for me I'd much rather deal with it myself. You are an amazingly brave group of people! I'm in awe of your strength!

[cherylplinder]

Melissa,

Your post made me smile and cry. I am so happy that life is slowly becoming more normal. The trip, dance.................. Sigh of relief!

Hugs friend!
Cheryl

[MATJESNIC]

Thanks so much.

Renee, I am so sorry. Hopefully it is something minor. Remember that we see things way more critically than the average person. Please keep me posted.

[Sherie]

Renee,

Please keep me posted on your daughter. She would be past the age that it would normally develop so hopefully it's nothing. Do you go back for Vincent in April?

Melissa

I'm so happy for Nicole, and you. It is so good to see them getting back to their normal activities.

[mariaf]

Sorry to hear of your concerns about your daughter, Renee. Hopefully, it's nothing. I'm guessing she should be done, or almost done, growing (I stopped growing in 8th grade).

Good luck with both your daughter and with Vincent and keep us posted.

Hugs,

[flowerpower]

Thanks ladies, I really hope it's nothing, my heart just dropped when I looked at her this morning. Keep telling myself maybe it was just the way the morning light was hitting on her or something. She didn't start menstruation till right before her 14th B-day, I did have her x-rayed a couple of months after that and there was nothing measurable. she is 15 1/2 now, that is what concerns me - she has grown a lot this past year. Vince has an appt. on Tuesday, oh boy :( the gray hairs are popping out as I type. We'll see what the dr. says...

Take care,
Renee

[jillw]

Renee, I hope its nothing...or if it has to be something that is very very very minor. What's the rule of thumb? (which of course doesnt apply to everyone) That growth ends approximately 2 years after menarche? If so, it sounds like she won't have much growing time left. Good luck!

[txmarinemom]

Renee, I hope its nothing...or if it has to be something that is very very very minor. What's the rule of thumb? (which of course doesnt apply to everyone) That growth ends approximately 2 years after menarche? If so, it sounds like she won't have much growing time left. Good luck!

Echoing what ehat everyone else has said, Renee ... hopefully it's not a concern.

And Jill, you're absolutely right about everyone being different - LOL! When my scoli was diagnosed at 10 (in 1979), I was still 4 years pre-menarche. I actually stopped growing 2 years BEFORE I started.

Random historical factoid ... back then, the general consensus was growth stopped *at* menarche.

They still have a lot to learn about scoliosis, but they've certainly come a long ways in 30 years!

Regards,
Pam

[MacksMom]

Renee,

I hope that it's nothing with your daughter! When I took Mackenzie to see Dr. Skaggs a couple of weeks ago, he felt that she was finished growing in her spine. She'll be 15 in June - and started her period in December 2006 - so a little over a year ago. I don't think she's grown much at all in the year since she started - although she was well-developed by the time she actually started (at 13 1/2).

Dr. Skaggs told us that any growth left would probably be in her legs, and not her spine - so hopefully that's the same for your daughter.

You've been a great help to me since I joined this forum nearly a year ago. It's been a crazy, stressful year - but we've made it through. Good luck with Vincent's appointment. Any way to take your daughter at the same time??

Lisa

[Mom37]

Laura,

We just found out last night that Nicole is going to England next spring with her Choir!!!! She is so excited!!!! Cheerio!!!

Hope you stay in touch!

[emarismom]

Good Morning too everyone!! We are still in Atlanta, but I had to post that this time Emily's curve did improve!! She is now 10.6 degrees in brace and she grew 1 inch since the last xray!! That's a 14 degree improvement.
(I am also pretty sure as to the cause of the 24 degree xray).

I am a little concerned over the compensatory curves (this xray has one cervical and one lumbar), but the doctor says that there is no reason to worry, that it is just part of the process. (He said the cervical curve was more than likely caused by Emily's inability to stand straight without moving).

In July we will come back for an out of brace xray. He didn't have to do very many adjustments to the brace, just tightened strap 3 and 4.

[jillw]

YAY YAY YAY YAY YAY! That's great news and must be a relief for you. Did she have compensatory curves before wearing spinecor or did they only come once braced? Or if they were already there have stayed the same or grown since you were braced? Did they measure the size of those curves or do they appear very small? I have also been told the compensatory curves are not something to worry about, BUT I can't help but get concerned. When Katie was 1st put in the brace her primary curve went down but her compensatory curve grew a little bit (which made her compensatory curve bigger than her primary). I did worry about it-fortunately when we went for the 1st follow up a month later, her compensatory had come down too. We go for her next checkup (which will be after 6 months of spinecor) in a couple weeks and I'm already nervous.

[WNCmom]

Wonderful news!!!! I'm so happy to hear it.

[HaleyMom]

Great news Emily's Mom!!!

Are you doing anything in addition to the brace? ie specific exercises, yoga, chiro, foot orthodics, vestibular eye exercises.....

I want to make sure we don't miss out on anything that might help our daughter.

[emarismom]

Jillw,

Emily has had a small cervical compensatory curve since her initial diagnosis. It did increase at the December xray to 14 degrees, this time the doc did not measure it, as since Emily did move in the xray, that area was a little blurry.
He did not measure the lumbar either. I am a little worried, as these compensatory curves have been discussed many times here, but the improvement in the thoracic area is HUGE, so I'm going to try to focus on the positives for the time being.

Haley Mom,

We haven't been doing anything else except wearing the brace and doing the corrective movements that go with it. To be honest, we haven't been 100% consistent with the corrective movements either.

Good luck to you Jill at your upcoming xray. I have been nervous for weeks over this visit. Now I have to get through Friday as Emily has an MRI (with sedation) for the Chiari/Syrinx.

[jillw]

Emaris, Good luck with the MRI! Will she fully be put under (i.e. intubated and full anesthesia) or just given some sedation? I'm curious because the local ortho ordered an MRI when my daughter was 1st diagnosed but nobody seemed to think she needed sedation (there aren't pediatric orthos or pediatric radiology where we live as its not a large market so I don't think they have much experience). I couldn't imagine a fully conscious 7 year old remaining perfectly still for 1 1/2 hours in a tiny chamber so I ended up having her get an open MRI. She was a champ, but unfortunately the MRI didn't go high enough to rule out chiari and didn't go low enough to rule out tethered cord. We're going to have to do another MRI (and we will travel to a hospital that has a PEDIATRIC radiology dept), but I'm curious how they do the sedation (which would definitely be needed if my daughter was going to be in an enclosed MRI).

I'm glad to hear at least the one compensatory curve is still mild - hopefully the fact that he didn't measure the other curve means its mild also. Given that, along with her huge improvement in the thoracic curve, it doesn't sound troublesome. Hopefully, now that the thoracic is down, the compensatory curves will start to self correct in the upcoming months.

[HaleyMom]

Good luck with the MRI.

My daughter had an MRI when she was 9 - complete spine - fully enclosed machine - no sedation. The entire procedure took 1.5 hours. They strapped her head down to minimize movement and gave her head phones so that she could listen to a CD of her favorite music.

She did just fine - closed her eyes and listened to her music. She did not get scared or claustraphobic. I was able to sit beside her the entire time - very cold and very noisy :eek:

Hope everything goes well

[emarismom]

Emily has had 5 MRI's in the past. The first one was brain and full spine and she was five years old. The whole thing took around 4 hours. It was horrible for me. The sedation is usually given intra veniously, but she has never been intubated for an MRI, only for surgery.

The last four (post surgery), were only of the spine to check the status of the syrinx. They have taken anywhere from 1-2 hours. Last year we did try to have Emily do it without sedation, but she kept moving so the doctors had
to sedate her. I have been explaining to her all year that she is old enough to handle it without the meds, but she is very scared and says "I just want to sleep though it".

After Emily's diagnosis, I was terrrified that my son "could" have an asymptomatic Chiari, so I had an MRI done on him. He was 9 and was able to do it with no sedation. Every kid is very different with how they handle things.

[RugbyLaura]

Michelle,

YAY!! I'm thrilled with your news (as I'm sure you are). That's fantastic and also annoying - all that worrying for nothing! What a contrary beast Scoliosis is. In December you felt confident that Emily's back was looking better & the xray was bad news, now the worry & then good news. You just can't second guess can you? And she's grown an inch - Immy had only grown 1.5 cm in the same period. What do you consider to be the cause of the increase in December? (You've probably said before, but I have a hopeless memory!)

Immy also has a small compensatory cervical curve. This has not been measured but Mr Mills & Mr Cole are "keeping an eye in it" as cervical curves are apparently notoriously difficult to deal with. I know we are all worried about these cervical curves, having seen Lisanna's progress - but I will try to remain positive.

Immy had an mri in November last year (aged 10). She was very nervous but ended up actually enjoying the whole thing. She was not sedated, nor strapped down :eek: She had headphones & listened to a talking book. Unfortunately the CDs were an hour long & the 1st ran out before the scan was over. She was too shy to ask them to put the next one on but it didn't matter as she ended up falling asleep! Yes it was noisy & cold, but nowhere near as bad as I was expecting.

Laura

[jaymes10]

It' been awhile since I've been on. We are going to see Dr.Rivard 4/18 with our 3 daughters Jacqueline 8 (leg length differential) Emma 6 (52 degree thoracic 39 lumbar) and Lexie (20 thoracic 18 lumbar slight leg length differential). Emma had been in Spinecor with Dr. Sanders from Shriner's in Erie with no improvement at 39 thoracic 32 lumbar. He said just to leave her out of brace because she is going to progress anyway and fusion is absolute just a question of when probably at 8 he said. Dr. Rivard thinks thats nonsense and feels he can help her. Has anyone else had this situation? Has anyone from Wisconsin gone there? I would welcome any info on what to expect etc.

[cherylplinder]

Would Dr. Sanders not consider casting? She is so young. Anne has had good luck holding her daughter alternating casting and Spinecor with Dr. Rivard.
Best of luck.
Dr. Koury(sp?) at UAB in Birmingham, Alabama moved from Erie and casts children.
I am confused as to why Dr. Sanders did no casting for her.
Hugs
Cheryl

P.S. Do a search for posts by arairdon. Her daughter is Lauren.
Well.......... I did the search and she has only post on Spinecor thread. I doesn't break it down. But you could send her a PM.

[mariaf]

Hi Jaymes10,

Have you considered vertebral body stapling?

I was about to ask if you had - and then Cheryl mentioned Ann Rairdon. Ann's daughter has an appt. for a consult at Shriners in Philadelphia on 4/24 to see if her daughter is a candidate for the stapling. (My son had it as well four years ago and is doing well). I'm not exactly sure of the circumstances for Ann's daughter, but between the casts and the Spinecor I guess there wasn't much improvement AND as her daughter is getting older (she's 8 or 9) I think they have pretty much had it with both and are seeking a better alternative.

If you are interested in stapling, please visit this website (that's where I saw about Ann's daughter's appt.)

www.vertebralstapling.com

Also, you can check out the VBS Awareness (the link is in my signature). If I read your post correctly, they are considering fusion for your daughter when she is 8?? PLEASE look into the stapling or other alternatives - at her age, even at 52 degrees, she might be a candidate for stapling if she is flexible. Even if she isn't, there are other alternatives to fusing a child so young.

Please feel free to e-mail me and also to contact Janet Cerrone at Shriners in Philadelphia - her contact info is janetcerrone@comcast.net or call 1-800-281-4050 and ask for her. Please do some research here and on the other site I just posted and you'll see that everyone speaks VERY highly of the team in Philadelphia which is led by Dr. Betz. I'm hopeful they can come up with a better alternative for your daughter.

I also have Ann's e-mail address if you'd like it please send me and e-mail or a PM.

Best of luck to you!

[christine2]

To Jaymes10

My daughter was diognosed at 6yrs old with a 33 degree curve. The ortho was very negative about any kind of brace helping her. Then we found Dr. Rivard and Spinecor. Dr. R and Dr C are amazingly compassionate and are truley looking out for the kids. He will tell you how it is. If he thinks he can help, he will tell you, if not he will tell you that as well.

My familiy decided to give it a try with the attitude that we had nothing to loose. As you can see in my signature we have had excellent results.

As far as what to expect perhaps we should PM that so we can get specific. We drive to Montreal it takes us about 7 1/2 hours one way. I try to plan mini vacations each time we go.

[shaes mom]

Hi everyone,

I've been reading these forums for some time. My daughter was diagnosed at age 9 with two 20° curves. She's been being seen by Dr. Braun at NEMC. It's the old "wait and see" game. In December we were told that she was at 16° lumbar and 11° thoracic. Now (last week) she went to 18° lumbar and 18° thoracic. We're considering the Spinecor brace. We've been in touch with Dr. Pappas and Dr. Siq and they have been wonderful!!!! However, we're having problems with the insurance because we have a PPO and they're out of network. Of couse, there's no one (that we know of) in-network. We have Harvard Pilgrim. I'm so mentally exhausted from all of this and time is of the essence.

Does anyone have any advice?

Thanks.

Theresa (Shae's Mom)

[WNCmom]

We also had to go out of network for the SpineCor 6 months ago, but our insurance (Assurant Health) did cover it. Dr. Ouellette in Atlanta fitted the brace, and said his office would help us appeal with the insurance company if there was any problem--but there wasn't. Do you have the code for it? The code we submitted is L1005. Before I submitted it I called the insurance company, told them the code, and asked if they would cover it. They said yes. Are your doctors orthos or chiros? I don't know if docs talk to each other about this, but Dr. Ouellette is very nice and perhaps the folks in his office could offer some advice...contact numbers are at www.scoliosisspecialist.com.

Good luck (and don't forget to breath--this is all exhausting, I know)!

Mary Ellen

[shaes mom]

I believe Dr. Oulette is affiliated with Dr. Pappas and Dr. Siq. My daughter is currently seeing and Ortho in Boston but we are looking into Spinecor. We have Harvard Pilgrim and I was told today that that's the way it is. If it's in-network we're covered up to $2,500 but out of network there's a $500 deductible and then it's covered 80%. The total cost is $4,725 so it's going to be a fairly large chunk of change for us. Thanks for the info on the code. Actually, Dr. Siq did provide me with all of the codes and the insurance company is going to research to see if there's anyone in-network who can provide the brace. I believe I already know that answer - NO. I can't believe we live in BOSTON - with some of the best medical/teaching hospitals and no one here will even think about using Spinecor. Dr. Braun (the Ortho at Tufts/NEMC) didn't even attend the symposium last year that was held right here in BOSTON!!! I'm sick to my stomach.

I heard today though that there are lawyers in Georgia who are now filing a class action suit (I believe) against some doctor's for not allowing patients to use Spinecor. Again, just hearsay. I don't know the specifics. I'm actually going to do some research on it.

Thanks for your support.

Shaes Mom
18T/18L

[nate03]

Hi-
I just wanted to say hello - our son is treated at Boston Children's Hospital by Dr. Hresko and we have been very impressed with his "forward thinking" in regards to treating our son's scoliosis. I do know of another Mom who has a son in spinecor and she recently saw Dr. Hresko (for a 2nd opinion or consult?) and he was very pleased with her son's success recently with the spinecor. I do not take this to mean that he is an "advocate" of spinecor, but if I can touch base with this Mom I will ask her to post here to you their experience.
This is my son's version of why he is thankful to Dr. Hresko:
http://www.youtube.com/watch?v=UuEfsQLkZj4

I wish you and Shae the best of luck!
-Cara

PS We also have Harvard Pilgrim Insurance, and we were very surprised that they did in fact cover 100% of our son's surgery - and I credit Dr. Hresko/Children's Hospital for fighting this for us.

[shaes mom]

I'm sorry to hear your son had to have surgery. That is my biggest fear. I'm sure it was yours as well. I can't imagine going through that. I'm having an awful hard time accepting that there's nothing I can do but wait and see what happens. This scoliosis really bites the big one.

Thank you for all your info. We (my husband and I) actually were at Children's today so we stopped by and asked some questions to one of the spine nurses there. Again, not very helpful. One of the things we heard was "we use the Boston Brace - this is Boston - that's where the Boston brace came from". No, really. Is that all? You can't even research anything else? I'm sorry for ranting. I'm just really fed up with the Boston doctors. They won't give you the time of day. But when I call the Doctors (various ones) at Spinecor centers they are so very helpful. My husband is a Physical Therapist and he's furious.

Any information, advice, comments or whatever else anyone wants to throw my way is welcome and I do appreciate it.

Thanks,

Theresa

[desheah]

hi theresa,

i don't post frequently here (but always read!). i also have harvard pilgrim ppo. we are in massachusetts but go to montreal for our appointments. i have successfully gotten 80% reimbursement of all of our clinic appts and x-rays. they paid the max for durable medical equipment ($2500 at the time). you should have more leeway for going out of network since you have a ppo (versus an hmo). if you would like a copy of the letters and the supportive journal papers that i included in my appeal, i would be happy to e-mail them to you off-board.

my best,
deshea

:o oops -- edited because i didn't read all of the replies! hi cara! cara is referring to me and my son lucas regarding dr. hresko. he does like the spinecor (advocate? probably not since they decided not to continue to use it in boston). he recommended that we continue to go to montreal since they have the best results there. it makes sense since they are the inventors.

i can't remember off the top of my head what i had to pay out at the first visit. i guess in my mind, i was willing since my son is still growing but with the spinecor you don't need to replace it every 6 mos - a year like a rigid boston brace. we still have the same brace that we got almost 2 years ago. much cheaper in the long run than a boston -- dme limits still apply even if you are in network! let me know if you would like any of those documents that i sent in to build your case. ;)

[shaes mom]

Hi Deshea,

Thank you so much for posting. Wow, you've really been going through this for a long time. I hope your son is doing well.

I would greatly appreciate anything you could send me. My email is vartaniant@verizon.net. I am so frustrated dealing with this insurance company I'm an emotional wreck right now. All I do is cry because I know that after having her thoracic curve get 7° worse in 4 mos. she's probably getting worse every day. I know I have to get this done quickly.

Do you like going to Montreal? Do you see Drs. Rivard and Coilliard? How long is the drive? The doctors in NY have Sunday appointments and we could take the Acela train which is 3 1/2 hrs. I've read good things about Drs. Pappas and Siq. and they were extremely helpful over the phone. I know they've been doing it a long time as well. Was there a specific reason why you didn't go there? Harvard Pilgrim still covers $2,500 for the bracing. The only thing is they told me they're not sure if they cover the Spinecor brace. I'm waiting for a call back from them. Was the process long and difficult dealing with appeals? Did you just go ahead and get the brace and deal with the insurance after?

You've already been a great help and given me a little encouragement to get me through the rest of the day. I can't tell you how much I appreciate it.

Thanks again for the info.

Theresa (Shae's Mom)

[desheah]

i will e-mail you the letters that we sent when i get home. i'm at work right now and don't have the first set of appeals that we did. harvard is pulling your leg about not paying for the spinecor since they paid for us to have it. i realize now that every time i put in a claim, i have dr. rivard write a letter describing what was done so that it is complete. actually, i write the letter and all he has to do is sign it. :p i'm tired of putting in 2 sets of claims if i don't have all my i's dotted they won't even look at it and just send it back rejected. it seems like they never have my previous one on hand. it's as if they don't even look back at lucas' history. my advice is just persevere with the insurance, and you will win. oh yeah, i had called hphc 2 times before going to montreal the first time. they kept saying that we didn't need pre-approval before going and just put in the claim when i got back. yeah, right. still had to fight, but i'm not bitter :mad:

the reason that we go to montreal is because lucas is so young. at the time of his getting the brace, he was the smallest to be fitted (4 1/2 yrs old and on the small side). i felt most comfortable going to the inventors. previously for casting, we were going to erie pa shriners. they actually prescribe the spinecor. since montreal is closer, these orthos have the longest experience, and we have family in vermont to stay with, montreal won out. i had contacted dr. deutchman in nyc initially but decided against going to a chiro. plus, he was much more expensive!

fyi -- Drs. Pappas and Siq are actually chiropractors. i'm not saying anything against that, but just so you know, they are not orthopaedists. this is very common in the us. for some reason the chiro community has embraced the spinecor but not the orthos. it's very fustrating.

my best,
deshea

p.s. lucas is a wonderful kid. what is really nice about this brace is that he can be a normal active child without his scoliosis being the first thing that everyone notices.

[christine2]

Hi Theresa

We also chose to go to Montreal over the others closer to us. Dr D in NY was sooo expensive. Plus we wanted the experience of Dr Rivard and Dr Coillard. We are very pleased. We just went and delt with insurance later. After hearing the $ in NY, Montreal was a cake walk even if insurance was a problem which it was not. We also get 80% and our Durable Medical. We have Blue Cross and they have been excellent.

The good thing about Dr Rivard is he will give his honest opinion as to how he thinks the Spinecor will work for your case. He is not in it all for $. He wants the brace to succeed. He will not just drag you along if he does not think your child is a good canidate.

[jillw]

Hi , we just got back from Montreal. Katie's curves measured 6T/3L.

I haven't even begun to deal with the insurance hassle as I have been way too busy. Deshea, would you mind letting me see the letters you have used to get covereage?

Christine, we have a form of Blue Cross (empire). I know even within blue cross the plans are all different, but I would LOVE to get some coverage. I might not be eligible in general since her pre braced curves were 19 degrees and I believe my insurance requires 20 degree curve to cover bracing (even if a Boston brace).

Deshea/Christine, Even if I could get the xrays and clinic covered it would be helpful....but I don't even know where to start...the receipts we get from the hospital are hand written, in french, and abbreviated. I don't even know what they say so I'm not sure how the insurance company would. Are those little hand written receipts what you use in the packages you submit to them? Any tips?
Thanks! Jill

[christine2]

Hi Jill

Congrats on a wonderfull appt, It's party time.

My husband handled the insurances forms, I will pick his brain ASAP. I will say that it did not seem hard. And yes we did submit Dr Rivards hand written forms. I would be TRUELY DISSAPPOINTED in the insurance industry if they won't cover a 19 degree curve!!!! If that is the case I may have found a new soap box!!!

[emarismom]

Jill,

That is great news about Katie's curves!! You must be so excited!!

As for the insurance issues, I have Blue Cross PPO (government plan). I didn't get a pre approval, just went and did it and later submitted the paperwork. It took me ten months of constantly calling the insurance company, submitting and resubmitting the forms and appeals, but finally, about three weeks ago we recieved a check (YEAH!!). They did not cover the full price of the brace, but they did pay the $2500 durable medical equipment and the xrays and initial chiropractic visit. I'm happy with that.

The thing that you have to do is be very persistent with the insurance companies. If they have coverage for DME, then as I understand it, they have to pay for the brace. They just know that if they drag out the process, many people will get tired and stop trying to get reimbursed.

[christine2]

Hi Jill

I spoke to my husband and he said that he just submitted the forms and paperwork from Dr Rivard, no problem. But as Emilys mom said, be persistant!!

[shaes mom]

Thank you Deshea. Maybe Montreal is a better answer. I will discuss it with my husband tonight. Thank you (in advance) for sending along your information to me. I will call HP tomorrow loaded with information for my case.

I'm glad Lucas is active. That's one of the main reasons I want Shae to be in Spinecor. She is very active in dance, gymnastics and will testing soon for her black belt in Tae Kwon Do. It would be very difficult for her to do any of that with a hard brace. I'd also be worried about the psychological aspects of a hard brace (teasing, clothing (she's very into clothes at 11).

I look forward to receiving your letters. I'm starting to feel better.

Theresa

[jillw]

Theresa, Hello and Welcome. When I posted earlier I didn't have time so I didn't say "hi". We are in very similar circumstances to you other than the fact that my daughter is younger. We take her to Montreal for treatment also. As you can guess from my previous posts, I just wanted to get the ball moving so we didn't deal with insurance issues and were prepared to pay out of pocket if need be (although now I'm ready to try and get some of it back!)

Our concerns were similar to yours and I dreaded the restrictions of movement that a hard brace would cause. My daughter does all her dance, soccer, and other activities with the spinecor on because it is flexible so she doesn't have to allocate precious out of brace time to choosing what limited activities there would be time for. Like your daughter, Katie has smallish curves which makes her an "ideal" candidate for spinecor. Like you, we want to avoid spinal fusion surgery at all costs (incidentally, the surgery that Cara's son Nate, above, had was vertebral stapling surgery aka VBS. That surgery is more of a replacement for bracing...like an internal brace. It allows the spine to remain flexible and hopefully will keep the need for fusion surgery at bay. However even if fusion surgery is required down the line, the parents feel that all the years of brace free life are worth it. The surgery is much less draconian than fusion surgery and the recovery is much faster. So in this case, Nates surgery and his results are a good thing! :) They wouldn't do the surgery on my daughter yet since her out of brace curves are a still a little too small, but I do view it as a backup if her curves progress despite spinecor bracing. Just nice to know that although spinecor and vbs are considered experimental by many, that there are some options out there)
Good luck with your decision making!!!!

Christine and emaris, thanks! I know it falls within the margin of error for xrays, but I would have preferred that the curve didn't increase at all! Hopefully its an anomaly and will go down a degree or two the next appointment. If not, I'll be afraid that it represents a trend in the wrong direction! I'm going to worry myself old and haggard over this...I think I'm doing better with accepting what is going on and then the appointment comes and I'm nearly hyperventilating from nerves and my muscles are all so tight it almost feels like I'm having a heart attack or something. I can see this cycle repeating over and over again over the next 9 years or so!

[desheah]

jill,

congrats on katie's appt! great numbers. don't have much time before dinner, but i don't think that i have your e-mail address. do you have mine to e-mail off-board? if not, i will send you a pm through nsf. i would be happy to send the info along . . .

thanks,
deshea

[christine2]

Jill

I also have had anxiety issues. For a while I would almost feel like I was having "anxiety attacks" my heart would race and the stress was overwhelming. It does get easier. If you look at my signature you will also see small fluctuations in my daughters numbers. I think that is to be expected.

I have looked at VBS as well, right now my daughters results from Spinecor are outstanding and there is no need for surgery. However if things start to change it may be an option for us, my daughter is still a good canidate.

[txmarinemom]

I'm sorry to hear your son had to have surgery. That is my biggest fear. I'm sure it was yours as well. I can't imagine going through that.

Theresa, I think you have VBS confused with fusion surgery. The two have virtually nothing in common. I think I can safely speak for Cara when I say that while she'd rather Nathan have required no surgery at all, VBS freed him from any kind of brace.

Not only that, Nate has continued to achieve correction - and is thriving.


We (my husband and I) actually were at Children's today so we stopped by and asked some questions to one of the spine nurses there. Again, not very helpful. One of the things we heard was "we use the Boston Brace - this is Boston - that's where the Boston brace came from".

No, really. Is that all? You can't even research anything else? I'm sorry for ranting. I'm just really fed up with the Boston doctors. They won't give you the time of day. But when I call the Doctors (various ones) at Spinecor centers they are so very helpful. My husband is a Physical Therapist and he's furious.

Any information, advice, comments or whatever else anyone wants to throw my way is welcome and I do appreciate it.

You invited comments, so here goes ...

In all my years (about 30 now) of dealing with scoliosis, I've never heard of a "spine nurse" ... nor can I imagine any competent medical professional pushing a brace simply because of its development locale. What exactly *is* a "spine nurse", Theresa, and why would you ask a nurse about your child's treatment?

The "doctors" that normally prescribe Spinecor are chiros, not orthos. Few orthos (SRS or otherwise), including mine, prescribe Spinecor because they aren't satisfied with the results. My surgeon *has* prescribed it in a few cases because the parents insisted (and he has a good orthotist here in town). Not ONE of those treatments were successful.

Maybe *that* gives you an idea why orthos don't give it much consideration.

Look through this thread (the last few months in particular) and see just how many kids have advanced from treatable (via VBS) curves to curves that "suddenly" jump to fusion degree levels because they're almost always x-rayed in-brace.

Orthos using ANY OTHER bracing system require a mandatory 24-48 hour UNbraced period for a reason ... to get a true and accurate Cobb. It takes that long for the body to relax to normal posture.

I'm not sure why your husband's profession is relevant, but perhaps you could explain?

Regards,
Pam

[mariaf]

Orthos using ANY OTHER bracing system require a mandatory 24-48 hour UNbraced period for a reason ... to get a true and accurate Cobb. It takes that long for the body to relax to normal posture.


I just wanted to say that I specifically asked Dr. Betz once why he requires kids be out of brace for 24 hours prior to x-ray and that's EXACTLY what he told me.

He said that x-raying the spine within the first 24 hours of taking a brace off could be "masking" a true reading because it takes 24 hours at least for the muscles to return to their normal positions.

I honestly never understood why the Spinecor prescribers do "in brace" x-rays - and I do have to wonder if, in some cases, that practice wasn't in fact "masking" progression. I'm referring to the cases Pam cited where the curves "appeared" to be holding for some time while in-brace x-rays were being taken - and then all of a sudden there was a big jump in numbers.

Just my thoughts................

[flowerpower]

Can't work the quote thing right, was trying to quote txmarinemom:

(QUOTE) In all my years (about 30 now) of dealing with scoliosis, I've never heard of a "spine nurse" ... nor can I imagine any competent medical professional pushing a brace simply because of its development locale. What exactly *is* a "spine nurse", Theresa, and why would you ask a nurse about your child's treatment?[/QUOTE]

My son's surgeon has a highly qualified nurse who is his Scoliosis/Surgical Coordinator. She is involved and very knowledgeable in all aspects of treatment, from bracing to surgery. She assists the dr. at each appt. throughout the day. She takes patients on a hospital tour prior to surgery and can explain everything from checking in to what takes place during surgery, & recovery. She attends conferences, seminars, etc. specific to scoliosis and keeps up to date with latest developments & treatments. I, as do other moms of patients, feel very comfortable asking her "general" questions. Any specific questions regarding my sons treatment, recovery, restrictions, etc. she will forward to dr. and have him answer.

It sounded to me like Theresa was merely making an inquiry to the nurses as to whether there were optional treatments available at the hospital, not questioning the nurse about her childs treatment, but maybe I missed something.

I would like to add though, that I agree with Maria and Pam's thoughts on in-brace x-rays.

Renee

[RugbyLaura]

I'm really sorry forum - I had promised to try to ignore negative comments but find myself unable to do so in the face of such biased (and frankly ridiculous) criticism.

A lot of children in this group with juvenile scoliosis are doing remarkably well. There are medically documented cases where curves have completely resolved and these children have remained scoliosis free 5 years post weaning .Unfortunately the wheels of change are slow when it comes to orthopaedics and many of these doctors are old and set in their ways.

I do not consider the spinecor brace an *experimental* brace! It has been around for the past 25 years unlike vertebral stapling which has been around for 5 short years. Many of the children who were wearing the spinecor and later progressed to surgery were fitted with the brace when their curves were already in the advanced stages of 40 degrees or more. The articles on vertebral stapling are riddled with inaccuracies and inconsistencies. I am dismayed that many of the parents who are advocating vertebral stapling have only had the procedure for a few short months or slightly more than a year and consequently it is difficult to assess whether in fact the procedure is a viable alternative to “spinal fusion” Granted Maria’s son is holding steady at 30 degrees and I sincerely hope he does well, but many would deem such a level of scoliosis moderate! There is no guarantee that children who undergo vertebral stapling will not require more surgery at a later date. They will end up with more metal in their backs. A better word for these staples would be sharp prongs! What if one of these prongs migrates to the aorta?
Why would parents willingly undergo a procedure that gives them no legal recourse in the event that something goes terribly wrong? By virtue of the fact that it’s experimental, gives medicos unlimited powers. There is no way vertebral stapling can in any way shape or form be a substitute for the Spinecor. I sincerely hope that vertebral stapling proponents take their bitterness/hostilities elsewhere and allow those who choose this non surgical alternative......peace!

Please do not be influenced by the opinion of a woman inexplicably biased against an excellent option for the treatment of Scoliosis. I find her behaviour quite sickening - why is she out to put people off this successful treatment?

[shaes mom]

To txmarine mom:

You seem to be very much on the defensive.

To you first question I referred to "surgery" because that is how Cara worded it.

PS We also have Harvard Pilgrim Insurance, and we were very surprised that they did in fact cover 100% of our son's surgery - and I credit Dr. Hresko/Children's Hospital for fighting this for us.

You're absolutely right, I don't know the difference between stapling and surgery. I do know about the surgery but I don't know about stapling. I am fairly new to all of this and that is why I asked for comments and suggestions. Any choice anyone makes for their loved ones is their decision and I believe it's the right one for them. I didn't mean to offend anyone. All I'm trying to say is that's it's been a huge blow to me (even though I know I'm just starting out) and I can empathize with everyone here and all their circumstances. Any procedure (whether it stapling or surgery or whether for good or bad) is scary to me, that's all I meant.

As to your 2nd question about the "spine nurse". My husband and I stopped by the Orthopaedic Dept. of Children's just to inquire if any of the doctor's were knowledgeable with the Spinecor brace and if they used it. We were referred to what they called a "spine nurse" (one of the nurse's that works with the doctors in the department - kind of self explanatory I think but I guess I can't assume anything).

Lastly, you inquire what my husband's "profession" has to do with it. This, I'm sorry, I'm really taking offense to. My husband's title is "Clinical Specialist of Education and Professional Development of Rehab at New England Baptist Hospital which is one of the leading orthpaedic hospitals. He understands physiology which is why it is relevant. The world, as we all now know, isn't flat.

I'm not here for arguments. What my husband and I choose to do for our daughter is our business and what WE feel is right for her. Yes, I asked for comments and suggestions. What I really meant was "helpful" comments and suggestions. We're going through enough right now without having to deal with negative attitudes such as yours. Please don't respond as I don't have the energy to deal with people like you.

Shae's Mom

[desheah]

theresa,

i promise an e-mail tonight about those letters sent to hphc. last night was crazy here.

also i would like to say that as a newer parent coming on the board to ask questions and invite comments, perhaps the tone should be a bit more welcoming. her daughter isn't even being treated yet with a brace and she is looking into the options -- of course, vbs is one but not for a child with an 18 degree curve. let's give everyone who comes on here for support a little time to ask their questions.

my best,
deshea

[shaes mom]

Thank you Flower Power for understanding what I was writing. That's all we were doing, INQUIRING. It seems like some people are just waiting by their computers to pounce on you for everything you state. We need more positive here and need the support of each other, whatever one decides to do.

Shae's Mom

[RugbyLaura]

shaes mom, I'm so sorry not to have welcomed you sooner. I felt that I had no useful input for you as we're in the UK. I wish your daughter all the very best with her Scoliosis journey!

My daughter has been wearing the Spinecor brace for 9 months now & I am happy to answer any questions you have.

Laura

Edited just to say that in the UK we do not (generally) use medical insurance.

[shaes mom]

Deshea,

I understand completely, don't worry about it. In addition to scoliosis we all have busy lives. I can appreciate that. Actually I was so exhausted today that I didn't deal with any of it. I will make my calls tomorrow.

I can't tell you, especially after what's been posted to me today, how much I appreciate your support. With one exception everyone has been terrific and extremely supportive. I truly only mean well and I sincerely hope I haven't offended anyone. It is not my intention. Every child is a gift and my heart doesn't ache for just mine, but all of them. I truly hope that some day soon they will come up with something that works for everyone and we can all be on the same harmonious page.

Take care,

Theresa

[shaes mom]

Rugby Laura,

Thank you so much for your support. I was surprised when I logged on today to face what I faced. I would love to hear about your experiences with the brace. The way my husband and I figure it, what have we got to lose. She's at 18° now and they won't hard brace until 25° so why not try it. I don't understand why after the favorable reports that were published in the Orthopaedic Journal that it's not catching on faster. Can you give me a summary of what your experience has been like?

Thanks,

Theresa

[shaes mom]

Jill,

I'm sorry I haven't posted to you. Thank you for welcoming me yesterday. I thought I had posted (or I did have the intention of) to you yesterday. I'm having a little bit of difficulty getting around these boards. I'm learning a little bit at a time here.

Thank you for sharing some of your story. I'm glad your daughter is doing well and remains active. Also, thank you for the information on the stapling. In fact, thank you for explaining it to me rather than berating me for not knowing what it was. I had seen it mentioned before and I don't know why, but I hadn't researched it. I guess I've been so focused on just the bracing for now but if it's an alternative to fusion surgery it sounds better to me now.

By the way, since my husband does work with a lot of adult scoliosis patients (not pediatrics) he has been sharing with me some of the psycological problems they have. I will (as I am sure all of you would) climb to the ends of the earth to avoid that. My husband's cousin had the Harrington rods inserted when she was a teenager. She had to move to Hawaii (probably 20 years ago) because the cold just killed her back. She's has had more problems in her adult life because of it.

[RugbyLaura]

Theresa, I'm off to bed now but will give you a run down on our experience tomorrow. When I first discovered this forum - over a year ago - I spent many nights reading this whole thread & taking notes. I still get confused over who is who! Yes, we have had some very sad high profile "failures", but these children's curves were high when treatment with Spinecor commenced. My daughter is in this category too and I have always stated that I do not expect her to avoid surgery - but I am confident that we are doing our very best for her. Your daughter has a much better chance of avoiding surgery. The hostility that Spinecor generates in some people is hard to understand...

I'm rambling again - must go to bed!! "Speak" tomorrow....

Laura

[shaes mom]

Does anyone who goes to Montreal for Spinecor know what the prices there are? The brace, fitting, appt. x-rays, etc.?

Theresa

[pat]

Does anyone who goes to Montreal for Spinecor know what the prices there are? The brace, fitting, appt. x-rays, etc.?

Theresa

We've been going to Montreal since our daughter was diagnosed with a 21/17 curve over 2-1/2 years ago. She's been holding consistently with a "6, and gained over 4 inches in height. The cost of brace is $3,000, x-rays are about $325.00, and Drs. Rivard and Colliard's fee, I believe, is $80.

We've been very pleased with our visits to Montreal and with the Spinecor Brace.
p

[christine2]

Theresa

I just want to tell you that I have learned about so many treatment options at this forum. This is were I first found out about Spinecor. The people here steered me in the right directions and answered all of my questions. The parents here a GREAT source of GOOD information

HI Pat!!!!

[pat]

Hi Christine!!!
p

[shaes mom]

Pat,

Thanks for the info. Was that $3,000 2 1/2 years ago or is it currently $3,000? Do you happen to know?

[txmarinemom]

Do what you think is best for your kids. RugbyLaura, there's something very laughable about your claim of "hostilities", and it involves a kettle and a pot.

Again, Laura, you are in the UK - and maybe like the Canadians - your doctors consider Spinecor viable. That is not the case in the States, - and the proof for both the UK and Canada is that they have NO IDEA on whom it works. I find it funny only ONE person snapped to how in-brace x-rays skew results ...

Theresa, you *should* research the difference between VBS and fusion before you speak on either. Additionally, if your husband can TREAT your child's scoli, his profession matters. If not, he's simply a parent, and he could be a janitor for all it matters.

You jumped in with both feet criticizing a facility that prefers a method (VBS) that's demonstrated far more success than Spinecor. Again, despite all your backup voices, ASK yourself why orthos in the US don't rx Spinecor.

Laura, I thought you said something about "I shan't post again.". *sigh (no such luck)

[shaes mom]

txmarine mom,

Do you know how many private messages I've received telling me what an A__ you are!!!!

Now I know why you have the title you do. You're giving the marines a bad name.

I didn't criticize anything. And I wasn't speaking on VSB either. Where do you get off saying that?

What gives you the right to criticize everything everyone else says on here. Why don't you mind your F'n business. You obviously haven't done your research. Have you read the Orthopaedic Journal's study on Spinecor?

What the hell do you care if I take MY daughter for a Spinecor brace or not?

[txmarinemom]

Oh, Good LORD. You're certainly under the tutelage of the experts.

And anyone who resorts to "You give the Marines (yeah, along with all the OTHER things you don't know, it's CAPITALIZED) a bad name ..."

... you're in the right peer group, sugar. Carry on.

[shaes mom]

You know, I was just waiting to see if you'd berate me on my typos.

So you know what, you have a nice day and a nice life. Boy, it's only taken me 1 day (not even) to figure you out.

Bye-bye

[txmarinemom]

I'm entirely sure it was a typo. Just like surgery is surgery.

Again, carry on ... feel free to call me what you will, sweetheart. You're only upsetting yourself. Just drop it if you don't have anything to say.

[christine2]

Theresa

Just ignore all of this garbage and it will go away. Remember your task is to get information. This is a place where other parents are in the same boat as you and you need all the info you can get to make the best decision for your child. I also have been in the "hot seat" as you are now. My suggestion is to let everyone else bicker around you and just focus on your issues.

I am not sure if the $ of spinecor is still the same. Dr Rivard is good at returning calls and E Mails. Have you spoken to him yet?

[desheah]

theresa,

did you get my e-mail? it was heavily laden with attachments so i hope it went through okay.

deshea

[rtremb]

Jill - great news.
------------------
We bought the Spinecor for our daughter, Esme, last November and it was $3,100.00 Canadian including an extra Spinecor suit (worn under the brace). We are Canadian so didn't have to pay the professional fee for Dr. Rivard or for the x-rays.

The brace didn't work for our daughter but her curves were in the 50's when we found out about it and went to get it. I really believe it has a good chance of working on smaller curves. Dr. Rivard was very clear with us though that there are some curves that nothing will stop.

We see Esme's orthopaedic doctor next Monday to discuss surgery. Not looking forward to this! We are still "surgically reluctant"!

She had a rolfing treatment today and again Miranda made her back look great. Too bad the x-rays are telling a different story...

Ruth

[mariaf]

I do not consider the spinecor brace an *experimental* brace! It has been around for the past 25 years unlike vertebral stapling which has been around for 5 short years.

Where is the long-term data on Spinecor (25 years). I genuinely would be interested in seeing it.

[mariaf]

The articles on vertebral stapling are riddled with inaccuracies and inconsistencies. I am dismayed that many of the parents who are advocating vertebral stapling have only had the procedure for a few short months or slightly more than a year and consequently it is difficult to assess whether in fact the procedure is a viable alternative to “spinal fusion” Granted Maria’s son is holding steady at 30 degrees and I sincerely hope he does well, but many would deem such a level of scoliosis moderate! There is no guarantee that children who undergo vertebral stapling will not require more surgery at a later date. They will end up with more metal in their backs. A better word for these staples would be sharp prongs! What if one of these prongs migrates to the aorta?

You say the articles on VBS are riddled with inaccuracies and inconsistencies. If you care to point these out, I will present them to Dr. Betz for his explanation. You keep stating things like Spinecor has been used for 25 years, etc. but PROVIDE NO PROOF OF WHAT YOU SAY.

I'm not sure what you were getting at when you pointed out that my son's curve is "moderate". He started out at 40 and is now at 30 in the four years since VBS will improvement in his rotation as well. Prior to that he had been braced for a few years, with no improvement but the brace was apparently holding him. I believe, as virtually all orthos in this country do, that no brace will CORRECT a curve.

As far as kids who get VBS POSSIBLY needing more surgery later on, based on the past seven or so years (and many kids have reached skeletal maturity), I suppose a very small percentage will. But what about the kids for whom VBS PREVENTS fusion?

To your comment about a staple migrating to the aorta, the staples are not just "hanging" there. The bone actually grows around the edges of the staples. So, then what about a child with HOOKS, etc. from fusion - could these in your opinion migrate to the aorta as well. That was just a comment that would better have been kept in your head. Don't you think parents, prior to VBS or fusion or VEPTR CONSIDER ALL THESE THINGS??? Most surgeries have risks. You say that one person is against Spinecor.....Me thinks one person is against VBS - which is FINE - that's your choice - but don't beat up on someone else for having an opinion that is NOT favorable of Spinecor - shouldn't the same rules apply to everyone???? or are only certain people allowed to voice their opinions???

[Susie*Bee]

It's interesting that there are so many different ideas on scoliosis treatment in kids... but not surprising. We have seen how varied our doctors are in other areas as well. This forum is for support and information-- or at least that is what I thought. So let's try to keep our emotions at bay, and just "state the facts" and information as best we can, without resorting to written "shouting matches"... I know when something is near and dear to us, our emotions can be ready to burst open with the slight provocation. It's good to share, good to see different ideas of treatment, and even good to have constructive (helpful) criticism, but presented in a caring manner. We can all do that if we try.

[RugbyLaura]

Theresa,

I don't know how far back you've gone when reading this thread... You don't have to go terribly far back to see that until recently this was a wonderfully supportive and pleasant place to be 100% of the time. When Imogen was first diagnosed I spent most of my time here; it seemed that no-one else knew what we were going through. Yes, AIS is reasonably "common" but very few people you meet in everyday life have experience of Juvenile Scoliosis.

I will tell you our complete Scoliosis story (to date) as I find it theraputic to go through it all occasionally. Also because I find each story facinating so can only assume that (some) others may be interested in ours. Feel free to skip it if you're short of time!

When Imogen was 7 her gymnastics coach pointed out that she was unable to do a japana (sit with legs apart & put chest on floor). The coach said that this was because she had Scoliosis and that she (the coach) knew this because she had Scoliosis herself. I (much to my embarassment and guilt) was very casual about the whole thing, in part because of the casual way in which it was said and also because the coach was (is) a beautiful apparently physically flawless and talented gymnast. She introduced me to another coach with Scoliosis; they both appeared to be totally "normal" apart from slight physical anomilies - one had no "in" at her waist on the left & the other I can't even remember. Anyway, suffice to say that I thought nothing more of it for a year.

When Immy was 8 I began to notice that she looked twisted when she did some stretches. I had a quick look on the internet & thought "Hummm, perhaps I need to look into this!" So made an appointment with the GP. GP = General Practitioner, or family doctor in the UK. This Gp stated that Immy had "a slight asymmetry of the spine" and that "We're all asymmetrical to some degree." She told me that there was nothing to worry about & to go home & take some photographs so that we could monitor the situation ourselves. This was a young child with an obvious rib hump - I was not impressed!! I insisted on a referral & was made to feel like a fussing mother.

We were referred to a General Orthoaedic Consultant Surgeon, he was not a Scoliosis specialist; I was not aware that there were any at this stage or I would have insisted on one & saved some time. This Consultant examined Immy & agreed that she had Scoliosis, this was some months later & Imogen was now 9. He sent her for x-rays & wrote to us - after an alarming amount of time - to say that her curve measured 28 degrees and that he would see her again in a YEAR!! The man obviously knew NOTHING about Juvenile Scoliosis & was treating her as an adolescent! I instisted on an ealier appointment and a referral to a Scoliosis specialist. More time ticked by........

We saw a specialist - a bigwig in Scoliosis in the UK. He said that she had Juvenile Scoliosis & that bracing was generally considered to be a waste of time. He said he needed new xrays as the original ones did not show the whole spine & therefore he could not measure the curve.

More time.... xray appointment.

More time.... Back to the bigwig.

Going by our first appointment with him we were expecting him to say he'd wait & watch & to come back in 4-6 months. He actually did an about face & said that her curve measured 32 degrees & that he wanted to get her into a brace asap. Our jaws hit the floor & I spent the next 2 weeks in tears. asap turned out to be 3 months!!

During this time I discovered this forum and the Spinecor brace in particular. I "stalked" the founder of this thread & found out all I could about both the rigid brace & Spinecor.

When we finally got her Spinecor brace Immy's curve was measured at 38 degrees; it had progressed by 10 degrees in 6 months and was approaching surgery level (40 degrees generally accepted in the UK). Had we stuck with the first guy we would still be 7 months away from her next appointment.

That's the end of chapter one folks. Sorry to be so self-indulgent, hope I haven't bored the pants off you & that there are not too many typos (haven't the time to proof-read). Next installment - Our Spinecor experience will follow... (Of no! Not more!!)

Laura xx

[amandap]

Hi Theresa,

First of all welcome to NSF you really will find tons of helpful info from parents all over the globe who have a much knowledge on various different treatment options. Unfortunately there has been much debate and things do tend to get heated based on individual treatment choices. As parents we are all forced to make choices and we all do what we feel is best for our child.

I personally do not know a whole lot about spinecore and what insurance may or may not cover and who is best suited to presibe the brace for your child I can say that I would probably see an orthopedist for treatment before seeing a chiropractor (just my biased opinion here).

The one thing that does concern me about spinecor is the fact they do not do out of brace x-rays regularly which can lead parents to gain false hope about correction. My daugther wore a milwaukee brace for 6 months she was braced when her curve reached 42*. Her in brace x-rays were always great 18*, 20*, 17* which is good but it's not a permanent correction her out of brace x-rays (usually out of brace 24-48 hours) were right back to 42* no change which only meant that brace was holding her curve which is what a brace is suppossed to do ~ to date I know of no brace that will actually correct a curve long term when the brace comes off the curves go right back to where they were before. So please keep this in mind when making your decision and please seek numerous consultations each orthopedist you see will probably give you different treatment options.

Personally we chose to move forward with VBS (Vertebral Body Stapling) which is a surgical procedure. It has only been done for the last 7 almost 8 years and while the initial data was somewhat skewed with a number of faliures that has changed in recent years due primarily to the fact that the criteria for being a candidate has changed. Before the procedure was done on several children who had underlying medical conditions that contributed to their scoliois and they were also stapling much higher curves ~ obviously that did not work. The criteria now is a bit different and they only staple children who have idopathic scoliosis and they normally don't staple children with curves greater than 45* there must also be considerable growth remaining along with spine flexibility.

Our situation was very simple we had a 5 yr old daughter with a 42* curve the orthos we saw all told us the same thing ~ she would wear her brace 23/7 for the next 8-10 yrs and hope that her curve did not progress beyond 50* prior to puberty otherwise she'd have to have growth rods therefore requiring surgery every 6 months to expand the rods and of course best case scenerio was that the brace would hold her curve through puberty at which point she'd be fused. VBS gave us an alternative treatment (of course there are no guarantees) with staples applied to the convex (outer) side of the curve applying pressure to the growth plate to slow or stop curve progression. The added positive to this is that while growth is being slowed on the one side this allows the other side to possibly catch up over time and the curve itself is corrected. It is essentially an internal brace worn 24 hours a day 7 days a week VBS is not an alternative to fusion it is mearly an alternative form of bracing. My daughter is almost 2 years post op and doing great thus far, her initial 42* curve was corrected down to 26* and since then she's had about 5" of growth and the curve at her last appt in December 2007 was still at 26* at this point even if she does not correct at all the doctors wouldn't even think of fusing her on the other hand should the staples not hold her curve and she does end up being fused when she's 15 or 16 well at least she got to that point brace free and was able to grow up perfectly normal with no restrictions which in our opinion still means VBS was a success. That is another point I failed to mention with the staples the child's spine remains completely flexible and there are no restrictions kiddos can still do whatever they did prior to surgery.

Your daughter only has an 18* curve so you still have plenty of time to research and get multiple opinions there is no need to rush. If you'd like more info on VBS please feel free to visit the parent created website www.vertebralstapling.com from there you can access the list of doctors around the US who are now doing VBS as well as more info, you can read a few stories about children who have undergone VBS and you can also access the discussion forum from there. We live in Texas but travel to Philly for our daughters medical care at Shriners Hospital. Also feel free to email me if you prefer domingo_amandapompa@msn.com.

Please don't feel like I am trying to persuade your opinion, I am only giving you an alternative treatment option and explain what VBS is.

Like I said you will find this site to be extremely beneficial to you.

Good Luck ~ Amanda

[desheah]

since i was curious, i went to pubmed to see what was the first article published about the spinecor brace. here it is:

Ann Chir. 1999;53(8):781-91.Links
[Reductibility of idiopathic scoliosis during orthopedic treatment]
[Article in French]

Coillard C, Leroux MA, Zabjek KF, Rivard CH.

Département de Chirurgie, Faculté de Médecine, Université de Montréal, Hôpital Sainte-Justine, Québec, Canada.

Non-operative treatment of idiopathic scoliosis is long and difficult. For the patient and the therapist it is particularly important to define early the therapeutic prognosis. The goal of this study is to verify if the initial reducibility at the beginning of treatment with the dynamic corrective brace (Spinecor) would be valid as a prognostic factor, allowing a more effective prognostic judgement of the final outcome treatment. This is a prospective study which includes 99 scoliosis patients (88 female, 11 male), with a mean age of new 12.6 years, treated by the dynamic corrective brace for progressive idiopathic scoliosis curves (29 degrees mean Cobb angle). The initial Cobb angle was compared to the pre-therapeutic Cobb angle. The results demonstrate that the reducibility of the scoliotic curves with the brace at the beginning of treatment provides a significant global prognostic index but is difficult to apply individually. Other factors should be considered, such as the impact of growth velocity on the spinal deformity at the onset of the adolescent growth spent as well as vertebral deformities diagnosed around the apex.
_________________________________________________


i don't have access to this article (nor do i speak french so i couldn't even translate it if i could get it!).

the more definitive article wasn't published until 2003 and more recently last year in 2007 it was compared side by side to the providence night-time brace under the srs new standardized criteria.

if anyone wants copies of these other articles, i would be more than happy to send them along by pdf if you send me a private message through nsf with your e-mail address.

fyi,
deshea

[Sherie]

Hello all

About in-brace xrays, it's my understanding that in-brace xrays are required to see how much correction is being achieved, 50% is desired in order to hold the curve. Am I way off base here?

I do agree that being out of the brace for >24 hours is desirable for out of brace xrays. My daughter had a 10 deg. difference in out of brace xrays taken immediately after and one week after. Don't let them xray your child if they've just taken the brace off, that's uneccessary exposure.

As far as trying different treatment options, that's only something the parents can determine, it's their child and ultimately, they're the ones who have to live with their decision. While so far, my daughter is ok, I would have done anything (and did try many treatments) to prevent fusion surgery, it's final and irreversable. Having a long fusion will impact her life and I still can't say I'm happy about it. I will always have an extra degree of worry, but maybe that's just me.

In my opinion, this forum should be a place where we can share our experiences, be it good or bad, so that others can make their own informed choices. We should not be criticizing anyone's decision, that's very personal and we already feel enough guilt over what our child's going through. I've been criticized in the past over some of my choices and it really hurt. I hate that there is so much bickering lately because this used to be such a great place to find support and comfort.

Best wishes to all and let's all be hopeful that whatever treatments we choose, that they will be successful for the kids, it's about them after all.

[flowerpower]

Well said, Sherie.

Renee

[WNCmom]

Just to add some of my experience with SpineCor: My 12 yo son had a 45T curve and complensating L curve after being in a Boston brace for 6 months--he progressed during that time (a growth spurt). Our ped. ortho at a teaching hospital in Chapel Hill NC didn't tell us about SpineCor or anything else, including VBS, and wasn't even very enthusiastic about bracing, but I think he felt he had to do it.

I wish we had known about SpineCor when the curve was 30-35! When it reached 45, our ortho essentially told us there wasn't anything more to do but watch and wait and wear the brace and pray. So, I found this forum, did some research, and we decided to go for it. The closest provider who fit the SpineCor brace was a chiro in Atlanta. He was clear with us that chances of stopping or reducing it were about 50/50 with such an advanced curve. We felt we had nothing to lose (and still didn't know much about VBS) at that time, so we switched. Sidney's curve has progressed some over the last 6 months. In May we are going to try intensive therapy to see if we can reduce it. If it works, we will consider VBS if he is eligible. Our short term goal is to delay fusion at least until he stops growing--we anticipate he has a foot more to grow.

Would the curve be larger if he wasn't wearing Spinecor? We'll never know. But if he had been put in Spinecor 18 months ago when we discovered the scoliosis, I believe there would have been a much greater chance of reducing the curve, and it might be smaller now. If I could do it over, knowing what I know now I would have used Spinecor first.

As for in-brace x-rays for SpineCor, my understanding has always been that if the curve progresses, it will show up on the x-ray in-brace. That has been our experience, unfortunately. He will have an out-of-brace x-ray in May for a base-line before we begin therapy.

Our entire first appointment to fit the brace, with out-of-brace (for 3 weeks!) x-rays and in-brace x-rays, the exam, and the brace itself, cost us $4300. Our insurance covered all but $600 of it, because of course the chiro is out of network. The brace and all its parts are guaranteed for two years--he would have needed at least one new Boston brace by now anyway, because he's grown so much. We don't regret our decision. Sidney can be so much more active now than he could be in the rigid brace. He realizes that, and he wears it (mostly) without complaint. He's a trooper.

Mary Ellen

[RugbyLaura]

Re out/in brace xrays. My understanding is that yes, the out of brace xray is not a measure of where the curve is unless it is taken after a period of some days without the brace. However, at Imogen's stage of treatment the measurement out of brace is not the important one. At her last appointment the xray was taken without brace at the request of her consultant. The orthotist said at his appointment (immediately after the one with the consultant) that we could have another in brace xray taken but that it would not be very different to the out of brace as he had not tightened the brace much and her spine had not had time to move before the out of brace xray was taken. (Sorry - does this make sense? It does to me!) I have not mentioned that the 27 degree xray was out of brace for this reason. I am not saying that this is a true picture of her curve and that she has a permanent correction. Mr Mills (orthotist) is only really interested in her in brace xrays at the moment.

In June Imogen will be having in & out of brace xrays. I will ask questions again then & try to post the answers promptly - before I forget the detail.

Incidentally, Mr Mills measured her curve on the last xray to be 25 degrees (not 27) but I have gone with the most pessimistic measurement (that of the consultant surgeon).

[mariaf]

So let's try to keep our emotions at bay, and just "state the facts" and information as best we can, without resorting to written "shouting matches"... I know when something is near and dear to us, our emotions can be ready to burst open with the slight provocation. It's good to share, good to see different ideas of treatment, and even good to have constructive (helpful) criticism, but presented in a caring manner. We can all do that if we try.

Hi Susie,

I agree with you - however, most of what has been going back and forth ("most" not all) HAS had to do with differing facts as well as opinions. It's not like folks are name calling or anything. Sometimes the written word is interpreted a bit differently than if it were spoken in a calm tone.

I think we NEED to address issues where we feel something isn't accurate or might be misleading - just to ask for clarification. It's in everyone's best interest.

I, for one, wouldn't want the forum to lose people who are willing to state truthfully what they may have learned or experienced and end up with a bunch of nice people who are just going to "yes" each other to death and NEVER question anything. What good would that do in terms of sharing information? Who would learn or benefit from that?

Just my honest thoughts.

Take care,

[mariaf]

I am not saying that this is a true picture of her curve and that she has a permanent correction. Mr Mills (orthotist) is only really interested in her in brace xrays at the moment.

That is the part I do not understand. If an in-brace x-ray is not a true picture of the curve AND if there are some kids who are ONLY getting in-brace x-rays while in Spinecor, that could be dangerous in terms of catching progression early.

Whatever our differences of opinion on treatments may be, I would NOT want that to be the case for your daughter or for any child, to be progressing while the parents had a false sense of security because in-brace x-rays were not showing an accruate picture of what was actually occurring.

[RugbyLaura]

Maria,

Perhaps I phrased this badly. Obviously the xray is a true picture of her curve at that moment in time. It MAY not be a true picture of where it would be after some time out of brace. Our medical professionals are treating Imogen with Spinecor primarily to avoid early fusion. If her curve had continued to grow at such an alarming rate she would have needed surgery at a very early stage of maturity. This would mean the risk of crankshaft and make surgery more complicated. She would also end up with a short torso and therefore be of small stature. She is only just over 4'6" at present. She only has a small chance of avoiding surgery but we believe that Spinecor gives her the best chance of any option available to us.

My understanding is that the theory behind Spinecor is that it teaches the body to carry itself in a different way. This is normally achieved within 18 months. With a child of Imogen's age it will take longer as it needs to carry on until a while after puberty.

If/when Spinecor ceases to be effective at holding her curve it will become apparent in the in brace xrays. This will not mean that Spinecor has failed for her as it will have bought her some inches. Her consultant surgeon uses Spinecor during progression to 1) slow the progression as much as possible and 2) allow the spine to remain flexible in order to achieve as good a correction as possible at fusion. Flexibilty is not maintained with a rigid brace.

Is this any clearer? I will try to get more info at the next appointment.

Laura

ps - as I have stated before, I am not entirely anti VBS - it is not an option over here.

[Susie*Bee]

Maria-- I am in total agreement with what you said about the need for sorting out information and sharing opinions. I did not intend to say we should in some way "Pollyanna"ize the forum, or be like ostriches hiding from the truth. I am saying that there are nicer ways to share information than frontal attacks, which is how some of it came off. Again, that poster probably did not intend to sound that way, but it sure came off like that--at least to many of the readers. And this was directed at a new member and her first posts, seeking information and help.

[jillw]

Christine, thanks. I have noted your daughter's fluctuations and am hopeful it will be the same with Katie.

Regarding Xrays: I don't fully understand why an occasional out of brace Xray is not taken. I have a simple answer; I plan to have out of brace xrays taken periodically. I understand the relevence of in brace xrays for comparative purposes, but I have not been told that her in brace xrays are an indication of her actual curves (nor would I believe it if somebody told me it was...which they haven't). Instead, I was told a progression in an unbraced spine would also show by a progression with "in brace" xray readings. Nonetheless, I will periodically "test" that statement by having out of brace xrays also taken - probably shortly after her next appointment (which will be 1 year since her scoli diagnosis). I plan to go a full week without brace before an out of brace Xray because that is what Dr. Rivard has recommended. With spinecor, he doesn't believe only a day or two out of xray is enough to reflect the true out of brace curve.
Depending on what the out of brace xray reveals (and the size of my daughter's curves at the time), I will either increase or decrease the frequency of out of brace xrays.

I haven't yet seen a perfect solution to juvenile scoliosis. It doesn't exist. We do the best we can with the options that are available. Thank goodness for these forums which made me aware of options other than a milwaukee brace 23 hours a day for my daughter for the next 9 years (or to just wait and hope that if her curves did progress, that it would be a small enough progression to work with and not a big jump like many others in similar situations have experienced). Unfortunately for those with children who were diagnosed with juvenile or infant scoliosis, there is not as much research. The SRS criteria state that results related to those with juvenile scoli should not be included in published papers. That is infuriating to me. I understand they are a different animal and massing JIS results with AIS results could be misleading. However instead of throwing out results related to JIS, they should be reported separately in my opinion. So I muddle through the best I can. In the short term, my daughter's spine is being held in a position with a 68% smaller curve. I like that. I view that as a success. Will the success hold? I dont know - frankly I'd be surprised when she hits her period of rapid spine growth at 9 or 10 if her curves didn't progress. If spinecor doesn't hold the curves will I re-evaluate treatment options? Absolutely yes. Will I view spinecor as a failure? Not if it reduced my daughter's curve by more than 50% for some period of time. It will have done the job that any other brace out there could have done without as much of the pain and heartache. Is this a short term solution or long term solution for my daughter? I just don't know. But like just about every other parent I've seen on these boards, we make a decision for treatment and periodically re-assess and re-evaluate based upon results.

I don't think many view this as a spinecor vs. VBS issue nor do I feel that issues are sugar coated in any way shape or form on this forum. Spinecor is not an option or good choice for some just as VBS is not an option for some and not a good choice for others. Both treatments seem well suited for the JIS segment who are otherwise faced with close to a decade of hard bracing and even then may very well need fusion (although both treatments are not limited to JIS individuals). I can't wait to see more recent results published on VBS because the number of patients who have received the treatment to date is exponentially larger than the 39 patients who were reported on in 2005 and it sounds like Dr. Betz & co have been experiencing some great initial results. Furthermore, by now they would have results with a longer than 1.6 year average post op time period. (which given my daughter's age is relatively meaningless; in cases such as hers at least 6-7 years post op would be more relevent). I suspect updated results will show that VBS is at least as successful as hard bracing and probably much more so. By the way, maybe more recent results have been published...I saw a 2007 report, but it didn't add new results. If there is something more recent which I have missed, please let me know!)

thanks

[jillw]

Theresa,

In Montreal we paid US$3300 for the brace, 3 bodysuits and the consultation fee. Additionally, xrays were 325 canadian dollars. This was 10/07. I dont have the receipts for MOnday's visit, but the xrays were similarly priced I believe and we paid US$100 for the dr. appointment/fitting.

[shaes mom]

Hello everyone,

First, I wanted to apologize for my behavior yesterday. I felt attacked. The worst part was, I didn't know why I was being attacked. I responded in a negative way and I should have known better. Anyway, I've made the decision to not respond to what I feel are negative posts. That's not why I came here.

Shae was diagnosed at age 9 - she's now 11. I've been reading the forums for a while. I tried to sign up a while ago so I could post and I must have done something wrong because it was never finalized. Anyway, I'm on now and I know everyone out there for the most part is supportive and caring. So I do want to thank all of you for all the information you have shared. I really don't have an opinion on any of the options. The only thing I know is I want my daughter to be as comfortable as she can be and where her curves are pretty minor compared to others I feel it's best right now to try the Spinecor first.

I truly wish everyone the best possible outcome with whatever choices you make.




Deshea,

Thank you, I did get your email. I got it last night but couldn't print some of the attachments so I printed them this morning. I actually talked to HP today and they told me the brace would be covered at out-of-network costs ($500 deductible and 80% coverage). Once I spend the max of $1,500 however, everything would be covered at 100%. So we will go forward and make an appt. with Dr. Rivard and deal with appealing the out-of-network thing later.

By the way, do you have Dr. Rivard's phone number? Do you know how long it takes to get your first appt.?


Theresa

[desheah]

hi theresa,

i'm glad you're back and taking deep calming breaths (as we all are!). that's great that harvard has given you more info. don't be surprised though if you still have to do an appeal after you submit your claim!

dr. rivard's # is 514/345-4839. he sometimes answers the phone or dr. coillard so don't be shocked. more likely, you will leave a voicemail and Joanne Lavigne will call you back. FYI -- their fax # is 514/345-7754. I've used that one often.

i don't remember how long it took to get an appointment since it was almost 2 years ago. for follow-ups, i call the month before we're due and get the appointment the following month. of course, the initial consultation does take longer.

also, as an aside, i'm not sure when the passport rules take effect, but do you have a passport for your daughter? i *think* it is in june that you will absolutely need one to get over the border so take that into account.

my best,
deshea

[desheah]

another post from me to say -- amanda, what a wonderfully detailed post on vbs. i'm glad that theresa and anyone else coming to this thread will have a better idea of what it is and your thought process on why you chose it for lorena. thank you for doing that!

my best,
deshea

[desheah]

My understanding is that the theory behind Spinecor is that it teaches the body to carry itself in a different way.

i wanted to also try and "discuss" the whole in brace x-ray versus the out of brace x-ray. first and foremost, i am a parent and not a medical professional.

second, a slight history of where i'm coming from, lucas wore a tlso from 18 mos to 2 1/2 yrs old from children's in boston. first fitting, he had x-rays in the brace. a month later, tightened the straps and another x-ray in the brace. next check up out of brace x-ray after 24 hours. slight modification to the brace. outgrew it in 6 months, had a new one made, but never had an in brace x-ray. i begged for in brace x-rays. no. the only way to see how the curve is responding to the brace is to do out of brace x-rays. BUT what if the brace is pushing against the curve where it should be. "we can tell". uh huh. in addition, we were being conservative and had lucas in a charleston night-time bending brace and the tlso during the day. 50% correction during the day and supposedly over-correction at night. we thought we were so smart! of course, it didn't help that the ortho would not do an in brace x-ray for the charleston. "we can tell." uh huh. lucas progressed. we went onto casting. (another very long story . . .)

okay, so there is my bias. i want an in brace x-ray to see that the brace is working. with the spinecor you will not get 50% reduction in the curve. it is not a hard brace. that is not the way that it works. it is making your child's body move in a way to correct the curve and making the muscles do the work of maintaining the corrective movement. it is an active "dynamic" brace. it is not squeezing the child, exerting pressure through the ribs to correct the spine and in the process causing rib deformity and muscle atrophy.

on another note, i did ask dr. rivard for an out of brace x-ray. he doesn't want to do it now. i'm okay with that for now. we're in this scoliosis game for the long haul. if lucas' numbers stay pretty stable in the spinecor, i feel that it is stable out of brace. if the numbers continue to go up, i will re-evaluate our options. that is one of the reasons that i had lucas seen by dr. hresko at children's in boston. he does vbs. if lucas' scoliosis is relentless and the curve progresses, then it is not necessarily a failure of the spinecor. this would happen with any brace (in my opinion). but then we have given bracing a try. just like we gave casting a try. i'm willing to try anything and delay surgery for as long as possible BUT surgery is not out of the question.

for now, lucas is in the spinecor, and i need the support of other parents who have chosen the spinecor for their children. i need to know the ups and the downs. as someone else mentioned, nothing sugar coated.

i hope this makes some sense, and i hope this helps facilitate constructive discussion on the topic of brace x-rays.

as always, my best,
deshea :)

[shaes mom]

Deshea,

You're my life saver this week. I hadn't even thought of passports. My husband is the only one who has one. Oh boy, best get moving!