spinecor

[structural75]

Christine2 and company,
I know most of you ridicule me and my opinion but here it is anyway.


Once again the parents on this forum have helped me to make a rational decision regarding the well being of my daughter and my wallet. After feed back from Gerbo and Cheryl and Karen, as well as my chiropractor and orthos I have decided that massage therapy will be the better choice to help with my daughter's muscle spasms. I do feel after re evaluating the last week and a half that I was miss lead as to the type of physical therapy that my daughter would be recieving. Thank goodness I caught it early (1evaluation and 1 session). I went into the PT's office asking for relief of muscle spasms not treatment for scoliosis. She is already being treated for scoliosis. After a lot of questioning I found that the PT was trying to change our course of treatment.
I understand what you're getting at but remember that the neck spasms are a symptom of the scoliosis... in other words 7 year olds don't typically get neck spasms without an underlaying cause/imbalance. So if anyone is to address your daughter's muscle spasms in the neck (a region of the spine that is attempting to adjust/orient itself to the 'corrected' curve below!!) they will need to understand the structural/tensional strain patterns that are coming up from below the neck and must be able to work intelligently and constructively with that or else they'll be potentially creating more problems. That is why I suggested in another thread to try utilizing something that has an understanding of these strain patterns, ...I wasn't suggesting to 'correct' or "cure" the scoliosis... but anyone working these side effects of the spinal and soft tissue imbalances (muscle spasms) should have an understanding of the scoliotic pattern contributing to it.

Trying to 'relax' muscles that are doing their best to adjust/maintain/balance the neck and head on top of a thoracic and lumbar scoliotic spine that has been forced into correction as dramatically as your daughters (congratulations by the way on your current success) is relatively futile. After the massage she will stand up and the head/neck will have to orient was again to the rest of the spine and the strain patterns will still exist... and her spasms will likely return until the next massage. So I think massage is precisely one of those things that could go on forever... constant 'maintenance' unless the strain in the soft tissue is address to balance it with the correction you've achieved below. That doesn't sound like a cheaper route to me. If you don't change the connective tissue tension, the spasms in the musclular fibers will probably continue.

I don't think I would be asking a massage therapist their "opinion" on my child's scoliosis or neck spasms as a result of it. They are not nearly qualified to give that sort of input.

p.s. - Contrary to your beliefs, I have never nor am currently suggesting anything to "cure" or "fix" her scoliosis. Just working intelligently and safely with your daughter's neck.

[cherylplinder]

As her body adjust to the new alignment of the spine, I think the problem will resolve. Her body will adjust eventually to the new straighter spine without "connective tissue" adjustments. That is why the 2 year post bracing studies show that the correction holds.
She could try the cheaper massage therapy and see if it is effective in relieving the neck spasms . From reading the studies Karen posted, cranial sacral therapy sounds like quackery to me. I really appreciate objective studies, myself. They are very helpful when deciding a course of therapy.

[structural75]

Christine,
Hold the phone... I wasn't attacking you... You know, I wouldn't have posted on this thread but when I was reading some of the recent posts from you all about this issue you brought up elsewhere, I saw that you folks are mentioning my name with the usual sarcasm and I wasn't even a part of your discussion. I don't appreciate being mocked or refered to in vein. So I felt inclined to clarify my response to you earlier on a different thread.

That's fine... I'm sorry that there isn't room for another perspective on this forum. Why ask a question if you know what the response is going to be from your friends and you don't care to hear some kind of sound reasoning for it? Despite the fact that you're searching for some sort of answer to these questions, or at least insight, it doesn't appear as though folks are very open to a larger and educated perspective. There would be no "can of worms" if we could actually have an intelligent discussion on these questions at hand. But instead certain folks always feel the need to dig into their 'database' for some kind of dirt on the topic to dismiss it as quickly as possible.... all the while convienently leaving out the "objective studies" that prove the validity of something. I'm sorry but that's depressing and rediculous behaviour when peoples well-being is on the line. If one doesn't have anything constructive, objective or posiive to say, then why contribute negativity on a topic they don't understand? ..other than to debunk it for personal reasons/hang-ups.

Cheryl,

As her body adjust to the new alignment of the spine, I think the problem will resolve. Her body will adjust eventually to the new straighter spine without "connective tissue" adjustments. That is why the 2 year post bracing studies show that the correction holds.

Connective tissue strain patterns do not resolve themselves following bracing... that is not why the curves sometimes hold. They hold because the bones were not allowed to deform during growth. Wait another 10 years and take a look to see if the curves have actually still held in the same exact place.... I think that you'll see they often don't remain as such... it just takes longer to progress slightly because the growth plates have ceased forming new bone and therefore boney deformity becomes a much slower process. But gravity remains a constant and the connective tissue will continue to resist its drag on the body... It will not magically disapear unfortunately. Maintenance is simply a reality with individuals with scoliosis... the amount needed will vary from one person to the next.

You can be wishful in the presumption that connective tissue work is unecessary, but the myriad of pain and problems people present here on this forum and beyond prove otherwise. You just end up with one compensatory pattern over another. I really don't see how my input on this is 'incorrect' and yours is accurate... ? ...Do you work with the human body in this context everyday... ? Do you not think that an experienced opinion is valid here? I really wish you would put aside your personal feelings about some previous dialogues I've been apart of and consider the perspective at least. You're limiting/discouraging potentially valuable options for many.


From reading the studies Karen posted, cranial sacral therapy sounds like quackery to me. I really appreciate objective studies, myself. They are very helpful when deciding a course of therapy.
Why didn't you read the myriad of other objective studies on cranial osteopathy? Since you're a fan of objective studies they might be of interest to you.... And give a more accurate unbiased picture. You can find dirt on just about anything if you look hard enough... ;)

[cherylplinder]

You know, Structural, we don't know who or what you are? What are your credentials again? You certainly hold yourself up as an expert. We need to see some documentation.
You are regularly attacking members of the forum for communicating information. Gerbo and Karen both posted STUDIES that addressed Christine's questions. Christine read studies and formed her OWN opinion. She didn't just take the OPINION of a friend.
Although, since you don't consider the support factor of this forum something that you should be constrained by, you decided to deride her for her comment.
You should keep your OPINIONS to yourself. If you can't take the heat get out of the kitchen or keep your nasty opinions and attitude to yourself! You attack forum members on a regular basis and expect to be regarded with anything other than the ridicule you dish out?
Again- you don't have scoliosis and don't have a child with scoliosis and if you can't respect the needs of the parents on this forum for support, you should keep your promise and stop posting. Your attacks are cruel, not supportive and informative. It appears that you are the one that can't stand any opposition.
That is why I have a problem with you. The parents are smart enough to weed through any garbage anyone posts. But they don't need the cruel comments and tension you bring to the forum.

[structural75]

Cheryl,

...If you can't take the heat get out of the kitchen
Judging by my track record here on this forum with you all, and my persistance, I'd say I can handle the heat quite well... .

You know, Structural, we don't know who or what you are? What are your credentials again. You certainly hold yourself up as an expert. We need to see some documentation.And yours? You seem to have no problem playing the role of expert when it comes to debunking things... Unfortunately you have never been able to back them up with any sort of anatomical/physiological understanding... . What were yours again? I think I've shown that I have a certain degree of knowledge and experience on these matters and am always willing to answer questions and comment with clarity of explanation behind my 'opinions' and thoughts. How about you?

You are regularly attacking members of the forum for communicating information. Gerbo and Karen both posted STUDIES that addressed Christine's questions. Christine read studies and formed her OWN opinion. She didn't just take the OPINION of a friend. Who's attacking who? I've offered 'information' many times around only to be hastily attacked by people like you. And I was only presenting the 'other half' of the studies that Karen convienently left out. There were numerous objective studies done on the efficacy and use of cranial osteopathy from the National Library that Karen did not share with Christine. So if you folks are going to make it your purpose here to silence all methods that you're unfamiliar with then I will gladly present the other side. You folks are as bad as our politicians... nothing but smear tactics.


Although, since you don't consider the support factor of this forum something that you should be constrained by, you decided to deride her for her comment and post some of you psuedofacts that are not supported by any studies that you have bothered to post. You post studies, but not any that address all the mumbo jumbo that you spew!Are you telling me that the studies Karen posted had anything to do with Christine's question? One of those studies was determining the increased effectiveness of acupuncture in combination with cranial work... ? What did that have to do with anything? The studies I posted on cranial Ost. were to show that it has been proven to be effective in treatment of a variety of conditions and that it does in fact alter the anatomy and physiology of the body. Which is very different than the conclusion Karen was attempting to draw about it based on the few selective studies she chose to post. By the way, can you prove to me that I'm offering "pseudofacts"? What makes them such? Is it maybe the fact that you are NOT the expert on these topics? What is wrong with offering information that you, or others, may not be aware of? I believe that these are my attempts at offering support... giving an educated opinion on matters that people are confused about. There is no harm in that. And just because this forum is also about support it doesn't mean you can spew off false and misleading information to people without being called on it. That's irresponsible and unethical.


You should keep your OPINIONS to yourselfLikewise, I don't remember you being an expert on connective tissue properties and manipulation. What are "connective tissue adjustments" anyway?

Cheryl, you seem to think that studies will supply us with all the answers.... So why are there so many people on this forum still asking so many questions? (repeatedly I might add)

[structural75]

Again- you don't have scoliosis and don't have a child with scoliosis and if you can't respect the needs of the parents on this forum for support, you should keep your promise and stop posting. Your attacks are cruel, not supportive and informative. It appears that you are the one that can't stand any opposition.
That is why I have a problem with you. The parents are smart enough to weed through any garbage anyone posts. But they don't need the cruel comments and tension you bring to the forum.

No I don't have a child with scoliosis, ...but I have a 5 year old neice with scoliosis and a 3 year old nephew with epilepsy... I think I can understand where you folks are coming from... And you may want to re-read my posts because they ARE IN FACT informative... whether YOU choose to listen and consider a different perspective than the ones you continuosly hear about is another story. Whether YOU are willing to gather ALL the information possible before making decisions is the real issue here. And apearantly you're not willing to do that. That's fine, limit yourself to studies and whatever else feels right... but unless you can respond to my "opinions" with something intelligable or constructive then leave me alone.

And it is you in fact who has essentially told me to shut up and bug off... in so many words repeatedly. I don't cast that kind of slander and negativity towards you and others... I believe it's you who can't handle another perspective/opinion/opposition from the norm.

"If you want different answers to the same questions you must start with a different premise."

[cherylplinder]

If you didn't continually attack parents for choosing a different avenue than what you propose, critique their treatment choices, and deride them for those choices in a cruel way, then I might believe that you gave one rip for the parents on this forum.
But you are hateful and unkind to parents making difficult decisions that they and their children will have to live with forever. You don't just stick to your "facts"

I would ban you if I could.

[RugbyLaura]

Hi all,

We have been away at my dad's for a week. The first time away with Immy's brace. It took some getting used to - not being able to be spontanious. Long walks along the seafront needed to be cut short due to rubbing & hours spent splashing in the sea or pool had to be timetabled. But we managed. It's difficult because everyone else is affected by the restrictions. Anyway, Imogen was in brace almost 20 hours a day without too much complaining. However, now we are home it's a different matter; without the prospect of a holiday to look forward to she's finding the reality of wearing her brace much harder to deal with. Lots of "it's not fair"s. And I agree, it's not - but it's life & you have to get on with it. Every time I look at her back it seems worse & I'm completely fed up with the whole thing!

Sorry for moaning - it's hard to keep a smile on your face, sometimes you've just got to let off steam and it helps to have the "ear" of others in the same situation.

Laura x

[emarismom]

Laura,

Sorry to hear that Immy is having a hard time coping. Hopefully, as time
goes on she will feel differently. Maybe at her three month appointment,
when her curve is much improved, she will see the value of it. Emily has not complained at all. However, we did go away to Busch Gardens and Adventure
Island (a theme park and water park here in Florida) a few days ago. On the day we were in the theme park, she wore the brace the 20 hours. Yet on the day we went to the water park she was out 8 hours. I felt so guilty about it!! It will be the ONLY time I ever do it. Prior to the trip I had her wear it for 22 hours each day and since we got back I have had her in it
22 hours a day. I hope it won't have any significant effect.

Also I just returned from Target where I found long, contoured t-shirts for under the brace. They were on clearance for $2.24 :p . Once we got home and tried one on they fit perfectly!! They are long so they go under the brace but on top of the underwear and prevent rubbing. Also the neck line is a little lower than any of the other shirts we have tried, so the brace and the undershirt are not showing at all!! YEAH!! I'm going to run over to another Target now to pick up all they have. If anyone one has a Target nearby you may want to go take a look.

[RugbyLaura]

Michelle, Thanks for the words of wisdom! I'm just feeling a bit sorry for her today as her dad (lovely man normally) shouted at her for not putting her brace on after dancing yesterday. She just forgot to & so was out of brace for about 3.5 hours, no big deal I felt as it was the only time she had out yesterday. But he was really cross.

Re underwear - Immy only wears the spinecor body suits. I have thought about trying nothing underneath when the weather gets really hot but wondered what to do about knickers (as we call them). Any suggestions?

Structural - just a suggestion - I value all constructive input from anyone, as I'm sure we all do. Perhaps, to avoid these arguments, you could start a new thread when you have a point to make and let us know about that thread. We could then read it if we wanted to...... Just a thought

Laura

[gallathea]

hi Laura:

I just wanted to let you know that you aren't alone in having some frustrating days. My daughter's been in the Spinecor since last September, and every day with the brace has been a fight. She was a strong-willed kid who sees the glass as half-empty before we got her diagnosis, so you can imagine how much we hear the "it's not fairs." Of course, it's not, but how do you convince a child to just buck up and be grateful she doesn't have to wear a hard brace or have surgery (yet)? Unfortunately, that just doesn't work with my kid most of the time. This isn't to say that Immy won't get used to it, but I just wanted to let you know you're not alone if you do have occasional struggles with it all. I'm wondering if any other parents out there are having issues with their daughter's anger and self-esteem? I'm finding all of this so overwhelming and upsetting a lot of the time.

Thanks for listening,
Caroline

[structural75]

Cheryl,

If you didn't continually attack parents for choosing a different avenue than
what you propose, critique their treatment choices, and deride them for those
choices in a cruel way, then I might believe that you gave one rip for the
parents on this forum.
But you are hateful and unkind to parents making difficult decisions that they
and their children will have to live with. You don't just stick to your "facts"

I would ban you if I could.Who is "hateful and unkind"?

I did not "Attack" ANY parents for their decisions. I simply made clear that there was far more information/studies out there relating to Christine's question than was revealed/shared by Karen. She chose studies that were clearly supporting her own personal beliefs and steering people away from just about everything... That is not "objective", that is biased negativity and narrow minded consideration for adjunctive therapies beyond bracing, surgery and drugs. I have every right to make it clear to others that what she, and you are doing is propogating you're own belief systems in a forum where people are looking for information. I'm happy to make the other side known as well seeing as nobody else cares to do so.

Which ultimately results in making decisions that "their children have to live with"! That is why I am so passionate about taking a stance here that no one else cares to take... You're right in some ways, I don't care about the parents if they're anything like you.... I care about the children whos lives will be affected by those parents decisions... So I will continue to shed light on issues/matters that others deliberately put in the shadows. If you don't like it, don't respond to it... then maybe we won't have these rediculous arguements. After all, it's you and a few others here that end up instigating this junk by slinging negative remarks about my thoughts/postings or by slandering things you know nothing about.

I thought my response to Christine was in fact informative and I was trying to be helpful by explaining what is a very typical scenario for many with scoliosis. There's no harm or negativity in that... ! And if I know that something being suggested isn't going to have the most beneficial effect then I will undoubtedly say so... I have absolutely nothing to gain from doing so, it is solely for the well-being of the children and adults alike on this forum with scoliosis and just trying to get through each day in as much comfort, with as much ease as possible. If I hear someone suggest something that may not help the situation or even make it worse, you bet I'll pipe up.

Laura,
That sounded like a polite way of telling me to get lost and that my responses are not of value to share amongst the ongoing threads... You can't possibly tell me that you don't see other forum members attempts to silence others with 'different' points of view? And you think that is appropriate? ...I should start my own 'private' thread and talk to myself...? ;)
***************

[RugbyLaura]

Structural, not true at all. I think you have some very valuable input and I have enjoyed reading your lively debate on occasion. It's just that you seem to have a knack of winding some people up and I'd really rather not become involved in arguments. OK, I could leave well alone but just by reading it I become involved. This thread has been a lifeline for me and I don't want it to be spoilt. Sorry to be so blunt.

I appreciate that your motives are are sound, could you just try to be a little less excitable? :p

Laura

[gerbo]

Laura, so sorry to hear Imogen is having a hard time. Indeed it can be so hard to act in the way that we should as mature parents and hide our own feelings and frustrations and just calmly tell our children that they have no choice than to put the brace on in the same way as they have to put their shoes on and brush their teeth

sometimes our own frustrations and anger and sadness do boil over and we have a little shout.......... and feel damned guilty after!!

At the moment it must be so hard for you as you do not have a clue as to whether the brace is doing anything at all, so there is nothing there to make you stronger and deflect the bad mmods and the expressions of unfairness and i am sure your own doubts and insecurities, as we all have, do creep in and confuse the whole picture.

There is an art in recognising there is a life besides scoliosis and spinecor, and more importantly there is a life after, although admittingly, even after 3 years in "the game" we haven't mastered that art particularly well yet.

Take care, know you are not on your own

gerbo

[emarismom]

gerbo,

It's ironic that you mention "a life beyond scoliosis", as this week while at the water park, I unfortunately noticed MANY people (both children and adults) with scoliosis. I couldn't help but see it everywhere I turned and felt guilty to be looking and noticing it at all. Part of me wanted to go up and talk to some of these people or their parents, thankfully I resisted that urge.
But it seems that the scoliosis is everywhere I go. I notice it in church, in students I teach, at the mall. Everywhere. Mind you before Emily's diagnosis it was not even a part of my life. Emily's diagnosis was almost three years ago so one would think that I would have come to some point of acceptance, but I really I do struggle with it on a daily basis, even though
at this point in time everything seems to be stable or dare I say improving.

[scoliomom]

hi

just reading the previous posts... my daughter is being treated for her scoliosis in the CHENEAU brace- and doindgsome schroth techniques. her scoliosis, out of brace was t-39' l-40'. recent x-rays in brace show a GREAT correction of T-30' AND L-25'!!!! This is a great brace. Her current orthopod had never heard of it, I pursued it myself. He obviously is growing interested as she progresses in it. :)

[summerfun4]

Just wanted to add that most days my six-year old daughter is ready for her break as soon as she gets up, and asks all throughout the day! Most days I can get it back on her fairly easily, but there are days she just wants no part of it, especially if she's overtired. I'm dreading the school year; we got it at the end of March last year, and being in half-day kdg, we didn't wear it to school. I'm sure she's going to be uncomfortable and hot, and her one strap slips and bothers her all day; not sure how she's going to manage in school.

Question - has anyone flown in the brace yet? Does it set off the alarms? We have a doctor's note, but I'd like to know what to expect to help prepare her. She'd be so embarassed if the alarms go off on her.

Thank you to everyone who listens and lends support to each other! You have gotten me through these past 4 months, and will help as I start my seventh grader on the brace in a few weeks. How she will manage peer pressure, changing for gym, etc. is going to initiate a whole new level of problems to an already difficult time of life for her.

Linda

[Sherie]

Hi Linda

My daughter doesn't wear the brace anymore but I can tell you our experience. She did set off the metal detectors wearing her Spinecor and was pulled into a private room to be wanded. I think it was a little embarrassing for her but not really a big deal. If it's a short flight and you're carrying luggage, it might almost be easier to take it off and stow it, that's what we did on the way home.

[desheah]

linda,

my son is 5 1/2 yrs old. he has been in the spinecor for a year. we just got back from a trip to utah from massachusetts. boy was it hot! he spent a lot of time out of brace since it just was not feasible to be in it with the weather. yes, definitely a vacation. normally, he wears it the prescribed number of hours per day. usually with only one 2 hour break instead of the two 2 hour breaks. he did not set off the alarms at the airport. perhaps it is because he has the smallest sized brace versus the adolescent version?

deshea

[cherylplinder]

Sometimes Rachel sets off the metal detector and sometimes she doesn't. This past time it didn't go off either way. Last time, it went off both ways.
Your amazing results always make me smile.

[desheah]

thanks cheryl. we've been pretty happy with the treatment options that we've sought in the last 4 years and the results that we've had. i'm relieved that lucas is a pretty laid back person who has really been a trooper through it all.

deshea

[cherylplinder]

I'm always sad for the infantile cases on forum that are slipping through the treament cracks. They are large cracks. It is beyond belief most of the time.
I'm glad Lucas got great care and has had you as an advocate.

[gerbo]

off to Holland for a 2 week holiday. Windmills, cloggs, Amsterdam with all its attractions, french fries with peanutbuttersauce, cycling, really looking forward to this

all the best to all

gerbo

[emarismom]

gerbo,

Have a great trip!!

[Celia]

I asked about the x-rays. They are only PA and lateral and only include the spine. They are not whole body, 360 degrees. The exposure is 10% of regular. They did use the sheild for the ovaries,but feel the breast shield often covers some of the spine in scoliosis patients. THe explanation was satisfactory, I felt.


It's good to know this given that our followup is just around the corner! I feel better about the new x-ray machine knowing that you got such a great explanation from Dr. Rivard. It's always good to question things and not blindly follow assumptions. We figured out a great way to preserve the snaps on the elastic bands and pelvic base and that is to take off/put on the velcro side rather than the snap side and this is working very well for us. The bodysuits we got from www.bodysuit.com are also quite acceptable and very similar to the Spinecor bodysuits and they're a fraction of the cost!

Gerbo...I can't imagine what peanut butter sauce on French Fries tastes like???! :eek:

[Mom37]

Mom37,

Good luck with your daughter's surgery. Please keep us posted. Please remind me of how old your daughter is and what her curves are. I remember you from a while back when we talked about the Spinecor. As you can see, my daughter is having her surgery a month after yours. Where do you live?

Celia, it is good to get away from the scoliosis topic for a while. Enjoy your vacation.

I know it is tough, and I wish you the best on your daughters surgery next month. I will keep you and your daughter in our thoughts and prayers.

Spinal Fusion surgery, Wed., Aug. 1st went very well. She had two titanium rods and screws, and hooks, as need to be able to do future MRI's to monitor her spinal cord. No spinal cord issues during surgery. Great correction and about an inch and a half taller. She is still healing, but we were able to come home yesterday and sleep in our own beds. Pain is manageable, but day 3-4 were tough. Her curve was at a 60 on July 31st at preop. It was upper thorasic curve later determined through an MRI as caused by Chiari I Malformation. She had Chiari decompression surgery Dec 2006 and she used Spinecor until then, almost 9 months. We live in the Dallas/Ft. Worth area of Texas. She had surgery at Texas Scottish Rite Hospital for Children. The two surgeons were awesome, and nurses, and eveyone there were great. A very special place. Since day one until now very pleased with them (TSRHC).

[mpj]

Hello,

We just got in from Montreal today. All went well. Dr. Rivard said that her curve mesured 5 degrees from 7 degrees last time. We started around 21 degrees in Dec. Her x-ray looked better to me than it did last time, not that I know much about reading an x-ray, but it did make me worry less ;) They made a few small adjustments to the brace, but nothing too major. That is all for now.

Take care everyone.

Sarah

[RugbyLaura]

Wonderful news Sarah!

[cherylplinder]

Wow! Great news! I am so excited!

[~ScoliosisGirl~]

Wow! gr8 news! glad to hear!!

[Celia]

I'm officially back from our holidays! Was I ever gone???? :D Here are a few memorable pictures:

http://i41.photobucket.com/albums/e251/sealy25/celia1082.jpg
http://i41.photobucket.com/albums/e251/sealy25/celia1200.jpg
http://i41.photobucket.com/albums/e251/sealy25/celia1098.jpg
http://i41.photobucket.com/albums/e251/sealy25/celia1205.jpg
http://i41.photobucket.com/albums/e251/sealy25/celia1196.jpg
http://i41.photobucket.com/albums/e251/sealy25/celia1166.jpg
http://i41.photobucket.com/albums/e251/sealy25/celia1158.jpg
http://i41.photobucket.com/albums/e251/sealy25/celia1156.jpg
http://i41.photobucket.com/albums/e251/sealy25/celia1106.jpg
http://i41.photobucket.com/albums/e251/sealy25/celia1101.jpg
http://i41.photobucket.com/albums/e251/sealy25/celia1097.jpg
http://i41.photobucket.com/albums/e251/sealy25/celia1086.jpg
http://i41.photobucket.com/albums/e251/sealy25/celia1085.jpg

[christine2]

Great news Sara!!

We just returned home from our appt (1 yr in brace) My daughter measured 8 degrees so we are holding strong!! (Dr. Rivard said 3-5 degree margin of error) We are very happy. Dr Coillard said she looked great out of brace too. A SMALL rib hump but absolutly no concern. I thought I saw a compensatory curve but she said there was none. I have been worring about that I thought I had seen one (naked eye). They are top notch professionals!!

We made a vacation of it. We spent 2 nights at the Great escape lodge, hung out at lake George, then to Plattsburg. On our way back we picked up out new puppy in NH, the White Mountains are georgous. Then to top off our most wonderful vacation we listened to the puppy scream & cry ALL NIGHT.

The kids are having a blast!!

[emarismom]

Congratulations Christine, you must be ecstatic!! Great correction and holding!!

[cherylplinder]

Congratulations Christine! Great news!

Celia,
Your pictures are beautiful!

[Celia]

It's encouraging to read that the young children with juvenile scoliosis are having such good results with the spinecor and in some cases the curves are being reduced quite substantially with the brace. Of course only time will tell.... but if the curves stay low I can't imagine any major problems during the adolescent growth spurt. Am I jumping the gun on this one??! :p


*

[christine2]

Dr Rivards plan is as follows

Keep my daughters curve as low as possible now. Then he expects it may creep up during her 10 -13 yr growth spurt. He said we should be able to keep it below 20 degrees and she should be able to live a normal life with out surgery. as Celia said only time will tell but at least for now my daughter has a good quality of life.

[gallathea]

That's great news, Christine!

C

[mpj]

Christine,

So glad your trip went really well!

Sarah

[MATJESNIC]

Christine and everyone else who I may have missed,

I am happy for all of your success and I hope you always hear good news.

[Celia]

Melissa,

I don't know how I came across the following website again but I was just doing a Google search and I found it! I read this a few years ago and what caught my eye was the fact that this one patient was a cheerleader and she wanted to retain as much flexibility as possible. I don't know if Nicole would even qualify for a such a procedure but I thought I should share this with you.

http://www.orthojournalhms.org/volume2/html/articles10.htm

[MATJESNIC]

Thanks for sharing it. I wonder why this is not done at Shriner's or CHOP. I had also been looking into the bone-on-bone a couple of years back. I wonder if many surgeons are doing it.

If anyone knows anything about this procedure, please respond.

[RugbyLaura]

Christine, excellent news!

Celia, what a beautiful country (and lovely smiling children too). I MUST book a holiday, have always wanted to go. Where should I look?

Laura

[Celia]

Hi Laura,


Our vacation was in Northern Ontario at Algonquin. It's a very beautiful area and if you're planning a rustic vacation I highly recommend renting a cabin or cottage from the following website. The rates are very reasonable. The "Kiosk" cabin at Algonquin is nice since it's right beside a lake and has amenities. If you're going for cottage rentals the Heritage House at the Sandbanks is also beautiful, although a little pricey. These cottages and cabins can be reserved up to 5 months in advance of arrival - they do go fast so you literally have to book in advance to get your preferred time slot. Alternatively, you can try to find a private cottage but that would be a little difficult for you since you're in the U.K.


http://www.ontarioparks.com/english/roofed_backcountry.html

http://www.ontarioparks.com/english/cottages.html

http://www.ontarioparks.com/english/roofed.html

[Olivia'smother]

After waiting since early July, my 12 year old daughter Olivia (she just had a birthday) finally had her first appointment with Dr. Rivard in Montreal. Even though her curves were measured in late June to be 27/30, they were measured as 25/24 in Montreal. Dr. Rivard explained that it is most likely due to the difference in machines being used and skill of the person reading the results. We were very excited that the curve had not progressed! She was fitted with the Spinecor and Dr. Colliard stated that she had a very complicated curve. After the first in brace x-ray she measured 16/18! This was very promising. Even though time will tell whether she will have any permanent correction, I'm so glad I decided to go this route. It was definitely the right choice for our daughter.

When we returned home, Olivia played in her last game of summer soccer in brace. As she performed quite well, she now believes the brace is good luck. :) We have 2 Spinecor bodysuits (wow $$$) and I just ordered some different styles from bodysuits.com. We need to find our way and what will work for her, but I have gotten so much information and wonderful advice from this forum that it has helped tremendously. Thank you so much everyone. And yes, I agree with so many of you - Dr. Rivard and Dr. Colliard ARE wonderful!
Amy

[Sherie]

Thanks for sharing it. I wonder why this is not done at Shriner's or CHOP. I had also been looking into the bone-on-bone a couple of years back. I wonder if many surgeons are doing it.

If anyone knows anything about this procedure, please respond.

Hi Melissa

I did alot of research a few months back. After a lot of digging, I found that there's a possibility for kyphosis later on with the bone on bone, has to do with the way the vertebrae are shaped and sit on each other. I didn't think it was worth risking especially since this isn't a very common procedure besides, it's not suitable for double curves.

[cherylplinder]

Great news Amy!

[RugbyLaura]

I'm so glad it all went well for you Amy. I wish we'd caught Immy's curve as low. Given her age too it all looks very positive for Olivia!

Celia, thanks for the links. We hope to book something for next summer.

Laura

[Celia]

Melissa/Sherie,

I found the following study on pubmed and the publish date is 2007 - I don't know the difference between "bone on bone" and "short segment anterior fusion". If it were me, I would contact the doctor in the previous article directly and find out long term complications etc. He would know best.

1: Eur Spine J. 2007 Jan;16(1):65-72. Epub 2006 Mar 17. Links

Short anterior correction of the thoracolumbar/lumbar curve in King 1 idiopathic scoliosis: the behaviour of the instrumented and non-instrumented curves and the trunk balance.Min K, Hahn F, Ziebarth K.
Orthopedics, Universtity of Zurich, Zurich, Switzerland. kan.min@balgrist.ch

This is a retrospective clinical, radiological and patient outcome assessment of 21 consecutive patients with King 1 idiopathic adolescent scoliosis treated by short anterior selective fusion of the major thoracolumbar/lumbar (TL/L) curve. Three-dimensional changes of both curves, changes in trunk balance and rib hump were evaluated. The minimal follow-up was 24 months (max. 83). The Cobb angle of the TL/L curve was 52 degrees (45-67 degrees) with a flexibility of 72% (40-100%). The average length of the main curve was 5 (3-8) segments. An average of 3 (2-4) segments was fused using rigid single rod implants with side-loading screws. The Cobb angle of the thoracic curve was 33 degrees (18-50 degrees) with a flexibility of 69% (29-100%). The thoracic curve in bending was less than 20 degrees in 17 patients, and 20-25 degrees in 4 patients. In the TL/L curve there was an improvement of the Cobb angle of 67%, of the apex vertebral rotation of 51% and of the apex vertebral translation of 74%. The Cobb angle of the thoracic curve improved 29% spontaneously. Shoulder balance improved significantly from an average preoperative imbalance of 14.5-3.1 mm at the last follow-up. Seventy-five percent of the patients with preoperative positive shoulder imbalance (higher on the side of the thoracic curve) had levelled shoulders at the last follow-up. C7 offset improved from a preoperative 19.8 (0-40) to 4.8 (0-18) mm at the last follow-up. There were no significant changes in rotation, translation of the thoracic curve and the clinical rib hump. There were no significant changes in thoracic kyphosis or lumbar lordosis. The average score of the SRS-24 questionnaire at the last follow-up was 91 points (max. 120). We conclude that short anterior selective fusion of the TL/L curve in King 1 scoliosis with a thoracic curve bending to 25 degrees or less (Type 5 according to Lenke classification) results in a satisfactory correction and a balanced spine. Short fusions leave enough mobile lumbar segments for the establishment of global spinal balance. A positive shoulder imbalance is not a contraindication for this procedure. Structural interbody grafts are not necessary to maintain lumbar lordosis.

PMID: 16544158 [PubMed - indexed for MEDLINE]

[Celia]

I was curious, so I looked up "bone on bone". Here is the following video with dr. Gaines:

Wednesday Sessions
09:10am Anterior bone on bone play4
Gaines, Robert


http://www.istreamplanet.com/srs/default.asp?np=media&conf=5&edi=16

[summerfun4]

My daughter is 12 and is getting her brace tomorrow, unfortunately right in the middle of a heavy cycle. How are you managing the brace during her cycle? Sorry if this is too graphic for this forum, but it's reality in our house! My 6 year old is easy compared to this, either bodysuits or underwear I've added velcro to. I'm looking for ideas on how the older girls are managing, especially during that time of the month. I've heard of those wearing boy shorts, but then you need to take off the whole brace. If you'd like to respond privately, that's great also.

Thank you to everyone on this forum; you've gotten me through the last 6 months, since my 6 year old was diagnosed, and now my 12 year old. You are a wonderful, supportive group of people!

Linda

[Celia]

Oh Linda! That's not fun. Maybe you could wrap the crotch straps with moleskin so it doesn't get stained during the cycle and when it's finished, remove the moleskin? I can't think of anything else besides plastic. Lucky for us Deirdre is only 6 and hopefully not due for those changes until much later in life. I only got my period when I was 13.

[RugbyLaura]

Linda,

This is something I've wondered about too, although we're a couple of years away at the moment.

The velcro idea didn't work too well for us. Any velcro that was strong enough to hold was found to be uncomfortable so I ended up removing it & reverting to poppers.

Hope you find the answer (& let me know too!)

Laura

[Celia]

I was doing a search on pubmed by this one doctor and I found this beauty!!!! *oh happy happy day* :p It doesn't take much to make me happy :rolleyes: I'll be gone all this week since it's our followup in Montreal. I'll try to upload the article when I have a chance.

1: Ortop Traumatol Rehabil. 2005 Feb 28;7(1):28-35.

New conservative treatment of idiopathic scoliosis: effectiveness of therapy.
Karski T, Madej J, Rehák L, Kokavec M, Karski J, Latalski M, Ka³akucki J.
Background. This article provides basic information concerning a new conservative treatment for idiopathic scoliosis, with appropriate asymmetric flexion-rotation exercises and special redressing positions. Material and method. The analysis was based on 288 children with scoliosis and a control group of 268 children. The authors describe the most important exercises and provide a statistical analysis of treatment outcome in children with idiopathic scoliosis. Results and Conclusions. Early detection of the risk of scoliosis and correct therapy through new conservative treatment based on exercises make it possible not only to limit the progression of spinal deformity (61%), but also, in some cases of incipient scoliosis, to reduce the curvature (32%).

PMID: 17675953 [PubMed - in process]

[cherylplinder]

I am praying that all continues to go well with Deidre. Enjoy the city. It should be beautiful this time of year!
I look forward to understanding the entire article you posted.

[RugbyLaura]

Good luck Celia & Deidre!

[Olivia'smother]

I don't know if anyone can help us, but my daughter has had her brace for only a week now. We have been using bodysuits, but her legs have gotten so uncomfortable (even with moleskin on the straps) that I have bought her boyshort underpants. For those of you who use them, does the entire brace have to come off when your child uses the bathroom? I am thinking that it will be a much more comfortable (and cheaper) alternative, but am afriad it may be too much to endure if the brace has to be entirely removed several times a day. Thank you.
Amy :confused:

[cherylplinder]

Rachel pulls the center of the crotch to the side for urination like you would in a swim suit. She does not take the whole brace off.She also tucks the crotch straps in the back of her brace or snaps them to an extra snap. She takes the whole thing off for a bowel movement.
Hope that helps.
She wears boy short underwear.

[RugbyLaura]

Poor Olivia, it's quite distressing at first isn't it. But so much better than the alternative....

Imogen has been lucky as she's had very little discomfort and we don't even use moleskin. The small amount of rubbing that she had (at about a week in) we were told to try to live through as the skin would toughen up. It did & she has no sore bit at all now.

I don't know if this helps but stick with it, it will get better!

Laura x

[Celia]

Hey All,

I`m updating from Ste Justine in Montreal and Deirdre`s curve is stable. She went up 1 degree to 2 degrees!!! :eek: Does this mean I`ll have to change my signature from 1 to 2 ??????! :D Anyway....the clinic was very busy with lots of kids waiting for adjustments etc. We`re staying in Montreal until Sunday and plan to enjoy the sights before the kids return back to school in a couple of weeks. Hope everyone is well! I haven`t had a chance to read up on all the posts yet. I can`t wait to hear about Gerbo`s experiences with the osteopath. Cheryl, are you planning something similar for Rachel??? I love you guys!

[christine2]

AWESOME Celia!!

[desheah]

celia,

that's great! :cool: congratulations and have fun in montreal!

deshea

[gerbo]

keep on enjoying yourself, don't forget to smile a lot.

gerbo

[cherylplinder]

Celebrating with you! I'll toast you tonight!

Gerbo,

Do you have any input about the osteopath?

[RugbyLaura]

Celia, so pleased everything went well. Have a great 2nd holiday!

[MATJESNIC]

Celia,

I am very happy for your family. Please read about our pre-op experience today in the surgery thread.

[Celia]

Thanks everyone for the good wishes! :) Melissa, I've read the pre-op thread for Nicole and I can't believe it's so soon. Is Nicole still wearing the brace? Her curve is really sky rocketing. I hope it doesn't get too far above 60 degrees before they do the surgery.

[MATJESNIC]

She is not wearing the brace. I agree that her curve is progressing quickly. That is why I can't wait to have this done. But they still believe she is at a 0 or maybe a 1 risser. I can't imagine what it would feel like to have to wait any longer than a few months. I feel fortunate that I got her on the schedule when I did.

[Celia]

Hey Melissa,

There was something about how rotation on curves above 60 degrees could pose problems later in life - I can't remember if it could result in progression years after surgery. The article was written quite a few years ago and new surgical techniques have probably obliterated this problem but it's something you should definitely ask dr. Dormans. I'm not saying this to worry you but I think it's really important to keep the curve low.

[gerbo]

following our last disappointing visit to mr mills we had a great but all too short holiday. fries with peanutbuttersauce (or satesauce) were delicious as ever. (celia; if you like fries and you like satesauce, you will love fries with satesauce, if you never have had it, very easy to make, i can give you recipe)

anyway; back to reality and wednesday we'll go back for a further review following some advice mr mills received from canada about alternative ways of using straps; whether it will be any better?? very, very nervous about it. Further xrays will be made so we'll know if progression is ongoing.

I know that if there is any significant worsening, our only remaining non-surgical option to consider/ try would be a german made cheneau brace, but how i would sell that to lisanna, i don't know...... (don't know if i could, she would be so, so upset.....)

gerbo

[cherylplinder]

I received an encouraging call from Dr. Coillard yesterday. I emailed them with some questions about Rachel, and she called me to talk. I wanted to know if I should start to look for a surgeon as Rachel's curve had increased at our last visit. I wanted to know if her out of brace measurements would be the same as in brace. I wanted to know if her increase in the lumbar curve would lead to a longer fusion.
She said that althought the curve had increased and the out of brace x-rays would not neccessarily be the same as in brace, Rachel was a long way from needing surgery and there was no need at this time to pursue an orthopedic to follow her in the US. She also reassured me that the increase in lumbar curve was compensatory and would not lead to a longer fusion, if Rachel progressed to surgery.
She offered to see her again as soon as I would like to evaluate her, as she is growing rapidly at present.
Once again, I am grateful for physicians that go above and beyond the call of duty.
With a 38 degree curve at risser 0 in January of 2006, and 5 to 7 inches of growth left, Rachel would already have progressed to surgery at her current 4 or 5 inches that she has grown in the past year and a half. She has progressed some since her last visit, but she is about half way through the growth left and is very balanced and happy. At 26/26 she is still less than 38/27. It is a lot to be grateful for.
Caring physicians that compassionately call and answer all your questions with concern are amazing. I can't believe how blessed I am.
And with all my great friends, I am always reminded that if she progresses to surgery, there are a lot of great surgeons out there and surgery can lead to wonderful outcomes! At present, we are using the most comfortable, effective brace for her curve.
That is certainly the best I can do.

[gerbo]

it helps when they care and give the impresion they are actually bothered......

[MATJESNIC]

Cheryl,

I believe that Spinecor has done wonders for Rachel. No matter what the end result is, you certainly made a great decision. I wish for you that Rachel (and all the others on here) will avoid surgery.

Gerbo,

I am thinking about you and your beautiful dancer daughter and wish you all the best? How is the ballet going? Did she start with that company?

Celia,

I can't remember the name of the technique that Dr. Dormans is using (I should have written it down). But he will be de-rotating Nicole's curve very significantly. He said she will definitely require some blood because of this. He expects her curves to be down to a 15 or less. He said some surgeons are too greedy and actually make problems by going to0 straight. In his 20 years of spinal fusions (about 2,000), he has had only one patient who required a second surgery. He is always looking to the future to try to avoid as many complications for his patients as possible. He is tops in his field and I have complete faith in him. Turning over a child to someone is very difficult. But I believe I am at peace with this because of him. It also helps that Nicole likes him very much. .

[Celia]

Melissa,

I don't doubt for one minute that dr. Dormans is an excellent doctor! If he has performed 2000 surgeries, he obviously knows what he's doing. However despite expertise and experience, doctors are limited by techniques which at times may be less than perfect. I'm sure what they can accomplish nowadays with significant curves is nothing short of miraculous. We all hope and pray Nicole suffers no complications from this surgery either short or long term. Only *positive* get well soon thoughts are going your way. You know me.... I'm a worry wart and when I read that her curve is sky rocketing I started to worry. :( I have a hunch anything I say at this point will just make you and Ed more nervous so I'll just keep my fingers away from the keyboard from here on end. Mums the word! :D

Cheryl,

Dr. Coillard is an amazing, brilliant doctor!

Gerbo,

I hope the appointment goes well!

[MATJESNIC]

Celia,

You didn't say anything to make me more worried. I appreciate everyone's concern and good thoughts. I believe we are all here trying to help each other as best as we can. I know that all of us parents have each other's kids' best interests at heart. I am thankful for this forum every day.

[gerbo]

melissa, lisanna had a great week, dancing 8 hours a day during her "summerschool". From now there is a few sundays with final rehearsels with the big performance in London's west end planned for the 14th of oktober, followed by some more performances in a smaller venue during the "fall" (autumn we call it) holiday towards the end of october. She thoroughly enjoyed herself and we just pray we are not giving her too much freedom......

this dr dormans sounds very sensible and with 2000 surgeries behind him, he surely has the experience. It sounds that you are in good hands

best, best wishes to you all

when is she due to be operated on?

[cherylplinder]

Gerbo,
I must have been typing while you were posting and didn't see your post until today. I'll be thinking of you. Best of luck.
Cheryl

[MATJESNIC]

Gerbo,

Lisanna's dance experience sounds wonderful. I am so happy for her. Our surgery date is Sept. 12. It was so strange not to sign her up for her usual 7 classes. I will be saving lots of money on classes, competition fees, costumes, etc. My goal for her is to take one tap class in January and just not do any twisting or bending. We shall see. One step at a time. Anyway, thanks for the well wishes. I will keep you all posted. Meanwhile, my 17-year old is driving to work for the first time alone. Now that's what I call stress.

[Celia]

... fries with peanutbuttersauce (or satesauce) were delicious as ever. (celia; if you like fries and you like satesauce, you will love fries with satesauce, if you never have had it, very easy to make, i can give you recipe)


Well then you must give me the recipe! :D

[cherylplinder]

I want the recipe too!

[gerbo]

me and my promises; on reflection realised that , like any good cooke, i do not work to recipes and "make it up as i go along", adding ingredients as I go along. however, the basic idea is this

heat half a cup of milk in a saucepan (make sure not to burn it), when hot start adding peanutbutter (have they got that in USA/Canada??), this will soften in the hot liquid, keep on adding till you got a sauce of a nice firm consistency (not too soft, should not drip of a spoon)

this is your basic sauce, which needs a bit of spicing up, for which you use some tomatoketchup, 1-2 teaspoons of sojasauce ("ketjap") sambal (very hot paste, based on chili-peppers, surely there is a usa equivalent)

some added fried unions (finely cut) or fresh fried garlic will add to the taste sensation.

eat it with rice dishes, pasta, meat and ofcourse with fries

bon apetite!

[gerbo]

melissa; we try to let her enjoy the dancing whilst she can as we realise that at some stage "events might overtake" and put an end to it.

what have you been told about nicole's bility to move/ bend and even dance after surgery? I have this image in my head of "irish dancing", with the very straight back, being the only option, but assume that is too pessimistic....

what hospital is she going to be in, how long will she be in for??

[MATJESNIC]

Gerbo,Nicole and I always joke that it is too bad she doesn't do Riverdance with the straight back. We are fortunate that Nicole's passion is tap. But of course there is still bending and twisting. We were told that after a year she can do everything. But it is difficult for people to describe what the spine feels like after fusion. One doctor said it will be stiff. Obviously there will be moves that require more flexibility than she will be able to do. Yet, her dance teacher knows of two women with Harrington Rods who went on to become professional dancers. I am sure the length of fusion plays into it. Some may only be fused on top which is not as flexible of an area to begin with. I have met girls who say that still do flips into the pool after a fusion. I think the body adjusts somewhat.

Thankfully Nicole is not one of the best at her studio. This is only for fun. These girls are her friends and dance is her social scene. But she will be going to high school soon and perhaps this would have changed anyway. Her goal was always to dance here until she goes to college. I am hopeful that in some capacity she will be able to do that.

She is having surgery at Children's Hospital of Phila. If all goes well, she will be there for 5 days. The first day will be spent in ICU. It takes us about an hour to get there. But is only about 30 miles away. Are you familiar with Phila? The city has a lot of rich history there. Not to mention the famous cheesesteaks.

[cherylplinder]

Gerbo,
That sounds delicious! I have never had that!
And, yes, we have peanut butter in the USA.( lol )I think peanut butter was first made by George Washington Carver in the 1800s.
I'll have to look for the equivalent of the soja sauce and sambal.
Thanks

[Celia]

We also have peanut butter here in Canada. :o :o However....as a substitution for the samba ingredient would walrus fat do? ;)

[gerbo]

no, things are not going well at all, i am sorry to say

back at mr mills today, who spend an enormous long time with us, and very patiently tried to make a difference.

following instructions from dr coillard he tried a different configuration of the straps, which on the scolimeter gave a much reduced rotation of 5 degrees, however our raised hopes were squashed very quickly following the x ray which showed a 33 (lower, original) and 26 degree upper curve.

back to the old set up, which resulted in a 28/28 curve, well balanced maybe, but worse than 9 months ago, when the prim curve was below 20 degrees.

i feel that the next few months i need to work on Lisanna and see whether she would accept a german hard brace as our last non surgical option. I am not hopeful, it would be such a blow to her and one wonders whether to accept eventual surgery as the best and least stressful option

[MATJESNIC]

Gerbo,

I am so sorry to hear that news. Personally, a good selling point for the brace would be that it is only temporary where the surgery is more permanant. I would really try to get her to at least go to a brace fitting and see what kind of correction she could get.

Anyway, I am off to the shore for a couple of days. I am thinking about you and wishing only the best.

[cherylplinder]

Gerbo,
I'm sorry for the news. I'll be praying for you as you decide which course to take.

[Celia]

Our dear friend Gerbo! I wish I had words adequate enough to ease your worries during this very stressful time. There are so many variables at work and it's difficult to know which path to take. If it were me, I would put her in a cast..... but you know kids :rolleyes:

((((hugs))))

[gerbo]

inadequate words most gratefully received.

plan; tightening up on physical therapy, i.e twice weekly torsorotation like we did the first year, ongoing osteopath input, looking into specific spinecor physio, tightening up on brace wear and slowly starting to introduce the thought of changing to a criminally cruel hardbrace if in january further deterioration.

sounds easier than it feels at the moment

gerbo

[RugbyLaura]

Hi all,

Just returned from the Lake District which was beautiful! I shall post some pictures for you when I learn how, the scenery is similar to that in Celia's photos but without the moose!

Sorry to hear about Lisanna's latest appointment. I am amazed as her back looked completely straight to me last week. You would definately see Immy's from the distance I was. She's such an elegant dancer with a beautiful smile. Isn't it strange how our girls' paths have crossed and we wouldn't know if it weren't for this forum?

The recipe looks great, I shall definately give it a try. Can you get all the ingredients here?

Love to everyone & good luck at all appointments - Immy's next one is 21st September. She seems to have grown quite a lot over the summer & now looks taller than some of her friends, which is quite strange as she's always been such a shrimp (nickname "Midget").

Laura x

[RugbyLaura]

Hi all - quick question for you:

No 4 strap seems to be much tighter over the past 2 weeks. Immy has not complained but I notice her fiddling with it a lot and her right shoulder looks even lower than usual. She looks quite odd from behind when wearing the brace. Also the popper has come undone a couple of times - once during the night so we have no idea how long it was off for :eek: Has this happened to anyone else? Could it be to do with the recent growth? Do you think I should contact Mr Mills or wait until 2 weeks on Friday?

Thanks,
Laura

[Celia]

Hey Laura,

We just got back from a mini vacation to the lake too! It was awesome! I don't think a vacation is quite complete without a moose or a black bear in the background :D :D As far as I know the straps should never be loose, unless the doctor or orthotist specifically states that the it should be so. Deirdre's # 2 strap is loose to prevent an upper kink that was brewing but hopefully that's under control.

[Celia]

Deirdre was complaining of neck pain over a year ago and I dismissed it. I also noticed a bulge on the right side developing which I believe could have been a muscle spasm and my theory is this is what's causing the little kink to develop on the upper right side of her back. This kink is not larger than her primary curve but nevertheless it worries me because it just popped up and has never resolved and I'm worried it can become structural over time. I read somewhere that muscle spasms can be a contributory factor to scoliosis. I think Osteopaths routinely work with muscle imbalances and would hopefully help :confused: Don't they normally deal with torticollis in infants? I'm trying to stay calm but I'm a nervous wreck *sobs* given recent developments with some of the children in our group.

[summerfun4]

Yes, our #4 strap tends to unsnap quite often. Some days it seems tighter, too, and I'll have to be sure to lift the bolero (sometimes lifting my little one right off the ground!) to be sure it's pulled up high enough when we put the brace on. I have a little piece of velcro which is used to secure the #4 strap to her other strap in the front, just to keep it on her shoulder. The problem is her shoulders are so tiny and the straps are so large!

There are some mornings the #4 is unsnapped. In the summer she tended to sleep in just the brace and bodysuit, so we started putting jammy shorts over it so it wouldn't rub on the bed. Definitely helped, but it still happens.

We have a right thoracic curve, so I'm not sure if we're on the same strap setup as you are.

Linda

[cherylplinder]

I sewed a shoestring on Rachel's 4 strap and threaded it through one of the unused snap openings close where it snaps. That way if she comes unsnapped, she is still held in the night. Dr. Coillard saw my little contraption last time and did not object. Her 4 just wouldn't stay snapped, even the same week of an adjustment, when I knew her tensions were optimal. Changing the snap didn't resolve it, so I went to the shoestring. My only concern is that it might hold her at tensions that were not meant to be held, but so far, everthing has been OK.

[RugbyLaura]

Thanks guys! Yes, sounds the same, Immy's curve is right thoracic at T9. Sounds like #4 undoing is quite common, Immy's has only come undone a few times so nothing to worry about....

Out of interest, how do you all schedule time out of brace? During term time Immy has about 15mins out in the morning to wash & change body suit & then 2 hours in the evening (3 on Mondays & Tuesdays when she dances for longer). On Wednesdays & Fridays she does P.E/games at school & she takes the brace off for this too. On Saturday mornings it's off for 3 and a half hours while I wash it, but then only for half an hour in the evening. Sometimes I feel a bit guilty that I'm not sticking to the 2 hour rule & I probably lie to myself a bit to keep sane! Immy has no sores & hardly ever complains, it's really not too bad - lets just pray it's working!

Thanks again,

Laura

[MATJESNIC]

Laura,

We were told to take our breaks when Nicole was just sitting quietly watching tv or doing homework. She did all of her phys. ed and all of her ballet, tap and jazz in her brace. She just didn't wear tights. The only times she took off her brace while active was when she had to be in costumes for recitals or dance competitions.

[christine2]

Hi Laura
Now that the weather has become cooler and school has started my daughter is only out of brace for 10 or 15 min in the am to change her bodysuit. In the evening she showers and wants her brace back on right away so the is no more than 15min. I wash on Sunday afternoon 2 hours out. I almost feel as though she wears it too much but I am not going to complain about that. She does all activitys in brace. Except of course swimming. She figure skates, plays, gym class, everything in brace (her choice)

My daughter has one spot over her hip that is irritated but the skin has toughened up so it it more like a red spot than a sore now. Dr Coillard gave us a neat pad that slips right onto the band and that seems to help.

It seems to me that our children are much more compliant in spinecor than they would be with the hard brace so I feel very fortunate about that.

Christine

[summerfun4]

Today's our first day of school, so we'll see if this routine holds! My six-year old plans to wear it all day, for gym, recess, etc. She'll come home and get her break, take her bath, etc. We usually take one long break about 3 hours; I don't think we've ever taken 2 breaks of 2 hours. We're not usually home for separate periods like that.

My 7th grader is planning to have it off for gym right now, since we've only had the brace about 3 weeks and she's not ready for running, situps, etc. in brace. We're trying to work out how she's going to get it back on without everyone seeing it, a major issue when you're in 7th grade. So she's also probably going to have one long break at school, about 3-4 hours, at least for the time being, until she starts wearing the brace to gym class. Add in her shower time, that definitely puts us over the limit.

We're trying to do everything we can to ensure they'll wear the brace as much as possible, by keeping them as comfortable as possible. They will both wear the brace without complaint, which I know is waaaaayyyyy better than the compliance I would have gotten with the TLSO. My six year old's curve went from 30 to 6, so even with the long breaks, it's definitely helping. I'm more nervous about my older one, who's already at Riser 2 with a 39 degree curve. She came down to about 31 in brace; we'll see in October how it's holding.

Sorry for rambling... this support forum is incredible and has kept me sane these past 6 months! :)

Linda

[mariaf]

My daughter has one spot over her hip that is irritated but the skin has toughened up so it it more like a red spot than a sore now.


I had been told when David wore a brace that witch hazel also toughens up the skin. It did seem to work.

[Celia]

Has anyone noticed that the shoulders in the Spinecorporation case studies are all level????? In case #1 , the patient started out with a 38 degree curve and the shoulders were level more or less throughout treatment? Does anyone know whether the shoulders should remain level? I know twisting is involved for the corrective movement - how about uneven shoulders? I think what's causing the problem in Deirdre's case is the right shoulder is being pushed higher than the left and things look very asymmetrical. The slightest imbalance to posture can throw the whole spine off and start a vicious cycle. I was looking at the Spinecor Manual on the SRS website (refer to
P 9-10) and it doesn't look as though there should be a shoulder tilt for Deirdre's curve classification which is T8/T9. The shoulder tilt is reserved for high thoracic curves located near the neck. It looks as though there should only be detorsion of the shoulders and thorax and this is why we're getting this crazy stuff happening to the neck area.


http://www.srs.org/professionals/bracing_manuals/section13.pdf

http://www.spinecorporation.com/English/index.htm

[jillw]

Hello,

My daughter, Katie, was diagnosed with scoliosis two weeks ago (just a couple days before her 7th birthday). As many of you can relate, I'm sure, I am heartbroken. In any case, the idea of her being put in a Boston or similar brace for the rest of her childhood and a decade or so (and still having to worry if it will progress to surgery anyway because she has so many of years of growth ahead of her) is an overwhelming thought.

For the first week following the diagnosis I was up all night every night trying to learn as much about scoliosis as I could. I have read almost all of the posts in this this thread (that took several nights! :) ) I am so hopeful that something like Spinecor might work for my daughter and in some ways she seems like she might be an ideal candidate at this stage. I have followed the journies you are all going through with hope and have felt your victories and disappointments.

Because I read so much and because I am still a bit sleep deprived, I don't remember each of you by name yet so I am very thankful to those of you who posted signatures that summarized your situation!

Melissa, I am thinking of you and I wish Nicole all the best with her upcoming surgery.

My daughter enjoys dancing as well so the concept of being able to move while braced is attractive to me as well (not to mention it just seems to make sense that a torso at work would be better off than a torso that was restricted for a decade or so). Gerbo, I too have wondered it if comes to surgery what kind of ability to dance would be there later. Although my daughter isn't a serious dancer at this age yet, she seems to enjoy it more than sports such as soccer, softball etc ; it seems to be her favorite way to keep physically busy. She was invited to join the competition tap/jazz team this year and it seemed to me like dance was emerging as a primary interest (but she's still so young that I don't know if that would change?) And I had to smile because I, too, was thinking that Irish Step dancing might be more conducive with a stiff brace or surgery!

Cheryl, Katie seems to be where your daughter was at the beginning...she has a 17 degree thoracic curve with a "small compensating curve" from T4 to L2. That is all I was told so far and I'm not sure if that t4 - L2 reflects the primary curve only or both curves? I have since contacted the orthopedist to find out where her apex is and the measurement of the second curve, but he was on vacation last week and I haven't heard back yet. She just had an MRI yesterday to (hopefully) rule out any other cause such as neurofibroma, etc) ANYWAY, I see that Rachel's curve jumped up to the high 30s when she was 10. Would you mind telling me what happened in those years? Were you "watching and waiting"? Was she in a different kind of brace? Did it grow gradually or did it maintain and then jump up quickly?

Our orthopedist is referring us to the Shriners in Springfield, MA (Dr. Masso?). I see that the Shriners in Erie will fit for Spinecor...does anyone know if they do enough of it to be "good" at it?

Also, I saw the most recently published results with spinecor but in that study they specifically EXCLUDED those they treated/were treating with juvenile scoliosis from their results. Has anyone seen any sort of data related to results for those with juvenile scoliosis that were treated with spinecor?

Well, although I have other questions, I see my post has gotten very long so I suppose I should sign off for now. But I also wanted to say thanks for getting me through some very long sleepless nights!

Jill

[cherylplinder]

We were watching and waiting. Rachel was not braced from 7 to 10 years of age. Her curve stayed in the 17 to 18 degree range for 3 years before jumping 20 degrees in 1 year(2005)
I asked for bracing at 17 degrees and the ortho told me that bracing would weaken her trunk muscles and make the scoliosis worse. The Boston or TLSO would weaken the trunk muscles. He was completely uninformed about the Spinecor brace and could have cared less when I told him about it after the Boston did not correct her any and we were looking for treament alternatives.
If you have any other questions, fire away. My e-mail is cherylplinder@hotmail.com, if you get tired of the constraints of this forum.

[rtremb]

Jill:

I am new to this forum too.

Our daughter Esme's curves progressed from T17, L18 to T40, L38 in eighteen months when she was 11 - 12 years old. We were not warned by the doctor her curves could progress so quickly. She grew 3.5 inches in the eighteen months which, we were told, is why her curves advanced so fast.

Her brother has scoliosis too but the pattern of changes in the curves was very different for him.

Had we known about the Spinecor brace we would have encouraged her to wear it much sooner when her curves were much smaller. The Spinecor brace was never mentioned by the doctors at the hospital here in Ottawa even though we live only one hour from where it was invented!! Needless to say we are not too impressed that the only option we were given was "hard shell" bracing.......anyway, we are now going to Montreal to see Dr. Rivard at the end of September to get a Spinecor brace for our daughter.

I hope if your daughter has to wear a brace she can wear the Spinecor which will not impede her ability to continue dancing.

Ruth Tremblay, Ottawa, Canada

[Celia]

Hey Ruth :D A fellow Canadian!!! :p I was feeling kind of lonely being the only Canadian on the Spinecor thread. Ottawa is not far at all from Montreal so it should be really easy for you.

Jill, I've heard really good things about Dr. Sanders and he's tops as far as I can tell....however I've heard some conflicting information about the orthotist that does the bracing for him. I don't know if it's lack of commitment to the craft but there was one child whose curves actually progressed on initial fitting which is weird when you think about it. The nice thing about getting the brace through Erie is that it would be free of charge.

[MATJESNIC]

thank you, Jill and I wish you good luck with your daughter. What area do you live in?

[joannemadden]

IN August we took my daughter Megan to Montreal for her first post brace check up. She had a growth spurt (height) and was basically the same...no better, no worse. They didn't give us much information besides that, which was disconcerting. We are I guess more accustomed to having more details about progress, etc.
Anyway, Dr. Colliard did adjust the brace and tightened the shoulder area considerably. When we left Megan had an extreme headache, and now sometimes has headaches. We also noticed that the shoulder portion seems pulled down and her torso appears more twisted.
Any thoughts from anyone....experience with this? :confused:

[rtremb]

Joanne:
I'd go back to the hospital to get the brace checked - your daughter shouldn't be having headaches.
It is really good that your daughter's curves didn't increase when she had a growth spurt - the Spinecor brace must be working?

[christine2]

Hi Celia

My daughters shoulders are definatly uneven. She has also had some muscle spasms in her neck. I have brought it to Dr. Coillards attention and she is not concerned but I am keeping on top of it.

Jill welcome, this is a great group on parents.
We go to Montreal and are VERY happy!! We drive 7 hours one way but I find it is well worth the trip. I do not in any way question their dedication to helping my daughter. It seems to me after the research I have done that at your daughters age she is an ideal canadate for spinecor. If you have any ? as to the capabilitys of the doc you are looking at perhaps you should call Dr Rivard in Montreal. He will tell you if he is comfortable with this docs abilitys. Dr Rivard is very easy to talk to and will give you his honest opinion.

[Celia]

It's interesting that a few of the kids are getting headaches. I can only speak from personal experience but I'm almost certain that the shoulder tilt is what's contributing to the kink on the vertebra, headaches and muscle imbalance on the upper right hand side. A year and a half ago dr. Rivard assured me that it was postural and maybe it was at the time but I fear that if this problem isn't addressed soon enough that it will become structural and then we'll be dealing with a high thoracic curve which is not so easy to treat. At this point in time, the problem seems very easy to correct and that is to keep the shoulders level. I'll have to phone her next week and discuss this with her.

[momw/scoli]

I say ditto to everything Jill said. I wish I read all the posts before my daughter was fitted for a Boston Brace. My DD never mentioned Spinecor and when I asked him about it he said it wouldn't work.I think if we had started with the Spinecor my oldest daughters curves might have stayed the same. If my girls get fitted for the Spinecor I plan on calling the local newspaper and getting the word out about other options. I am traveling 10 hours from one end of Texas to the other end. Does anyone go to Dr. Marco in Houston? That's the best option for us. Montreal is just too far. Tell your Doctors there is a mom in Texas who wants to hug his neck for inventing something to replace plastic "torture chambers" or "Lucifer" as my daughter refers to her brace.
Melissa, I think everyone who reads these posts will be praying for you and your daughter on Sept. 12.

Becky
Mom to Brandon 15, Emily curves of 36 and 38, and Callie 9

[RugbyLaura]

Hi Gill, Ruth & Joanne,

Welcome to the Spinecor thread. I don't know what I would have done without it over the last few months. I wish you all luck with your Scoliosis Journeys (and everything else in life!). I only found out about Spinecor through this forum and dread to think how life would be without it. I know this sounds melodramatic but we have the rigid brace at home too & Imogen's life would have had to change enormously; she would have lost regular contact with many of her friends (through stopping dance).

Gill, whilst it's horrible that Katy has Scoliosis it's fantastic that you've caught it so young and with such a small curve. I only wish we had. I thoroughly recomend Spinecor and hope Katy enjoys the competition team.

Ruth, I hope Spinecor can help Esme. As you'll know from reading this thread, we're in a similar situation.

Joanne, Imogen doesn't get any headaches but her shoulder is pulled down and back. Mr Mills says this is part of the treatment, but I will follow it up at our next appointment in 2 weeks.

Thanks everyone else for you input re time out of brace. It really helps to hear about other peoples lives with Spinecor; helps us to feel "normal". Most other things in life we'd discuss with our friends and share experiences. It's great to have found some new friends who understand this particular issue!

Thanks, Laura x

[Sherie]

I am traveling 10 hours from one end of Texas to the other end. Does anyone go to Dr. Marco in Houston?

Hi Becky

Here's our story: I took my daughter to Dr. Marco to be monitored. She'd already been fitted in the Spinecor by Dr. Smouse here in Houston, he's a chiropractor. Dr. Smouse has been using the spinecor since 2003 so he has a lot of experience and was the only one here in Houston until last year. The only problem with Smouse is he put my daughter on a very expensive therapy program that wasn't doing anything at all, after 3 months of that and no improvement, we quit seeing him. I didn't know what to do at that point then I looked at Spinecor's website and noticed Dr. Marco had also started using it. We were their first patient to be seen with the brace. Dr. Marco used Dynamic Orthotics to actually fit the brace, that was a separate appointment. We saw Dr. Rigo at Dyn. Orth. and he adjusted the brace after studying it, I was very impressed with him then we went back to Dr. Marco for follow up xrays. I really like Dr. Marco, he's not pushy about surgery and will listen to your concerns. Unfortunately, the brace wasn't successful, I believe my daughter's scoliosis was too far advanced when we started it.

Basically, there's an initial consultation, the brace fitting and follow up xrays (3 separate appts on 3 different days for us). Are they going to do that all in one day since you're travelling so far? You might want to check, sometimes the people who make the appts. don't realize these things.

Good luck, let me know if you have any more questions.

[rtremb]

Sherie:
What were your daughter's angles when you first got the Spinecor brace?

We have an appointment on September 28th to see Dr. Rivard when he will decide whether to let Esme have the Spinecor brace - this decision will be based on whether he thinks it will work for her or not.

It is really hard having to wait so long before we can see him (especially for Esme) - think I'll call on Monday and see if they have a waiting list for cancellations since we are so close!

[Sherie]

Ruth,

Sheena's curves were about T33, L43 (I didn't take good notes but I know for sure the lumbar was that and they're always about 10 deg. apart). There was only a few degrees correction on the initial fitting, I think that's probably a good indicator of wether the brace will work or not, most of these kids are getting good correction on the initial fitting. At the 3 month mark, there was still no correction, after that, we saw it steadily progressing even in brace.

In hindsight, I would have made that trip to Montreal for the initial fitting to make sure it was done properly but I didn't really know better at the time and Dr. Smouse is just a 15 minute drive from my house, so it just made sense to see him.

[rtremb]

Sherie:

Thanks for your quick response. I don't know if you saw my post under diagnostic but there is some debate about Esme's exact present Cobb angles. If radiology is correct and her angles are T42 and L38 she would be a possible candidate for the Spinecor - we are hoping their readings are the correct ones! They have done the measurements twice now.

The surgeon says her angles are T52 and L48 but he was measuring on the computer whereas radiology uses the actual film. I don't know if this makes a difference in the outcome - the orthotist says it can in that it is hard to draw the lines accurately on the computer.

Esme has recently had a Charleston night brace made which addressed only the lower curve but in this brace her curve was adjusted to L15 so there must still be some flexibility in her spine. (She can't wear this brace because it is too uncomfortable - she can't get to sleep in it.)

The chiro is working on loosening up the muscles around her spine with the moving bed and massage. Esme is also doing arm punches to strengthen the muscles on the concave side. Hopefully this will help if she gets the Spinecor in that her back muscles will be loosened up and allow her spine to move. She has never really been braced because the two night braces made for her didn't work even though they gave excellent correction.

I am probably over-thinking this but can't help it!!

[Sherie]

Ruth,

I did see your post about the confusing readings. We've had both full length and digital xrays and they were all quite comparable, maybe a few degrees difference. I have the digital xrays on cd and I can even measure them to the same degrees the doctors got but even with the digital, the doctor would have a film of it and measure it the conventional way, he didn't use the computer tools. I don't understand how they're getting such drastically different results. We'll keep our fingers crossed that it's the lower readings.

I don't think you're overthinking at all, there's a small window of opportunity to do whatever possible to stop this before surgery becomes necessary. You're doing the right thing.

[rtremb]

Thanks Sherie. This whole thing is so overwhelming and the thought of surgery is so hard - it helps so much to be able to chat with people in the same situation.

[Celia]

Cheryl,

I tried sending you a P.M. and your mail box is full :o

[momw/scoli]

Sherie,
Thanks for the advice! I feel so alone in West Texas. I will definately call and see when they have the brace fitting. We are trying to get the appointment over all in one day. That's what we do when we travel to Fort Worth.The day we booked our flights Dr. Marco's office called to change our appointment from the September 6 to the 20. We lost $100 just to change the flight. I think the receptionest told me they have orthists that travel from Europe to help fit the brace. I am afraid it is going to be too late for my oldest daughter. Her curves are 36 and 38. A year ago they were both around 31. My nine year old hasn't had x-rays yet. I had a P.A. check her this summer at a Dr. appointment and she noticed her left lower lumber was slightly higher than the right when she bent over. I pray that it is nothing! I don't know how we will handle two girls in back braces. I guess I'll come to this forum and vent. I'm sorry your daughter is having surgery. The Doctor in Fort Worth told me my older daughter has about a 50/50 chance. I'm sure the fact that she's only wearing the Boston about 14 hours a day isn't helping matters any.
September 20 can't get here fast enough! Did your daughter wear any other braces or just the spinecor?
Thanks,
Becky

[Celia]

I revisited the 40th annual SRS broadcast to see some of the criteria for success as one would naturally look to successful examples for common characteristics and it appears that in both cases presented, where remarkable outcomes were observed, shoulders were level throughout treatment.

08:48am SURVIVAL ANALYSIS OF A GROUP OF 365 IDIOPATHIC SCOLIOSIS PATIENTS CONSECUTIVELY TREATED WITH THE SPINECOR SYSTEM AT SAINTE-JUSTINE HOSPITAL Rivard, Charles



http://www.istreamplanet.com/srs/default.asp?np=media&conf=3&edi=12
__________________

[Sherie]

Hi Becky

How old is your daughter? We found my daughter's scoliosis when she was 12, her lumbar curve was 25 at that time, so we were told to watch and wait. Six months later it had shot up to 35 and we were sent for a TLSO brace. She was not cast for it, they took a lot of measurements and then molded an off the shelf brace. It was extremely uncomfortable for her and she would end up taking it off in the middle of the night while she was half asleep, wouldn't even remember doing that in the morning. She just didn't do well, she wasn't sleeping, eating well and could hardly breathe in it (I'm sure this is not unusual, maybe other parents are tougher than I am) ,we finally said enough and I started looking for alternatives and found the spinecor. I thought that was our answer and had very high hopes; so it was very disappointing when it didn't work. Her lumbar is her major curve, that probably has something to do with it.

Don't be afraid to ask Dr. Marco questions, he's very nice and I think he has a genuine interest in his patients. We didn't have him do the surgery because he just didn't have the experience we were looking for but really took a lot of his time educating me about it.

I hope everything works out for your daughter. Please ask if you have any more questions.

[Celia]

Pat,

I tried returning your message and your mail box is full :p

[jillw]

Hello everybody, i'm having computer problems so I can't check in here as often as I'd like, but I wanted to say thank you to everyone who has responded to my post.

Melissa, we're located in the Albany, NY area so traveling to Montreal would actually be a viable option for us.

Ruth, you said that your daughter tried two sleeping braces and neither worked out. What was the other brace (the none Charleston one)...was it a providence brace? Was that one ineffective or was it that she couldn't tolerate the other sleeping brace either so wasn't using it overnight?

We meet with a specialist in NYC tomorrow and the Shriners in Springfield in two weeks. I see that Dr. Rivaud is scheduling out in the future so I should probably contact him now (I probably should have already contacted him) to get on his or her calendar. Is there a difference between Dr. Rivaud and the other one? (I forget her name at the moment). Do you generally see just one of them or do you see them interchangably?

Thank you!!!!

Jill

[momw/scoli]

Hi Sherie,

Thanks for letting me know about Dr. Marco. My daughter, Emily is 12. She was diagnosed at 11 with two around 30 degree curves. We started with the Charleston even though we knew it doesn't work as well for girls with double curves. The first six months the lumbar curve went to 36 and the thorasic went to 26. Emily's doctor really wanted to prevent lumbar surgery so he put her in another Charleston that only worked on the lumber curve. In six months the lumbar stayed the same and the thorasic went to 38. He then put her in a Boston this summer.( I honestly can't imagine wearing a Boston brace in Houston. It is sooooo hot!) She really hates that brace. She hasn't worn it to school. It is now lose on her and I really can't wait to get to Houston! She is wearing it about 12 to 14 hours a day. I hope her curves haven't gotten worse but, the thorasic acuallly looks better than it did this summer. If Emily ends up needing surgery we will most likely go to Cook Children's in Fort Worth. I really like the doctor. My aunt works for him and my good friend from college is a nurse at the hospital. I hope she is a canadite for the spinecor and we haven't waited too long. She has grown 4 1/2 inches in a year. She is now 5'4 1/2". I keep thinking she won't grow much more. I also have a nine year old named Callie. Dr. Marco will check her out to see if she has scoli. I'm sorry to hear your daughter needs surgery. It sounds like you have done everything possible to prevent it.
Becky

[rtremb]

Jill:

Our daughter's night braces were Charleston braces. The first was to address both the thoracic and lumber curves - it was making her arm go numb, pins and needles. She only managed to go to sleep in it once for four hours. An MRI was done to check for nerve complications - nothing was found.

A second brace was made in July 2007 addressing only the lumber curve - since the difficulty was with her arm it was not possible for her to wear a brace that addressed both the thoracic and lumber curves. This brace is also so uncomfortable that our daughter can't sleep in it. It pokes into her back and her arm (again). Lots of tears, no sleep.........

The night braces have not been a success for us. We are very disappointed this did not work out - it cost us six months of time making adjustments meanwhile our daughter's curves kept progressing. We did not know about the Spinecor brace - the only option we were given by her orthopaedic doctor was hard night bracing or hard day bracing.

Anyway, now we are going to see Dr. Rivard on September 28th and hopefully he will agree she is a candidate for the Spinecor brace. She is also now doing chiro three times a week, Pettibon exercises everyday 2X and Hatha yoga once a week. She is being a really good about all these various extra activities!

We chose to go and see Dr. Rivard not only because he is one of the inventors of the Spinecor brace but because he returned our telephone call within two hours of my husband leaving a message and has responded to emails same day. This is a time of high anxiety for us so timely responses from the doctors are really really appreciated!! We got an appointment with him three weeks from the date we requested one which we thought was pretty good. Fingers crossed he can help our daughter. We absolutely dread the thought of the surgery......

[leigh9p]

Hi everyone - we met with the ortho yesterday and as expected he wasn't encouraging bout spinecor. He said he'd heard of it and referred some patients to someone who did with no good results. Now he doesn't know of anyone locally so doesn't recommend it. I can't understand why as a Dr. he wouldn't want to know more about all the options. He basically said that only a very small group of people have Spinecor - not enough to see results. Ugh.

Anyway, we are meeting with Dr. Ron Marinaro next Thurs - as luck would have it - he is traveling up to San Fran to train a new Dr. up here and he said he could fit Taylor on that visit. All he asked for was her waist and thigh measurments and that I get the xray and report. Having read many of your posts, I'm wondering if the brace can be fitted that easily? I thought that the fitting was quite complicated and required a lot of skill? he said he's fitting 100 and that he travels around training new drs.

I just feel like I'm putting my daughters care in this man, site unseen. I had read about him on this site from Lori and I think there was one other person in LA who's seen him. Lori was told by Andrew Mills that the brace Dr. Ron fit on her daughter was "sloppy." so she is now seeing another Dr. in Tustin. Can anyone help me? Can she be fittied that easily?

Leigh, mom to Taylor, 14, T27; L22. risser 0-2.

[Celia]

Hi,

It didn't take any time whatsoever to be fitted with the Spinecor brace. My daughter had just turned 5 years old and Dr. Coillard had to find the smallest size pelvic base to fit her since she is very slender. The fitting took no more than half an hour. My current pet theory (this one's a keeper! :cool: ) is that the shoulders should be level and this is critical to success unless of course your daughter has a high thoracic curve.

[RugbyLaura]

Leigh - is there anyway you could check this guy out through Montreal, I understand they're pretty good at responding to emails. Imogen's fitting was quick too. The components of the brace come in a few sizes so he needs to know approximate size required. The xray will tell him about the type of curve and he will use make-up pencil & various tools to establish everything else he needs to know. I'm sure it'll be fine, he sounds experienced and Spinecor would not let him train others if he were "sloppy". Was this some time ago?

Celia - How high are we talking??

Laura

[Celia]

According to the Spinecor manual (I pasted the link on the previous page) a thoracic curve with an apex between t7-t10 would only include detorsion between the shoulders and the thorax as the principal corrective movement with no shoulder tilt. A curve with an apex above t7 would have a shoulder tilt. I can't find any other curve combination in that manual other than one with/including a high thoracic curve which would have a shoulder tilt as one of the principal corrective movements. It's my observation that many of the children whose curves are progressing or are having unusual symptoms such as headaches/muscle spasms in the neck area have their shoulders tilted. Deirdre falls into the latter category as she's developing a kink on one of the upper vertebra which will undoubtedly lead to problems as time goes by.

[RugbyLaura]

Thank you Celia, I'm obviously far too lazy to read it myself :p Actually it's more like I have trouble following the manual :eek: Thank goodness I have you to pick out the pertinent points! Anyway, armed with that info I shall certainly be looking for answers from Mr Mills next week. Will let you know what he says.

Laura

[Allegra]

I can officially post here because i have a spinecor!
i know all of you had a discussion on the straps already, but has anyone had problems with strap #4 slipping?
its not a real problem yet, i was just wondering. its pretty irritating too.
but i know Melissa mentioned moleskin hahaha.

[RugbyLaura]

Hi Allegra & welcome!

Had Immy's 3 month review today. All good news! The severe shoulder tilt was caused by her having grown so much. There is supposed to be a slight shoulder tilt (in her case) but he has loosened it off at it was causing too much (over) correction. Added a new (!) band, called 1A, to hold her ribs from bulging to the left. Rotation stats looked good - slightly improved on last time. Thoracic from 8 deg to 6 deg and lumbar remained at 0. Who knows what the curve is doing, but we'll find out at the next xrays in December. Mr Mills said she is entering the most critical year as her growth is really taking off now.

Sorry this is a bit rushed & probably rather garbled!!

Laura x

[WNCmom]

I'm new to this forum but have read though all the posts on this thread over the last few weeks, and it has been a huge help.

My son Sidney (12 yrs; Risser 0; hasn't hit is main growth spurt yet) has a right thoracic curve of 40, complensating lumbar curve of 24. He has just ditched the Boston brace, which he wore for 6 months (during which his curve progressed about 5 degrees), to prepare for a SpineCor brace, which he'll get in 3 weeks. We realize the odds are against avoiding surgery, but we're going for it.

We will be seeing Dr Ouellette in Atlanta for the brace, and I'd love to hear how Georgiamom is doing, and also from BlueCrystalMan, who I think has a son near my age.

Also, looking ahead, does anyone have experience with UNC Hospital in Chapel Hill as a surgery venue?

[leigh9p]

Taylor got her brace on Thurs. with Dr. Marinaro in San Francisco. She hates it. Can't say as I blame her - she looks like a mummy all wrapped up in it. Her clothes don't fit over it very well either. But, we are only on day 1 of wearing it. I know it will get easier/better. I walked in the door tonight and she was in tears and said - I'm not wearing this - please get me the night brace. I tried to tell her about those of you who I've read did not like the night brace and then of course the studies show it was not nearly as effective as Spinecor. Not to mention, I just plunked down $4500 on it! So then she started trying to negotiate less wearing time ;-) I said, let's just take it one day at a time - right now is 4 hours this week, then 8, 12, 16 and 20. So really, we have 3 more weeks before she would have to wear it at school.

She was so strong and brave while he was fitting her, but once we got in the car, it all came out. My heart breaks for her. I know there are worse things, but right now it's just hard. She told me how stressed she is with highschool. tons of homework, diabetes and now this.

Also, she is refusing to wear anything under it, so her skin was all dimpled from it. She won't talk to any of your kids or other kids either. Guess I just wanted to vent, but if any of you have any words of wisdom, please do share.

I guess one thing I wanted to ask is was she supposed to be so twisted with it on? To correct the lumbar rotation, it pulls her the opposite direction so she stands in it twisted. he said as her muscles strenghten and the bands give, she will slowly come back to a normal straight position. Did any of you experience this and how long did it take?

[rtremb]

We tried the night brace (two different ones) - they were very uncomfortable for my daughter and hot. They made her arm go numb and sleep was impossible!! The night braces are bending braces so they hold the body at a very odd angle. Any brace is probably a real challenge to wear for most children but the Spinecor seems like an easier brace to wear in that they can still bend over and stretch. Our daughter is very excited to be going to see Dr. Rivard next week to (hopefully) get a Spinecor brace since she absolutely hated the night braces and doesn't want to wear a day brace since she is aware that she can lose her muscle strength if she wears a day brace.

From your posts it sounds like your daughter is only recently diagnosed so she hasn't had a lot of time to get used to this whole subject so the idea of bracing is probably overwhelming for her. I hope you can work things out with the Spinecor since I think the alternatives are much worse!

If she'd like to chat with my daughter she is on SpineKids and I could ask her to write a note to her?

Ruth Tremblay, Ottawa

[cherylplinder]

You will see her straighten, according to theory. The first few weeks were an adjusment for Rachel, she had rubbing at her legs and under her arm and at her neck. Her curve is thoracic though and her pressure points are different. She was a lot straighter after the first month.

Check out the manual and you will see some of the logic. Let me see where I have that web page stored.

If anyone else has ready access to it, post it

I found it.


http://www.srs.org/professionals/bracing_manuals/section13.pdf

[momw/scoli]

I'm sorry to hear Taylor is having a hard time adjusting. I was that same teenager back in 1981 with a boston brace. I think that is why I can't seem to make my daughter wear her boston brace to school. It will get better. She will quit growing and hopefully avoid surgery.
Emily my 12 year old and Callie my 9 year old had their appointment in Houston yesterday. The really good news is so far Callie does not have scoli.YEAH!! He said we should have her checked every four months because of family history. The other good news was Emily's top and bottom curve were both a little better than they were in July. He also said her pelvic bones are finished growing and her head is centered in the middle of her body. He thinks she has about 18 months of growth left. The bad news was Dr. Marco told me the spinecor works better on curves in the 20's and on children
that only have a top curve. He also said there haven't been any studies on children who go from a hard brace like the boston to a spinecor. A different Dr. was out of town and is going to look at Emily's x-rays to see if she could wear a spinecor. He also said if our insurance won't pay for spinecor it would be better to go to Canada. I guess that the brace is not as expensive in Canada plus that is where it was invented.
As of today, the plan for Emily is to stay in the boston brace, wear it as much as she can stand it, and pray her curves stabilize. She is supposed to keep it on after school, but I caught her today with it off. She was hanging out with her friends doing gymnastics and she finally learned her round-off back handspring. What's a mom to do? Duck tape the brace to her body?
All I could say was congratulations, get your brace back on now!

Becky
Married to Scott. Mom to Brandon 15, Emily 12 T36 L32, and Callie 9

[Celia]

Laura,

I'm glad things look better and hopefully we'll see improvement.

This is quite a unique situation as we try to learn from each other's successes and failures. Mistakes are hopefully not repeated as we are dealing with human lives - our own precious children. This month marks our two year anniversary in the spinecor brace and a cure is somewhat elusive - things seem a bit uncertain as we now deal with a curve that's developing in the neck area due entirely to a shoulder tilt which is not even recommended for Deirdre's curve classification :confused: I'm reassured we're over-compensating for her thoracic curve and this is simply postural but the deformation that's happening to the vertebrae itself doesn't look that way to me. I'm at a loss to understand the reasoning for all of this and I'm reminded that I should trust.

[leigh9p]

Thanks all for your response. As you may have guessed, she is doing better today. Her natural optimism stepped in and we are making shopping lists for different clothing. It also isn't as painful today. After reading about Nicoles surgery, I feel silly even complaining. I will check out the manual - my husband took it on the plane with him Thurs. and just got back. Thanks for the link Cheryl.

Becky - you are right, she is still so new to this and hasn't had to suffer through a hard brace yet. I can't imagine how hard it must get to get compliance with that. Taylor loves gymnastics too so she can totally relate to your story. :cool:

She can't figure out how to go to the bathroom without taking the whole thing off. I told her I read that some of your girls wear thongs and just pull it aside, but she says it goes right up the middle and that isn't possible. Not pushing things too hard right now, but obviously taking it off everytime is not going to work.

The other thing that's tough is that even though the brace isn't covering her entire stomach so she could give herself shots with it on, if she wears a cami (as seen on this board) she can't get to her stomach without pulling it out. One day at a time.... :eek:

[MATJESNIC]

I am sorry that Taylor is having a hard time with it. Please don't feel badly about complaining. You aren't complaining and you have every right to feel badly that she is having a hard time with the brace. Yes, there are always worse things but as Maria and I like to say, "This is our worst."

Nicole loved her Spinecor from the start because she knew she was supposed to be in a hard brace and we got her this one instead. She wore bodysuits underneath and just unsnapped the crotch. I also bought some pretty panties at Victoria's Secret and had a tailor put snaps into them. If you do that you also have to wear some type of undershirt, too.

Good luck.

[jillw]

Celia, when in 2008 does she go in for her next visit? Are they willing to see her since this shoulder tilt and cervical curve seems newer? I can empathize with your concern.

I guess I didn't realize that the Spinecor overcompensates in some cases.

For those of you who went to Montreal, what is the frequency of visits after the initial fitting? Do they recommend coming in sooner if there is a growth spurt of a certain amount so the fitting can be adjusted?(i.e. if they grow 2 inches before they are scheduled to come back)

My head is spinning - there are no clear cut answers when it comes to scoli, are there?

[Celia]

The curve in the neck was evident 5 months into wearing the brace two years ago and the trend should have been clear to me. I don't know why it wasn't obvious to the doctors :confused: There were other subtle signs like Deirdre complaining of headaches and neck pain and then the muscles on the right side of her shoulder became more pronounced. Predicting the future is never an exact science but I don't think it takes a genius to figure this one out.

I spoke to dr. Coillard last week and she assures me that no one has ever developed a compensatory curve from the spinecor brace and that I have to trust her. The schedule for us was one month after initial fitting and then 5-6 months thereafter.

[MATJESNIC]

Celia,

I hope everything is okay for Deirdre.

[leigh9p]

I love the idea of pretty panties with snaps. I tried to show her how to pull them aside this morning and she thought that was just gross. :p The bodysuit isn't going to work because she has to be able to pull the shirt up and give herself shots in her stomach.

She set her alarm clock for 6 a.m. so she could get up and put it on and then go back to sleep. That way she had it off by 10 a.m. I don't know why, but this is what she wanted.

I've been reading the the book Growing up with Scoliosis - which I was going to have her read, but I think not. I think it will just scare the crap out of her and then to read that all that bracing didn't work. It's too soon for her to hear all this. I was thinking at first that learning what the hard brace is like would help her to appreciate this one more, but I think we are getting there anyway.

Is it typical to want to spoil them rotten? I took her shopping yesterday for a bday present and ended up buying her sweats and shirts that would work. How can you not?

Melissa - thanks for the kind words. I hope Nicole is doing better every day with her recovery. I just read the surgery chapter in that book and was filled with empathy for you all.

[Celia]

Actually, I'm feeling better today. I think I'm suffering from sinking ship syndrome LOL!!! Nicole just went through surgery and a few other people are having problems so it's natural for me to feel the way I do. I have to keep reminding myself that Deirdre's curve is at 2 degrees!!!!!! What am I complaining about??????! Somebody slap me!

[RugbyLaura]

SLAP

Hey, we all have our dark moments. That's what friends are for!

Laura x

[Celia]

I feel sooooo much better now!!!! Thanks Laura! LOL :D :D

[cherylplinder]

Jill,
I know more than one person that has scheduled a visit early because of a rapid growth spurt, me included. Just looked like it was time.

[Celia]

A very talented lady I know superimposed Deirdre's x-rays from March 2007 to the latest one taken in August 2007. I've been a little worried about the curve in her neck that doesn't seem to going away however....I think it's directly related to the shoulder tilt caused by the brace and I don't think it's absolutely necessary to have such a severe tilt to her shoulders. Anyway... all in all I think there has been some improvement, no???? :)

http://i41.photobucket.com/albums/e251/sealy25/Deirdre10.gif

[RugbyLaura]

Celia, Looks pretty good to me! Certainly very different from where she started at 18 months old!! Hard to do, but I try to remind myself that I have a happy, healthy, beautiful and kind daughter (with a slight kink in her back). I do understand that if we weren't worriers, pushers & investigators our children would be wearing horrible hard braces (in Immy's case, not even that yet as 1st consultant said "come back in a year"). BUT, as you've already said, we must trust our decisions and try to relax & enjoy life! When Immy's shoulder tilt became very exagerated it was due to growth. We let #4 out a VERY LITTLE to make her more comfortable & waited for the next appointment which was only 3 weeks away. If this happens again I will phone Mr Mills & discuss it with him.

Jill - We don't go to Montreal but I hope this might help to answer your question.

Leigh - I guess it must be so much harder for older children and with the diabetes too Taylor must really have a case of the "Why me?"s. And I don't blame her! Re the twisted posture in brace - to be honest, I don't think it does get any less obvious, but you do get more used to it. The twisting is addressing the curve. At 10 Immy is really not bothered about how the brace looks & has been known to run around the garden wearing nothing else, she'll be going to secondary school next September and I imagine that's when the body issues will start. But yes, I do spoil her on shopping trips.... Mind you, I probably used to before all this anyway :D

Laura

[Celia]

Immy is only 10? This could be a good thing.

It just takes one look at that x-ray 5 years ago to put everything in perspective for me. Any little wrinkles or "kinks" can be ironed out - no problem! She looks more centred in the latest x-ray. Has anyone noticed her lung capacity looks so much better compared to the March x-ray?

[desheah]

celia,

deirdre is definitely looking good. you are right about the lung space. perhaps all the years of casting made her more barrel chested (is that the right term?). this most recent x-ray looks like her ribs have opened up quite a bit.

deep breath! that's what i keep on telling myself. it usually doesn't work, but i keep saying it! ;)

on another note, just made an appt. for nov. 12th for lucas' next checkup in montreal. keeping my fingers crossed.

this is to everyone:

has anyone had an out of brace x-ray for their child? i'm really curious how big of a difference there may be. lucas has not had one in the last year. i know that this is the typical protocol, but is there a recommendation on ever having an out of brace x-ray. i guess i'm asking all of you who are up on reading the spinecor manual. :D wondering if i should go some place local for one . . . :confused:

thanks for your response, :)

deshea

[Celia]

How does that song go again??? :D


There's a light at each end of this tunnel, you shout!
Cause you're just as far in as you'll ever be out
and these mistakes you make, you'll just make them again.
If you could only just turn it around.

and then of course..... it's advised that you breathe!


I know nothing about *out of brace x-rays* :eek:

[alabama mom]

Hi guys. I haven't been online much lately, I am always so busy. I wanted to post on my daughter's progress.
We went back to Drs. Rivard/Colliard for our appt.(we went back 2 months earlier than we were originally scheduled because my daughter grew 5 cm/2in from mid may to mid sept!) I was SO scared that things had worsened.
We were so happy to find out that she had improved from T5-10R:19 deg/T10-L3L:19 deg, down to T5-10R:15 deg/T10-L3L 13 deg! Dr. Colliard said that it was a crutial time for her, with such a big growth spurt (2 in. and aprox. 15 pounds), and that she did great. She changed out strap#2, as my daughter had simply outgrown it. She says that her brace is much more comfortable now.
We are supposed to go back in Feb. 08, but if my daughter continues to grow this rapidly, I will probably go sooner. This is obviously not that easy for us, as we travel over 1300 miles one way, to get there. But, I will happily continue to do so, because I see and believe, that this can help my daughter.
I wanted to share this with you all, because posts like this are what made me drive to Montreal for this brace. This forum, and sharing all of our experiences, is a great help to worried and confused parents. Good luck to all of our kids!
Nancy

[jillw]

Hi Nancy, Thank you for sharing! How old is your daughter now and how long ago was she diagnosed. How long has she been in spinecor and what was her initial correction (if you don't mind me asking- its probably been posted before but I couldn't find it with a quick search)? I hope things continue to go so well!!!

[alabama mom]

Hi Jill. Thank you for the well wishes.
My daughter is 10. She has been wearing the spinecor since April 07. Her initial measurement in Nov 06 was aprox. 18/17. We were told to wait and see, but by April 07 she was 23/19, and we got her in the spinecor. The initial correction was 19/19, and then 19/18 when we returned in 1 month. I was a little disappointed at first, since some of the other kids I had read about were getting much better initial correction. But, now I am so glad that we stuck with it, and I just hope that things continue to go well.
I hope this helps you out in some way, good luck to you and your family.

[momw/scoli]

Quick question. Is anyone successfully wearing a spinecor with a double curve both in the 30's? Thanks!
Becky

[gallathea]

Hi Everyone:

It's been a while, but I wanted to post on some recent developments with Annabel. We've been considering the vertebral stapling surgery because of the many years of bracing ahead, so we went down to Philadelphia for a consult with Dr. Betz who developed it. We did our first out-of-brace x-ray since her diagnosis a year ago, and unfortunately her curve has increased from 28 to 37. We've decided to move forward now with the surgery as quickly as possible. I'm sorry to post disappointing news. I don't think this was about the failure of the Spinecor; I think it's about the aggressiveness of this particular curve. Our last check-up in Montreal was in April, and her in-brace correction was stable, so it's possible all of this happened in the past 6 months. When I asked Dr. Rivard if in-brace x-rays would show progression, he said yes, so I have to believe that's what happened.

Thanks for all of your support in the past. I'll be sending all of my good thoughts to you and your kids.

Caroline

[RugbyLaura]

Caroline, I'm so sorry to hear your news. I had such high hopes for Annabel as you caught her curve early. You probably remember that Imogen is really wearing the Spinecor to "hold her curve" until she's grown tall enough to schedule surgery - but we are, of course, hoping for a miracle...

When you say you're going ahead with surgery I assume you're going for vertebral stapling rather than growth rods? We don't have that procedure in the UK but I think it looks like an excellent option and I wish you all the very best.

Laura

[Celia]

Hey Cheryl,

I hope everything is okay with you (((hugs)))) Where is Gerbo? Has anyone seen Gerbo????! Last time I checked he was in a Cheneau thread. :D

[MATJESNIC]

Caroline,

I wish your daughter the best as you go through this surgery. After having had to see Nicole go through spinal fusion, I would have loved the opportunity to have had the stapling done instead. We had asked, but she is not a candidate.

In-brace progression is definitely seen with the Spinecor. Remember when we went up in May and Nicole's curves had progressed so much in-brace? If a child's curves go up, you will see it even in-brace.

Please keep us posted. We live only 45 minutes away from Shriner's. So if there's anything I can do for you, please don't hesitate to ask.

[flowerpower]

Hi,

Hope you don't mind me stepping in here, but a question Deshea posed has me curious...what is the reason given for not doing an out of brace x-ray at the appt. if they're doing an in-brace x-ray? How often is an out-of-brace x-ray done? I know with the hard braces they do both. It just seems to me that utilizing both would give a "truer" reading on whether or not there is actual progression.

Renee

[Celia]

Hey Rene,

For me it really isn't a big deal not having an out of brace x-ray. What is the purpose of out of brace x-rays if not to assess whether the curve is stable and ready for weaning which usually occurs at the end of the adolescent growth spurt? I haven't come across too many people who are now cured of their scoliosis before the adolescent growth spurt and need out of brace x-rays. We are no where near that in Deirdre's case given her age and the risk of progression so I don't have a problem with that since it means less radiation exposure and I'm quite happy with 2 degree in brace correction. There is no rib cage compression issues happening, so I'm just cruising on through. I'm sure it's the same with everyone else who goes to Montreal but when we go for the clinic appointments, Dr. Coillard adjusts the straps and off we go to the first floor to be met by the very warm and friendly x-ray technician for our inbrace x-ray. Usually before heading back down to the clinic we stop off for some munchies at the hospital cafeteria since life does have its rewards :p I'm sure if the good doctors felt weaning was appropriate they would request an out of brace x-ray. I think it was Melissa that said dr. Rivard recommended 1 week out of brace for an out of brace x-ray

[Celia]

On another group I belong to there is one gentleman whose 12 year daughter is wearing a Milwaukee brace and the curve is being held at 25 degrees. Dissatisfied with this level of correction, the doctor is recommending periods of traction for the daughter in order to reduce the curve to a more manageable level. Interesting concept, huh?

[MATJESNIC]

If there is a progression, you will know it with the in-brace. Dr. Rivard told me that it's not done because it doesn't give an accurate measurement of what is going on. The back and spine go through so many changes throughout the growth. I always worried about not getting them done and you can see that we found out right away that something was wrong. And we found it out with an in-brace x-ray.

Remember, an in-brace with Spinecor is much different than an in-brace with a hard brace.

[cherylplinder]

Thanks for the explanation, Melissa. I had not been able to figure all that out . I wasn't sure if in brace would indicate out of brace progression or not. Dr. Coillard recently said that Rachel's in brace would not necessarily be out of brace , but that makes sense. This is the first time we have definitely seen in brace progression. She is therefore not sure what Rachel's out of brace is. As long as she was improving or stable, in brace, her out of brace was not in question.

She still was confident that I didn't need to seek a surgeon immediately. All will have to wait until after the next appt. I hope to move that up from December to October, but with Mom sick and all, I haven't gotten that done yet. I planned to do it today and it got pushed out of the way with construction woes. (The house from hell is still not finished. lol. But all of this other stuff certainly does put that crazy house in perspective. Nonetheless, it is a distraction and eats up time. I pray that I will mature enough soon that God can take that off my plate. I'm sure I still need the trial or it would already be over. I call it remedial Chrisitianity! I am a slow learner! Not in school, just in life! Praise God! He never loses patience with me!) Hugs to you , my sweet friend! Hang in there! From here, the view is amazing! You are amazing! Nicole is amazing! You are doing the best anyone could! I love you!

[desheah]

thanks everyone for discussing out of brace x-rays. perhaps i am still in hard bracing/casting mode in my head which would explain my concern, but not appropriate for the spinecor. weird since lucas has been in a spinecor for over a year now. too bad they don't have a smilie for banging head against a wall! :p

i do believe that lucas is going to need some major adjustments to the brace in nov since it is so tight. he's grown quite a bit this year. i hope we're not doing something wrong not having it adjusted sooner. calming breaths . . .

melissa,
i've been reading your thread about your daughter's surgery. it sounds like she is doing much better -- physically and emotionally. our family sends her healing vibes.

my best,
deshea

[MATJESNIC]

Cheryl and Deshea,

Thanks so much for your posts. I always get a boost from coming on here. It helps me to remember that I am not alone. I wish nothing but the best for your children, as well.

[Sherie]

When Sheena was in the Spinecor, she didn't get much correction initially for her 43 deg lumbar curve. At her 3 mth checkup, they took both in and out of brace xrays. Still about the same, maybe a few degrees more on the out of brace, but this was after having the brace off for only several minutes.

At 6 months, the in brace was about 45. She was out of the brace for a week right after that and her out of brace was about 52, we decided at that time it wasn't really helping and she quit wearing it. I don't know if that was the right decision, she would still need surgery but her curves may not be as bad as they are now. Hindsight.....

Anyway, I think the out of brace is not accurate if they shoot the xrays immediately after removal.

[cherylplinder]

Sherie,
I have been keeping track of your surgery posts. I am impressed with Dr. Lenke's credentials. You will be in my thoughts and prayers as you go through this difficult time. Hugs.
Cheryl

[rtremb]

We are going to Montreal tomorrow to see Dr. Rivard to find out if our daughter, Esme, will benefit from wearing a Spinecor brace. I am feeling really tense and nervous about this since we really would like her to be able to wear this brace but with her curves he might not think it is the best treatment. I guess I am really scared he will say she needs surgery...

[MATJESNIC]

Good luck in Montreal. Please keep us posted.

[Sherie]

Cheryl: Thank you for your kind words. I feel very good about Dr. Lenke, that was the most important part of this process for us was to find the right doctor. We're pretty well accepting the surgery, it wasn't easy for me but time did help. I wish you and your family the best too.

Ruth, I hope you get some good news tomorrow, the important thing is you know you're getting the best opinion there is for the Spinecor option, you won't have to 2nd guess yourself like I did. Good luck.

[rtremb]

Sherie: You are right - after reading about Dr. Rivard on this forum we feel confident he will do what is best for Esme. We spoke with a chiropractor in Gatineau, Quebec (which is less than 15 minutes from home) about the Spinecor and he was willing to put Esme in the brace but since we are so close to Montreal we thought we would go to see Dr. Rivard. This forum helped us to make that decision. I am very grateful for being able to read all the posts about all the various experiences members have had.

[gerbo]

ruth; be prepared that the best you can expect is to "buy some time" prior to surgery by using the spinecor, the chance it will give any substantial improvement is small. Surgery is not a disaster or failure; it is a blessing that with todays technology these things can be succesfully put right.


melissa; hope you and nicole and other familymembers are ok

celia; i am just back from little trip to holland; parents had their 50 year golden wedding anniversary on 26/9; big party, great fun, son played beautiful piano and lisanna danced for guests, very touching...

cheryl; we are so much in a similar situation; keep your head up, girl!!

generally; re in/out brace xrays; the protocol states yearly in and out of brace xrays with in brace xrays in between, one wonders how much this is out of clinical necessity and how much this protocol is driven for research reasons.

strictly speaking, as long as everything is stable and under control in the brace you can hardly see anyreason to do out of brace xrays as the experience is that the eventual outcome of treatment is predicted by the extend of the curve whilst being treated (i.e.; in brace) (this is assuming that published evidence is correct)

I think that once things are not under control, or when you worry whether (certain aspects of) the treatment could actually be harmful, it becomes more logical to ask for out of brace xrays

in this context, we will be asking for one as we worry we have lost control, and we worry that the brace is exacerbating the 2nd curve. For similar reasons, i think celia should ask for an out of brace picture next time, but then, knowing her, she will make up her own mind about this ;) ;)

[Celia]

..in this context, we will be asking for one as we worry we have lost control, and we worry that the brace is exacerbating the 2nd curve. For similar reasons, i think celia should ask for an out of brace picture next time, but then, knowing her, she will make up her own mind about this ;) ;)

Generally, I just follow directives.... :p I honestly am feeling very good about the latest x-ray. I was looking at the vertebrae from L5 to T9 and they're all lined up nicely like little ducks in a row - it's such a sight to see! Her rib cage is expanding and growing by leaps and bounds, I think the little aveoli keep multiplying until the age of eight so we're doing good and I don't think this would ever have been possible with a confining TLSO. I don't regret my decision to go with the spinecor brace at all! I'm so thankful to drs Rivard and Coillard. I love them both.

[Celia]

Gerbo,

I completely understand your worries and it does seem as though Lisanna's compensatory curve is leading the charge and the primary curve is following suit. I don't think this should be the norm and the brace is not being fitted correctly. You were mentioning that Lisanna has a very severe shoulder tilt and this could very likely be the cause. In Deirdre's case one shoulder should be more forward than the other because of the twisting but in terms of height both shoulders should be level. It doesn't make any sense walking around with severe shoulder tilt - this goes completely against the theory of balance and corrective movement.

[gerbo]

that is, according to the manual, not correct, as the shoulder tilt is part of the corrective movement for our curve, and if they would be level, you would not have this corrective action. The theory is that as the spine can still go throough its complete range of movements, this should not result in a permanent sec curve. Saying all that; we have asked at our last visit foran adjustment, as the sec curve was giving us increasing concern, and the action of thatband has been changed, now giving more a twist backwards of the rightshoulder (a derotating movement?), rather than pushing it downwards. It all can be a bit bamboozeling i have to admit.....

[Celia]

... The theory is that as the spine can still go throough its complete range of movements, this should not result in a permanent sec curve.

That's theory! It's obvious by looking at Deirdre's x-ray what the shoulder tilt was doing. It doesn't take much to project what will happen as the higher curve progresses and the rest of the spine tries to balance out. This is all based on my very limited knowledge of human physiology - so I probably don't know what the heck I'm talking about. ;) In the end, whatever I do has to make sense to me.

[rtremb]

Hi Everyone:

We saw Dr. Rivard today. What a great doctor...good sense of humour too! He was not very optimistic about the benefit of Esme wearing a Spinecor brace since her curves are T52 and L51 on the computer x-rays. He said he would fit her with the brace but only gave a 10-15% chance it would do any good. These are better odds than we got from the first orthopaedic doctor at CHEO who wants to do surgery next February. The second doctor at CHEO encouraged us to try whatever we could since Esme has a little time before surgery is absolutely necessary. We are thinking we will go with the Spinecor for the next six months, carefully follow the Spinecor physiotherapy and see how it goes. Who knows maybe Esme will be lucky and her curves will reduce as she grows taller like her brother's did....trying to be optimistic here!! Esme can get fitted for the Spinecor brace in Montreal in mid-October when Dr. Rivard returns from Europe.

Dr. Rivard also talked to us about fusionless surgery which he is now starting to do. He said Esme could be a candidate but only if she is flexible enough. The flexibility is judged by examining bending x-rays. We are interested in learning more about this if anyone on the forum knows anything about it? He says this technique only fuses two vertebrae therefore more spine flexibility is retained.

[Celia]

Hmmm... that procedure sounds interesting. I wonder if it's this patent :confused: Not sure. I'm sorry about the appointment.


http://www.google.com/patents?id=T3INAAAAEBAJ&printsec=abstract&zoom=4&dq=+rivard+c.h#PPA1,M1

[rtremb]

Celia: Thanks for the link - will print and read. Don't know if this is what Dr. Rivard is referring to.
About Esme's appointment with Dr. Rivard - we are pleased that he will permit her to at least try the brace. I was concerned he might not even let us try it. While it is a long shot I guess that is where we are now and can only keep trying things and hoping something will work. Too bad no doctors mentioned Spinecor earlier when her curves were less than 20 degrees.

[RugbyLaura]

Ruth, I don't know of any doctor that has suggested Spinecor. Everyone I know has had to search it out themselves. Hopefully in time this will change. I agree that 10-15% chance is at least something to aim for and it helps to feel that you're doing something. You never know! My fingers are crossed for Esme.

I agree that the "fusionless" surgery sounds fantastic.

Laura

[alabama mom]

Hi guys. I have a question for the moms of the older girls. What do the girls do, and what works best, in regards to their menstrual cycles. I haven't really seen anything on this thread about it, and I am concerned about making this as easy on my daughter as possible. If any of you feel more comfortable contacting me privately, that would be just fine too. Thank you. Nancy

[MATJESNIC]

Just put the pad on the spinecor bodysuit. That worked fine for us.

[Sherie]

Ruth: Well, that doesn't sound like the best odds, but at least they're giving you a chance to try it. I hope it works.

If she ends up having surgery, this fusionless surgery would be wonderful. I searched and called a few places but couldn't find anyone who was doing this here in the States. Did he say anything about the degrees being a factor? I wonder how many kids they've done this on?

[Celia]

Ruth,

It's unfortunate the doctors didn't think to take action when your daughter's curve was still about 20 degrees!!!! :mad:

Your daughter has a lumbar curve, right? Have you looked into the torso rotation exercises?? There is an article by an orthopaedic surgeon, Dr. Vert Mooney and also recently Dr. Marc Asher and they discuss the success of torso rotation exercises. It's not an expensive undertaking at all. I'll try to dig up the article for you - maybe someone else can? I've read the article and the results are quite impressive. There is also a link somewhere which lists facilities that carry the medex torso rotation equipment and I'm sure there's one near your area.

[gerbo]

http://www.scoliosis.org/forum/showthread.php?t=3627

all relevant info in here, (if all links still working)

have to say, the few "failures" were with larger curves. Worth trying i think myself (we are still faithfully rotating twice a week)

[Celia]

Darn...the links don't work! How does one go about locating facilities? I've uploaded the article to scoliosis-support. Here's the link:

http://www.scoliosis-support.org/uploads/vert_mooney_article.pdf

[rtremb]

Sherie: I think the fusionless surgery is the multiple vertebral wedge osteotomy surgery. I don't think the doctors know the long-term outlook for this surgery since it has only been done for about eight years now. I am not 100% sure this is what Dr. Rivard is referring to but we will ask him when we go back for the Spinecor brace. Much as I don't like the idea of fusion surgery we are wary of letting any surgery be done on Esme which is still experimental.

Celia: Esme's structural curve is thoracic. She has a compensatory lumbar curve. We found the torso rotation on the web and we are interested but so far the nearest facility with equipment (we have found) is in Toronto (5 hour drive from Ottawa).

We are going to Peterborough on Wednesday to see a chiropractor about some intensive treatments for Esme. Don't know if it will amount to much but we thought we'd go and see what he has to say.......

[cherylplinder]

I will be really interested to hear what he has to say! Thanks everyone!

[BETall]

Caroline, I'm so sorry to hear your news. I had such high hopes for Annabel as you caught her curve early. You probably remember that Imogen is really wearing the Spinecor to "hold her curve" until she's grown tall enough to schedule surgery - but we are, of course, hoping for a miracle...

When you say you're going ahead with surgery I assume you're going for vertebral stapling rather than growth rods? We don't have that procedure in the UK but I think it looks like an excellent option and I wish you all the very best.

Laura
You have more options in Europe . Please go to www.Sosort.org
scoliosistreatment-schroth.com
scoliosisxpert.com
scoliosisjournal.com

[Celia]

Hi Betall,

I see the benefits of Schroth and the Cheneau brace however it's not something that's readily available to people here in North America unless they are willing to take an international flight to Spain or Germany. Ruth lives in a rural town in Southern Ontario and cannot do a transcontinental flight half way across the globe for regular treatments. :o :o

[gerbo]

also, despite that principles of schroth and cheneau look good, there are no convincing looking outcome studies which show a clear benefit compared to non-treatment (as far as I know), in any case, to both would apply, the treatment will be as good as the practitioner giving it, like anywhere else, there will be good cheneaubraces and bad cheneau braces, there will be good schroth therapists and bad ones and in the end, it might not make any bit of difference to the eventual outcome

[Celia]

Gerbo,

I don't know if you have seen this article or not, but the results look pretty good. :)

http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=16872503

[gerbo]

but the results look pretty good

??????


After a treatment time of 27 Month the Cobb angle increased to 74° thoracic and 65° lumbar

am i missing something??

[Celia]

Yes....did you read the entire article? Refer to figure 5 :o :D

[gerbo]

During clinical follow-up we were quite satisfied with the cosmetic improvements achieved although the initial Cobb angle was very high and after the follow-up x-ray we were quite surprised that the curve was progressive.

i am confused, figure 5 suggests an improvement in cobb angle, whilst the rest of the article talks about cosmetic improvement despite a radiographic deterioration, ??? :confused: :confused:

[Celia]

We are reading the same article, are we not? :p :D The whole article is about a patient with early onset scoliosis who started treatment at the age of 13 and her curve was 60 degrees. She refused surgery but was happy with the cosmetic results at the end of treatment even though her curve progressed. I think they were trying to establish why cosmetically she improved but had a radiological progression of the curve. They also made the following point:

...the Rigo-Chêneau brace is able to improve cosmetic appearance by changing the shape of the thorax when the curve itself is too stiff to be corrected by a brace, while in curvatures of less than 60° with enough residual flexibility cosmetic improvements come along with improvements of the Cobb-angle (Fig. 5 and 6)

[jillw]

Hello Everybody,

We will be driving to Montreal next week to meet with Dr. Rivard and potentially get the Spinecor brace for my daughter. I have thoroughly read this thread although it was in the course of a few all-nighters when we first got the news so I don't remember all the details. Having said that, I do remember that some of you experienced difficulties with broken parts (snaps?) and was wondering if any of you had advice:

-if we get the brace, it sounds like it would make sense to order some extra parts up front to potentially avoid a stressful situation later. Should I be asking to buy certain extra parts and if so which ones???? (i.e. was it a particular snap or are the snaps the same throughout the brace) bands? anything?

-I have read that there are special undergarments people wear with the brace. Do they sell these bodysuits in Montreal t get us started or should I be going online to order in advance, just in case (and if so, where would you suggest going online)?

-Any suggestions for a convenient hotel to stay in? Either something close to the hospital or something that's over the NY /Canada border but maybe still a bit south of Montreal? Our appointment is early so we have to go the night before.

I had other questions, but I forget now what they were. I think these things have been covered before and I apologize for asking again. I was trying to find some of the info in old posts, but think I've missed many of the posts. Thanks in advance if anyone has any suggestions!!!

p.s. out of curiousity, I read that Johns Hopkins utilizes Spinecor also. Does anyone know the name of the doctor/s there that do it and does anyone have experience with them?

Jill

[RugbyLaura]

Hi Jill,

I haven't any answers to your questions as 1) we live in England and 2) nothing on Imogen's brace has broken (yet!). Just wanted to say "Good luck" with Katie's appointment and have a great time in Montreal!

Laura

[christine2]

Hi Jill
i think your daughter is a good canidate for spinecor. She is young and you caught the curve small. We have only had 1 snap problem so far and a local shoe repair was able to fix it.

Body suits
My daughter will only wear the spincor bodysuits. I have had a very hard time in that area. I can't find anything to fit her. So we go with the spinecor they are $60. a pop. You will get 1 or 2 bodysuits at the visit. You may want to pick up an extra while there it takes a while to receive them from Montreal if you call in to order them.
I am working with bodysuit.com to come up with a new designs for our small kids. The project is on hold right now but I hope to get going on it again soon.

We stay in Plattsburg NY there are a ton of hotels and resturants right off the highway. It only takes about 1 hour from there to the hospital. AM rush hour is bad so give yourself some x tra time.
Don't forget birth cert/or passports for the border.
We get x rays on a disk before we leave each time. I then make copys and send them to our docs here.

Don't forget receipts for insurance (I did once what a PAIN IN THE BEHIND)
I also keep a small notebook. Everything goes in there docs #'s, ?'s

Good luck

[Celia]

Hi Jill,

I agree with Christine, it's wonderful that you caught the curves so early! Whenever we go to Montreal, I get an extra set of straps. Dr Coillard gives me a dirty look and I'm sure doesn't like it but hey :cool: I'm the one that has to live with the brace and snap mishaps. I don't know how much an extra bolero costs but I'd really like to have an extra one lying around so that Deirdre doesn't wear the same one for an entire week. I'm planning to ask her about that next time we're there. What we've done recently is remove the brace from the velcro side rather than the snap side and this saves on snap wear and tear.

If you plan to stay in Montreal for a few days, there are a few hotels that come with fully equipped kitchens and this really helps! Here is a website of hotels with kitchenettes:

http://montreal.biz-stay.com/home.cfm

[desheah]

jill,

i don't want to jinx myself here, but we have not had any problems with the snaps (knock on wood!) instead since lucas is so small when he got the brace (4 1/2 yrs old and now almost 6), the velcro straps on the pelvic base would always loosen and eventually pop open. my husband and i rigged up a strap with a buckle like this directly onto the pelvic base straps:

http://www.rei.com/product/709043

so that we didn't have to worry about the velcro loosening and then the base sliding around. of course, lucas is a boy so he doesn't have to take any thing off to go to the bathroom. that has been a major plus with regards to this brace. i know the others with girls would have tips about that.

good luck!

deshea

[WNCmom]

Hi Jill--

We will be taking my son (age 12; T40, L24) to Atlanta to be fitted for a SpineCor in two days, so thanks for asking that question--the answers are very helpful to me, too. Dr. Ouellette, the chiropractor who fits the SpineCor there, says he warrantees the brace for two years, so replacement parts are provided at no charge during that time. It's good to know what is likely to wear out, though.

We will be in New England during the Christmas holidays and are considering making an appointment to see Dr. Rivard during that time if that's possible. Please let us know how your appointment goes in Montreal.

Mary Ellen

[cherylplinder]

I spoke with Dr. Paul Sponseller at John's Hopkins before going to Montreal. He was so nice! He wasn't sure if the Spinecor was right for Rachel as she was chubby so I sought further advice.
He is the head of the pedicatric orthopedic unit and an excellent surgeon. I have read posts on the surgery thread of wonderful results. I am not sure who fits the brace at Johns Hopkins. He is very accessible. Seems like I contacted the clinic there and they gave me his direct email. I didn't ask for it, they offered it. If you want to speak with him, just try to get in touch.

Rachel and I rigged a shoe string through one of the snap holes sewed to the end of the strap that kept popping loose. The snap hole we thread it through is just above the snap we snap the band to. It was really an accident over a weekend when the shoe shop was closed and the snap they put on came off. I had to do something. The snap hole on the base of the one they put on had a larger center so I tied it in the pinch. It worked so well, I just stuck with it and tied and snapped.

[gwenk]

Hi

Andrew has been in the spinecor brace for kyphosis for almost a year and we did have some snap and velcro issues. Dr. Rivard sent us a new set of snaps right away and we took them to a shoemaker who put them on for us. a really good shoemaker will know how to tighten the snaps once he puts them on. We had trouble with the velcro wearing out and we were going to have the shoemaker sew some new velcro on. It would have cost about $500 to replace the velcro straps that go around the legs. Dr. Colliard found some used leg straps on our August visit that were clean and in pretty good shape so we use them instead for free.

Andrew's growth spurts really made the brace uncomfortable in less than the 6 months between visits so we take him to Canada after he gains 10 pounds or grows more than an inch, Dr. Coillard expects his growth spurts to slow down soon. We have gone 4 times in a year but he has gained almost 30 pounds and has grown 3 inches. So they have been pretty accomodating in seeing him more often.

Other than that we havent had trouble. He doesnt wear the brace for sports ( football, wrestling and baseball) because he has trouble with snaps coming undone in those activities. So he just counts practice as part of out of brace time.

Best wishes to you with spinecor.

Hope that helped.

Gwen

[gerbo]

passed the 100.000 viewings mark. Must be some kind of record!! :rolleyes: :rolleyes:

[Celia]

I saw it getting closer to the 100,000 mark yesterday and I thought: hmmm....the site will probably crash because there isn't enough space for so many numbers. So do we get a prize for being such chatter boxes???? I wonder if we can get into the guiness book of world records? :D

[jillw]

Thank you everyone for your tips! (and I"d love to hear what anyone else has to say)

MaryEllen, good luck in Atlanta tomorrow. Let us know how it goes. Our appointment in Montreal is on Tuesday.

Just Curious - both Dr. Rivard and Dr. Colliard are based out of montreal...how do the work it? I have spoken only to Dr. Rivard so I assume Katie's appointment is with him? Do you see the same doctor every time or do you not know who you'll be seeing when you visit?

Gwen, based upon what you said (that the thigh straps would have cost $500 to replace), it sounds like in Montreal dos not warranty the brace for two years? (unless maybe you had passed the two year mark when it happened).

Does anyone else have trouble with snaps coming undone during sports and such? I hate to think Katie would have to take it off during those kinds of activities because I get the impression that being active in the brace is such an integral part to how it works? But if the snaps won't hold i guess there would be no choice but to take it off and use out of brace time. Katie doesn't play football so maybe we'll be OK ;)

[anwmom]

My daughter has trouble with one of the straps coming unsnapped when she bends over and does certain activities. She has had it replaced and adjusted -- it still happens but not as frequently as it did before it was replaced in August.

[jillw]

Gwen, I meant to ask you.... you have been going more frequently based upon his growth spurts (which makes sense to me!). Just curious, when you go do they take Xrays every time or some of the times do they just focus on making any adjustments to the fitting without xrays.

Anwmom, bummer that the snaps still come undone sometimes after the replacement/adjustment. My daughter is still youngish and her fine motor skills aren't the best so I don't know if she'd be able to take care of those types of things if they happen when I'm not there. I guess we may be getting to know the school nurse very well if we do this...

Thanks!

Jill

[gwenk]

Hi Jill,

My insurance company told me if I seek medical care outside of the US nothing is covered, unlike an accident overseas which would. The $500 pieces that I was talking about were the sections that go around your legs. Both were worn out on Andrew. Dr. Coillard said we would have to pay for new ones if we didnt want to take it home and have it fixed. We were lucky that she had the used ones that she gave us.

So, it does sound like the two year guarantee is a pretty good deal comparatively. I wondered why something so expensive should have to be replaced at my expense but I guess I just figured thats how they do it in Montreal. I just just tell myself that these guys are the best and I will have to drive my 9 year old van one more year!

The procedure is the same everytime we go. We go pay the hospital bill with our credit card, go see Dr. colliard who adjusts the brace, go to xray, and come back for results with Rivard and sometimes Coillard. It takes about 45 minutes then we get back in the car and head for Pennsylvania. We have done it in one day everytime. Pack losts of snacks, a dvd player and some good music.

Dr. Rivard wrote us a note for our insurance company because the brace is actually FDA approved and some people in the state are having it covered but my insurance denied it.

Take care


Gwen

[jillw]

Gwen, if you don't mind me asking who is your insurance provider?

Ours is Blue Cross/Blue Shield - has anyone had experience with them? (I realize even within Blue cross, coverage may vary based upon the specific employer underwriting the plan, etc) but am wondering if anyone has had any luck getting them to cover spinecor.

thanks!

[WNCmom]

Jill--

Our insurance company is Assurant Health and we don't yet know whether the SpineCor brace will be covered. We're going to do it regardless (we need a new car, too!), so we'll forge ahead and find out later. We've already had one brace this year. I'll let you know what they say when we file the claim.

Gwen, thanks for letting us know about your insurance company's response to seeking medical care in Canada and what a visit to Dr. Rivard is like. It will help to be prepared if we do go to Montreal in a few months.

Mary Ellen

[rtremb]

For Canadian visitors to Dr. Rivard...........

When we visited we had to fill out a few forms but the consultation with Dr. Rivard and the x-rays were covered by the Ontario Health Insurance Plan (OHIP). The hospital invoices are paid by OHIP.

The Spinecor brace, however, is not covered by OHIP or the Ontario Assistive Devices Program. (TLSO braces are covered by the Ontario Assistive Devices Program.)

We are going back to see Dr. Rivard on October 23rd for a Spinecor brace fitting for Esme - can't wait.

Ruth

[christine2]

Our insurance (bluecross) paid out of network benefits which had a $750.00 limit for durable medical equipment each year. All of our OV's and x rays are reimbursed 80%.

Jill I went into the school nurse and showed her how to resnapped the brace. I also wrote in marker on the pelvis piece #'s where to place the snapps. My daughter does ALL of her activitys in brace. soccer, figure skating, gymnastics ect...

[arairdon]

When we have an early appointment in Montreal, we always stay at Ruby Foos. It is a fairly easy drive to the hospital, we can park our own car, the people that work there are really nice. My daughter has become great friends with the concierge. There is a McDonalds with a play yard and a nice greek restaurant (The Marathon) not too far away. They have a special rate if you say you're going to St Justine's (~$120 I think). They do not have a pool and they do not have kitchenettes that I know of. We always pack a big cooler.

My daughter has had the same brace since July 2004. We try to buy extra snaps before we leave Canada. We started out having them replaced at a shoe store, but one time when there was nobody available for several days - we bought a snap kit at the hardware store and my husband replaces the snaps himself. I also had a friend sew new velcro on the thigh bands.

We have Anthem BC and BS insurance. When we first approached them they said they would not cover it because it was not an emergency. I have sent them all receipts and a letter from Dr. Rivard and they continue to reimburse a substantial portion (I think 80%).

Good luck with your trip. The first few times are a bit overwhelming, but it does get better each time.

Ann Rairdon

[rtremb]

When we have travelled throughout Quebec I use the Bonjour Quebec website to view hotels in advance. This is the link to the accommodation search:

http://www.bonjourquebec.com/qc-en/hebergement0.html

[BETall]

Hi Betall,

I see the benefits of Schroth and the Cheneau brace however it's not something that's readily available to people here in North America unless they are willing to take an international flight to Spain or Germany. Ruth lives in a rural town in Southern Ontario and cannot do a transcontinental flight half way across the globe for regular treatments. :o :o

There are several dedicated Physical Therapist practicioners in this United States Schroth certified. You can go to the NSF www.scoliosis.org.

[Celia]

Thanks Betall, I forgot about that list.

[gwenk]

Hi Jill

We have Horizon Blue Cross/ Blue Shield of NJ. It is a pretty good plan for the most part. I wish you luck with yours. Maybe the plans are different.

Take Care

Gwen

[WNCmom]

We are now proud owners of a SpineCor brace. Our appointment in Atlanta today went well, with both kinds of news.

At the end of August, x-rays at the pediatric orthopaedist showed my son Sidney's T curve at 40, with a L24 compensating curve (out of brace). He is 12. He had been in a Boston brace for 6 months, and the curve had progressed at least 5 degrees during that time, the doc said. Soon after, we decided to go with the SpineCor, which meant being out of brace for three weeks to give his muscles a chance to "wake up."

Dr. Ouellette, a chiropractor in Atlanta, took new x-rays and measured the curves at T48, L34. Then he went back and measured the orthopaedist's x-rays from August, which I had brought along. He calculated the curves then were T44.5 and L31. He believes the original August measurement had measured from the wrong vertebra. So we are starting out from a greater curve than we thought. When I asked him if the curve had progressed in 6 weeks or if the increase was a result of weak muscles and more time out of brace, he said he couldn't say.

So that was an unpleasant surprise. The good news, though, is that the second x-ray today, taken in the new brace, showed a curve reduction of 7 degrees in the T curve (less in the compensatory L curve), which he was quite happy with--a good start.

Overall, we were pleased with the treatment and attention we received, quite different from UNC Hospital, where on many days it has felt like an assembly line. This appointment lasted over two hours. We felt Dr. Ouellette was very honest with us. When we got the brace, we got an extra set of crotch straps at the outset; this is good, because before we left Atlanta the snap came off one of the originals on the brace, and we had to use an extra to replace it.

Sidney wore the brace 6 hours today without a single complaint--and he is not one to suffer silently. Dr. Ouellette told us the chance of avoiding surgery is 50/50, but we are hopeful at this point, praying, crossing our fingers, and everything else. What else can we do?

I know this is a long post, but I thought I'd share.

Mary Ellen

[MATJESNIC]

Mary Ellen,

I wish for you what you wish for Sydney. I hope the Spinecor prevents him from having to get surgery. Good luck with everything.

[rtremb]

Mary Ellen:
We are going to Montreal to get a Spinecor brace for our daughter Esme on October 23rd. Her thoracic curve is close in size to your son's so it will be interesting to see what happens with their curves in the Spinecor.
What style of Spinecor does your son have? I noticed on the website there are three different pictures of the brace - one with a cross across the chest, one with one strap across the chest and one with no straps across the chest. Maybe there are other designs too - I don't know??

[WNCmom]

Melissa--Thanks for your good wishes. I'm glad to hear Nicole is continuing to do well.

Ruth--My understanding is that there is one Spinecor brace, and it is fitted differently depending on the type of curve. Sidney's curve is a right thoracic type 3, and his brace has two straps crossing in the front. Whatever Esme's looks like will depend on the type of curve. I look forward to hearing how your appointment goes on the 23rd.

Mary Ellen

[Celia]

Ruth,

I read in another post that you saw a chiropractor by the name of dr. "H" in Peterborough???? This was the same chiro I took Deirdre to the day after I discovered her scoliosis and before going to her pediatrician (who was on vacation at the time) and was then referred to dr. Hedden. This chiropractor wanted to put weights on my 19 month old daughter's head and shoulders. She had a 60 degree curve at the time!!!!! He didn't want her to wear any kind of brace whatsoever and claimed to be a scoliosis specialist. In retrospect, I can see he didn't know the first thing. He kept referring to her scoliosis as congenital :confused: He called the house numerous times trying to convince me to go in for treatments. The last time he called was the day she went into her first cast.

Is he now doing the Pettibon and Spinecor combo????

[rtremb]

I would also find it bazarre to suggest putting weights on a 19 month old child!! I think there are big differences between treatment of scoliosis in a young baby and scoliosis in a teenager. You certainly did the right thing for your daughter.

I think this might be the same chiropractor. He is not combining Spinecor with Pettibon. (I don't know if Dr. Morningstar is either - just that he is wanting to be Spinecor certified.) It is my husband and I who decided we wanted to do this. We decided we wanted to make sure Dr. Rivard was okay with this combination which is why we asked asked him about putting the two together.

While we are following the Pettibon treatments with a chiropractor in Ottawa we still want Esme to be wearing a brace. Spinecor is our choice because she is only just outside the protocol, Dr. Rivard gave the Spinecor a 10-15% chance of benefit and we want her in a brace when she has a growth spurt. She can't wear her Charleston night braces because they cut off the circulation to her arm.

Dr. H wants us to go up to Peterborough again once we have the Spinecor because his treatment now includes a custom TLSO brace for four hours a day - part of this time while exercising. The custom TLSO is made to the apex of the thoracic curve and, we are told, will help to reduce the curve. We haven't decided yet whether to go to do this. I was just reading a new power point document written by Dr. H and being presented to chiropractors - I am hoping this will help us to decide what to do. It contains the newest ideas (!) ...... there is another chiro conference this weekend in Toronto to explain new treatments for curves over 30 degrees - our chiropractor will be attending. The Pettibon chiropractors have been travelling all over the world gathering scoliosis treatment ideas and are starting to implement the things they have learned (i.e., new exercises).

Our chiro in Ottawa can give Esme the other treatments like balance exercises, a little manipulation, massage, stretching. Esme does the at home wobble exercises, leg lifts (3:1 ratio), arm punches, a one pound head weight twice a day, neck traction and goes to sleep on a c-roll. These are making Esme feel better - less pain and more flexibility.

Sorry for the long post - trying to explain where we are at with this and not end up sounding like a fruitcake! We are just trying to do the best we can for Esme with limited options before us - we are not happy with the prospect of surgery - not only the short-term outlook but the long-term outlook too.

Ruth

[Celia]

..I think this might be the same chiropractor. He is not combining Spinecor with Pettibon. (I don't know if Dr. Morningstar is either - just that he is wanting to be Spinecor certified.) It is my husband and I who decided we wanted to do this. We decided we wanted to make sure Dr. Rivard was okay with this combination which is why we asked asked him about putting the two together.

Oh, I was under the impression in the "Spinecor Candidates Needed" thread that the new spinecor provider was using the Pettibon method with the Spinecor and Dr. Rivard was in total agreement with this. I was literally floored! The Spinecorporation website specifically states that no other physiotherapy program should be used and it may be a contraindication. I've read of some chiropractors wanting to integrate vestibular testing, manual adjustments, vitamins etc. etc with the brace and this is not the practice in Montreal.

I understand why you would want to try additional therapies given your daughter's circumstances.

[rtremb]

Celia:

The chiro conference in Toronto this weekend is being held by Dr. Morningstar. Our chiropractor is going to ask whether he is combining Spinecor with Pettibon or is just getting certified to provide Spinecor braces. I will post his response on here if we get an answer to the question.

We also read on the Spinecor sites that no other therapy should be used while using the Spinecor brace which is why we wanted to check with Dr. Rivard if it was okay to do Pettibon with Spinecor.

I finished reading Dr. H's power point document last night. The new idea is to have the patient wear a modified TLSO brace during exercises/weighting in the morning, take it off, go to school, come home, do exercises with brace and keep the brace on until bedtime then take it off again to sleep. Don't know whether I can agree to this since we have been trying to avoid hard bracing so we don't weaken Esme's back muscles! There is also some new treatment with a vibrating table which I am hesitant about and think we should know more about any potential damage from this kind of vibration on the spine.

Ruth

[Celia]

The chiro conference in Toronto this weekend is being held by Dr. Morningstar. Our chiropractor is going to ask whether he is combining Spinecor with Pettibon or is just getting certified to provide Spinecor braces. I will post his response on here if we get an answer to the question.


Theses chiropractors are having a convention to see if they can combine the spinecor with pettibon??? What a joke! Should chiropractors be able to make arbitrary decisions that will combine questionable unproven therapies with the spinecor and charge patients for it? Patients should have a choice whether they want to go along with these bogus therapies and not! :mad:

In addition to your other concerns, your daughter should not be wearing a 1 pound weight on her head! Traction and hanging from monkey bars would be a good start.

[rtremb]

Celia:
The conference is to discuss new chiropractic treatments for scoliosis curves over 30 degrees. We asked our chiro to ask Dr. Morningstar if he is combining Spinecor with Pettibon.
Just wondering - why are you against the wearing of head weights?
Ruth

[Celia]

One of the theories of scoliosis progression is the Vicious Cycle Hypothesis and it was put forward by an orthopaedic surgeon, dr. Stokes. In part it states that asymmetric loading on vertebral growth plates will cause further progression. By putting weights on your daughter's head and shoulders, you're adding extra gravity/load on the spine which will cause the curve to progress even more.

[rtremb]

Celia:
Do you have a web-link where we can read about this study/theory as it relates to head weighting?
Thanks. Ruth

[Celia]

I don't think dr. Stokes envisioned anyone putting weights on one's head to correct a scoliotic deformity but it stands to reason that the idea of asymmetric loading is the same. Here is one of his articles on the Vicious Cycle Hypothesis.

http://www.scoliosisjournal.com/content/1/1/16

[gallathea]

Hi Everyone:

Annabel had the vertebral stapling surgery done last week at Shriners in PA. She's recovering well, and we should know in a month or so what kind of improvement it's made initially. I had about 10 t-shirts custom fitted for her to cover the Spinecor strap that went up to her neck, and I'm wondering if anyone would like them. They're all about size 8. If someone wants to send me their address in a PM, I'd be happy to send them along.

Best,
Caroline

[rtremb]

Celia:

I have read the document by Dr. Stokes. I have written to him asking his opinion of Pettibon body weighting. He may not respond - I am sure he is a really busy man - but I am very interested in his opinion given his research findings. Thanks for sending the document.

Ruth

[Celia]

Ruth,

Since you're seeing drs Rivard and Coillard on the 23rd why not ask them what their opinions are regarding weights to the head and shoulders to correct a scoliotic deformity and whether they feel this is a contraindication to the brace and effective scoliosis management. You should make a point that prescribing chiropractors intend to combine this asinine therapy with the spinecor brace and charge patients good money for it.


Caroline,

I'm so glad things went well with the surgery.

[MATJESNIC]

Caroline,

I wish Annabel a speedy recovery and great success from the stapling surgery. How did everything go?

[rtremb]

Celia:
We have already spoken with and emailed with Dr. Rivard about Pettibon treatment. We do intend to talk with him and Dr. Collard about this when we go to Montreal next week to get the brace.
Ruth

[gallathea]

Hi Melissa:

The surgery went well. Annbel was up and walking within a day or so, and is now pain free (a week later). The folks at Shriners are truly amazing in their attitude and care. Only time will tell if this has "worked." We'll know in six weeks, after the first post-op x-ray, if there was any correction. But with this procedure there seems to be potential for correction over time as well as she grows. Given that she was progressing in the brace, we felt like this was our best shot for now.

Thanks for asking!
Caroline

[christine2]

Hi Caroline
Please keep us up to date. I have had the thought of stapling in my head for quite some time, because bracing has been very successfull for us so far, I have not wanted to admit it to anyone.

[structural75]

Ruth & folks,

The conference is to discuss new chiropractic treatments for scoliosis curves over 30 degrees. We asked our chiro to ask Dr. Morningstar if he is combining Spinecor with Pettibon.
Just wondering - why are you against the wearing of head weights?
RuthWeighting the spine asymmetrically is not a very wise approach, despite any evidence otherwise. Adding compression to a scoliotic spine is a bad idea from the start and could have lasting negative consequences on the intervertebral discs, not to mention other structures. Recent studies have shown that constant forced loading of the discs causes physiologic deterioration of the connective tissue complexes they are comprised of. Whereas rapid intermittent loading stimulates positive physiologic processes, promoting healthy formation and function of the discs.

I won't bore you with the details or any further comment... but I thought I should say something about this barbaric and ignorant methodology. Pardon my frustration.

With Regards,
Structural

[MATJESNIC]

Caroline,

If I had a young child and he or she was progressing in a brace, I am sure I would have made the same decision as you did. We had inquired about it for Nicole but she was not a candidate. I wish Annabel the best. Are you coming back to Phila for your appointment?

[mpj]

Hello,

Just wanted to hear from anyone who has heard of a girl with a left thoracic curve, diagnosed as juvenile with no underlying causes. Madeline just had an MRI. I was almost certain that something would show up, but it came out clear! :) Of course we were really happy about this. However, now I am wondering how uncommon this may be. Maybe I was wrong about this being uncommon? Or maybe she had infantile scoliosis, and it was just undiagnosed? She was diagnosed at age 7 and by age 8 her curve was about 24 degrees. Now we are having good luck with Spinecor and are down to around 5-7 degrees. Just curious what anyone has heard.

Thanks.

Sarah

[Celia]

OMG!!!! :eek: Structural and I actually agree on something! I'm feeling faint.

Sarah,

I came across a really great article recently on Juvenile scoliosis, if you'd like I'll post it.

[mpj]

Celia,

That would be great.

Thanks.

Sarah

[cherylplinder]

Sarah,
I am so happy about Madeline's progress. That's great!
I was wondering about you the other day. If you posted before, I missed it.
Hugs!
Cheryl

[Celia]

Celia, That would be great. Thanks. Sarah

In summary, the authors in the following article state that even though 20% of scoliosis cases are known to have an underlying cause which could be found through an MRI, the remaining 80% of unknown "idiopathic" cases are likely to be postural in nature and should be regarded as a biomechanical deformity regardless of initiating factors - hence the success with the Spinecor! Like many other researchers, they consider the classification of idiopathic scoliosis into the three distinct infantile/juvenile/adolescent groups as "arbitrary" and should not preclude the possibility that juvenile or even adolescent scoliosis could have originated much earlier or even in utero.


http://www.scoliosis-support.org/uploads/juvenile.pdf