spinecor

[mariaf]

Again, perhaps, Stepanie or someone else will address your first point. I'd like to hear the answer myself to satisfy my curiousity.

With regard to the second question, I have a young son so we obviously didn't discuss Risser, but many parents have said they were told that one has to be either Risser 0 or 1 to be considered.

In terms of age, or let's say, amount of growth left for a male which can't be measured by Risser, I would reiterate what I stated earlier that many variables (including family history, flexibility, etc.) are taken into consideration.

That being said, the oldest they seem to take on GENERALLY (there could of course be exceptions) is about 12 or 13 years of age. They are looking for a child with "considerable" growth left to do. Given, for example, that boys often don't have their big growth spurt until 15 or 16 years of age, there's probably no reason why a 13 (or even 14) year old boy who has not yet had that growth spurt wouldn't at least be considered or looked at for the procedure.

Hope this helps.

[milesmom]

It is all interesting Maria, and so many facets to it. The concept of "lots of growth" is what compells us to address Miles' surgery at such a s young age. I will certainly have more concrete answers on the 17th, as to the status of the newer staples being developed ( size wise). I plan to make this the main focus of this appt, since the curve is holding so well. If they are ready next year, then so are we. I feel that with Miles' pliability and the huge amount of growth left to do, that we should have really positive results.
A consultant joins us in each appointment, as they are tracking Miles whole experience due to his young age. I am under the assumption that he will be the youngest patient to date ( maybe not by next year) to have the procedure,as the youngest I know of is four. Rank by age is the very least important to us--but also am looking for any younger patients between now and our tentative date to track as well.
I read of so many parents who have had the procedure with fantastic results, saying "I wish we'd have opted for this sooner" and this is what makes me feel good about having this option for Miles at such an early stage, so that he can put it behind him.
I received your package today, absolutely wonderful, thanks for the contribution-- I know the entire Shriners staff will be so pleased by what we all have together. I maintain, that through the rough spots...so much GOOD can come of this situation.
talk to you soon-

[pat]

hello! Had our appt. in Montreal last week, she's still holding in brace at a "6," seems like she's had a lot of growth also (I'll have to check past records.) And her x-ray looks improved from our last appointment.

The weather was beautiful, we ended up spending a couple nites at Mont Tremblanc, all snow covered!
p

[stephanieC]

Gerbo,

Since you asked, as Maria said, during the VBS surgery the surgeon, prior to putting the staples in, manipulates the spine into a more "correct" position. Not so much the curve, as the rotation of the spine. (but since these go hand in hand perhaps the curve sees some immediate correction too??) The manipulation of the spine is what takes the majority of the time.

After the spine is in a positon that the surgeon is happy with, he places the staples. The procedure is usually done thoroscopically with 4 to 6 small incisions. The staples are placed into each affected vertebra. To be honest, I am not sure if this immediately affects the curve. (Good question and I will ask it on Dec 14th when I see Dr Asghar again for Michela's pre op visit!!) The child is then in the hospital 4-5 days on average. Then they go home with a brace. This is not a scoliosis brace as it does not apply tension. It is a brace they use simply to "remind" the child that they just had surgery and keeps them from doing too much activity. These children return to school generally within 4 weeks, some sooner, some later. The child has a follow up visit with the surgeon 6 weeks later. An x ray is taken and that is when the results of the stapling is first seen!!

The surgeons will tell you that the goal of stapling is to prevent progression. Getting correction, however, seems to me very common, and of course delights the parents and surgeons alike!! Their are children who do not get correction. Why this is, I do not know. Most of the children that I follow have indeed had correction

As the child grows, the staples hold the curve by altering the performance of growth plates at the site. Many times, this leads to even more correction.

After the 6 week post op visit, the child can return to a full activity.

Stephanie

[rtremb]

Pat:
Great news. It is wonderful to read that the brace is working.
Mont Tremblant is beautiful isn't it? If you ever want a great vacation experience I'd recommend a visit to Quebec City too.
Ruth

[cherylplinder]

Pat
I am so thrilled that she is still holding!
I know you were concerned when she went from 0 or 1 to 6.
How much longer does she have in brace?
Cheryl

[pat]

[QUOTE=cherylplinder]Pat
How much longer does she have in brace?

Thank you Ruth, I think we will head to Quebec City next time! We had maple syrup on snow, it was so good!

Cheryl, we met a beautiful young lady there; she came out of her brace four days prior to her appointment!! Quite exciting, it was nice for my daughter to see the light at the end of the tunnel. The young lady was successful with her brace, she'd been in it about two years, and she was 15. Beautiful girl, awfully nice too, she's a serious ballet dancer. Just nice to visit with her and her mom (maybe it's someone on this forum!) p

[pat]

sorry Cheryl, I never answer your question "how much longer in brace." No light at the end of the tunnel for us yet; she hasn't had her period yet. p

[cherylplinder]

Rachel hasn't had her period either. Remind me, how long do they generally brace after they have their period. Do you know?

[cherylplinder]

Celia's original comment that started this deluge was to Ruth and appeared to me to refer to fusion, not VBS, which I'm afraid is the only other option open to Ruth with Esme's high curve(51,52). If you had been following the thread, you might have known that.
As Gerbo said, once things start deteriorating, it is hard to respond always the way one might wish.
Consequently, mom of miles, your posts have deteriorated also and have been less than mature. It bothered me that you did not seem to recognize that your posts had plummeted with the others. I'm not trying to make you mad, really, everyone needs to recognize the error of their ways and correct.

You are all valuable members of this forum with much to offer and we all need each other's support.
It's really time for all of the bickering to stop.
I wish we could all get together and have a "sorry we got into a fight and let's get along" party!
We all have a long road ahead. I need all the support I can get! I have no idea what the next few years hold.
By next week , I may be a VBS mom, provided it is still an option for Rachel. VBS is the only other option open to me after Spinecor. I have exhausted all the others.
I think Rachel is OK, but you really never know.
Hugs to all.
Let's have a glass of wine together this evening in honor of a truce. We really need each other's input and the flow of information.

I will post my glass of wine when I have it, in case anyone wants to join in! I had a tough week. I deserve a glass of wine and some relaxation. My tough week had nothing to do with this thread, just in case someone misreads this comment.
I love and care for you all!

[stephanieC]

Great Cheryl,

I'm always in favor of a glass of wine. I am having my now...Shiraz.

I still, respectfully, disagree a bit about why "things" deteriorated, but I 100% agree with you that we should all be helping and supporting eachother down this harrowing scoliosis journey!!

So, here's to you Cheryl......

Stephanie

[cherylplinder]

LOL, I'm always in favor of one, too! I have been running around all day and have got to go and get some in a bit, but I will join you shortly!

I used to try to have a glass of wine every day, but it slows me down too much, and on the average day, I need to keep running til 10 or so. By then, I don't want any, I just want to go to bed!


I am looking forward to flying next week. Last time, I had a cocktail before the flight and read a good book.It was relaxing and fun! Rachel and I have got to make a Books A Million run and get our reading material for our trip!

Anybody have any suggestions? I love a great book!

[pat]

Rachel hasn't had her period either. Remind me, how long do they generally brace after they have their period. Do you know? I've heard two years after. Looking for suggestions for a good book - - My Sister's Keeper. p

[cherylplinder]

Thanks for the info and the book suggestion, Pat!
That means Rachel probably has 3 more years of bracing, at least. I got my period when I was 13; Sarah did the same. Rachel is 12. I think the average age for getting your period runs in families.

Anymore book suggestions? I can generally knock out a book each day of travel. I need at least 2.

Funny the little things you learn to treasure and be grateful for. They can be big.
Rachel and I both agree that scoliosis has given us a lot of time together and that has been a blessing to us both. She has learned to trust God and depend on Him for His strength, encouragement, faithfulness, love and care.
I get time to read, which I never have!

[Celia]

Pat,

I'm so happy for your news!!!! Let's toast to bright futures!


Cheryl,

I've been thinking of you and I hope the news is good next week! (((HUGS)))

[mariaf]

What a joke! The foul language you and your entourage use is something else.

Celia,

Let me start by saying this is a PEACEFUL post. Please go back and read the last several posts. The tone is extremely civil and I think someone hit the nail on the head when they said we should all be supporting and helping each other. I'm very proud of how everyone is willing to move on.

We ALL have said things which are out of character for us. I'm sure that most of the time everybody on this forum is NOT like that. The folks that I know certainly aren't like that and I'm guessing that neither are the members whom I don't really know.

For the sake of helping everyone's children, can we try - going forward - not to use sarcasm or negativity - or to reopen old wounds?

Please don't construe this as an attempt to place all the blame on you - that's not what it is - I'm just asking you because of what you just posted after everyone was trying to get along.

[Celia]

Yes! I'm willing to move forward and forgive and forget if you and your foul mouth hooligans retract some of the hurtful things you said about me! All in good fun, right???? Let's try to stick to the facts and not get too personal.

[gerbo]

We ALL have said things which are out of character for us. I'm sure that most of the time everybody on this forum is NOT like that. The folks that I know certainly aren't like that and I'm guessing that neither are the members whom I don't really know.this is the problem with these forums, with the anonimity it allows it is so easy to really "go for it" in right or wrongfull anger, and say things which face to face never would or should be said. If we are all feeling a bit "bruised" by all this, it indeed might be worth going back over the last 3 or 4 pages and either edit or just remove posts which do not support or inform and whose only purpose was to express anger or to attack somebody or their views in a personal manner, whilst keeping in the more factual elements. A willingness to make amends (and literally "take our words back") would go a long way in restoring some mutual trust and respect.

[mariaf]

Celia,

My posts were written against some of your methods of addressing folks regarding stapling, never intended as a personal attack against YOU. But I'd rather not go back and rehash anything.

I hope that you also will agree to be a little more open minded regarding the stapling and the fact that for CERTAIN kids, not all but for certain kids, it really is a good option. I think you are under the wrong impression that we are somehow convincing or advising everyone to go this route immediately - we aren't. We just want parents aware of, and able to research, ALL options they have.

I am hopeful that going forward, everyone will be a little more thoughtful before they post - I know we all want this to be the kind of site that parents feel safe coming on.

[stephanieC]

Cheryl,

My Sister's Keeper is a really good book!! One of my favorites... it was a good suggestion. (keep the tissues near by though)

Another enjoyable book, particularly good for the season is, Skipping Christmas by John Grisham.

Good luck on your appointment.

Stephanie

[gerbo]

But I'd rather not go back and rehash anything.

why not? been done before, and really there is stuff from page 164 onwards which has no place on this site, and is still there for all to read! As much as I would encourage Celia to remove posts which are seen as sarcastic, I would urge AmandaP, Milesmum, StephanieC and yourself whether whole posts or parts of it can be editted away, without reducing the informative content.

Also Maria, I have little doubt that Celia will agree that stapling has a place as a treatmentoption. The other side is that some thought need to be given by yourself and others how to respond to a post you do not agree with. As I found out through discussions with Structural, it is possible to be factual and informative, without taking things personally and getting angry.

Does this alll make sense??

[stephanieC]

Gerbo,

The point was to move forward. Let's do just that.

Stephanie

[stephanieC]

originally posted by Gerbo

"Also Maria, I have little doubt that Celia will agree that stapling has a place as a treatmentoption"

Why not?????

Not looking for nasty or sarcastic comments, not looking to be nasty or sarcastic, but only to have a "real "exchange" of information as you suggest we should have.

Stephanie

[cherylplinder]

I agree with Gerbo.
Why not?
Let's do everything we can to heal any wounds. Any posts that did not express your sincerely felt love and support of each other could be deleted.
We all have our better selves that we wish we always expressed.
I wish I could go back in real life and correct my mistakes as easily.

[MATJESNIC]

Pat,

I am happy about your news. How is Jamie doing?

Cheryl,

I wish you success at your upcoming visit. If you think of it, please ask Dr. Rivard if he has received any of the news and/or pictures I have sent him. He gave Nicole his e-mail but we have not heard from him since he told her she needed surgery. He and Dr. Dormans know each other and he actually recommended Dr. Betz or Dr. Dormans to do the surgery. I thought he would enjoy seeing the picture of Dr. Dormans and Nicole at her two month post-op visit. Nicole really misses going there and really liked Dr. Rivard.

Good luck.

[mariaf]

Also Maria, I have little doubt that Celia will agree that stapling has a place as a treatmentoption. The other side is that some thought need to be given by yourself and others how to respond to a post you do not agree with. As I found out through discussions with Structural, it is possible to be factual and informative, without taking things personally and getting angry.

Does this alll make sense??

Yes, it makes sense and that's always how it STARTS out. Something is posted that I, or someone else, feels is either inaccurate or misleading and we INITIALLY respond with facts to dispute it. That is sometimes not received well, and it escalates from there.

I also am curious about the answer to Stephanie's question. She asked "Why do you say Ceila will never agree that stapling has a place as a treatment option"?

I read where Celia said she's not "anti-stapling" and while I know it's not her treatment of choice, I 'd like to think she feels that stapling, like other methods, has its place because to say otherwise (that is has NO place) would be absurd.

If she truly will. as you say, never agree that stapling has a place as a treatment option, then I don't see the debate ending anytime soon. I will only hope it remains civil. But that has to be by ALL parties as I'm sure you'd agree.

Regards,

[stephanieC]

Wait ....Gerbo,

did you mean you think she would agree there is a place for stapling as a treatment option or doubt that she would agree that there is a place for stapling as a treatment option??

Either way.... there is definitely a place for it!!!!

Anyway, as someone said before and I said I would respect it, this is a spine cor thread. Back to spine cor...which I follow as well because I have another child to research for, so I am often on this thread gaining insight from other moms.


Stephanie

[mariaf]

OK, Stephanie, now I'm confused - LOL!

I did assume Gerbo was saying that Celia would never agree that stapling is an option. That's just how I read it. I guess you did too originally because you said "why not"?

But now I'm reading it again and it could be meant either way. Perhaps he did mean he doubts she'd argue with the fact that stapling has a place as an option.

Gerbo?

Like you said Stephanie, either way it's time to move this thread back to the topic of Spinecor!

[jillw]

Stephanie, you had me scratching my head when I read your first post (maybe I had too much wine last night) :rolleyes: Because my interpretation of Gerbo's post was not what you initially thought, but what you brought up later...i.e. to paraphrase - he thinks Celia would agree that VBS holds a place as a treatment option for some people. I could be wrong, but I think your second interpretation is right.

Pat, that sounds like great news! Since I'm new to the board I don't remember your daughter's history (but will search old posts to see). Either case, holding at 6 degrees during a time period of significant growth is AWESOME! How much had she grown since the last appointment?

Cheryl, I will be thinking of and praying that you continue to hear good news again.

[cherylplinder]

Thanks, Jill!

[cherylplinder]

This is a presentation of the Orthobiom system developed by Dr. Rivard.
http://www.mediaprosf.com/vbllc/march12.htm
Go down to the presentation by Dr. Rivard. Interesting. I don't know how close to clinical trials he is.
I think I understood enought to glean that the system is to be used to control the curve until the child stops growing. He is rather hard to understand. I thought I heard him say that when the curve is large enough before the child finished growing to need fusion, this would be an option to avoid fusion. I plan to ask him more when we go.


Melissa,
I will make a list so I will remember to ask him if he got your e-mails. Thanks for the warm wishes.
Cheryl

[rtremb]

Hi Cheryl:

Thanks for the link to Dr. Rivard's presentation - too cool.

I also listened to the presentation by Benoit Sicotte, President & CEO, Biorthex, Inc. He explains some more about the procedure and material to be used. Like Dr. Rivard he says they are ready to go to clinical trials with humans and I think he said they need 132 patients.

Ruth

[milesmom]

I think that every single parent here shares some common bonds. Fear. Fear of their childs future, fear of making the right decisions. Fear of how quickly ( or sometimes how slowly) scoliosis can change. Heartache. That heartache that you feel when your Dr informs you of changes, when you hoped for better. The heartache of the first few times that you tighten the straps on that brace.( or the stages of casting, and cast changes, and even though it it something I am not familiar with--the daily upkeep of a cast which cannot be removed) The heartache that you feel as a parent when another child pokes fun at your child, or when a crass adult in the grocery store asks you questions about "that thing" you have on your child, or "what happened?" to him...
Confusion. Confusion about simply finding clothing to suit their situation. Confusion when you and your spouse may disagree on what to do next. Confusion about how protective to be about their physical activities. Stress. Stress with all of the planning and traveling for your idea of the best care, making sure the other children are never feeling put aside, or put upon... managing the "rest" of lifes obligations, as before the diagnoses.
Stress when well intended relatives or friends offer advice, input, or their ideas on what should and should not be done.
Anger. Anger that we feel when ( even though it ebbs and flows) as we look at our child, sleeping, or playing, and wonder why it had to go this way. Anger that flares when others tell us how it "could be worse" ( which is true..but that is true in just about any situation) regardless of the well meant words Ive heard that "at least its not life threatening"...my retort, if only in my head...is that this is true, but it is QUALITY of life threatening, and impacts families, feelings, futures. Finally...Anger. Anger that we sometimes let fly at spouses, relatives, doctors, friends, ourselves...and maybe even strangers on well meant forums.
Ive read over older posts, and rather than focus on the negatives...see that everyone just tries to cope, and make appropriate decisions for their child, hope for the best, and forge ahead with anything new and viable.We all carry the weight of making life altering choices, and thats a darn hard thing to cope with at times. We study and research till all hours of the night, looking for that one thing...that one thing we may have missed that will help. We all want the same thing. We are not (all) medical professionals, certainly not mind readers, but just want to go to sleep knowing we've done all we can for that day, and typically worrying about the next step.
Finally, on the upside...I see that while I'd rather not have this happen for my son at all, there has been a added closeness to the family ties. We have learned how to rally together, volunteer, help out, calm down...assist the guy in the wheelchair whose down on his luck, listen more intently to a child whose been through even more trials than us..share, count blessings...and think. I'll imagine that others have seen this happen as well.
Everyone here has both a burden and a beautiful thing. I think that regardless of exactly HOW each child has and will be treated, it will shape who they are in a positive way--and it CAN shape us to slow down, be more tolerant, and accepting. Sometimes, in the throes of more worrysome times- we all can be guilty of losing sight of that, but I firmly believe that on this site, other sites and even for those who have yet to find support, the feelings run the same. Again, we all want the same thing...the best outcome for our dear children.

[Celia]

I choked up while reading Milesmom's post so I can't really remember what I was going to say... I think it was along the lines that we all try to make the best decisions given the information we're presented with. Erica's story is amazing and I think Maria's David is a success as far as I can tell given that he was diagnosed at such a young age and has avoided repeated surgeries for so many years and when I compare this with other children with early onset scoliosis who have repeated growth rod surgeries - there is no comparison! So YES, I do see the successes!

[MATJESNIC]

Mom of Miles,

I just got home from a party and read your post and I got so choked up. All of the feelings you described are so right-on. That is why we all need each other so much. Nobody else understands. How can they? I believe, Maria, it was you, who I discussed this with, when we met that time. When people say "It could be worse." "This is our worse."

Nicole was supposed to go to a big Bat Mitzvah party tonight. It was going to be her first big outing since surgery. Well, she came home with a 102 fever yesterday. She was so sad and disappointed. Part of me felt so badly that here was one more thing she had to miss out on. Another part of me thought maybe this was meant to be. After all, she would mostly be sitting instead of her usual dancing and playing games all night long. It would have been too dangerous for her to be with a huge crowd of kids potentially bumping into her. So she may have had a miserable time watching everyone and seeing what she can't do right now. This is just another example of feeling sorry for Nicole at times. Thinking it's not fair that she is going through this. Then feeling guilty for feeling so badly when I should be counting my blessings. So you see, I feel all of those feelings you have described. And I feel so blessed to have all of you to share them with. There is no way I could be getting through this without you. Thanks again.

[gerbo]

well said, mum of Miles! :) :)

[stephanieC]

Adele and Melissa,

Both of your posts made me choke up. You expressed openly what we are all feeling on some level. Melissa, you were right on when you said yes, it could be worse, but right now, what we are all facing is our worse. What makes it so scary is in our hearts and the root of our deepest fear, is that we know it can get worse and we pray all the time that it won't!!

Melissa, I never even realized that Nicole was still going thru so much. I knew her fusion was a success and her recovery was going well. I never realized the length of recovery time for fusion patients. How it affects her daily life every day right now. So much to go thru for such a young girl!! I will pray for her that she remain resilient and that her recovery continues to go well.

Hugs,
Stephanie

[MATJESNIC]

Stephanie,

Thanks for your kind words. I am relieved that the actual surgery is over. But that was always just part of the worry. Now we have to wait until at least 6 months until the fusion takes place. But it's not until a full year that most restrictions are lifted. So in a lot of ways, it is a long recovery. I am hoping that after one year, I will start to relax and try to forget about it as much as possible. Nicole and I keep track by days, weeks, and months. Today I wished her a happy 80 days post-op. After one year, I want us to get back to our normal lives as much as possible.

[milesmom]

This is an amazing, compelling and heartwrenching story. I hope that all goes well as the days pass. I cant even speak on fusion ( experience-wise) but can relate in the way that this darned scoliosis has us doing just as you say...counting days, weeks, months...I gauge alot of my time according to our 4 month check ups. The stress-y feelings start weeks ahead of the appointment..then who knows after them?...it all depends on the news. I either exhale a bit, or times when its not been so great..start the whole worry/research/ cycle all over.
Your account of her missing the Bat-Mitzvah..the disappointment, grabbed my heart. I noted her age, and I have a 12 yr old girl myself. I am often oddly grateful that if it had to happen to any one of my kids, Miles is young, and oblivious to the comments, the not being allowed to do certain things, even the fact that his brace is not the norm for everyone...BUT had it been my 12 yr old girl, or my 10 yr. old son I just cant imagine how it must feel to have to keep your chin up and ease her thru disappointments like that. Its hard enough being an adolecent! As I said in my prior post though, there will be struggles thruought, but it will shape her into such an accepting, resilliant, adaptable, thoughtful adult.
Best to you both--have happy holidays and absolutley the best of times this New Year.

[cherylplinder]

I sent a PM to Ruth yesterday or today, telling her that I was going through my usual previsit panic. I look closer, I observe more, and work myself into a panic before it's all over, sometimes.
Rachel's alignment is off, more than before, I noticed it looking at her a couple of days ago. I quit looking that close all the time. Good for her! I used to drive her crazy! Now I only do it at appt time. I may stop that if I have enough self control. What good does it do me? None! It makes me panic.

Ruth helped me, she said she thought something was off before the last appt, but it wasn't . I am going to run with that . Otherwise, I will make myself nuts before Thursday.

I really trust God , but I really want to avoid surgery! LOL! I know you all understand. Melissa, you probably better than anyone!

I am so grateful to have so many successful surgical outcomes to look at. It helps every time I contemplate that!

Thank you all for being there in a way no one else could. I love you.

I treasure you.

[milesmom]

Oh how I can relate.
As in my last post... I get so agitated, knot in the stomach ( we're going soon too, 17th)..I try not to be snappy with the rest of my family, but admit that I sometimes do. ( I mean, really..when I have the other two bickering "she touched my stuff...but he moved my ipod.." I want to yell..HELLOO!!!!! Lets all focus on what happens at Miles' appointment...but no, thats not fair, I know. Not for the kids anyway.
My husband stays relatively non-verbal over it. Not to say that he doesnt worry, but he doesnt get outwardly worked up as I do. I guess one of us needs to be more level.
So many facets to this...the appointments, the family, keeping up with everything.
Must say, I join you in the knotted stomach, pre-visit jitters...
Best of luck on your appt.

[WNCmom]

Just a few days ago my son said to me, "Mom, you're looking at my back again. Stop looking at it." I hadn't realized I was doing it so much or that it made him feel like an object. Hard not to do...and we are three months away from the next check-up!

Hang in there, Cheryl. We're all rooting for you and Rachael.

Mary Ellen

[cherylplinder]

Thanks!

Cheryl

[rtremb]

This is a presentation of the Orthobiom system developed by Dr. Rivard.
http://www.mediaprosf.com/vbllc/march12.htm
Go down to the presentation by Dr. Rivard. Interesting.
Cheryl

Did anyone else watch the video of Dr. Rivard that Cheryl posted? There is also a video of the CEO of Biorthex Inc. talking on the same subject.

I am wondering what everyone thinks about this new treatment method. It is going to clinical trial now which I think is pretty exciting.

Ruth

P.S. There is a really big storm going through Ontario and Quebec tonight and all day tomorrow -- so travel on the roads to Montreal will be dangerous - please take care. Flights might be delayed too. Don't know which day you are going Cheryl .....

[MATJESNIC]

Stephanie,

Just saw that I had spelled your name with an "a" on the end. A typo that I just fixed.

Cheryl,

Yes, I know exactly how you feel. I prayed to God all the time to fix Nicole's back. When we were told we needed surgery I decided that the plan I wanted for Nicole's back was not the plan we were going to get. Her back was going to be "fixed" but in a different way than we wanted.

Please have a very safe trip. I hope you all get what you want out of this appt. It really is out of your hands. You are doing the very best you can. Nobody could do any better. The best of luck to you all.

Miles Mom,

You are right. This is a hard age. I am glad we only had this for a few years. She was diagnosed in 6th grade, wore the spinecor and had surgery in 8th. I am hoping that in a few months she will really start to put this all behind her. Right now the biggest void in her life is not being able to dance with her friends. The biggest challenge will be when she realizes her flexibility is not the same.

Do you all watch Extreme Makeover Home Edition? I didn't see the beginning, but the children were all being sent to CHOP for their illness. That is one area where Nicole has been very excited and positive. She loves Dr. Dormans and CHOP and feels so blessed that we live close by to an amazing hospital. We would like to take our 1-year bichon to visit children there. We just got the paperwork and it involves some training and certification. So we can't do it yet. But I am happy that Nicole wants to help others. She really is handling this well. I need to follow her lead.

Have a wonderful day everyone.

[Snoopy]

Stephanie, you told Melissa you didn't realize there was so much involved in recovery. Trust me, there's a lot and it tends to last for a full year and without people like those on this forum sharing their experiences, we'd never be prepared.

When my daughter went back for her one year post-op appointment, she asked her surgeon if she could go hunting. He told her NO, not until she was one year post-op. Hunting season was two weeks before her anniversary date. She didn't go.

At about one month and again at five months post-op we ran into other issues. She had to miss out on several field trips. The one at five months, was a trip to an amusement park which she had earned--it was a trip for kids on the honor roll, which she managed to accomplish even without tutoring after surgery. Times like these are very hard.

Over time, we tend to think about our kids' backs less and less. I was writing something on the calendar the other day and for some reason looked at the 7th. I asked Jamie if she realized she will be 3 years post-op on Friday and she simply said, "Oh, yeah. I guess that is the 7th, huh?"

It is a long recovery, but well worth it to see Jamie hunting, swimming, driving, working and doing everything she wants to do without worrying about her back.

Mary Lou

[stephanieC]

Mary Lou,

How wonderful for you and your daughter to be reaching three years post fusion. Congratulations!! How does her back feel now? I hope all in her life has returned to normal and she is happy!!(normal and happy at 16?? lol)

It is good to see that you are able to "forget" about her back now. That the anniversary date could approach without your acute awareness of it. Good to see that scoliosis can become a thing of the past. At least in some part.

I am very scared of fusion surgery and I hope we never face that mountain. However, reading the real stories from people who have gone through it is very helpful. I read a story about a young girl who had the fusion surgery and was able to get back to dancing full time again. (she danced five days a week before her surgery) It is comforting to read how these children who progress and have fusion surgery do go on to lead normal, good lives. It is the length of recovery that I was unaware of. I knew the surgery itself was harrowing but the recovery time is frightening as well.

Melissa,

No need to worry about spelling. Actually it made me laugh because back in college, I had a boyfriend from Spain, he called me Estephania, so when I saw that, it made me think of him!! Good memories!! lol

:) Stephanie

[stephanieC]

Ruth and Cheryl,

I watched Dr Rivard's presentation on the orthobiom system. I also watched a few other presentations. Very Interesting!! It is amazing how these Dr's take their ideas and put them into practice. I think Dr Rivard is doing excellent work. The future for children diagnosed with scoliosis is looking better.

I find it curious though that in the initial statement by one of the speakers, not Dr Rivard, he said this was currently the only non fusion surgery being done for scoliosis. What about VBS?? Sometimes I wonder if doctors follow what other doctors are doing.

Think about how many children are diagnosed with scoliosis and see their local ortho doc, only to be told that the hard braces are their only option. Don't these ortho doctors follow what is going on in there field?? Frustrating!! There are so many other options that are not even "new" anymore, like spine cor and VBS, at least let the parents know there is something else out there to consider! IMHO, I find it horrible that most ortho docs do not even know about spine cor or VBS. They never even mention these to parents as something to consider or research. Many parents simply trust there local ortho because they have never heard of these other options, and they trust that the doctor would certainly tell them if there were other viable options, right??

God Bless the Doctors who continue to push the envelope and find better ways!! :)

Stephanie

[mariaf]

I choked up while reading Milesmom's post so I can't really remember what I was going to say... I think it was along the lines that we all try to make the best decisions given the information we're presented with. Erica's story is amazing and I think Maria's David is a success as far as I can tell given that he was diagnosed at such a young age and has avoided repeated surgeries for so many years and when I compare this with other children with early onset scoliosis who have repeated growth rod surgeries - there is no comparison! So YES, I do see the successes!

Celia,

You also did an amazing job of avoiding repeated surgeries for Deirdre given her initial early diagnosis. I would definitely call her a success story too!

While it could not have been an easy thing, I am amazed at the results that casting has gotten in several cases that I've heard about.

I was just thinking how there are the type of folks who are very laid back and pretty much accept what they are told; and then there are those of us who are a bit more fiesty and determined (we may also tend to be argumentative when we feel it's necessary - LOL!)......but maybe, just maybe, it's that type of personality who will also refuse to blindly accept options that do not appeal to them, but will go to the ends of the earth to find what they feel is a better treatment for their child - be it casting, stapling, Spinecor, etc.

Just a thought :)

[amandap]

This is amazing,

I'm offline for 2 1/2 days and come back to read wonderful and very heart warming posts from various people.

Adele ~ your post brought me to tears because you just completely said what I and most everyone here feels.

Whatever anyone chooses as a treatment option for their child I hope and pray for success ~ I know that there is not one miracle treatment for everyone and we all toss and turn at night wondering if we made the right choices for our child and how our chioces will impact them long term. I just hope and pray everyday that whatever road we do take is the best one.

Hugs to all ~ A

[cherylplinder]

Stephanie,
I think what the speaker may be referring to before Dr. Rivard's presentation is that this surgery can be used in larger curves that would have to be fused before growth was finished. The upper limit for VBS is somewhere around 45 to 50, if I understand correctly.
Many children have been fused at a very young age because of aggresive curves. This is, or more accurately,hopefully will be, an option for a child that has no alternative but fusion.

[mariaf]

I think what the speaker may be referring to before Dr. Rivard's presentation is that this surgery can be used in larger curves that would have to be fused before growth was finished. The upper limit for VBS is somewhere around 45 to 50, if I understand correctly.


Hi Cheryl,

That is absolutely correct.

I am not too familiar with the topic you and Stephanie were discussing but I did want to add something related. I read recently that doctors are working on a procedure ("vertebral tethering" I think it was called) that like the stapling can be done and still allow for growth; but unlike stapling it can be done on larger curves.

Not sure how many years down the road this will be, but I think it's safe to say that with the advances that have been made and that are being made every day, hopefully 10 or 15 years from now, even a child diagnosed very young will have many good options.

[Sherie]

Stephanie, you told Melissa you didn't realize there was so much involved in recovery. Trust me, there's a lot and it tends to last for a full year and without people like those on this forum sharing their experiences, we'd never be prepared.

It is a long recovery, but well worth it to see Jamie hunting, swimming, driving, working and doing everything she wants to do without worrying about her back.

Mary Lou

Mary Lou

I was glad to see this today. We're still in the early stages of recovery and it's good to know that not only is there an end to this ordeal, but one year is a realistic expectation for a full recovery. Thanks for this kind of support.

And a word of encouragement for all you parents here doing whatever you can to prevent surgery, keep up the good work. It's hard, we've been there and it's a long road but you will not regret it, wether it works or not. If your child ends up needing surgery someday, you will know that you've done everything in your power to prevent it and that will give you the ability to accept whatever lies ahead. My daughter is still having a lot of pain and discomfort but she looks amazing (gained 2.5" and is very symmetrical all the way around) and I know she'll be happy about it when she's feeling well. Best wishes to you all.

[stephanieC]

Hi Cheryl,

During Dr Rivard's presentation, he said the orthobiom system would be used on a child with a good amount of growth remaining and a curve between 35 and 50 degrees. (Of course this is probably the optimal range) It would completely do away wth fusion!! It would provide the spine with a guide to follow as it grows. The greatest thing is it has shown in animal studies to leave the spine and all its" parts" very much healthy and intact. While also allowing normal motion and flexibility. That is incredible!!

I wonder if the patient has complete flexibility while they have the system in, or do they get it back after the system is removed? I thought the patient maintains complete flexibility while the system is in, but when I saw the pictures of the system in an animal, it does look like some flexibility
may be lost. I can't really tell. But looking at the pictures, it looks like bending completely might be difficult??

Maria,

I have heard of spinal teathering as well. Dr Asghar had mentioned that they were looking into the teathering. I can't recall specifically what he said about it but I remember it was positive. I will have to ask him when I see him on the 14th. I have a lot of questions to ask. I think Michela is his last patient that afternoon. Good thing for Dr Asghar because I am at three pages of questions now!! lol

Stephanie

[mariaf]

I think Michela is his last patient that afternoon. Good thing for Dr Asghar because I am at three pages of questions now!! lol

Don't worry, Stephanie, I hear he's a very patient man - LOL!

[stephanieC]

Sherie,

Best wishes to you and Sheena that her recovery will go well and the pain diminishes quickly. It is so much for a child to have to endure.

Hugs,
Stephanie

[flowerpower]

Hi all,

I tried to watch the presentations re: othobiom but my web browser can't display anything, computer must be outdated. Could someone give a summary on what it is?
I'd also like to hear if anyone knows much about the vertebral tethering...at Vincent's last appt. our ortho mentioned he is about a year away from clinical trials on this procedure. I didn't get many details other than some sort of "anchor" is used at top & bottom of curve (on convex side?) and some sort of cable is used I guess to hold or gently pull the spine into straighter position?

Renee

[Celia]

Maria,

The funny thing is my husband has nooooo idea what a miracle Deirdre is. He just assumes I'm doing what any mom would do and this is my role to make sure our two children grow to their potential.... and they are! All he cares about is his work and the stock market and which stocks are doing well at the moment! It's a different reality for him. When I think back to when I was pregnant with my two kids and reading at the time "What to expect when you're expecting" and "What to expect during the toddler years" I have to laugh because what I've been through makes all those little "dilemmas" like a fever of 102 for two days straight mentioned in the books seem comical! What we've been through would give any new mom the shock of her life!

[gerbo]

http://www.mdconsult.com/das/article/body/83186184-2/jorg=clinics&source=&sp=&sid=/N/613287/s0030589807000788.pdf

nice little overview; images show that staples actually run from one to the next vertebra, which explains the possible immediate benefit from the procedure in some people

[mariaf]

Maria,

The funny thing is my husband has nooooo idea what a miracle Deirdre is. He just assumes I'm doing what any mom would do and this is my role to make sure our two children grow to their potential.... and they are! All he cares about is his work and the stock market and which stocks are doing well at the moment! It's a different reality for him. When I think back to when I was pregnant with my two kids and reading at the time "What to expect when you're expecting" and "What to expect during the toddler years" I have to laugh because what I've been through makes all those little "dilemmas" like a fever of 102 for two days straight mentioned in the books seem comical! What we've been through would give any new mom the shock of her life!

Celia,

That's so funny - when I was posting about what kind of person it took to look outside the box for better alternatives I thought of my hubby as well. He's a great dad and all but he just accepted what he was told by our former ortho (to keep David in a hard brace until he was done growing and hope for the best) because he figured she was the doctor. Granted, she had a good reputation and maybe she was the doctor but we were the PARENTS!

When David was first diagnosed in 2000 my oldest was 12. I thought to myself "I've been a mom for 12 years - I thought everything could be cured with a weeks' worth of antibiotics"!

I think it was Melissa who very accurately said that nobody else understands. As you and I and a lot of others know, as a mom it's horrible to be told your child has a condition that you can't "fix" right away. But being moms, we suck up the pain of that and keep looking for better answers.

And you're correct - a lot of men, because they are focusing on their jobs or other things, or perhaps because they're just made differently, don't realize how awfully different things could have turned out.

But we know better.

[gerbo]

....I know a man who does know :( :(

[MATJESNIC]

Mary Lou,

Thank you for coming on here to confirm there is a great life after scoliosis surgery. That is what keeps me going. I am thrilled that Jamie is doing all those physical things. When she drives, does she have any issues with twisting and turning around. I always think about Nicole when I do that and wonder how it will be for her.

Nicole's friend just moved away and all the kids were shocked when she told them her school was closed for the first day of hunting season. That is so foreign to us. And it's not like we live in a city or anything. We're out in Bucks county. She is in Wilkes Barre. Anyway, does your school close, too?

Sherie,

I have been keeping track of Sheen's days in the back of my mind. Mary Lou and others assured me that 3 weeks would be the turning point and they were so right. I am hoping that by this Thursday Sheena is out of most of her pain.

[mariaf]

....I know a man who does know :( :(

You know Gerbo, you were probably the reason I said "a lot of men" rather than men in general. I was thinking of dads like you who are the exception to the rule :)

[stephanieC]

Originally posted by Gerbo

http://www.mdconsult.com/das/articl...89807000788.pdf

nice little overview; images show that staples actually run from one to the next vertebra, which explains the possible immediate benefit from the procedure in some people.

Gerbo,
Interesting. The staples do go from one vertebra to the next, with one prong of the staple going directly into adjacent vertebra. You have clarified something for me. I did read that article before but it got lost in my mind amongst all the other articles and presentations etc. Apparently a bit of overload.
I do not see why this would offer immediate reduction of curvature but, I do wonder how this type of placement doesn't inhibit motion of the spine?? More questions for me to ask Dr Asghar when I see him.

As Maria said, thank goodness Dr Asghar is a patient man!! Maria, maybe I should bring a nice bottle of chianti or something for the poor Doc. He may need it after all my questions!! lol

Stephanie

[stephanieC]

How do I put a quote in a blue background?????
Stephanie

[gerbo]

How do I put a quote in a blue background?????
Stephanie

like this!! ;)

[Celia]

....I know a man who does know :( :(


Gerbo,

You know you're the most popular man on this forum! Admit it! :rolleyes:

[gerbo]

ok, highlight by going over it keeping left mousebutton down and then press the speech-bubble button, which is on the right.

[MATJESNIC]

I don't know if you remember this, but it was originally my husband who found this site. As soon as I got involved, I kicked him off. But he was also the one who researched and found the Spinecor website.

[mariaf]

Yes, I do remember Melissa!

I guess we hear from moms all the time - but when a dad posts, I guess it makes a lasting impression on me :)

[Snoopy]

Stephanie,
Jamie never really complains of pain. She does get stiff if she lays around for a long period of time, but as soon as she gets up and moves around, she is fine.

Sherie,
Hang in there. I'll tell you like I told Melissa, spinal fusion goes in stages. Stage I is the worry and stress before surgery; Stage II is the long wait in the hospital until your child is out of surgery; Stage III is the initial recovery from surgery; Stage IV is some times the hardest-this is when the kids feel great, but are still very restricted-mom and dad have to constantly say no you can't do that-we worry about them over doing it; Stage V--is one year post-op and we are told everything is great and they can get on with their lives.

Melissa,
Driving has never been a problem for Jamie. I've taught her to use her mirrors and rely on them since it is hard to turn around as far as she would need to and still stay in her seatbelt. I'm glad she had her surgery before getting her permit because that way she didn't have to re-learn how to drive.

Yes, my girls have off school for the first day of deer hunting. It's been like that for a long time. When I was in school, so many kids took off school we really didn't have class, so they started giving us the day off. In fact, my girls have the Wednesay before Thanksgiving off and don't return until the Tuesday after Thanksgiving. You know where I live. Maybe it depends on the county we live in? I know there are alot of hunters in my area. Oh, well, we enjoy the long Thanksgiving break.

Mary Lou

[jillw]

Hi , I too had been offline for a couple days (we were out of town for my great grandmother-in-law's funeral..104 1/2 years old; hope my kids get his longevity genes!)

Anyway, I am really really happy to read these posts because we all do share so much - we share the BIG things, despite differences on opinions on some of the details. Thank you Milesmum for bringing this up - it made me tear up and nearly every post after had me nodding my head in agreement because you are all articulating thoughts and fears like nobody who is not going through this could understand.

Melissa, my heart goes out to Nicole - I hope you are very pleased with her abilities to dance a year from now. You may have picked up in other posts that I pay close attention to it also since , although young, dancing seems to be my daughter's physical activity of choice. Another story I meant to tell you, which isn't directly relevent, but helps a little. My friend's friend had fusion surgery and went on to dance professionally on broadway. it wasn't ballet, but it's something! In fact, getting her phone number from her friend and talking to her is on my to do list (not on the top because now I'm trying to figure out what treatment is most likely to help us avoid it - a stage or two behind)...but I should give her a call sooner to find out what she feels her flexibility is. I forget, I believe Nicole does ballet, right? Is she involved in tap/jazz or anything else also? Which is her favorite, if she has one?

[jillw]

couldn't remember what else I wanted to say so went back to re-read.

Mary Lou, I'm so glad that you can now rejoice in your daughter's ability to do the things she loves, but my heart also goes out to her for what she had to go through and what she had to miss to get there. Scoliosis su**s, doesn't it?

Maria, I believe you are right. I have felt that most of the people reading and posting on these boards are more likely the people who don't blindly accept their doctors' advice for treating scoliosis and all have a bit of the fighter in them...

which is why it has TOTALLY driven me nuts when people do say things like "it could be worse" and "at least she isn't dying" (Milesmum, I guess I"m not the only one who got those comments from well meaning people, but it really made me feel so isolated instead because they just didn't understand. In hindsight, I'm guessing a lot of you probably got comments like that). Also, when I tried to convey the seriousness of the battle ahead and potential bad outcomes, people would say "you can't think about it" and I would feel guilty like I was a pessimist. Finally, I realized, for my personality, I HAVE to think of it!!! How else can I make informed decisions if I don't know as many possible upsides and downsides as possible. What else would drive me to do the research to see what possibly might be in our power to avoid progression? How could I live with myself if we have a bad outcome because I followed people's advice to "not to think about it" so I don't "drive myself crazy" and therefore would never found out about spinecor or VBS or some of the other less mainstream options. So there is my little (big!) rant...I will no longer let any doctor, friend, relative, anyone make me feel defensive about the fact I am obsessed with learning as much as I can and projecting all possible outcomes. I know these people mean well and are trying to comfort so its not like I'm annoyed, but I did feel kind of let down at the time.

Did I tell anyone I really love my mom? She (and my dad) are the only people who seem to be feeling my pain and worrying as much as my husband and I are. When I called her to tell her the good results of katie's 1 month checkup, she cried in relief/happiness (which ofr course made me cry)...it showed me that she is holding her breath just as much as we are...But it also so nice to see all you here also understanding the feelings and sharing such useful information. You all really got me through the very long, very dark nights that followed those first weeks after katie was diagnosed. I'm really blabbering here, aren't I? :o Sorry!

[MATJESNIC]

Jill,

I am happy your daughter is doing well. Nicole's passion is tap. She was not going to be a professional dancer. Just wants to dance and compete with her friends. I understand all of your thoughts and feelings. Let's just all accept the fact that aside from some of our family members and one or two amazingly understanding friends, nobody knows what we are going through. Let us be thankful for the internet and this site. What would we have done thirty years ago? In the book Deenie, she looks up scoliosis in her encyclopedia. As Nicole always says to me, "Mom, how did you ever live back then!!!!"

Anyway, I have to confess that looking back now that I am on the other side of it, I didn't always say the right thing to friends when they were going through something. I guess I really didn't understand until I was on this side.

Anyway, you are all so wonderful and it is enough for me that you all understand.

[milesmom]

Awwww Jill. You have every right to vent--we all do. I think forums DO become an anonymous outlet of sorts...because we DO bite our tongues to all the people in our everyday life, who just dont get it.
Yes, heard it all myself. I'll share the REST of the story on the "guy in the grocery store"...he worked at the deli, and I was just trying to order some lunchmeat! He asked about the brace ( there were other customers looking on)...I answered briefly. He continued to probe. He then asked if "this was a birth defect"....I answered quietly with "can I please have my turkey." Geez...it was two days after we got home with the brace.
I have had it happen since, and now I just answer any and all questions with "he's fine, thank you." Im almost glad its cold again, as less people start in with the bulky clothes on. Not that Im embarassed a bit...I just cant believe how rude and thoughtless people can be. I have never once thought about asking someone why they are in a wheelchair, or why they have an eye patch or so on...
Then, yes, you have the well meaning family members...which STILL can get dicey. Many people in my husbands fam want answers/ reasons/plans that we just cant give them. Our Grandmother cries at the sight of him in the brace ( a BIG no no with me. Cry...just do it in private...I did.) Friends have been the best so far...positive, upbeat, understanding. My sister is the best too. Be glad your Mom is involved and supportive, though. I would love that. My mom is somewhat of a recluse, has nothing to do with anyone in the family. We've made her aware of Miles' condition over a year and a half ago...she's yet to respond. Oh well, we have our own family, friends, and forum family. Hows that for a vent!!! Hang in there, and enjoy the good times, which are many-hence any circumstance!

[LATigner]

I know this is the Spinecor thread but that a lot of parents read it who know about stapling. My daughter is 17 1/2 and pretty much done growing - are they using it on kids this old or do they have to have a lot of growing left? She has a double curve, about 44, 44. thanks

[milesmom]

Celia,

That's so funny - when I was posting about what kind of person it took to look outside the box for better alternatives I thought of my hubby as well. He's a great dad and all but he just accepted what he was told by our former ortho (to keep David in a hard brace until he was done growing and hope for the best) because he figured she was the doctor. Granted, she had a good reputation and maybe she was the doctor but we were the PARENTS!

When David was first diagnosed in 2000 my oldest was 12. I thought to myself "I've been a mom for 12 years - I thought everything could be cured with a weeks' worth of antibiotics"!

I think it was Melissa who very accurately said that nobody else understands. As you and I and a lot of others know, as a mom it's horrible to be told your child has a condition that you can't "fix" right away. But being moms, we suck up the pain of that and keep looking for better answers.

And you're correct - a lot of men, because they are focusing on their jobs or other things, or perhaps because they're just made differently, don't realize how awfully different things could have turned out.

But we know better.


Oh BOY. Same here. It a subject I dont ever touch on publicly ...but I am right there with you ladies on THAT. ( Celia, is there some odd happenstance that we are married to the same guy???? Stocks, the market, mortage rates, work, work,...sighhhhhhh) I (happily) sit up nights researching. Planning all the strategies, if you will. I cant see Ben ever getting on a forum, he's not an open guy. He is a good dad too, and I know that this affected him greatly...I almost think he submerges himself IN work and his business and his website etc, etc to ease the stress of it. He comments that "he knows that I know what Im doing...he trusts all my decisions"...and thats fine, he can.
When Miles progressed rapidly there for a bit, and they said he'd need VEPTr...it affected me so deeply that it took a serious toll on our marriage. I felt like a disaster, and took every bit of it out on Ben. We did some counciling, and got through it. But...I can relate to you ladies on the level of the hubs just sort of "going with the flow", and not going to that emotional place that we do.

[stephanieC]

UMMM... Gerbo

speech button on the right??? What?? All that happens is I highlight with the left button then hit the right button and it says" cut, delete. paste....." So now what do I do to highlight a quote?? :confused:

Stephanie

[mariaf]

I cant see Ben ever getting on a forum, he's not an open guy. He is a good dad too, and I know that this affected him greatly...I almost think he submerges himself IN work and his business and his website etc, etc to ease the stress of it. He comments that "he knows that I know what Im doing...he trusts all my decisions"...and thats fine, he can.

OK, Adele, you joked earlier that perhaps you and Celia were married to the same guy. Well, I have news for both of you - after reading this quote, WE are definitely married to the same guy. Gee, you are sharing Ben with lots of other women - LOL!!

[rtremb]

My husband has been really great about Esme's scoliosis - just like he was with her PANDAS. He was the one who actually found the PANDAS and figured out this is what she had then he convinced the doctors. On scoliosis he has read everything he can find on the internet and at the library. He has dug deep into the subject reading lots and lots of medical articles. He has called experts in Canada and the U.S.

When we first found out last August that the doctor wanted to do spinal fusion on Esme, my husband didn't actually work, but briefly each day, for about a month. He is self employed so has this choice. He has spent countless weekends with the laptop on his knee googling around looking for answers. He has spent a lot of time looking for a cause for the scoliosis - thinking if he can find a cause he can find a cure.

My husband attends all Esme's doctor's appointments.

My husband does deal with stress differently to the way I do - always has. He appears calm cool and collected about the children's illnesses - dealing with the facts and not showing emotion. I, on the other hand, am more likely to be high strung before appointments, quick to temper and emotional. When I explain that I am feeling stressed about this whole issue and nothing can ever make it right he tells me to accept it, to do what I can to make it better, but to accept it. My daughter tells me that if I feel stressed I shouldn't - she tells me she is the one with the scoliosis and if I think I am stressed what do I think she is feeling.

Overall though as a family I think we are coping fairly well, given the circumstances - we are all looking forward to a cozy Christmas by the fire and spending some time with Mike's brothers and sisters (my whole family lives in England). Mike's brother has early onset Alzheimer's which is progressing rapidly so this may be his last Christmas when he remembers any of us!

Ruth

[mariaf]

I know this is the Spinecor thread but that a lot of parents read it who know about stapling. My daughter is 17 1/2 and pretty much done growing - are they using it on kids this old or do they have to have a lot of growing left? She has a double curve, about 44, 44. thanks

Unfortunately, they need to have considerable growth left to do.

There was some talk a few pages back on this thread about some promising new techniques being developed to treat larger curves - not sure how far down the road they are though.

Good luck.

[jillw]

Melissa, I'm glad her passion is tap because it would seem to me that would be the easiest to do if flexibility is limited somewhat (other than irish step dancing maybe?) - and it would seem that if this one woman could dance professionally, than hopefully children who have fusion surgery could easily do it for fun and yet still be competitive if they want (again, I guess may not be the case with ballet, but tap is a little more upright). i'll have to get more details on this woman such as how long and where her fusion was.... i'll post it when I do. Funny about what you say about realizing you may have said the wrong thing to others in the past...I have been thinking that this whole situation has made me more aware and hopefully I will be a better friend to others who go through difficult situations in their lives. (because I'm sure I have fallen short in my response to others with troubles in the past!). And of course it is difficult to give the right response because different people want different responses.

Milesmom, that is tough - it almost seems like because he is young they feel they can talk about it in front of him - that would bring out the protective mama bear response in me.

Ruth, that is wonderful that your husband has been so involved (and we all benefit indirectly when you post some of the ideas he has uncovered!)

[MATJESNIC]

Milesmom,

I agree that it is so rude for strangers to ask you personal questions. Most of you know that I am a special education teacher part time. Right now I am only working with two children. One little boy has downs syndrome and it's a small world because his Mom and I were sorority sisters in college!!! Anyway, sweetest little almost-3 year old. Smart and adorable. Mom told me that strangers actually come up to her in the supermarket and say things like, "Oh, you poor thing." or "I give you so much credit. You must be such a strong person." or "Did you know you were having a child like that?" or the best one being someone she knows quickly walking down another aisle to avoid them completely. She just wants people to see her son as a little boy not as a disability.

Ruth, your family lives in England. Is that where you are from?

LaTigner, is your daughter finished wearing her Spinecor?


I just realized that I have been posting with some of you for two years now!!!! I can't believe it. Where has the time gone? If I didn't look back and see my original post in 2005 I wouldn't believe it.

[gerbo]

UMMM... Gerbo

speech button on the right??? What?? All that happens is I highlight with the left button then hit the right button and it says" cut, delete. paste....." So now what do I do to highlight a quote??

what i meaned with the right button, was not the right one on the mouse.

Look at the symbols just above this box (I mean the box you are in when you are replying), starting with a B, I and U, on the right of this row is what I call a button which looks like a speechbubble, press that and the highlighted text will be in a lightblue box

is that clearer?

[gerbo]

On scoliosis he has read everything he can find on the internet and at the library. He has dug deep into the subject reading lots and lots of medical articles. He has called experts in Canada and the U.S.

. He has spent countless weekends with the laptop on his knee googling around looking for answers. He has spent a lot of time looking for a cause for the scoliosis - thinking if he can find a cause he can find a cure.



sounds like me :rolleyes: :rolleyes:


My daughter tells me that if I feel stressed I shouldn't - she tells me she is the one with the scoliosis and if I think I am stressed what do I think she is feeling.

and that sounds like my daughter.

also, she has made it very clear to us that the greatest source of her stress is our stress, cannot bear to see us upset. There is a clear message in that; however well intentioned and understandable our stress and concern; we can make it worse for our children!

[stephanieC]

what i meaned with the right button, was not the right one on the mouse.

Look at the symbols just above this box (I mean the box you are in when you are replying), starting with a B, I and U, on the right of this row is what I call a button which looks like a speechbubble, press that and the highlighted text will be in a lightblue box

is that clearer?

did it work??

Stephanie

[stephanieC]

Gerbo,

Thank you. I have microsoft vista and had to give the computer "permission" to highlight or "run program". I am not a big fan of "Vista"!!

Thank you much!!

Stephanie

[WNCmom]

While I seem to be spearheading the research at the moment, my husband has been right behind me--and sometimes ahead of me--all the time, going to every appointment, researching, and endlessly discussing scoliosis with me. Because he tends to be the optomist and I'm the pessimist, he has been really grounding for me, reminding me that we need to take one step at a time. This is especially important when I feel frantic, worrying we're not doing the right thing, or enough things.... we are self-employed with an office at home, which has its downsides, but we are fortunate to have quite a lot of flexibility in our lives, which is why we do what we do.

I realize it would be quite a different picture without him.

Mary Ellen

[WNCmom]

Ruth, remind me--what is PANDAS?

Both my grandmothers had alzheimers, along with my mother-in-law. I remember clearly the last time my father's mother knew who I was, and I treasure it. I'm sure this will be a Christmas you'll remember for a long time.

Mary Ellen

[mariaf]

I agree that it is so rude for strangers to ask you personal questions. Most of you know that I am a special education teacher part time. Right now I am only working with two children. One little boy has downs syndrome and it's a small world because his Mom and I were sorority sisters in college!!! Anyway, sweetest little almost-3 year old. Smart and adorable. Mom told me that strangers actually come up to her in the supermarket and say things like, "Oh, you poor thing." or "I give you so much credit. You must be such a strong person." or "Did you know you were having a child like that?" or the best one being someone she knows quickly walking down another aisle to avoid them completely. She just wants people to see her son as a little boy not as a disability.

Melissa,

I think I may have told you but one of my best friends has a son, a few months older than David, with Downs Syndrome and she has told me she's heard equally ignorant remarks. I find it hard to believe that people could be that insensitive and callous. Do they EVER think how their remarks might sound to the person hearing them?? And you are exactly correct - my friend wants people to see her son as a young boy (he's SUCH a sweetheart too), not as a disability.

Even David, at 9 years old, figured out long ago how to treat Anthony and I'm proud to say that David is great with him - I don't know if he got his compassion from all he's been through or from seeing kids at Shriners with all sorts of disabilities - but he is so patient and easy-going with Anthony (he pretty much has a "roll with the punches" kind of personality anyway) - there are some things that Anthony and David can't play together, but David will just try something else with him. He doesn't treat Anthony "differently" even though he realizes, obviously, that they have to do things a little differently than when he's with his other friends. But he tries to be very nonchalant about it.

Can't adults figure this out????

Sorry, I'm rambling..................

[rtremb]

Melissa: Yes I am from England. I moved to Canada when I was 18.

Mary Ellen: PANDAS is Paediatric AutoImmune Neuropsychiatric Disorder Associated with Strep. Esme got this from a strep infection - most likely related to the chicken pox. The first signs there was something wrong were - she came home from school one day and wouldn't let me throw away her left-over lunch - she got worse from there and developed full blown Obsessive Compulsive Disorder. One day she was okay the next day she wasn't - it was incredibly frightening. After a barrage of tests the doctors still couldn't figure out what was wrong. My husband found PANDAS on the internet and realized she fit the pattern. PANDAS was a newly identified illness which is now widely recognized by the medical community. Esme is now well again from this although it took about a year for her to recover. There is no treatment per se. It goes away in time. She took prophylatic antibiotics (amoxycillin) for about a year and a half to prevent a new strep infection. We have to vigilant now if she has a sore throat and be sure to have a throat swab done in case it is strep so she can be treated immediately to reduce the impact of the PANDAS.

Ruth

[Celia]

... I have felt that most of the people reading and posting on these boards are more likely the people who don't blindly accept their doctors' advice for treating scoliosis and all have a bit of the fighter in them...



It was Remembrance Day in Canada on November 11 and I guess all around the world. I read the poem "In Flander's Fields" that day as I do every year. The last verse of the poem is so moving for me not only because of the men who died in battle but also the foe can be anything....scoliosis etc. It was written by a doctor. I know it's kind of weird to associate this poem with a medical condition but I do feel as though many of us are in the battlefields.

Take up our quarrel with the foe:
To you from failing hands we throw
The torch; be yours to hold it high.
If ye break faith with us who die
We shall not sleep....

[WNCmom]

Wow, Ruth, that's amazing. I've never heard of PANDAS. Thanks for the info--so many things out there we don't know about, and how great your husband got to the bottom of it!

Mary Ellen

[rtremb]

Mary Ellen:

Yes it was great that he figured it out. Esme was having so many medical tests too (MRI's, CT scans, nuclear scans, heart tests, countless blood tests, etc.) and his finding what was wrong put an end to all that. The poor child was put through so much! I think we learned then to question everything that is done to either of our children - to make sure it is absolutely necessary - before it is done.

Ruth

[MATJESNIC]

Very moving, Celia. We all have one common enemy that unites us.

[LATigner]

Thanks for the info on stapling. My daughter is done with Spinecor, not because she finished the time but because she is 17 and tired of dealing with scoliosis treatments. She occasionally wears her brace at night but has quit the physical therapy. Her back has been stable at about 44/44 for a year or so, we have another x-ray in Feb. and we'll see if its gone up. She has no pain so far and with the balanced curves she should be ok if they don't increase.

We decided the constant fighting about wearing the brace and doing the therapy was too much stress in addition to the normal teenage stuff. At some point you have to count the emotional cost and decide if its worth it. She didn't get the Spinecor until she was 15 so I don't know how much correction we would have gotten. Initially it took the curves down 10 degrees, so it would have been great to have that correction permanently. I dearly wish we had found Spinecor when she was first diagnosed at age 12, I think it would have been very successful. Good luck to all of you with younger children.

[emarismom]

Hi all, I haven't written in awhile, but I have been following along with the thread. Tomorrow is Emily's sixth month x-ray. Needless to say I'm a BASKETCASE!! To me she looks alot better! When I make her bend over and I check her spine, the rib hump looks alot smaller (Dr. Michelle-here). Even my husband agrees it looks better. Of course getting the x-ray is the only way to prove this. Unfortunately, I have been wrong in the past, so I do realize I can't trust what I think I see. Just wish us luck and I will hopefully post a new and improved cobb angle tomorrow.

[WNCmom]

Good luck! We'll be with you in spirit.

Mary Ellen

[rtremb]

Hoping for the best for Emily for a good curve reduction.

Ruth

[jillw]

Good luck to Emily today! We haven't had our first 6 month appt. yet, but I can only imagine how I'll feel when it approaches. Let us know how it goes and I'll be thinking of Emily today.

Jill

[emarismom]

I wish that I could post happy news, but I can't. Emilys in brace xray today was 23 degrees. The last time we went it was 14 degrees. He doctor says that Emily has been pulling the base of the brace up to high and has probably not been wearing it right for the last three months. I don't know how much real progression has occured as her curve has been in the 20-25 degree range for over three years. So basically I'm not sure if I am at the same place I started at, or if she is worse because the xray was taken in the brace.

We will go back in three months for another xray.

[mariaf]

Hi Emily's Mom,

I'm so sorry to hear that you did not get the news you were hoping for. We've all experienced that feeling at one time or another and it stinks. Hopefully, things will go better next time.

[cherylplinder]

Rachel is now 40-37 in brace. Dr. Rivard recommended that we find a surgeon. I`ll keep you posted.

[jillw]

Oh Cheryl and Emily's mom...I wish the news was better.

I'm glad you will be taking Emily back in a shorter time frame for the next visit so you can keep a close eye on it. Hopefully it will go down again next visit. Did they recommend getting an out of brace xray? Hopefully out of brace is close to in brace and she still has relatively mild curves.

Cheryl, She had been doing so well-even during periods of fast growth and then this jump. I really hate scoli. Did she have another growth spurt this time? I have a pit in my stomach for you - I've already said and will continue to say prayers for you guys.

[rtremb]

Cheryl:

OMG - so very, very sorry to hear your news. My husband and I and Esme were absolutely devastated when Esme's doctor in Ottawa told us he wanted to do surgery. As you probably know we have refused his offer.

Did Dr. Rivard say anything else about why Rachael needs surgery now? Is it because of fast progression and her age? My son's curves have hovered around the same as your daughters for years but his curves did reduce as he grew taller. I was under the impression that surgery was only absolutely necessary when curves are much larger than Rachael's.

Will keep praying for you all.

Ruth

[MATJESNIC]

Cheryl,

If anyone can say they know exactly how you feel, it would be me. Get a few opinions before you start to panic. You don't know what her curves are without the Spinecor. You just know that Spinecor is no longer working for her. That doesn't mean there are no other options, right? Nicole's curve was in the 50's, so there was no other option. If she ends up needing surgery, we will all get you through this. It isn't what we want for our girls, but everything will really be okay. My thoughts and prayers are with you, as always.

[rtremb]

Emily's Mum:

Sorry your news wasn't better.

I am wondering, if the brace is too high, do the bolero elastics not work properly - is that what went wrong? Too bad you didn't know the base was too high. Hopefully it will work better if the base is in the right position.

Which doctor do you see for the Spinecor? I'd be wanting to go back sooner than the three months, if you can, just to make sure the brace is on right.

Ruth

[cherylplinder]

Melissa,
Remind me of my other options. I asked Dr. Rivard about his Orthobiom surgery. They reduced an 80 degree on a young girl in Europe to 20 degrees with the fusionless Orthobiom surgery. He said it was not available in the US. I will check into that more.
She may be a candidate for stapling, but we will have to see. Anyway, hugs to all!

Cheryl and Rachel

[MATJESNIC]

Cheryl,

I never heard of that. He didn't tell me about it. I was talking about maybe using the chenau brace. If her curves are in the 40's, you are not talking about surgery. You need to find out what her curves are out of brace. Does she have a lot of growth left? How old is she now? How is she doing emotionally with all of this?

[mariaf]

She may be a candidate for stapling, but we will have to see.

Hi Cheryl,

I"m so sorry you did not get the news you wanted. That stinks. I just wanted to add - with regard to the stapling - that depending on what Rachel's out of brace x-ray is (I assume one wasn't taken and that the 40/37 is in brace?) she could be a stapling candidate. Of course, I'm not doctor, but judging by what others were told in the past, I'd say that at 10 years old, so long as her curve was not over, say, 45 degrees she might have a good shot at qualifying.

Best of luck to you whatever you decide.

[emarismom]

Ruth,

I'm seeing Dr. Savedoff in Miami. Originally Dr. Oulette from Atlanta braced her and Dr. Savedoof has been following her as he opened his office just a few miles from my house. I took her in three months ago and he readjusted the brace, but I did not have an xray done. I have been very careful when I have washed the brace to put it back together exactly as he adjusted it. The part that seems to have caused the trouble is where the shoelace is in the back. It wasn't tight enough. But I haven't even untied that part at all. I have washed it by hand. I have been meticulous to put the thigh bands and the crotch straps exactly where the line was drawn.

I do know that Emily does pull on it, but I didn't think she could make it go up to high, as the thigh bands and crotch straps should have been holding it in place. She isn't able to untie the shoelace part, and there is noone who would have loosened it for her. I really just can't believe it, and I've lost time.

I've decided I will email a picture of the brace to the doc every week after I wash it and we put it back on. Then once a month, I'm going to stop by to have him look at it to make sure it is fine.

We are also going back to the orthopedic to see what he thinks. Of course, he doesn't think she needs a brace at all yet, so I don't think he will say much.

The hardest part is that visually she DOES look better. She has no tilt in her shoulders now. Her hips are almost even. They are definitely more even than they have been since her original diagnosis in 9/04. Her rib hump looks smaller and her overall posture is much improved. But as soon as I saw the xray, I knew the curve had increased (even before he read it). Can someone tell me how she can appear so much better, yet really be worse?

[Celia]

Cheryl,

I read your news last night and I couldn't bring myself to type anything because I know words can't comfort the anxiety and dread you feel for your daughter. I'm still in shock that the curves could have progressed so quickly. You have our collective shoulder to lean on anytime you need it.

[Celia]

Michelle? (Emily's Mom)

I'm sorry the news wasn't better for you. The doctor said the brace wasn't being worn properly? After he made adjutments to the brace did you find out if the curve is back down to levels of three months ago?

[gerbo]

Cheryl, I am sad and upset for you and your family and have my own fears and anxieties multiplied. I know you have a great religious faith and get lots of strength out of that; I sincerly hope this will continue to support and sustain you. (((sometimes I just hate words on paper (screen) because they seem so empty and meaningless in situations like this!! )))

In all honesty I would have to think very long and hard if I were in a similar situation next month what to do next. I have always said to myself and Lisanna that "the only other option" if it came to it, (besides the "new kid on the block; stapling" and surgery) would have to be a hardbrace, like the Cheneau, but only if it would give lots of initial correction. Considering that option (and i now more talking about my self) would have so many implications (practical on where to get a "good" one, and psychologically how Lisanna would cope with it) and ofcourse the lack of garantee it would work, that I don't know what in the end I would do.

Cheryl; we all care for you

gerbo

[AILEA]

Cheryl, I’m so sorry you got those results..

I know what you feel; I was nearly in the same situation time ago, when we realized spinecor was not working for my daughter. Should I suggest you to have one’s eye on Cheneau braces? I know you didn’t get good results with the boston, but our orthos usually put boston but when the curves are too high (as in my dd´s case) he works with the Cheneau brace.

I think Spinecor is a very good option when the child is still young, with flexible and medium-sized curves, but when they are older, and their curves are becoming less flexible, perhaps there are other better ways to try to keep that curves. There have been several cases in this “spinecor thread”: Pola, Melissa, Latginer, now Cheryl with those “not good” results…and it hasn’t been a crowded thread

Of course, life is quite different wearing the spinecor or a hard brace, I know, my daughter has wore both, but I’d like to point this because sometimes I regret I put my dd in the spinecor and I wish someone had told me be more careful due to her age.

Best wishes

[gerbo]

ailea; how is your daughter doing?


I think Spinecor is a very good option when the child is still young, with flexible and medium-sized curve

but in all fairness; cheryl's daughter was relatively young, and had a great initial reduction (so enough flexibility), there was nothing to indicate it wasn't going to work???(up till last 6/12)


I wish someone had told me be more careful due to her age

but who and how?? We are all so dependent on the knowledge and facts and opinions and facilities available, which is so variable and different dependent on who you talk to??

[RugbyLaura]

Michelle & Cheryl. Horrible news. As Gerbo said, it's so hard to find the words to express our support & compassion. We are all with you on this journey & you are very much in our thoughts & prayers.

Cheryl, hugs to you XXX. I have nothing practical to say as you're further on up the road than we are (although I'm sure we WILL be following you). I'm sure you'll remain strong and will always do your very best for Rachel. How does Rachel feel about it all?

Michelle. I feel the same as you; that Immy's back looks so much better recently. We have her 6 month review on Monday. I think it's less obvious to us partly because we have become used to it and partly because we are much less anxious (so not building it up in our minds). I really feel for you as you have been so good with the brace & washing routine. I stick Immy's in the washing machine on a 'normal' wash, 40 degrees, 1400 spin & tumble dry (!) & it seems fine. Immy is in shows at the moment so only wears it for 18 hours a day (at best - when there are matinee performances it's more like 14 hours). My husband always says "Expect the worst but hope for the best" so we expect her to need surgery one day. In the mean time I strongly believe that she's got to have an enjoyable life.

Love to all,

Laura

[Celia]

I have always said to myself and Lisanna that "the only other option" if it came to it, (besides the "new kid on the block; stapling" and surgery)


Gerbo,

Even in the darkest of moments you always have a way with words that makes me smile and sometimes laugh out loud. You're the best!

[gerbo]

just to make sure we all agree; i think there is something quite exciting and inherently logical about this stapling approach, and I know Celia thinks on similar lines........

[mariaf]

Gerbo,

I think we all agree as well that some of the newer approaches - be it surgical (i.e., stapling) or non-surgical are more appealing to some folks than their traditional counterparts (hard bracing, growing rods, etc.)

I always say that choosing a treatment for scoliosis comes down to whatever a person sees, for them and their child, as the lesser of the evils.

A lot of us who chose to go with the stapling, while not happy about our kids having surgery, did so in order to avoid the alternatives either in the immediate future (years of bracing) or down the road (growing rods, fusion, etc.).

Unfortunately, for all of our kids, there are no perfect options - I wish there were.

[jillw]

Cheryl, Is she still wearing spinecor or have you taken her out of it so you can get out of brace xrays?

Some of the comments you all make are interesting because Spinecor seems to work best on those with milder, flexible curves which is often with the younger children. However Dr. Rivard had told us that despite the good initial results, the tricky/tough part will be the peak velocity growth spurt (i.e. preadolescent/early adolescent). We're still several years away from that and anything can happen in the meantime, but I wonder if Spinecor (or anything for that matter) is "strong" enough to hold a curve when one is growing inches in a matter of months. I think the ideal candidate would be someone who starts out with curves in the high teens when they are something like 11 or 12 and have already had the initial burst of rapid growth but only have mild curves after it.

I've wondered if maybe wearing a hard brace at night and spinecor by day would be more successful for those going through rapid spine growth? I assume that would not be supported by the spinecor folks, but have been thinking (depending on how things go in the interim; i don't know what kind of progression she will have first) that I may raise that question down the road.

[gerbo]

agree, don't know though whether this is by choice (i.e. I considered the options and decide to do this or that) or by default (i.e. I take the route I do, because this is what my doctor has advised me to do and I do not know about anything else)

sometimes you just wish that somebody would just take you by the hand, sit you down and say; just do this and you'll be OK.

all this thinking and considering and deciding and wavering and doubting and reconsidering can get very exhausting......

at the least the company is good (if not a bit lively and excitable at times)

edit; this is response to Maria's post, Jill's slipped in between

[gerbo]

I've wondered if maybe wearing a hard brace at night and spinecor by day would be more successful for those going through rapid spine growth

been thinking this before as well, might have to revisit it at some stage.....

[mariaf]

I think the ideal candidate would be someone who starts out with curves in the high teens when they are something like 11 or 12 and have already had the initial burst of rapid growth but only have mild curves after it.

Hi Jill,

I think that if a child got PAST their adolescent growth spurt and ended up with a curve in the high teens, then they should have a very good chance of avoiding fusion no matter what the treatment (hard brace, spinecor, etc.). Reason being that if there was not much growing left to do, the curve most likely would not increase much anyway.

Of course I don't see ANYTHING at all wrong with your idea of asking about a hard brace at night in addition to Spnecor during the day. There are even some nighttime bending braces made specifically to be worn only during those hours. Of course, this could be contraindicated for Spinecor which is why I said it's a good idea to ask your doctor.

Just my thoughts :)

[mariaf]

agree, don't know though whether this is by choice (i.e. I considered the options and decide to do this or that) or by default (i.e. I take the route I do, because this is what my doctor has advised me to do and I do not know about anything else)

Good point. Being as determined and stubborn as I am, I sometimes forget that there are folks who might actually just do the latter.

That's why forums like this are great - they get information out there regarding all the options to be considered.

[stephanieC]

Cheryl and Michelle,

I am so sorry for your horrible news. Know that so many people here think about your kids as they are thinking about all the children we talk about here on the forum, including our very own. Each heartbreak is felt throughout the forum! You and your children are included in many prayers.


originally posted by Gerbo,

sometimes you just wish that somebody would just take you by the hand, sit you down and say; just do this and you'll be OK.

all this thinking and considering and deciding and wavering and doubting and reconsidering can get very exhausting......

Yes Gerbo, I often wish somebody would sit me down and say just that. Instead we hear...there are no gaurantees with scoliosis but this has shown to be promising.... let's wait and see... we should try this right now and hope it will work... have you heard of... do this... do that... etc. It is exhausting, but we have no choice but to walk down this road all the way with our children, and we all do just that.

I am thankful for the support I get from so many moms and dads walking the same road with their children,
Stephanie

[Celia]

just to make sure we all agree; i think there is something quite exciting and inherently logical about this stapling approach, and I know Celia thinks on similar lines........

Absolutely agree! About your comment of new kid on the block, I was thinking of spanking new shoes for some reason. :) Promise me one thing...if and when my Daughter's curve progresses that you'll be there to make me smile through the darkest of times?

[gerbo]

Deirdre will be fine, as long as her spine is kept straight there is no reason for it to progress. Mark my words!

[rtremb]

About wearing a hard brace at night and Spinecor during the day - have any of you come across the theory that when lying down the spine is "out of gravity" therefore the scoliosis won't progress when a person is lying down. Some chiropractors say this and I wonder if this is true or not?

Ruth

[Celia]

Ruth,

That's an interesting theory! I was under the impression and I think it has something to do with night time bending braces that it's imperative the brace be worn during sleep because 98% of growth occurs during sleep and rest. I can also see how the affects of gravity and asymmetric loading can play a role in scoliosis progression during the day and this would depend on degree of curvature.

[gerbo]

personally I have always believed that the likely assymmetry of muscletone, even at rest could still have a detrimental effect, even if laying down. also, if most growth takes place at night (is that true?) then it seems imperative to keep the spine as straight as possible at night

[rtremb]

Celia:

If 98% of growth occurs while sleeping/resting then I guess the gravity theory does not have much credibility!

Unfortunately Esme has heard the chiropractor say that the curve can't progress when she is lying down because she is out of gravity so sometimes we get a bit of an argument from her against wearing it in bed while sleeping!! We are insisting she wear it for the 20 hours as prescribed.

Ruth

[Celia]

I also read the supine x-ray can give doctors a good indication of curves that will progress and I was thinking back to the initial supine x-rays before the spinecor fitting. Here is this abstract. I'll be very interested to read the article now.

Duval-Beaupère G.
Institut National de la Santé et de la Recherche Médicale, Hôpital R.

Poincaré, Garches, France.

A retrospective study was conducted on 262 patients with minor idiopathic scoliosis, having supine angles of less than 30 degrees and rib humps of less than 30 mm at the first examination. The initial radiographic measurement of the Cobb supine angle and rib hump height, recorded during a bending test performed on subjects in a sitting position, was correlated with the rate of scoliosis progression. Scoliosis progression was estimated graphically from an angle diagram established by monitoring untreated patients for 7 months to several years, depending on the rate of progression before treatment. More than 95% of the patients with initial supine angles of more than 17 degrees or rib humps greater than 11 mm suffered from progressive scoliosis. The importance of the size of the supine angle, rib-hump height, scoliotic pattern, and state of maturation for the progression rate are analyzed. Knowledge of these parameters can be used to make individual prognoses for approximately 95% of these subjects.

PMID: 1536009 [PubMed - indexed for MEDLINE]

[Celia]

...if most growth takes place at night (is that true?) then it seems imperative to keep the spine as straight as possible at night

According to the following study,


CHICAGO (Reuters) - The perception that children seem to grow taller overnight is likely true, researchers said on Thursday.

Related Links
• Study abstract: Growing Pains (Journal of Pediatric Orthopaedics)

Scientists at the University of Wisconsin's School of Veterinary Medicine in Madison placed sensors on the leg bones of lambs to monitor bone growth in the animals. Ninety percent of bone growth occurred when the animals were sleeping or otherwise at rest, according to the study published in the Journal of Pediatric Orthopedics. "We observed this noncontinuous pattern of growth, but what was really interesting was that the bones were growing only when the animals were lying down, and almost no growth occurs when the lambs are standing or moving around," study author Norman Wilsman said. He reasoned that growth plates consisting of soft cartilage at the ends of bones become compressed when walking or standing, preventing growth. When lying down, the pressure on the growth plates is off and the bones elongate.
Co-author Kenneth Noonan said: "This is a study that points out that growth is not a continuum. There are growth spurts, which may occur within the daily life of lambs and possibly humans too."

Previous research has shown children grow in spurts that may last just a few days. Children sometimes complain of intense growing pains at night that emanate from the ends of their lower extremities where the growth plates are, Wilsman said. There is no treatment for growing pains.

[emarismom]

Cheryl,

I am so sorry for your news. Through all of my consideration of whether or not to put Emily in a Spinecor brace, I looked at the results you were having with so much promise. My thoughts and prayers are with you and your daughter.

Celia, I didn't even think about getting another xray at that moment. I wasn't thinking very clearly at all.

I did contact Dr. Oulette, he braced Emily with Dr. Savedoff here in Miami. Since my family and I will be driving through Georgia over the holidays, I am going to stop in to see him to get his opinion.

Laura, good luck with your xray on Monday. I will keep you in my prayers.

[qiling]

Cheryl,
Sorry to hear your result. I grew a lot in this forum, hoping you have a right path for Rahel.

Emily's mom,
When we were in Montreal, Dr.Coillard also mentioned that Jennifer put up the pelvic base too hight, Jennifer said that the base sometimes goes up when she sits down, I stitched the crotch bend so it would be moved.

Elaine

[txmarinemom]

I also read the supine x-ray can give doctors a good indication of curves that will progress

Hmmm.

It's long been documented structural curves do not correct within range on bending; that's why they refer to them as structural vs. *compensatory*. And one doesn't develop a compensatory curvature (almost exclusively) without a structural curve to offset.

Are you saying all structural curves are expected to progress? We pretty much ALL have at least one structural curve, Celia.

Regards,
Pam

[txmarinemom]

Ruth, supine xrays are the primary method to identify structural curves.

It's been well known for the last 20-30 years a structural curve is more likely to progress - and exaccerbate any compensatories.

And that has NOTHING to do with progression - or predicted progression - other than non-structural curves don't normally progress unless the structural carries them for the ride.

As I stated, most with scoli have at LEAST one structural curve. Just identifying a curvature as structural is minute in the bigger picture (when anticipating progression).

[emarismom]

Elaine,
I don't quite understand what you stitched up? Please explain it a little more.
Also , I see that there has been alot of variation in the cobb angles for all of your daughters recent xrays, what have the doctors said about her initial correction in brace being better than her follow ups.

Celia,
Actually after thinking about it, the doctor had already readjusted the brace before we took the xray. So that would mean the curve is at 23 degrees WITH correction. Which would indicate that there has been considerable progression. I have emailed the doc for clarification on this. Also I have made an appt with her ortho for next Thurs. and made the appt in Georgia for early January. If she has in fact progressed this much, then we may also be heading to Canada by Spring or early summer.

One thing I didn't mention is that Emily has not grown taller in the last 6 months. Is it even possible to have this type of progression with no growth?

[jillw]

Regarding growth; I don't have the articles to cite, but I had read in more than one article that the majority of growth hormone is released at night so it would make sense that most of the growth occurs at night?

Emily's Mom, Even though her Xray was after the adjustment, if the brace was being worn improperly before and is now fixed, it could take a month for the full "correction" to kick in. My daughter had a correction when first fitted, but then a month later had even more correction as the brace did its work. I am hoping that when the pelvic base is low enough that the brace will work for Emily and her curves will reduce again!

[emarismom]

Jill,

From your mouth to God's ears!

[WNCmom]

I've been away for a few days and just read the disheartening news. I know that no words I write here can make it better--I imagine myself in your place one of these days, Cheryl--but please know my heart is with yours. My son's T curve is higher than Rachael's, and the ortho we've been seeing hasn't absolutely suggested surgery yet (He may be thinking that, but he hasn't said it). So I think it's really worth it to see more than one.

Emily's mom: when you see Dr. Ouellette, ask him about the new shorts that are available to replace the pelvic band on the Spinecor brace. My son has them, but I haven't had a chance to post a photo. They may work as an option to keep the straps at the proper tension and placement.

I'll try to post a photo soon.

Mary Ellen

[rtremb]

Have your children had supine x-rays (on the back, face up) taken? My children always have their x-rays taken standing up. The only time Esme ever had an x-ray lying down was when she was having an in-brace x-ray in the Charleston night brace.

Ruth

[emarismom]

I can't believe it but I emailed Dr. Rivard this morning explaining Emily's situation, and he has already responded and asked me to email him photos so that he can advise me of what it is best for me to do now. I am so impressed
with him already, and I have never even met him. It is truly incredible that he responded so quickly, on the weekend, to someone who isn't even his patient. I see why he gets so much praise around here!!

[qiling]

emarismom,

I stitched the crotch band at the adjustment box where the band goes in and out, so it can not change the length of the crotch band.

We had three different doctors for the numbers. we started with a surgeon in Children Hospital in Oakland CA which he prescribed a boston brace, due to the rash condition, I found out Spinecor with Dr.Deutchmen, he traveled to SanFransico at that time, as you can see the lumbar from 20 to 28 in one month,than we went for Dr.Rivard i am hoping it goes down on next xray.
Elaine

[emarismom]

Dr. Rivard already responded again. He says that "the brace is very well fitted if the curve is a thoracic type 1". I believe it is a type 1, as it is a thoracic curve with an apex of T9. She does also have a compensory cervical curve which was at 12 degrees before, and is now at 14 degrees.

Elaine, thank you for the idea for the crotch bands. Right now since it seems to be on perfectly, I'm not touching it. I think the whole bottom portion will be washed by hand from now on. I don't ever want to take anything apart again!! Good luck at the next xray. When will it be?

[Celia]

Reading your posts that Dr. Rivard responded to you made me cry, I'm obviously an emotional wreck at this point.

[christine2]

emarismom

I just throw the whole brace in laundry bags and in the washer.I don't take anything apart. I wash once a week. On delicate, cold, no fabric softener. I even put it in the dryer on low heat. We are going on almost 1 1/2 years with the origenal parts. (per Dr. Colliards instruction)

[WNCmom]

For those who are interested, here are photos of the new SpineCor brace shorts that replace the pelvic band.

Mary Ellen

[RugbyLaura]

Good news at Immy's 6 month review. New out of brace xray 27 or 25 degrees (consultant v orthotist measurement). All looking good. Ribs look more 'normal'. Slight lumber compensatory curve (never measured) has disappeared. Rib hump measurements down to 6 & 0.

We're over the moon! Although accept that this does not mean that she won't progress to surgery at some point in the future.

Merry Christmas!!!

Laura

[gerbo]

fantastic Laura; this thread needs some good news!

gerbo

[rtremb]

Great news Laura. I agree with Gerbo - I was feeling a little discouraged but Laura's news helps to restore my hope.

Mary Ellen: The new Spinecor shorts - is everything attached with velcro? Looks interesting. Is it comfortable? It looks like there is just one strap underneath the groin area - I am wondering if that might be uncomfortable for girls.

Ruth

[cherylplinder]

IMPORTANT NOTICE OF BAD ADVICE!!! PLEASE READ!!!!

I wanted to post, just in case I had passed on to anyone my contraption of tying Rachel's #4 strap to keep it from popping loose, that I think that was the reason her curve went so haywire.
When she grew a good bit in July and August and her shoulders were really uneven, I kept tying it just as tight. There was no where for her curve to go but sideways.

I hope I didn't cause anyone else to err.

When Rachel grew so much in 2006, I would measure her every day. If she started to loose height when 4 was tight, I loosened it just a bit. I also loosened 3 when I loosened 4, to keep things even.
I forgot about it during the past few months.

If the brace had been allowed to function as normal, that 4 strap never would have stayed snapped. You can only force a curve so far for correction without adverse effect.

I should have taken her in October when I saw her growth. That was my other error.

If you have a good bit of growth, you should go back sooner.

Maybe this will save someone else from making the same mistakes.

Since no one else ties their brace, it probably wouldn't happen.

But it is a possible senario with the new shorts. That velcro is going to hold like that shoestring. If you force that strap to be too tight, I think there will be an adverse effect.

I am 99.9% sure that I have identified the error. You should have seen how tight I had that strap.

I eventually will let myself move forward, but right now regret is eating my lunch.

[gerbo]

oh Cheryl, do not beat yourself up. we all have our own theories of what might work and what might not work, things we should try and things we could do different. The one message I have got from reading and contributing to this forum is that there just isn't that sure way of preventing the progression of soliosis if it is going to happen. we all do it, searching, looking, considering, re considering, re-re considering till we're blue in the face, discussing the pro's and cons of our chosen methods, fighting to defend our methods, but in the end, que sera, sera, the professionals cannot agree on what should be done or not, brace or not brace, exercise or not, how can you, however hard you try, be expected to "know" what is going to make the difference???

I so feel what you are feeling as so often I have so similar thoughts and feelings; "if only i'd do this, or if only......."

[RugbyLaura]

Cheryl, Please don't be hard on yourself. You have done the very best you can for Rachel. As parents we're always looking for ways to shoulder the blame... IT IS NOT YOUR FAULT THAT RACHEL HAS SCOLIOSIS. YOU ARE A FANTASTIC PARENT.

What do the doctors think of your theory? If you are right and the curve has grown because of your adjustment can the progression be reversed over the next few months??

Thinking of you,

Laura x

[Celia]

Cheryl,

You are an amazing parent and you should not blame yourself however.....I don't think your concerns should be minimized. If we don't listen how can we learn? I for one, see the importance of balance and how the slightest imbalance to posture can have a negative impact on a curve. We've been told compensatory curves don't become structural but experience has shown otherwise. A few months ago I became concerned about a shoulder imbalance in my daughter's case that was causing a curve to develop in the high thoracic area and the *trend* evident on the x-rays was not to my liking and to many I probably appeared to be a babbling idiot (and I probably am :D ) but I learned a valuable lesson and only time will tell if I was right.

[Celia]

Laura,

I'm thrilled to hear that Immy's curve has been reduced!!! Way to go!!!!!

[gerbo]

see the importance of balance and how the slightest imbalance to posture can have a negative impact on a curve.

this is really the confusing and bewildering aspect of the spinecor treatment, about which we have asked and asked again; the spinecor is actually meaned to cause a postural imbalance to keep the curve at bay. The famous "corrective movement", specific for every curve is what the spinecor encourages. In our case; left side shift, shoulders downtilt and clockwise rotation; how imbalanced can you get it?? Letting go of the shouldertilt (as we are doing as we are worried about the sec curve) could result in a reduction of correction and worsening of the primary curve!! AAAAAAGGGHHHH :eek: :eek: :eek:

[Celia]

Corrective movement is key and this goes back to everything I've read on the biomechanics of scoliosis and articles by dr. Stokes. Dr. Coillard even told me the shoulder tilt in Deirdre's case was there to over compensate for the thoracic curve so this would imply that the shoulder tilt was not absolutely necessary for us. If you look at her x-rays one shoulder was being pushed significantly higher than the other and a curve was developing in the high thoracic area. It was a very slight adjustment in the tension of the straps. According to the Spinecor manual, Deirdre should not have a shoulder tilt, this was quite a revelation for me. No one but me can possibly understand the frustration I felt but verbalizing these things helped clarify it in my minds eye.

[rtremb]

Esme's brace pulls on both sides at the waist with one strap on her right and three on the left. It looks like it is pushing in the wrong direction on her right since this is where her waist goes in more already because of the scoliosis. When we asked Dr. Rivard about this and questioned whether it was right or not he said this was the way the brace works and not to think of it like a hard brace type design. Tough to get my head around this but I am trusting him.

Ruth

[Celia]

I absolutely trust and love Dr. Rivard and Dr. Coillard and I feel so blessed that they are my child's doctors!!!! My point is that the tension in straps can go ever so slightly the wrong way and cause a downward spiral in the curves. The strap that was causing the shoulder tilt was a centimeter off. Familiarization with the Spinecor manual in the SRS website is important and knowing your child's curve classification and what the corrective movement should be.

Here is the manual:

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

[rtremb]

Celia:

Do you think this can happen if the straps are too loose? Esme loosens her straps a cm or two sometimes because the brace is hurting her on her side and sometimes across her lower back. This is especially so when she lies down in bed because the number 2 strap across her stomach is a lot tighter when she lies down.

I was thinking it is better for her to wear it than not wear it so if loosing the strap(s) a little helps her to keep it on this would be a good thing.

I have put a 2 inch foam mattress pad on her bed the last two nights and she has got to sleep a lot easier in the brace. Wondering if anyone else has done this?

Ruth

[Celia]

Ruth,

Due to distance and the fact that we're not close to the Montreal office, if you adjust any of the straps for comfort or move the position of the snaps because of a temporary faulty one which should be avoided at all costs, make sure you consult the Spinecor manual to ensure you're not changing the corrective movement of the brace. Ask the doctors what the curve classification for your daughter is. In our case, tightening the #4 strap caused her right shoulder to tilt dramatically and her posture was off. Thinking back to all the clinic appointments and dr. Coillard stressing over the tension of the straps, I finally realize the importance of it all.

[emarismom]

Ruth,

I am so happy for you!! You must be so thrilled.

Emily's cervical curve has also increased this time. Now I'm worried that by putting her in a brace at all, I have caused her curve to increase. Part of me wants to take the brace off altogether and see what her curve really is out of brace. All of the orthopedics advised me to wait until I saw progression to get her braced. I didn't listen, got her braced anyway, and now there is progression. I don't know what to do anymore!

[WNCmom]

QUOTE:The new Spinecor shorts - is everything attached with velcro? Looks interesting. Is it comfortable? It looks like there is just one strap underneath the groin area - I am wondering if that might be uncomfortable for girls.

Ruth--

Sidney finds the shorts very comfortable, although the first day or so he said he had a "wedgie" feeling. He says they're fine now. The strap between the legs is actually a flap that closes with velcro in the front, and makes it easier, for boys, at least, to use the toilet. If the shorts need to come down altogether, it's easy to velcro the straps up and out of the way.

The doc actually marked on the velcro part of the shorts where the strap ends should be stuck on, so that's easy. Sidney says he doesn't readjust the straps at all and when he velcros them to the spot that's marked, they never come undone. They wash and dry just fine with the rest of the brace in a lingerie bag.

Mary Ellen

[Allegra]

Thank you so much or posting a picure of these new shorts! I was dying to see them. However, they look a little uncomortable (due to the whole wedgie thing) and they look long. If I wanted to wear a skirt, I'm almost sure they would come down below it. But thank you for showing the forum. Maybe they'll let me try one on at my next visit! :)

[rtremb]

Celia:

Where do I get a Spinecor Manual?

Ruth

[Celia]

Ruth,

Refer to page 9 and 10 of the following manual. Look closely at the diagram of the vertebrae on page 9. If you still have questions, you could phone the doctors and ask them what the principal corrective movement for your daughter's curve type should be.

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

[rtremb]

Thanks Celia.
Ruth

[jillw]

Celia, when you refer to corrective movement, do you manually move your daughter's spine in a certain way before putting on the brace? that's what the manual looks like but in MOntreal they never told me to do any "movements", I just attach the straps as they told me to. Am I missing something important here?

Also when you talk about the shoulder tilt you mentioned one shoulder being pushed up - Katie has a bit of a shoulder tilt in brace, but its more because her left shoulder (opposite side of her right thoracic curve ) is pulled DOWN by the #4 - that compression does concern me.

So you have had the tension adjusted on Celia's brace since your concerns about her high thoracic/cervical curve? I recall you mentioning recently that it looked to be gone - was it because of an adjustment?

Boy, it really seems to me that we would ideally be going in almost monthly for quick checkups of the fitting (even though they wouldn't do xrays all the time). I wish I lived closer to him...

Cheryl, thank you for passing on your wisdom. How much had she grown in August etc (that you refer to) What would you all consider significant growth for the purposes of potentially needing a brace adjustment sooner than originally scheduled?

Oh Lord, I'm just not smart enough to do this right over time, I'm afraid.

[jillw]

Laura, that's great news about Immy!!!!! Yay! How long was she out of brace before they took those Xrays?

Emily's Mom, Like you I was told to wait for progression and haven't done so either. We'll never know the definitive "What if" answers (i.e. if we had taken an alternate course) which is so maddening about scoliosis. However, I'm inclined to think that if she progressed so quickly in spinecor (even if it wasn't positioned properly which might have contributed to it) that she probably would have progressed anyway??? I'm thinking maybe its evidence that its a good thing you didn't wait? I forget who suggested it, but maybe if you go back even sooner than they suggested it would give you some more information to work with - like maybe a month or two?

I don't take the brace apart to wash it either...I through the whole thing in the machine on delicate/cold cycle and use a dryer on low heat; if I understood Dr. Colliard correctly, the pelvic base is made out of something different than it originally was which is why you can put it in the dryer even though the manual (which was printed earlier) says not to?

[WNCmom]

Allegra--

Just so you know, the doc said some kids fold up the very bottom of the shorts and even fold down the waistband--he said that's okay. So that would make them shorter. I think Sidney folds up the very bottom band, but I unfolded them so the photo would show all of them.

Celia--

I had no idea the SpineCor manual was online. I downloaded it--thanks for posting it.

And Jill, I'm with you. I have real fears that I don't have the brainpower to keep up with all that's going on with scoliosis and now I'm wondering if I haven't been neglecting the brace itself! I just let Sidney put it on the way he learned to and I haven't been checking the tightness of the bands....

Mary Ellen

[RugbyLaura]

Jill,

I think the fact that the xray was out of brace is a bit of a red herring as she was only out for 5 mins! Mr Mills said that an in brace would show very little difference as her spine had not had enough time to go where it wanted to. He did offer an in brace if we wanted but felt it was not necessary. We were so pleased with the out of brace that we were happy to stick with that! Plan is to have three monthly adjustments, six monthly in brace xrays and annual out of brace.

We are delighted with the progress but I am aware that many people have seen similar improvement followed by rapid progression in later years. We must remain realistic, although there is certainly more reason for a little cautious optimism.

Laura x

[Celia]

Celia, when you refer to corrective movement, do you manually move your daughter's spine in a certain way before putting on the brace? that's what the manual looks like but in MOntreal they never told me to do any "movements", I just attach the straps as they told me to. Am I missing something important here?

Also when you talk about the shoulder tilt you mentioned one shoulder being pushed up - Katie has a bit of a shoulder tilt in brace, but its more because her left shoulder (opposite side of her right thoracic curve ) is pulled DOWN by the #4 - that compression does concern me.

So you have had the tension adjusted on Celia's brace since your concerns about her high thoracic/cervical curve? I recall you mentioning recently that it looked to be gone - was it because of an adjustment?

Jill,

I put the brace on exactly the same way you do however I'm careful not to tilt the right shoulder and keep both shoulders level given my daughter's curve classification which according to the spinecor manual is a detorsion of the right shoulder and the thorax which involves the right shoulder sticking out in front of the left but still at the same level and a gentle twisting of the thorax towards the right. It's a very slight adjustment to the tension of the bands. Make sure you know what the brace is intended to do for your daughter's curve classification.

Keep in mind she has remained straight for two years with a 2 degree curve but the muscular area on the right side of the neck is gone and visually her spine looks completely straight to me. She doesn't complain of neck pain any more.

[jillw]

Laura, that's still great news as it still represents an improvement!

Celia, is her Thoracic curve to the right? When you say the detorsion means her "the right shoulder sticking out in front of the left " do you mean that if I was standing in FRONT of her her right shoulder would be protruding forward a bit? Or do you mean if I was standing BEHIND her, that her right shoulder would be pulled back a little more (i.e. be sticking out compared to the left but sticking out behind)?

I've got to call Dr. Rivard and find out how they have classified Katie's curve...its right thoracic with an apex of T8/t9 and a left compensatory thoracic curve although I don't know the location of that...

Thanks

[cherylplinder]

Laura,
I am so happy for you! Sorry I didn't say sooner. I have been in a shell and not really reading, just posting!

[cherylplinder]

I hope it is some comfort to all of you that I can identify something that we did radically different than what we had been doing before that led to such a rapid progression.
I know it's most often not anything one can identify. However, I can clearly see the biomechanics of my mistake now.
I am beginning to come to terms with my serious lapse of judgement that led to this.
For one thing, every time I have had a huge crisis in my life, God has managed to bring so much good from it, that, if I could go back and never go through it, I wouldn't.
He heals us better than we were before we were hurt. The bigger the crisis the more good He brings. It amazes me how He does that.
The scripture is Romans 8:28-30.
"All things work together for good to those that are called according to His purposes."
He has done it too many times in my life for me to doubt HIs ability to do so now.
This was a big hurt with huge consequences. :o He will bring a really big blessing. Ugh!!!!!!!!!!! It's not always the way I choose.
He loves to bless me. LOL, sometimes I wish He wouldn't at first. It's usually only in the aftermath that I am grateful to be blessed with a trial.
I see His hand in everything I have gone through. What others mean for evil, He uses for good. The hardships of this life, He uses for good.
I do feel blessed.
I know He will even use my serious lack of judgement that led to harm for my child as a blessing to us both. Even my mistake can not circumvent His ultimate goodness.

Thank you all for your support and encouragement. I don't know how I would have made it through the past few days without it. You are one of the blessings of scoliosis. If anyone wants to PM addresses and such, I would like to have them. You are an extended family to me and I love you.
My e-mail is cherylplinder@hotmail.com . You can e-mail me information if you want. My mailbox gets a lot of use and sometimes it fills up.

Love and Hugs to All

[Celia]

Cheryl,

What an emotional rollercoaster this is! We all love you and know how strong you are.


Jill,

Deirdre has a left thoracic curve with the apex at T8-T9. Before going into the spinecor brace she had a very slight compensatory lumbar curve going to the right but if you look at her x-rays that has completely disappeared. The thing that was causing me a lot of stress was the upper thoracic curve that came out of nowhere and at first seemed benign and postural (obviously it was) but appeared in the latest x-ray to be a threat. As of today, if you stand behind her, the right shoulder is slightly in front of the left but height wise they are level which is *exactly* what the picture in the Spinecor manual shows and there is also a twisting of the thorax to the right to correct her left thoracic curve. According to the Spinecor manual, a shoulder tilt is prescribed for *very* high thoracic curves so this would explain why she was developing the curve high up. It's important for parents to know what the curve classification for their child is and the principal corrective movement for that curve type because I was tightening the #4 strap thinking this was keeping her thoracic curve in check but in fact it was causing a secondary curve to develop which in time would take the lower curve with it as the spine tried to stay balanced....hence starting a vicious cycle. The latest x-ray is the one with the arrow above the right shoulder.

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

[gerbo]

I hope it is some comfort to all of you that I can identify something that we did radically different than what we had been doing before that led to such a rapid progression.

sorry cheryl, I have to strongly disagree with you on this one. You are now blaming yourself for the curves progression. You SHOULD NOT!! It is only your theory that the tension in the various bands caused the curve to get worse. I think it is more likely that the curve got worse, because that is what they tend to do!! Full stop!! I think it is very dangerous if and when individual parents, (for understandable reasons) think they can do better than the advice and guidance given by their clinician. If we are not careful , we will be getting, next to the officialmanual, "the spinecor manual according to cheryl" and the "manual acc to celia" and I am sure I could come up with a "manual acc to gerbo"

I am only saying this as I feel that you are beating yourself up totally unneccessary!!

[Celia]

... next to the officialmanual, "the spinecor manual according to cheryl" and the "manual acc to celia" and I am sure I could come up with a "manual acc to gerb"


Oi :rolleyes: I can't speak for Cheryl but I'm sure she has some valid points and can offer newbies some valuable advice as to the do's and don'ts. She told us she was making adjustments to the brace on her own and so was I. Do you think I erred in Deirdre's case or the advice given to parents to make sure they know their child's curve classification and the corrective movement for that curve type? If parents follow the Spinecor Manual and instructions given by their doctors and the curve progresses then....yes it's beyond their control at that point. If you look at the literature some curves have completely resolved with the Spinecor so shouldn't we try to understand.... WHY????

[RugbyLaura]

Cheryl, I'm with Gerbo on this one. Rachel's progression is following a very similar pattern to many others. Around 12 years old seems to be the most dangerous time for girls with Juvenile Scoliosis (ie first diagnosed when under 10). I'm sure Melissa will agree that Nicole's progression was not her fault, just as Rachel's is not yours. This would have happened anyway. There was some progression in the early part of this year, which certainly indicated that more was to come. We're all doing the best we can to deal with this insidious condition, please don't blame yourself.

Have you spoken with your doctors? Do they have an opinion on this?

You are blessed to have such strong faith to help you through difficult times.

with tough love,
Laura

[RugbyLaura]

Celia, Where's your Canadian eh :cool: gone??

[Celia]

Did you like it? :D I can add it back on

[MATJESNIC]

Cheryl.

When Nicole and Rachel were diagnosed they were both told that they would eventually need surgery. Why? Because statistically at their age and with their risser and their large curve, they would need surgery. There is no mystery here. Possibly we gave our daughters some extra time with the Spinecor. You thought you would beat those odds. I thought we would, too. Nicole had an amazing initial correction. Better than many. She also had some really great appts. where her curve decreased. But we all know what happened in the end. We never tampered with the brace. Nicole wore it religiously and perfectly. She even did her ballet in it (along with jazz, tap, and every other physical movement). We even made a DVD for Dr. Rivard of Nicole dancing in her brace. We would have dedicated our lives to the Spinecor and spread the word of its success. That is how devoted and dedicated we were to it.

Nicole and Rachel progressed because they have the type of curves that even Spinecor can't stop. Every top orthopedic in Phila that we saw told us that. But they also respected and supported our decision to try something to avoid surgery.

It was always out of your control and our control.

I hope you can find something else to avoid surgery for Rachel.

But if you can't. We will be here to support you every step of the way.

Once you get through it, you really do wonder why you carried on as if the sky was going to come down if you had to do the surgery.

I pray for you that you can let go of this guilt that absolutely does not belong to you. Please let go of it. You did not cause the curve to increase. You do not have that kind of power. Give this all up to God and continue on your journey.

Big hugs and prayers to you for peace in your heart.

Love,

Melissa

[mariaf]

Cheryl,

I don't know much about Spinecor, but I must agree with Melissa and everyone else that your daughter's progression is NOT because of anything you did or did not do.

I remember when David wore a brace, I would panic if the doctor said that a strap had to be adjusted or that something needed to be tightened because she thought it was not fitting properly. But she told me that, over a couple of months, something like that would NOT affect the ultimate outcome. Braces, by their nature, very often need adjusting and fixing. Kids grow, their bodies change - it would be unreasonable to expect them to fit perfectly ALL the time.

I am not saying that a good fit is not important and it is certainly what everyone should try to achieve. But what you did or did not do with the brace is NOT what caused Rachel's curve to increase.

Please do not blame yourself. If we were able to control our kids' curves, they would all be at 0 and none of us would be on here :)

[RugbyLaura]

Did you like it? :D I can add it back on

I stole it :D :D :p

[Celia]

The expression "Eh" is a very Canadian thing.....so I'll add it back on LOL!! :D

[Celia]

I never blamed Cheryl for Rachel's progression. I try not to have a defeatist attitude towards this whole thing and who knows what the outcome will be. I could have thrown in the towel years ago had I listened to the naysayers and doctors. I try to learn as I go along but if I listen to all the studies, I might as well just give up. I'll keep lessons learned to myself in the future. Not a peep from me.

[cherylplinder]

Oh no!

Celia,

You never blamed me, I blamed myself. You recognize that some facors with the brace in the last 5 months were not optimal. That is just reasonable.

Nonetheless, You are all right.

If I keep blaming myself, whatever the cause, I am stuck on stupid.

I won't ever know if my mistakes contributed to the deterioration. I talked to Dr. Coillard yesterday and asked her and she said she didn't know, that it would be difficult to say that that made the difference.

I am trying to keep busy deciding our next move. I get a little better every day!

I know that every word said to me on forum relieves some of the pain and frustation. That you all care so much is SOOOOOOOOOOOOO COMFORTING!!!!!!!

When I feel bad, I come and reread some of your posts to me.Then I feel strengthened and comforted.

Melissa,
Thank you for reminding me that when this is all over, I will wonder why I fretted so much.

Thank you all for letting me vent my frustations, fears, and disappointments to you. No one else really understands like you do. I helps so much to be understood and sympathized with!!!!!!!!!!!!!!!!

Hugs and love,
Cheryl

[RugbyLaura]

So glad you're feeling stronger Cheryl. It's great that we're all there for each other whenever we're needed. :)

Celia, I don't remember any suggestion that you blamed Cheryl???:confused: Please don't stop peeping. I like your peeps!


edited for typo

[rtremb]

Celia: Keep on posting your ideas, thoughts, research you have found and suggestions. I appreciate them all.

Ruth

[Celia]

Aww....you guys are so sweet! This birdie can continue to peep and and not be silenced forever more??? LOL!!!

[rtremb]

Pam:

My children and I have never had "supine" x-rays taken (i.e. x-rays laying down, face up). It is my understanding that lateral bending x-rays are used to identify structural and non-structural curves.

As for whether a person's curves will progress or not - that must be in God's hands because as far as I can figure out no human knows whether idiopathic scoliosis curves will actually progress or not. For example, research is currently being done in Montreal, Canada, collecting blood samples and testing same to attempt to find a way to predict whose curves will or will not progress despite all treatment attempts. This research wouldn't be being done if the doctors already had an answer to this most important question which faces all of us as we deal with scoliosis and attempt to find the best treatment. Even identifying the scoliosis gene hasn't actually identified whose curves will progress.

As for Celia's knowledge about scoliosis - I don't think you are qualified to comment on how deep her knowledge might be. It is obvious she has spent years and years reading about scoliosis. I would not be so quick to think she doesn't have anything of value to share with you.

Ruth

[emarismom]

Today I took Emily back to the Ped. Ortho. He read the xray at 24 degrees, so I guess the curve is definitely in that area (Chiro said 23). Todays doctor did at least make me feel better in the sense that "There is nothing more that I can do at this point". He says he is not convinced that real progression is occuring and will wait until I come back with the next xray to make that determination.

The chiro wants me to do another xray in three months. Ortho feels that is too soon and suggests 4-5 months. I beleive that the Spincor protocol would not have me taking another xray until one year in the brace. I know that waiting 6 full months is way too long for me to handle. Any opinions on how long I *should* wait to do the next xray.

[mariaf]

Pam:
As for Celia's knowledge about scoliosis - I don't think you are qualified to comment on how deep her knowledge might be. It is obvious she has spent years and years reading about scoliosis. I would not be so quick to think she doesn't have anything of value to share with you.
Ruth

Ruth,

It's true that none of us would be able to know how deep another's knowledge of scoliosis might or might not be. We are not doctors. I'm sure though, for example that Pam - after living with scoliosis for nearly 30 YEARS - is quite knowledgeable as well. I know I would be if I had the condition for three decades (Pam - I have almost ten years on you in age so I am not calling you old -LOL!).

I don't think Pam was disputing Celia's knowledge of scoliosis (in fact she posted earlier to Celia "you have much of value to offer here..."); I think she was rather disputing her interpretation of medical evidence, an interpretation Pam just happened to disagree with, as I'm sure you would agree she has every right to do.

Regards,

[rtremb]

Celia:

I don't want to leave because I enjoy the forum and I don't think you should either however I can't engage in battles on here because my real battle is here at home with my daughter's scoliosis and my son's scoliosis and NF, my brother-in-law's early onset Alzheimers, my sister-in-law's cancer, etc.

If my heart starts to pound and I feel intimidated when I read a post on the forum I know it is time for me to stop reading and go do something else.....!

Ruth

[Celia]

Ruth,

There is a feature that allows you to add certain members to your "ignore" list and any posts they make won't be seen by you.

[RugbyLaura]

Phew!! I go to bed happy & all **** breaks loose on the other side of the pond... Ruth, please don't go.

Michelle - Yes I saw your post in there. For what it's worth - I stress (for the benefit of txmarinemom) that I am not a medical professional, just a fellow mum, trying to get by & share information with others in the same boat - I would not go for an earlier xray. Knowing that there has been ?4??? degrees of progression in 4-5 months or 5 degrees in 6 months will not make a great deal of difference. I don't think that anything you have done, re washing, positioning, etc has made any difference. We are very relaxed in our attitude towards Spinecor. As I've posted before the whole thing is washed & tumbled as if an ordinary garment. Imogen wears it for less that the prescribed hours and has breaks of up to 5 hours at a time (occasionally) yet it seems to be working for her.... Hard to say, and much harder to do I'm sure, but if you can, just keep up the good work & relax for 6 months.

I expect I shall be told off for this post :o And not sure how I'd be feeling if we'd had your results.... Good luck with your decision.

Laura

-How can you accuse Celia of being personal when you have been attacking her so unpleasantly? Your posts were extremely hostile from the outset - it would take a saint not to repond in a defensive manner. Ok, so celia's not a saint (insert some silly smiley face here :p ). If you have a point, could you please make it in a more polite way in future? Pretty please.... We're all friends here, trying to get by the best we can. Don't spoil this tread. :mad:

[RugbyLaura]

Not wishing to get drawn into an arguement (although apparently failing - insert some silly smiley face here :p ). You appear to be doing exactly that of which you accuse Celia :confused: . You are obviously an intelligent woman. I am trying to understand your motives for this attack, but failing in this too.

I won't be editing - even if my spelling is less than perfect.

Michele, I should have said ealier that I think the fact that "he is not convinced that real progression is occuring" is good news. I know it's frustrating not knowing for sure what's going on. Immy's curve went from 28 to 32 to 38 in 6 months but due to different xray methods & different doctors noone was prepared to say that it was progressing. We felt completely out of control and that noone was listening or taking it seriously. We were sure that it was progressing. Looks like we may have been wrong, and all that worry and heartache was unnecessary.

Thinking of you,

Laura x

[gerbo]

this is one of those occasions where you can see the tension slowly building up between people, and in a way it is hard to understand why as both people involved are clearly sensible and reasonable people, but things just deteriorate as the discussion slowly turns into an argument.

It isn't as bad yet as it has been in the past and it must be relatively easy to pull back from it and just focus on the issues at hand rather than focussing on each other. Both Pam and Celia have much to offer in knowledge, experience and personal support and I am sure face to face they would be the best of friends.

It is so easy to make or take things personal on these essentially inpersonal sites, it would be good if we all could continue to respect and appreciate eachother's individual value and situation, and try to lighten eachothers burden, rather than adding to it.

gerbo

[emarismom]

Thank you Laura for your response. I think I just over worry and try to do to much. Quite ironic when there is really NOTHING I can do, as all of this is completely out of my control :confused:

I guess I need to change my signature. Somehow doing that seems to make it more real. I'll get to it one of these days.

[RugbyLaura]

I don't think there's such a thing as over worrying when you're a parent! I have done plenty in the last year!! I guess we were just lucky enough to have good news this visit so can take some time out from worrying...... This rollercoaster rattles along, remember that Immy was 38 degrees age 9 and is now 27. Who knows what's next for any of our wonderful children??

[emarismom]

Thanks Laura. I took the day off today to just go shopping, have lunch with my hubby, and hopefully forget about scoliosis for awhile.

What's most upset me this week is that rollercoaster ride. With Emily looking sooo much better, I had gotten a false sense of hope that the ride would be ending and I wouldn't have to worry for 5 more years. (Emily was diagnosed at 5, so I've already been in this for 4 years). This is my wake up call that nothing but time will solve this. At least I have the knowledge, that in time Emily can be "cured", whether it be with surgery or not. Alot of parents don't have that.

[gerbo]

I guess I need to change my signature. Somehow doing that seems to make it more real. I'll get to it one of these days.

just change it to "curve approximately 20 degrees", which could well be kind of correct and reflects all the variables involved and variation that occurs in measuring a curve

[RugbyLaura]

I guess we've been quite lucky as Immy was first diagnosed only a year ago. We've sort of known about it for a year or so longer but didn't look into it or take it terribly seriously. When she apparently progressed so quickly immediately after diagnosis I felt HUGE amounts of guilt. I was sure that not having taken it seriously meant that we had missed the critical period for treatment - although here in the UK they tend not to brace until 30 degrees plus -. At the time I was very cross that they don't screen here. Since then I have seen arguments that state that screening causes unnecessary worry when mild Scoliosis is picked up which would probably never have progressed. I'm sure there are good arguments for both, but what I'm trying to say in a particularly inarticulate manner (!) is that I'm glad we were spared those extra four years of worry.

Have a great lunch and buy yourself something expensive :D
XX

[jillw]

Emily's Mom, I probably wouldn't want to wait 6 months if I were you either. What if you do a 3-5 month range...if she grows a lot in the next few months go back in 3 months, if her height (and weight since I suppose if they were growing curved we wouldn't necessarily see an increase in height) were only slowly increasing or were stable maybe go in 4 or 4 1/2 months?

I would say definitely go in 3 months but the whole frequency of xray radiation exposure that our children are subject to scares me so I would probably try to wait an extra month or two unless there were other circumstances (such as growth) that made me want to get in sooner. Of course I'm not a professional and I have way less experience with scoli than just about everyone else on these boards - Good luck with whatever you decide!

Was Emily braced before Spinecor? You mentioned she had scoli for years; i'm guessing she probably wasn't given the size of her curves. (had they been around 16 degrees all those years or had they creeped up a bit if you don't mind my asking?)

[MATJESNIC]

We were told that the ideal was every 4 months, three times a year. This way they are not exposed 4 times a year. That was just one orthopedics opinion. I always thought 5 months was too long.

[gerbo]

spinecor protocol says once/ 6 months, more frequent is not going to make any difference in practice as it will not change the management!

[Celia]

I just wanted to say Good-bye and Good Luck!! I love you guys!!! A few of you know my private e-mail so you could send me updates. If you don't know it, ask Gerbo.

[rtremb]

I have a question about the Spinecor brace. My daughter's back is developing a dent where the lumbar curve is. This has developed over the last week or so. I am wondering what this is and whether it could be being caused by the Spinecor brace? Have any of you noticed this on your children's backs? She is wearing the brace 17-19 hours per day. Is it possible this is spine rotation?

Ruth

[RugbyLaura]

No Celia! Please don't do this. You are valued and dare I say needed on this forum. I can understand you feeling very angry about your treatment. For some reason you seem to be the main target of abuse from certain quarters. I have also seen an extremely rude post directed at Ruth. The moderators (are there any on this forum :confused: ) need to act to curb the behaviour of this particular person.

It would be a terrible shame if genuine, caring people like you were driven away, please reconsider. :( :(

[RugbyLaura]

Sorry Ruth, can't help - no lumber curve & no dent.

[WNCmom]

I have a question about the Spinecor brace. My daughter's back is developing a dent where the lumbar curve is. This has developed over the last week or so. I am wondering what this is and whether it could be being caused by the Spinecor brace? Have any of you noticed this on your children's backs? She is wearing the brace 17-19 hours per day. Is it possible this is spine rotation?

Ruth


Ruth:

I'm not sure what you mean by dent, but here is what I see on Sidneys: His spine "disappears" for several vertebrae at his T curve, which is the main one. He is very slender and I can't see the knobs of his spine there, but I see them everywhere else--it's because of the rotation. My husband has something similar, with a much smaller curve (never been x-rayed).

But it were rotation, why would you just be noticing it on Esme? Surely she's not just beginning to have spinal rotation? Odd that it would happen in just a week.

Mary Ellen

[Sherie]

I have a question about the Spinecor brace. My daughter's back is developing a dent where the lumbar curve is. This has developed over the last week or so. I am wondering what this is and whether it could be being caused by the Spinecor brace? Have any of you noticed this on your children's backs? She is wearing the brace 17-19 hours per day. Is it possible this is spine rotation?

Ruth

Ruth

Sheena had a dent on the concave side of her lumbar curve prior to surgery. If you would like to see her before and afters, send me your email in a pm, it was more noticeable in person, but you can still see it on her photos. She had a lot of rotation.

[MATJESNIC]

Gerbo,

Even though it wouldn't change the management, for someone like Nicole, we lost a little bit of time before surgery. If a curve gets out of control a month after your appt and you don't get seen for 4 or 5 months, you have wasted so much time. Time that could have been better spent in a new brace, in a new program or getting surgery.

[cherylplinder]

Rachel needed to be taken back in September. She had a growth spurt right after her appt. At the least, if this happens and straps are not what you're used to, send photos and call.
I'll always wonder what would have happened if I had.

[emarismom]

Jill,

Emily was diagnosed in Sept. 2004 with a 28 degee curve. She was 5 years old, so immediately an MRI was done since curves of this range are generally not found in children that young. She was found to have a Chiari Malformation and Syringomyelia (cysts inside her spinal cord). This is the cause of her scoliosis, she is not an idiopathic scoliosis case.

In Nov 2004 she had brain surgery to correct the CM/SM. The hope was that the scoliosis would stabilize or improve after the surgery. Thankfully, it did. For the last 3 and 1/2 years her curve has stayed in the 17-24 degree range. None of the doctors I have seen recommened bracing her yet as they wanted to see progression before any type of treatment (if we can call hard bracing treatment).

However, when scoliosis related to Chiari does progress, it tends to be harder to control with bracing than other forms of scoliosis. Because of that, and the fact that Emily was getting older (she just turned 9), I decided to get her into a Spinecor to try to be proactive.

As for the Chiari/SM, she has never had any symptoms from them except the scoliosis. In some ways the scoliosis was a blessing, as it led to the diagnosisof the underlying cause. Left untreated, she would have faced almost certain neurological damage as she got older.

By the way, according to the Ped. Ortho.-he has been with us since the start of this journey when she was at 28 degrees- Emily really has not progressed at all because she is still not where she was when all of this began. Ya think he was trying to make me feel better!!

[RugbyLaura]

Thinking aloud about the whole washing question.... It is important to wash the brace once a week at a temperature sufficient to "shrink" (my word - probably not a good one) the elastic back to the correct size. If this is not done the brace will not be as tight as it's meant to be.

Hope all Spinecor users are well. It's gone very quiet here without Cheryl & Celia. Please don't give up on this marvelous brace. I am extremely grateful to the makers and to everyone on this thread for bringing it to my attention. If this had not happened Immy would be wearing a hard brace, not dancing and having a completely different lifestyle. If the best that Spinecor can do for her is to put off surgery while allowing her to enjoy her childhood - I still think it's the very best that I can do for my child at this moment in time.


Love to all & Merry Christmas (again!)
Laura

[WNCmom]

Laura--

I'm still here! And very grateful for Spinecor, too. Sidney is much happier in it than in the Boston brace.

And I so appreciate this forum and this thread.

Merry Christmas to everyone--I'm off to Vermont for the holidays and will be without email; see you all in the new year!

Mary Ellen

[rtremb]

I am still here too - not much new to add right now and a bit busy with Christmas preparations too.

Esme's dent in the lumbar area seems to have mostly disappeared again especially after today's structural integration session which straightened her back and her little rib hump quite a bit. She certainly loves these treatments - they eliminate a lot of her back pain. She describes it as feeling like it is "opening up" her back - maybe because her back is so tense and the treatments loosen it up.

Anyway, Merry Christmas to everyone. Thanks again for all the advice and support.

Ruth

[jillw]

Ruth, I"m glad to hear the dent has mostly disappeared! So the SI she has is similar, but not the same to Rolfing?? I have read that Rolfing can be a bit uncomfortable, but it sounds like this one is not? I forget, wasn't it Esme who was in a really good mood the day after the first session? Does she still get that happy feeling after these other sessions? How long does it last (of course ignore the questions if I had her confused with someone else!)

Happy Holidays to all! We're in that rush mode right now....

[rtremb]

Jill:

It was Mary Ellen's son who had the good feeling. SI is the same as Rolfing. Esme's therapist was trained at the Rolfing Institute. The SI is uncomfortable at times, ticklish at other times and feels really good at other times. Esme does not get bruised though (as our paediatrician suggested). The "massage" is deep sometimes which is why it can be uncomfortable but the theory is that years of tight fascia are being released. Any discomfort is very temporary and Miranda stops right away if Esme says it hurts.

Esme is very tired after the treatments and usually falls asleep in the car on the way home or when we get home. She is a bit of an emotional wreck for a day or so afterwards too. She has really big highs (laughter and high energy) and really big lows (outburts of anger and lots of tears). This tapers off though after a day or so. The rolfing books say this is to be expected.

The SI is said to have long lasting benefits to posture. I guess only time will tell if this is the case for Esme.

Ruth

[emarismom]

Merry Christmas! I hope that this new year will bring you all the hope and peace that we want for all of our children. Happy New Year!!

[jillw]

Happy New Year to all!

I was just trying to remember, does anyone have a spinecor check up coming up in the next month or so?

Ruth, that's interesting about the mood swings that can happen post Rolfing session - do they say why that is? (I seem to recall reading something about it decades ago - but I can't remember what they attributed it to). My daughter already has swings without Rolf, I wonder what she'd be like with Rolfing! :eek: I am hoping to find an experienced practitioner near us in the next month or so (initial searches uncovered names that appeared to be pretty novice- we don't live in a big market so I may have some trouble finding somebody; we'll see)

[christine2]

Happy New Year

We have a re check in February - no date yet- we are hoping for the week of our Feb vacation. I will call next week to see if we can book an appt.

[braceguy76]

Dr. Deutchman is the one who fitted Nicole and he is considered to be one of the best in this country. People travel from all over to get fitted by him because of his expertise. He has an office in N.Y. city which is only a one and a half hour trip by train for us.
Dr. Deutchman was both surprised and pleased when we did the x-ray in Nicole's brace. Unlike the hard brace, you don't achieve anything near a 50% reduction in the brace. It usually only shows about a five degree reduction, I think. However, Nicole went down something like 14 degrees in the brace. I don't know if that means anything as far as likelihood for success. We will not know if it is working until at least Christmas when we get the x-rays without the brace.
In addition to 10 hours of dance per week, Nicole does specific stretches on a ball and standing. She also is working on a balance board. She does eye exercises, gets electric stim and gets some gentle massage and manipulation from the chiro. She wears her brace 22 hours a day. We are doing everything possible to try to halt this curve. Only time will tell. Best of luck with your decision. Melissa

I was wondering as of Jan 2008 how is your daughter? is she still wearing the spinecor brace? any curve progression/reduction>

[braceguy76]

I am interested in anyone who has been wearing the spinecor brace for more than 2.5 years. I'm interested in outcomes or progress.

[MATJESNIC]

My daughter Nicole had spinal fusion almost 4 months ago and is recovering well. She was diagnosed at age 11 with a 40 degree curve. Only a miracle would have prevented her from the 90% chance of surgery.

[mpj]

Hi Jill,

We have an appointment on the 14th. I will post after we get back. :)

Sarah

[Carly's Mom]

My daughter Carly has Right Thoracic Lumbar curve of 40 degrees. T10-L3 She started with a 32 degree in March when she got the brace. There was no correction in the brace but they said that doesn't always happen and that the brace may be keeping her spine from getting worse. We see Dr. Marco at UT Imaging in Houston, Texas. The Orthotist that works with him is Miguel Gomez. We just got back yesterday from a 6 month check up and she went from 35 to 40. They said that measurements can be off by 5 degrees. Due to our insurance last year we had to have a medical doctor write the prescription, not a Chiropractor.

They also said that excercises are not all that important. I took her to three doctors last year for opinions. One said she was a Risser 0, another said 3 and another said 4. It is so frustrating to know who to see and where to go.

Her back pain has decreased but now she may have a mild Chiari. She has complained of neck pain for 6 months now. Plus all the other pains that go along with scoliosis. whole body muscle pain, fatigue, knee pain, headaches. We will finally see a Rhematologist at Scottish Rite in Dallas next week.

She does do some excercises and swims a little and we give her extra suppliments and other things to help her but she is not 100% in good health.

Does anyone have simular situation?

I now see that Dr. Lamantia flies into Plano Texas which is 1 hour away from us and I am waiting for him to call me back to see what he can do for my daughter.

I just wish our insurance co. would cover Chiropractic care. I know surgery is the thing we are trying to avoid and also avoiding her getting worse. We want the best care but are low income with insurance.

Any advice or ideas out there?

[emarismom]

Carly's mom,

My situation is different from yours but I do have some suggestions. First of all, if there is a "mild chiari", then you need to have the MRI films seen by a good neurosurgeon who KNOWS about chiari. The chiari is often the cause of the scoliosis, and once that is treated it can help to stabilize or in some cases improve the scoliosis.

Some of the symptoms you describe may be attributed to Chiari and not to the scoliosis. Was the MRI brain and full spine? What else was noted on the report?

I am currently seeing Dr. Ouelette who is in Atlanta. He does have an office in Texas, but I am not sure exactly where. If you send me a private message, I will give you his information.

[cherylplinder]

I feel that our experience on this forum is that these larger curves (30 degrees and up) do not hold forever in Spinecor. They seem to have an initial positive response in the first year, followed by a fairly rapid deterioration. I would try something different and wish I had 6 months ago when I first saw progression.
Rachel is now in the Cheneau made by Luke Stikleather of Fairfax, VA. It is not anything like an off the shelf Boston, this is a TOTALLY different brace. Rachel gains over an inch in height in brace. She got no correction in a Boston, not one degree. He trained with Manuel Rigo in Spain and makes an amazing brace. He doesn't promise anything, but has achieved correction in some cases. He is a prince of a guy.
I am interested in incorporating the Schroth exercises with it and will let you know if I go that route.
I would be thrilled if there were any improvement, but would be satisfied to hold her the next 2 years of growth.
We will have in brace x-rays in a few weeks.
Best of luck.

[Carly's Mom]

Yes, I came across him on the internet. I think he is in Houston. I had actually talked with him over a year ago in the fall. I will give them a call. Dr. Deu...l caled me and the prices are the same as they were last year. Without taking insurance it would be very costly for us but we will still think about it. Thanks for the feedback.

[MATJESNIC]

Cheryl,

I wish Rachel the very best. I was actually thinking of going there. My sister lives right around the corner from Fairfax. But by the time things got bad for Nicole, we felt it was time for surgery. Also, Nicole was already 5'5" and done most of her growing. But I always had the Chenau in the back of my mind. How has she adjusted to it?

[cherylplinder]

She is adjusting well to the brace. It is 100% more comfortable than the Boston she was in as her first brace.

If she were not still risser 0 and at least a year premenarchal, I might not be so aggresive with trying to hold the curve.

I have another appointment in St. Louis(I don't know which doc) for their input and because it is much closer to home. If I don't decide to staple her lumbar, I might go there. Dr. Betz offered the option of stapling her lumbar and fusing her structural curve. I asked if he would be willing to do that and they met on it this week. They were willing to try it, but didn't feel they could get more than 20 degrees correction(to 32 degrees). I am not sure that with that much curvature left for the lumbar to try and balance that it would all work out. If she could get 60% correction of the thoracic curve, or even 50%, the lumbar would be in the 20's and might hold. I just don't know.
If you fuse one curve and the other progresses, that's 2 surgeries.

It's a lot to think about.

[scoliomom]

hi carly's mom-

my daughters curves are 47' and 45 ' . she is wearing a cheneau brace and actually has a correction to 29' and 24' i think. I would definitley look for at a least a correction in the brace. we are going to a scroth clinic at the end of March for the therapy- I too am hoping to avoid surgery!!

take care,
helen

[jillw]

Cheryl, I have been thinking about Rachel and wondering what you were going to do. It sounds like you have been very busy and moved very quickly and I'm glad to hear that it is more comfortable than the Boston brace...i was actually (pleasantly) surprised to hear that since i have heard the corrections tend to be better in her current brace so I wondered if it would be harder to wear. Good luck!!!!!!!

[BraceGal]

Hi,
I've Been reading about the Spinecor braces 4 a while now.
I'm just wondering how you go to the toilet in them?
Are they more comfy than the boston brace ive been in 4 2 years now :confused:
i would love it if some1 could answer these.
Thanx, BraceGal

[mpj]

Hi BraceGal,

To use the bathroom, you unsnap the two small straps that go between the legs. Most people also wear a bodysuit with snaps between the legs. Some people have sewn snaps into their underwear as well.

We have not used a Boston brace, but my daughter is comfortable in her brace. She prefers wearing it to not. It did take a few weeks to get used to though. The only time she does not like to wear it is after wash day as it shrinks up a bit. It takes her about 10 min. to get used to it again.

Hope this helps.

Sarah

[BraceGal]

Thanx :D
Thats really useful to know
so the spinecor is on in sport to?
That must be a bit werid :confused: but must make it like ur not wereing a brace at all
im really wanting one of these braces but there not in vic, Australia :(
but theres no harm in asking?

BraceGal (boston brace 2 years!) :p :p

[WNCmom]

Bracegal:

My son (age 12) wore a Boston brace for 6 months before switching to SpineCor. He finds it much more comfortable, and he doesn't have to take it off for phys ed in school--also his clothing fits better. Recently an alternative to snaps has become available. It's a pair of shorts with velcro, and the straps velcro to the shorts. The shorts have a flap so you can go to the bathroom, which may make it much easier to wear for boys than girls, but I thought I'd at least let you know. Good luck!

[mpj]

Hi BraceGal,

I wouldn't say it is not like wearing a brace at all, but you can do a lot in it. My daughter wears it for all sports except for the the uneven parallel bars in gymnastics and swimming of course. She wears it for basketball, baseball, dance, rock climbing, sledding, snow boarding, skiing, etc. She also wears it for any sports they do in gym class.

Sarah

[cherylplinder]

Bracegal,

How large is you curve?

[RugbyLaura]

Sarah,

Hoping all goes well with Madeline's appointment tomorrow,

Laura

[BraceGal]

umm i dont really no ive been in a brace 2 years and when i was only put int it because i have other medical probloms as well, my curves werent in the braceing cadagorie

Tayla :D

[txmarinemom]

Bracegal ... I won't even ask "Where's your Mother - and why isn't she filling you in on YOUR body?" ...

But this IS your body. Find out the details. Do your research.

Ask your ortho ... take notes. You may not understand it all, but you have a place to have it explained (here).

Hugs, Chica. Take control.

Pam

[BraceGal]

I know heaps about my back and stuff ive just never asked the drs about the curves! :rolleyes:
They really havent told me either

Tayla

[txmarinemom]

I know heaps about my back and stuff ive just never asked the drs about the curves! :rolleyes:
They really havent told me either

Tayla

Tayla, you *don't* know "heaps" if you don't know your curves, their degree and severity.

That is the FIRST thing you should know.

[cherylplinder]

TX,

Lighten up a little. She's a kid. Some adults don't know. The way you phrased it was kinda harsh.
She said she was going to ask.

HUGS!
Cheryl

[jillw]

Sarah, I hope all goes well with the appointment today!

Bracegal, The theory is that spinecor works better on "milder" curves which is why it would be helpful for you to know the size of your curves. From what you posted, it sounds like they were minor when you were first diagnosed...hopefully they haven't gotten larger since then. I don't know if the other medical issues you referred to would keep you from being a good spinecor candidate but as others have mentioned, you (or one of your parents) could always contact Dr. Rivard in Montreal to get his take on it. Good luck!