spinecor

[MATJESNIC]

Celia,

I can't believe how straight her spine is!!!!

[Celia]

Thanks Melissa! Gerbo, I don't think she's ready to go without the brace. It's obvious from the picture that it's pushing her straight because her spine isn't centred properly. If you look closely, you can tell the apex of the curve is not completely healed and there is either wedging or rotation??? Anyway.... I'm very happy that we can continue with the brace and I really don't care if she has to wear the Spinecor until skeletal maturity - It is *so* much better than the alternative. Have I mentioned that I *LOVE* dr. Rivard and dr. Coillard *wipes a tear* :D



*******

[gerbo]

i wasn't suggesting one moment to go without, but do wonder what her spine looks like unsupported. Clearly no out of brace xrays taken. Where is the apex, by the way?

[Celia]

The apex is at T8 and T9 and it might just be wedging because the pedicles are in full view. Dr. Coillard used a scoliometer to read the curve without the brace and I didn't ask what the number was because I didn't want to interrupt her at the time. Do you have a picture of Lisanna's curve showing the postural curve?


********

[gerbo]

no, they still take oldfashioned xrays were we go, so no copy to show. Anyway, this sec curve is bigger than the original curve, and although i have had reassurances from all sides it will go eventually, i feel that nervous about it, so in a way do not even want to think about it, let alone show it. Still, she looked that straight dancing this weekend, so something must be going right....

[cherylplinder]

That is one great looking x-ray!
We are so blessed to have such miracle workers as our doctors. I thank God every day!
Yes, you have to love Dr. Rivard and Dr. Coillard!
Hugs and cheers! One more successful visit under your belt!



I get nervous every time! Isn't it nice to have it over!

[structural75]

I had some questions for anyone using the spinecor under the care of the Montreal Drs.

Is it standard procedure up there to take x-rays with the brace on? Do they ever require removal of the brace a week or so prior to the x-ray for a more accurate and realistic indication of the out-of-brace curve measurement(s)?

Has there been any follow-up on previous spinecor brace users who developed the secondary curvatures as noted by Gerbo and Celia in their children? Is there any evidence of its progression or diminishment, whichever the case might be?

Any insight would be greatly appreciated.

Thanks,
Structural

[MATJESNIC]

I was told that there is little point to taking x-rays without the spinecor on until the risser is at a 3. There is so much change over the course of that period that it would not tell an accurate story. But when they do take the x-ray without the brace, I remember Dr. Rivard saying that the child should be out of the brace for about a week. Please don't quote me on either of these statements. I receive a lot of info while I am there.

Yes, my daughter had a compensatory curve that has increased over the past 18 months. In fact, nobody ever mentioned that curve to me. Not even the ortho who diagnosed her at Temple Hospital. It is interesting because I once mentioned that Dr. Coillard actually believes that it was the main curve all along. Not sure if I understand all that.

[structural75]

Matjesnic,

Thanks for the reply. Does the risser number apply to those children who are still very young? I was just thinking that if they were to do an out-of-brace x-ray on a child who was say 4, 5 or 6 it might give an indication regarding whether the etiology (cause) was still a present factor. If it was still a factor, then wouldn't they need to remain in the spinecor brace for more than the recommended minimum of two years? Possibly for their entire childhood? Essentially becoming a race against growth and progression.? Just thinking aloud. :)

What have they proposed to do with your daughter's compensatory curve (or primary, whichever it is)? That is interesting. Are they now adjusting the brace for that curve?

There seems to be a pattern forming here regarding these 'secondary curves'. Has anyone else had this experience as well? I wonder if this is an unfortunate byproduct of the spinecor brace.??? I guess only time will tell. It would be great to see a third party controlled study done on this brace to get a better idea of what its effect really is. Studies done by the makers are interesting and important, but I can't help but feel as though there is a certain amount of vested interest in its outcome. I can't imagine what the Montreal Drs would say/do if their studies proved problematic for the brace that they've been administering all this time.??? I guess for the time being we just forge ahead.

Regards,
Structural

[Celia]

I think we're doing pretty darn good considering our starting point :rolleyes: I have complete faith in Drs Rivard and Coillard when they tell me that the postural curve is transient. Trusting YOU would be a different matter!


********

[structural75]

Celia,
I wasn't asking you for a bitter response, or one at all! I'm trying to ask questions to people who are mature enough to have a discussion here. If you can't contribute something to that intelligently and without malice, then leave it alone.

Congrats on your update... sincerely! But your daughter is not indicative of the results that ALL others are getting and I don't believe that the creation of a secondary 'ideopathic' curve is very encouraging. Nor do I believe that having "COMPLETE" faith in the Drs inconsequential responses to the formation of those curves is very wise! And yes, it is good considering where you started... but we have yet to see or know where you'll END!

When did I ask you to "trust me"??? Why do you insist on ruining every honest conversation that I'm a part of? Maybe it's about time someone reports you to the forum president because I'm sick and tired of your ignorant and degrading responses.

[structural75]

Celia,

Using a quote from the President of this forum, Joe O'Brien:


NSF provides many different services, but for the past 28 years our primary mission has been the early detection and treatment of scoliosis. Our current focus and advocacy is targeted towards; Enhancing our knowledge about the cause and progression of scoliosis; improving the standards and methods of screening and measurement; and replacing the incredibly frustrating"wait and see" approach with effective early intervention treatments.

In order to achieve better patient care for our children and future generations we need to join together to seek, and demand, more definitive answers.

I haven't heard much more from you besides banking entirely on the spinecor brace alone (which hasn't worked for many people despite your personal success with it). So in keeping with the intentions of this forum, some of us would like to think and act more 'globally' on the issues at hand.

I would appreciate your understanding and respect for others not as fortunate as your daughter.

[Celia]

If I ever drive to Montreal again, I am going to drop in on you on my way through or make a detour and come see you!

Cheryl,

I just read through all the posts and I noticed this one :D I would *love* for you drop by but it's quite a detour to Montreal....maybe we could all meet up in Montreal when we're scheduled to be there?


*****

[Sherie]

But when they do take the x-ray without the brace, I remember Dr. Rivard saying that the child should be out of the brace for about a week.

I would agree with this and I'm sorry if I'm being repetiive I've probably told this story before. Because of some of the things we were trying, she had xrays within a month of each other and she had been wearing the Spinecor for about 5 months at that time. The first set, she had xrays taken immediately after removing the brace and they were still within a few degrees of in brace around T33/L43, then 1 month later, she was out of brace for a week and we went back for xrays, her curve that time was about T40/L50, out of the range of error. I'm convinced that her curve had been steadily progressing during those 5 months she was wearing it but wasn't apparent in brace. I think it takes a while for the spine to relax. I've been told (by a scoli. surgeon) that lumbar curves generally don't respond well to bracing, but I have seen some of you getting good results, so I guess the million dollar question is why it works for some but not others?

[cherylplinder]

Hi Sherie,
Haven't seen you post in a while! Good to hear from you. I am sorry to see in your signature that Sheena's curve has progressed significantly.
Are you still focusing primarily on physical therapy?
Hugs,
Cheryl

Celia,
I keep waiting for our visits to coincide. It seems that we were pretty close at one time. I can't figure out what happened. You would be worth the detour. I love to travel! I bet Rachel and Deidre would love each other. Does Deidre like animals?

[MATJESNIC]

Why does bracing work for some and not for others? Because all scoliosis is not alike. Down the road we will know more about which type of scoli each patient has. I work with kids with autism. We do basically the same program with the same children (if appropriate). We get better results with some because they are finding that there are many types of autism. Some children have more areas of impairment than others.



Dr. Deutchman explained why there is a compensatory curve. People are curved and they don't walk around bent to the side. They stand upright and this results in a compensatory curve. The doctors at Shriner's said there was nothing to do for her upper curve. But Dr. Coillard put a strap around it and is trying to hold it. Doing something is better than being told there is nothing we could do. So why not?

As far as brace cost is concerned. It is like going into a retail store. We did call around and everyone is not charging the same for their Spinecor. Of course there is probably a minimum of $2,500. But some charge as much as $3,500. Some charge more for replacement bands than others. I know this for a fact.

As far as chiros are concerned, I told you, SportsDoc that some have saved my husband from back pain when the doctors couldn't. Right now I am going to one for stiffness in my neck and shoulders. I am getting tingling all throughout my limbs and he ordered an MRI for me. I am going today. I am not a chiro hater. But I would never let a chiro adjust my growing child. Especially one with scoli.

[Celia]

Anyway, this sec curve is bigger than the original curve, and although i have had reassurances from all sides it will go eventually, i feel that nervous about it, so in a way do not even want to think about it, let alone show it. Still, she looked that straight dancing this weekend, so something must be going right....

Gerbo,

I would check with Dr. Rivard and find out if the torso rotation exercises Lisanna is doing are a contraindication to the Spinecor brace and what his thoughts are... I know you are a firm believer in these exercises and I wholeheartedly agree but it's best to be on the safe side. The next question is a little personal so be prepared :o When Lisanna goes to the loo does she remove the thigh bands AND the crotch straps??? If she does then the whole brace must be reapplied because the elastic bands will have shifted - I think I read this in the Spinecor manual and that's why the body suits or underwear with snaps are so important. I've read of boys wearing a long t-shirt under the brace and regular underwear over the brace but their anatomy is a little different making this a possible scenario. Sorry if this is a little graphic but it's best to be clear on proper fitting as we do want the best outcome for all our children.


*****

[christine2]

Celia

The "loo" that is sweet! If you don't mind I would like to share. My daughter one day out of the blue started to just unsnap her body suit and tuck the back of it up in the brace. She does not undo anything else. This makes it much easier. So far no wet parts.

[cherylplinder]

Rachel wears a full short sleeved t-shirt under her brace, with another t-shirt on top. This reduces the irritation from the strap that goes under her arm. She wears a brief style(short leg) underwear to help with the irritation at her leg. She pulls her underwear to the side to used the restroom(except when she has a movement, then she takes her brace off.)

[Celia]

I thought you might all like to see pictures from our recent trip to Montreal:

I guess this guy is important. :D
http://i41.photobucket.com/albums/e251/sealy25/PictureFromScanner058.jpg

Notre Dame Basilica church in Montreal. VERY beautiful!
http://i41.photobucket.com/albums/e251/sealy25/PictureFromScanner057.jpg

Horse drawn carriages.
http://i41.photobucket.com/albums/e251/sealy25/PictureFromScanner055.jpg

Sunset view from the train on the way back home.
http://i41.photobucket.com/albums/e251/sealy25/sunsetviewtrainride.jpg


*****

[MATJESNIC]

Great pictures!

[MATJESNIC]

Click the first link to see a picture of my dogs, Jake and Roxy. The second link is my daughter Jessica with some of her friends in front of our fire place before her junior prom. (she's in the orange dress)

[cherylplinder]

The dogs are adorable!
Jessie is stunning!

[braceguy76]

Goodbye!! I am officially retireing Monday. Looking forward to unemployment!

[Celia]

Melissa,

Love the pictures! Brings back memories of my own high school prom - at the time it was *the* social event of my life. My date rented a Rolls Royce... it was sooooo funny :D I felt like a movie star.


*****

[amandap]

I love pictures, here are a few of Lorena and my younger one Gabriella.

These are from a wedding they were in several months back.

Amanda

[MATJESNIC]

Those pictures were precious. The one with Lorena and the little boy looks like it could be in a magazine for formal wear. Thanks for sharing.

[MATJESNIC]

Celia,

Now all the kids go in limos for over a hundred dollars a couple. The limo takes them back and forth and does nothing in between that time. Some Parents have used the limo during that time period to just drive around or go somewhere. They figure they are paying for it, why not.

[Celia]

Amanda,

Your girls are cutie pies!!!


Melissa,

When I went to the prom many many moons ago my date paid for it :eek: He did get a kiss - actually he was the very first boy I ever kissed *blushes* I think he deserved it!





*****

[alabama mom]

Hi guys. I haven't posted in a while. I am still terrible at this.
I am taking my daughter to Montreal April 10th. I am excited and scared at the same time. I hope everything goes well.
I tried to get her to Shriner's Erie, but they wouldn't brace her yet. I sent her xrays, and they said that they don't brace until 25 degrees (she is at 17 degrees now). But, I know that the Canadian doctors want to brace before then, so that's where I am going.
Does anyone have any tips for us, going to Sainte Justine, and seeing Dr. Rivard or Colliard? I would appreciate any help. Thanks.

[MATJESNIC]

Good luck to you. Just make sure you have the proper passports, i.d., or whatever you need. Did you make hotel reservations yet?

The appt. will be fairly long if she is getting a brace. They have plenty of cafeterias there, but you may also want to bring along some snacks to keep with you. All the reading material there is in French, so feel free to bring along any of your own. You may want to bring her a pair of shorts and a sports bra. Sometimes that is something easy to wear while they check her.

I'm sure others will think of other things. My husband drops us off at the door and then goes to park. There's a Wendy's right up the street from the hospital that we sometimes drive thru.

Any x-rays that you have, you can bring.

[Celia]

Hi guys. I haven't posted in a while. I am still terrible at this.
I am taking my daughter to Montreal April 10th. I am excited and scared at the same time. I hope everything goes well.
I tried to get her to Shriner's Erie, but they wouldn't brace her yet. I sent her xrays, and they said that they don't brace until 25 degrees (she is at 17 degrees now). But, I know that the Canadian doctors want to brace before then, so that's where I am going.
Does anyone have any tips for us, going to Sainte Justine, and seeing Dr. Rivard or Colliard? I would appreciate any help. Thanks.



Good for you !!!! I wouldn't take the wait and watch approach if it were my own daughter. There is a Ronald McDonald house near Ste Justine, I wonder if clinic appointments are sufficient to stay there :confused: I would call them and find out! There is also an online hotel reservation link which is really handy....the only thing is they charge your credit card in advance in order to get the special rates. The Omni hotel looks *very* nice and it's a five star hotel. If you book in advance you can get a really good deal. :)


http://www.orbitz.com/App/ViewHotelSearch?z=3481&r=8t


*****

[cherylplinder]

I wouldn't wait either. I didn't know about Spinecor when Rachel's curve was 18/17. Her curve progressed 20 degrees in one year, 14 of those in less than 6 months. She didn't get the Spinecor until she was at 38 degrees thoracic.
I will always wonder if she could have been cured if she was addressed at age 7 and 18/17, rather than age 10 at 38/27. As it is, she is corrected to 22/20 in Spinecor and has grown 3 or 4 inches without progression and I am grateful for that.
Best of luck!
Hugs!
Cheryl

[gallathea]

Good luck with your trip. Do remember to bring a check since you can't pay for the Spinecor with a credit card. The other costs (x-rays, visit) can be charged though.

[summerfun4]

My six year old daughter just received her Spinecor brace on Saturday. She's not loving it, :( but she definitely did not want the "hard" brace, so she's being a real trooper. She has a 30 degree right thoracic curve, that went down to 18 in brace. We saw Dr. Pappas in Chicago, who spent a lot of time with us and answered all our questions. My daughter was very comfortable with him.

We are having some areas of rubbing under one arm, and the other shoulder/neck is getting sore as well. We are wearing the bodysuit, trying to keep that pulled under the brace.

Are there any suggestions on making this better, or is it something that just takes time (bands getting softer, her skin adjusting)? I wish we could go back to see him before the one month appointment to make sure I'm doing it right! From the pictures it looks like everything is positioned correctly.

Sorry for rambling... we feel this is so much better than the hard brace would be, but it's still a huge adjustment (toilet, clothing, the brace cutting in, etc.). Hopefully time will make everything better, and we pray it works for us!

Thanks to everyone who shares on this forum. Your experiences have helped us these past 2 months, and if it weren't for you, we never would have known about Spinecor. :)

Linda

[MATJESNIC]

Linda,

congratulations on your decision. I wish you a lot of success with the Spinecor. Nicole also get irritated where the bodysuit doesn't cover. We have tried moleskin on the bands. But she has had this irritation since the beginning. So not sure how long it will take to heal. She also has a little irritation under the arm. I am sure others can give you some advice. Everything takes a while to get used to. But when you consider the alternative I think we can all agree that it is worth it. Hang in there.

[christine2]

Alabama mom
Are you driving? Birth certificates are accepted at the US/Canada border until 2008 then passports are needed. Passports are needed now by air. We stay in Plattsburg NY at the Comfort Inn the night before our Appointments. They have an indoor waterslide and a little resteraunt there too.

Rush hour is a issue depending on the time of appt give yourself some x tra time also parking is time consuming.

The appts are so busy that I try to remember-- get receipts for insurance co. & they will put your daughters x rays on disk (good Idea!!) Please let us know how it goes. We are all anxious to hear!!

Linda

My daughter has been in brace sine 8/06 and just started getting a little skin irritation under the arm pit and on her waist. I make sure we take the brace off for the split 2 hours everyday and let her skin breath. There are days that she will not take it off at all. We changed that. I also strap a pany liner over the irriated spots between the bodysuit and the band. I am sure once my daughter catches on to what a panty liner is she will put an end to that. I also find that the bands get bunched up as they get worn washing the brace seems to straighten them out. I now wash the brace every 5 days instead of 7. I will see if that helps. Congrats on your daughters correction. I don't think you would get that with a hard brace.

[alabama mom]

Thanks for all of the replies, advice, and good wishes....Matjesnic, Celia, Cherylplinder, and Gallathea. I will keep it all in mind. If I have one left, that is.
And good luck to Summerfun4. My daughter will be getting the spinecor soon as well, and I am expecting that we will be going through some of the same things. I hope this works out well for all of our kids.
I will be keeping up with this message board, as I feel that I will be needing alot more help and advice. It is really good to know that there are other people out there that know what you are going through, and that can offer advice through it.

[alabama mom]

Alabama mom
Are you driving? Birth certificates are accepted at the US/Canada border until 2008 then passports are needed. Passports are needed now by air. We stay in Plattsburg NY at the Comfort Inn the night before our Appointments. They have an indoor waterslide and a little resteraunt there too.

Rush hour is a issue depending on the time of appt give yourself some x tra time also parking is time consuming.

The appts are so busy that I try to remember-- get receipts for insurance co. & they will put your daughters x rays on disk (good Idea!!) Please let us know how it goes. We are all anxious to hear!!

Linda

My daughter has been in brace sine 8/06 and just started getting a little skin irritation under the arm pit and on her waist. I make sure we take the brace off for the split 2 hours everyday and let her skin breath. There are days that she will not take it off at all. We changed that. I also strap a pany liner over the irriated spots between the bodysuit and the band. I am sure once my daughter catches on to what a panty liner is she will put an end to that. I also find that the bands get bunched up as they get worn washing the brace seems to straighten them out. I now wash the brace every 5 days instead of 7. I will see if that helps. Congrats on your daughters correction. I don't think you would get that with a hard brace.


Thank you for the reply, and the information. So, are you saying that we will need to have our birth certificates with us at the border if we are driving in? Even the kids? We have three daughters....17 years, 14 years, and 9 years old. I wasn't really expecting that. I guess i will need to get them out. I have never been out of the USA, as you can probably tell.
Thanks again for everything.

[christine2]

Yes you needed stamped, not copies (birth certificates) for everyone in the car. Starting 1/2008 you will need passports. Going thru the border is easy as long as you have proper ID.

[Celia]

Linda,

The elastic bands will soften over time - it shouldn't take too long for that to happen. Initially everything does seem overwhelming in particular the bathroom ritual but in a few days everything will be second nature. Does your daughter have the bodysuit? What we do is hook the pieces to the thigh bands when she goes to the bathroom, that way nothing gets soiled.


*

[jlt1963]

Has anyone on this forum ever gone to Dr. Duetchman in New York? We took our 15 year old daughter to him in January and we have another appt. April 10th. We are anxious to see what has been happening with her curve these last three months. She had a 22 degree curve so we are hoping that it has improved. According to her xray in January she still has quite a bit of growing to do so her curve may worsen anyway. I am just curious about if anyone has gone to Dr. D. before. He seems very available if we ever have problems. We have emailed several times and he always gets right back to us.

[MATJESNIC]

We used to go to Dr. D. You can read my old posts if you want.

[summerfun4]

Thanks to everyone who replied! You are an awesome support group! :D

Yesterday felt very overwhelming. We had the brace on, then had 3 small trips to the washroom which required taking everything off (BM's). The snaps on the crotch straps are very difficult to get back on; my hands are cramping from trying to fasten them. It's taking a toll on my daughter as well, :( because every bathroom visit turns into 10 minutes of re-bracing and adjusting. I'm sure it's just because we're still so new to it.

I don't see how we're going to get it to where she could wear this at school and do the snaps herself, unless these snaps really loosen up over time. At this point we're taking it off for school, since she's in afternoon kindergarten and they're only there for 2.5 hours.

For those of you with young girls, do they go to the washroom by themselves? Can they handle the snaps, velcros, etc? I'm hoping it's just a learning phase!

Sorry--- it's just been an emotional few days! :( I know the TLSO brace would have been worse, and my daughter definitely doesn't want to go that route. This just seems more difficult than we had thought it would be. My daughter slept well in it last night, so that led to a great morning. She actually told me she had a better night, so hopefully we're moving in the right direction!

Thanks again to everyone for listening. :) I know things could be so much worse than they are, but for us it's such a rollercoaster.

Linda

[MATJESNIC]

Linda,

I am really sorry it has been so stressful. I am sure that Celia and Christine can give you tips because they also have little girls. Nicole was in 6th grade when she got hers, so there were no problems with the bathroom. I don't think those snaps should be so difficult to do. You really don't want to be taking the entire brace off a few times a day. That is what is so stressful. Nicole takes the brace off once a day for her break, that is it. I am sure one of the other Moms can send you a private message and discuss in details some ways that you can improve the situation. It shouldn't have to be this hard. Good luck.

[Celia]

Linda,

Remember the P.M. I sent you a few weeks back regarding the crotch straps? It shouldn't be so difficult. :confused: From my own personal experience, it took us one day to adjust. We also don't remove the entire brace everytime she has to go to the bathroom or has a bowel movement.


*

[summerfun4]

(Celia - Yes, I have the PM's, but we get the crotch straps wet if she leaves them on. They are very tight fitting and close to her body, so you can't move them to the side. We also can't get to the bodysuit if we don't undo them. Is ours fitted tighter than yours?)

Also, all the snaps are exceptionally tight. I had my husband try last night, to see if I was just being a weakling :rolleyes: but he struggled too. Dr. Pappas did say they changed from being copper snaps to steel, because they were unsnapping too easily. At this point there is no way she can do them herself. I keep hoping they'll loosen up over time.

She had her first softball practice last night, and she came home very sore from the brace cutting in new places. So again we had to take it off for a few hours to let her skin heal. She's very active but very tiny, with little meat on her to cover bones. All the motion made the brace rub her in new places.

I'm sure it's just going to take time to adjust. She's sleeping in it well, except the shoulder strap #4 wants to keep sliding off. I think they need to make the straps narrower for the smaller sizes. The shoulder straps are almost wider than her shoulder.

We really want this to work :D ; we're going against all recommendations of the "tried and true" and paying pretty much all of it out of pocket, to give her a chance against going with the TLSO, and eventually surgery.

Hopefully this is just a learning curve! Have a great day everyone, and thanks for all your help! You make all the difference.

Linda

[Celia]

Linda,

I'm so sorry to here this! Dr. Coillard was telling me the last time I was in Montreal that the new pelvic base is much larger than the old style. Deirdre has the old style. When we got the new brace we were able to keep the old pelvic base.

*

[christine2]

Linda

are the crotch straps crisscrossed????

Frankly I would suggest seeing Dr. Rivard and Coillard just once to make sure the brace is fit properly. Or come out and ask them if they feel comfortable with your doctors training in the use of the brace. Dr. Rivard is excellent about returning calls and e mails. My daughter is 6 and VERY thin and VERY active she plays ice hockey and does gymnastics and has very little skin issues. She adjusted to the brace is just 2 days. Feel free to PM me.

What was your daughters initial correction in brace?

Christine

[christine2]

I forgot to add. I put a little soap on the snaps to make them easier to unsnap.

[MATJESNIC]

Remember, crotch straps are to be undone when going to the bathroom. Only the thigh bands can't be undone or it will disturb the entire brace.

[christine2]

Melissa

Good point

[gallathea]

Hi Linda:

I really feel for you. We had a lot of similar issues dealing with the bathroom at first, but within a few weeks, we got into a routine. My daughter is six, and we've been managing the school day by having her go to the nurse's office. She's able to help her with snapping the snaps. She has been starting to try snapping herself back up, but it's still too hard for her. I think she'll be able to get the hang of it in the next few months. We've experimented with a lot of different kinds of underwear solutions. Champion makes a good biker-short style athletic bottom. We cut a slit in them so that her thighs are protected, and she can wear them under her body suit.

Hang in there! In a little while this will all become the "new normal."
Caroline

[Celia]

When Deirdre is at home, I help her undo the crotch straps and of course leave the thigh bands on when she goes to the bathroom. When she's at school and has to go to the bathroom (her school doesn't have a nurse) she leaves the crotch straps on and moves both as far to the side and doesn't get them wet. Honestly, I really don't know how else we would manage this because she wouldn't be able to get the crotch straps off/on by herself. Her little fingers are too small and weak to manage it. My daughter would be mortified having a teacher/principal help her go to the bathroom - she is very independent and would feel humiliated in front of her peers.

Having the old style pelvic base makes a lot of this simpler for her since the pelvic base doesn't take up a lot of room. Dr Coillard advised us against getting the new style pelvic base saying that it wouldn't fit Deirdre. So I don't know why Spinecorporation has been revising the design of the brace thereby making it more difficult for small children to wear it.


*

[pat]

Alabama mom
Are you driving? Birth certificates are accepted at the US/Canada border until 2008 then passports are needed.


I read they changed the law and now the kids won't need passports driving into Canada next year. Does anyone know how old? At what age DO they need the passport? Thanks p

[christine2]

Pat
That is interesting. Does anyone know?

[MATJESNIC]

Pat,

I thought that the kids needed the passports next year for driving thru. We just went to the courthouse to get one for Nicole. Now they have her birth certificate and we won't get either back for 13 weeks. So now I have to go and get her another original birth certificate before our next appt.

They just called me from Montreal and gave me some choices in May. We are leaning towards going the last two days of May.

[christine2]

It appears that as a proposal is being made to allow flexability for children under 15yrs. If the proposal is passed children under 15 will be able to cross by land with a birth certificate.There is still no ruling

[desheah]

here's the official notice from homeland security:

DHS Announces Proposed Passport Flexibility for U.S. and Canadian Children at Land and Sea Borders

Release Date: February 22, 2007

For Immediate Release
Office of the Press Secretary
Contact: (202) 282-8010

The Department of Homeland Security (DHS) announced today its intent to propose, as part of the forthcoming Notice of Proposed Rulemaking on the Western Hemisphere Travel Initiative (WHTI), significant flexibility regarding travel documents required for U.S. and Canadian children as part of WHTI requirements for U.S. land and sea border entry in 2008.

As early as January 1, 2008, U.S. citizens traveling between the United States and Canada, Mexico, Central and South America, the Caribbean, and Bermuda by land or sea will be required to present a valid passport or other WHTI compliant documents, as determined by the Department of Homeland Security.

This proposal, which will be subject to public comment as part of the rulemaking process on the WHTI, would allow U.S. and Canadian citizens, ages 15 and younger with parental consent, to cross the border at land and sea ports with a certified copy of their birth certificate as an alternative to a passport or other WHTI compliant identity card. U.S. and Canadian citizen children, ages 16 through 18, traveling with public or private school groups, religious groups, social or cultural organizations or teams associated with youth athletics organizations would also be able to enter, under adult supervision, with a certified copy of their birth certificate.

The initial phase of WHTI travel document requirements went into effect last month, obligating all air travelers, regardless of age, to present a passport for entry to the United States. The DHS proposal announced today does not affect the requirements for air travel.

The Department of State will soon issue final regulations that will allow it to issue to U.S. citizens a lower cost alternative to a passport, the Passport Card. DHS will continue to issue WHTI compliant border crossing documents for frequent border crossers under its trusted traveler programs.

The Intelligence Reform and Terrorism Prevention Act of 2004 mandated the WHTI travel document requirements. A formal proposed rule addressing land and sea travel will be published at a later date, with additional details on requirements for travelers entering the United States through land and sea border crossings.

[MATJESNIC]

Why did my husband and I just take Nicole to get a passport? Now we don't have her birth certificate. I just created more trouble for myself. Oh well, I suppose it is good to have a passport anyway.

[MATJESNIC]

My husband can't go the last 2 days of May. Now we are leaning towards going for Memorial Day. At least nobody will miss work or school. This year my birthday is on Memorial Day.

[christine2]

What ever the final decision on the passports is with homeland security we are still going to get passport incase we need to fly to one of our appointments. It would be good to have just in case.

[Celia]

As you all know, Easter weekend is upon us and guess what?????! :o The kids both got the measles, even though they got their vaccinations for it a while back. We've been battling high fevers for the last 4 days and yesterday the spots appeared! So Easter Sunday will be a very small celebration at our house and the Easter bunny will make a house call and not leave the Easter eggs out in the garden as he normally does.


*

[MATJESNIC]

Celia,

I'm so sorry to hear that. I hope they are feeling better real soon. I don't think I have heard of anyone getting the measles. I have heard a few cases of the chicken pox.

Nicole has 103 fever right now. She has an ear infection, cough, and basic run-of-the-mill sick all over. This is her spring break. So very disappointing.

Again, here's to a speedy recovery for your kids.

[gerbo]

lisanna got a cold and conjunctivitis

its misery all round.......

[MATJESNIC]

Hope Lisanna is feeling well soon. Happy Easter to everyone.
Nicole's best friend is in England with her family for spring break. I am sure they are having a blast.

[zuma]

Just been searching the internet for something else and i came accross this study

Study design : Prospective comparison of the survival rates of two different bracing concepts with respect to curve progression and duration of treatment during pubertal growth spurt in two cohorts of patients followed up prospectively. Objectives : To determine whether the results obtained by the use of a soft brace (SpineCor) is comparable to the results of the Chêneau derived TLSO during pubertal growth spurt. Background data : In recent peer reviewed literature, the SpineCor is described as an effective method of treatment for patients with scoliosis. However, until now, no controlled study has been presented comparing the results obtained with this soft brace to a sample treated with other bracing concepts proven effective. Methods : Twelve patients with Cobb angles between 16–32° during pubertal growth spurt are presented as a case series treated with the SpineCor. The survival rate of this sample is described and compared to a matched group of patients treated with the Chêneau brace of the same age group. All girls treated in both studies were pre-menarchial with the first clinical signs of maturation (Tanner 1–3). Results : During the pubertal growth spurt, most of the patients (11/12) with SpineCor progressed clinicly and radiologicly as well (at least 5°). Progression could be stopped changing SpineCor to the Chêneau brace in most of the samples described (7/10). The avarage Cobb angle at the start of treatment with the SpineCor was 21.3°, after an avarage observation time of 21.5 months, 31°. The control sample, primarily treated with the Chêneau brace ( n ?=?15), showed at average no progression. Cobb angle at the start of treatment was 33.7° and after the observation time of 37 months, 33.9°. Radiological improvements can be reported for some of the cases (3/15) as well as progressions (3/15). At 24 months of treatment time, 73% of the patients with a Chêneau brace and 33% of the patients with the SpineCor where still under treatment with their original bracing concept, at 42 month follow-up time 80% of the patients with Chêneau braces and 8% of the patients with the SpineCor survived with respect to curvature progression. The differences of the proportions statisticly where highly significant. Conclusions : The SpineCor does not change natural history of idiopathic scoliosis during the pubertal growth spurt. The use of the Chêneau brace seems to do so. Oncoming studies with the aim to test the efficiency of braces should be based on samples at immediate risk for progression (only girls with first signs of maturation but pre-menarchial).


I was wondering if anyone else had seen it or had any comments on it

[MATJESNIC]

That is very interesting. I have always wondered why nobody prescibes the Chenau brace here in this country. I shouldn't say nobody because I don't know that for a fact. But I never hear of it. Is it because it is such a difficult brace to wear?

My daughter had her pre-menstrual growth spurt before she ever got the Spinecor. In fact, that is when she got her big curve, during that most critical time. I wonder what it means for someone like her, who is done her big growth spurt and basically done most of her growing. Will the Spinecor hold her curves where they are? That is what remains to be seen. But I wonder if there are any studies on this.

[SpineKIDSAdmin]

I rarely login here, and have never posted but I just HAD to come to see the Jessica prom pics after you mentioned them over on SK. So nice. I love her dress!

And Amanda, Lorena is precious!

It's nice to put names with faces.

I've got a slideshow of Laurel up on my personal blog. As the SpineKIDS admin and someone who represents Long Island Spine, I don't make it public. However, if you want to see it, shoot me an email. :)

Best,
Jules

[MATJESNIC]

Yes, of course. I sent you an e-mail.

[emarismom]

I would really love to get more information on the "success" rates for the
Spinecor. I'd especially like information about long term correction after bracing has stopped. I have pretty much decided that I will definitly be putting my 8 year old in it this summer. (I am waiting until summer only because I think it will be very difficult for her to adjust to it. I don't want her to have accidents at school in the beginning or anything like that.) I teach, so I will be home with her and I hope that will help in the adjustment.

Some things I still plan to do, anything I should add?
1) Can I have her fitted with a chiro here in Miami? This particular chiro is a trainer for the Spinecor Company. He has agreed to contact Dr's Rivard and Colliard regarding my daughter's case (Chiari/Syringomyelia). He is training another chiro here in Miami and has agreed to return in June to do her fitting (He generally works out of Atlanta). the office where they work from is literally two miles from my house! As I have stated in other posts, I am very skeptical about chiros.

2) He has quoted me a price of $4200.00. Is this in the general range? I am not exactly sure what this covers. He has been informed that no spinal adjustment or other nuerological testing will be conducted. Should I ask him to deduct any charges for these that may be included in the price?

3) Before getting the brace, I am going to visit another ped. ortho to get another opinion (appointment April 26). I'm going to propose the Spinecor brace to get his opinion. Should I also put in a call to our current ortho? He is older and very old school, so I feel he will be very oppossed to this.

Any other advice or suggestions you can give me would be greatly appreciated.

[~ScoliosisGurl~]

Melissa-Your puppys are soo cute. Your daughter is very pretty. I like her dress.

[Celia]

Emily's Mom,

Congratulations on your decision!!!! It sounds like someone in high places is looking out for your daughter :D If things can be done locally, then that's wonderful! Did they fit her with the brace? If so, what kind of correction did they get?


*

[Celia]

Dylan and Deirdre have made a complete recovery from the measles! Because they were vaccinated for it, they got a mild form of it. Deirdre didn't get the spots but Dylan did. I know neighbour whose son got the measles a few years ago. I guess in Canada it's more common than in other parts of the world. :D Both my kids got the chicken pox a few years ago too!

The Easter bunny left behind one of his own bunnies yesterday.

http://i41.photobucket.com/albums/e251/sealy25/celia1051d.jpg



*

[emarismom]

Celia,

I haven't put her in it yet. I will be doing it in the summer as the chiro from Atlanta has already returned home. He will be coming back here to do the bracing. I also wanted to wait until summer so that I can be home with her and she gets used to the brace before school starts.

[MATJESNIC]

Celia,

I'm so glad your kids are feeling better. What a great picture. It's so nice to finally put your face to your name. What a lovely family!!

I keep leaving messges for the clinic to tell them which day I want to come. But I keep getting the machine. Does anyone know which days they are there?

[Celia]

Thanks Melissa! You're very sweet! :p I think the doctors in Montreal hold clinic appointments Tuesday, Wednesday and Thursdays.


*

[MATJESNIC]

Thank you, Scoliosis Gurl.

[~ScoliosisGurl~]

Your welcome! Which one of your puppys did you just get, the one in the front or the back?

[MATJESNIC]

The one in the back is Roxy. We just got her. She is 5 months old. Jake is almost 7 years old. I wasn't allowed to have a dog when I was growing up because my Mom said they were too messy and too much work. Of course, she was right. But they sure are a lot of fun. They keep us busy and happy.

[~ScoliosisGurl~]

I knew that one was Roxy! She is so cute, well they both are actually. I want another one real bad.

[mpj]

Zuma,

Was that the study done by a couple named Weismann, or something close to that? It sounds like the one that was discussed earlier in this thread?

Thanks.

mpj

[Celia]

If I remember correctly... *we* determined Dr. Weiss didn't get adequate training in fitting the Spinecor brace and hence his results were flawed :D


***

[mpj]

Celia,

That is the study I was thinking of.

Thanks.

Sarah :D

[MATJESNIC]

Just got off the phone with Montreal. Our appt. is Monday, May 28th at 1:20. It is Memorial Day here so schools are closed and we won't miss work!! We are taking all 3 kids because it is my 45th birthday the day of the appt. and I want to spend the day with my family, even if it is in a hospital!! We will stay in Plattsburgh the night before.

My son is 18 and doesn't have a passport. But I think he is fine until 2008. My older daughter has one because she went on a trip with school.

[Celia]

Great news Melissa!

Did everyone see this? It's the SOSORT meeting which is taking place in Boston May 13 -16 2007. Take a look at the presenters....Dr. Rivard will be there! I wonder if they're planning to do a webcast of the presentations as they do with the SRS meetings ?

http://www.scoliosis.org/sosort2007/SOSORT2007_BOSTON_CONFERENCE_PROGRAM.pdf


http://ent.groundspring.org/EmailNow/pub.php?module=URLTracker&cmd=track&j=131997248&u=1265266


*

[zuma]

If I remember correctly... *we* determined Dr. Weiss didn't get adequate training in fitting the Spinecor brace and hence his results were flawed :D


***

Who is the *we* who determined Dr Weiss didn't get adequate training in fitting spinecor, who trained Dr Weiss to incorrectly fit spinecor and who if anyone has corrected Dr Weiss in fitting the brace.

Has anyone challanged the validity of Dr Weiss's results and has there been other studies that challenge or refute his results.

[Celia]

Who is the *we* who determined Dr Weiss didn't get adequate training in fitting spinecor, who trained Dr Weiss to incorrectly fit spinecor and who if anyone has corrected Dr Weiss in fitting the brace.

The "we" is a general consensus reached by the Spinecor parents on this thread and it's based on a letter sent to Gerbo by none other than Andrew Mills, Head of the Spinecorporation. As for "who" is training Dr. Weiss, I'm afraid I can't answer that question but maybe you can direct your question to Andrew Mills. :cool:


Dear Mr Huisman

Your email has been forwarded on to Dr Rivard however; I can easily answer your questions. More reduction in a rigid brace will not necessarily make any significant difference to the outcome.

Rigid bracing at best will prevent progression from the initial pre-treatment cobb angle, applying more force to give the illusion of more correction on an in brace x-ray may make you feel the treatment is better but that is not necessarily the case at all. There is some debate amongst practioners about the compromise between reduction of major curves, compensatory curves and balance, from my point of view all three should be considered and one not optimumized at the expense of the others.

For 12 - 24 months post rigid brace treatment curves will tend increase until they stabilize out, generally close to where treatment started.

At your daughter’s age the risk of progression is, as you know very high and it is possible you may yet see more progression despite bracing.
SpineCor treatment will not perform miracles but offers the best possibly of achieving a final stable result post treatment with the lowest Cobb angle achievable in any particular case.
In Montreal we now have long-term follow-up, 5 years, post bracing in a large proportion of the original 400 patient study group.
Results of the latest follow-up, not yet, published show exceptional stability post treatment with overall better results than any conventional rigid brace treatment. With more than 5,000 patients treated worldwide now there is no question in our mind concerning the efficacy of SpineCor Treatment. There have of course been some failures, which basically stem from failures in training. Our training program has changed significantly in recent years to prevent future treatment centre failures.

Dr Weiss, incidentally, treated a group of 20 patients with SpineCor braces on which he based his opinions. These treatments were carried without any training or following the SpineCor treatment protocols, not surprisingly the treatments failed.

Nuffield had issues with funding the SpineCor trial as well as great difficulty in recruiting patients with a randomised protocol for treatment vs. non-treatment. Only 5 patients were treated in 18 months against a recruitment protocol of 20 patients in 12 months. The lack of funding, some training issues and any enthusiasm from the team involved resulted in them just giving up.

In general there are huge problems to introduce SpineCor into the UK since orthotists who traditionally provide bracing treatments find SpineCor very challenging, added to this they are often under great pressure to see patients very quickly and simply do not have the time for SpineCor. Furthermore it needs to be understood that is a big learning curve with SpineCor and the skills required are very different to those for rigid bracing. For these reasons it is essential that trainees treat significant numbers of patients to develop their skills. The current SpineCor accreditation program demands a minimum of twenty patient treatments and 6 months experience before individuals are eligible for accreditation. In the UK there are few treatment centres that offer the opportunity to meet the training criteria in a reasonable period of time. A change in the method of treatment delivery is required for SpineCor to ever become mainstream in the UK.
Personally I am working on ways of changing the way SpineCor is made available to the NHS but this is likely to be slow.
The latest SpineCor treatment results have been submitted and accepted by the European Spine Journal but as yet we do not know when publication might be.

I hope this information is useful to you.

Kind regards

Andrew J Mills MBAPO
Managing Director/Orthotist

The SpineCorporation Limited


*

[zuma]

Thanks for the inforamtion Celia

Its hard to know what to believe and who is right and who is wrong when you read some of these studies as there is so much information that often contradicts itself

Thanks again for the explanation

z

[alabama mom]

Hi everyone. We got back from Montreal Thursday night. It was a VERY long drive. So hard on my daughter, with the new brace on.
I really liked Dr Rivard, and Dr Colliard. My daughter especially liked Sue Ann, who taught us how to put on and take off the brace. She also gave us tips on underclothes, and washing it. I think she said that we could put the whole thing in a lingerie bag, and wash it in the machine on gentle/cold cycle. Is this correct? I am a little confused, because the booklet they gave me seems to say that you can only wash the vest portion of it this way. And, that the base should be washed by hand. What do you guys do?
I also have questions about the break times, out of brace. I know that Dr Rivard said we could do either 2 x's 2 hours, or 3 hours then 1 hour. But, my daughter insists that he also said we could do 4 x's 1 hour. Does anyone else do this? Do you guys know if this is ok? Please let me know, if you can.
My daughter is getting more used to the brace every day. I am SO relieved of this. I really hope that we are doing it right. Does anyone else have the problem of the base shifting, and not staying centered? Please let me know if you do.
Thank you so much, for any help you can offer, I am sure I will be needing it more, as time goes on. I would also love to help anyone else out there, if I can.
Thanks again....good luck to all of our kids....and my daughter, Rachel, says Hi!

[MATJESNIC]

The booklet says to wash it by hand, but most of us throw it in a pillowcase and it has been holding up fine. I think the brace does tend to shift a little while they wear it.

I never heard of taking a 3-hour break. We were told we could take one 2-hour break in the morning and one 2-hour break in the evening. Or if there was no time for two breaks, we could just take one 2-hour break whenever.
Nicole almost always takes only one 2-hour break because there is never enough time in between to take two. Now maybe things have changed since we were told that. But it has been working well for us. It is easy to forget to take the break, but I was told it is important that they break every day.

I wish your daughter lots of luck. We are all here for you to answer any Spinecor questions you have.

Our next appt. is on Memorial Day.

[Celia]

We rarely take breaks, only for swimming or bathing. What kind of correction is your daughter getting with the brace? :)


*****

[christine2]

Alabama mom

I wash my daughters brace every 5 days. The whole thing, in a laundry bag, cold, gentle cycle NO FABRIC SOFTENER.

We shoot for 2-2hour breaks but usually only get 1.

We do not experience shifting in the base. I am very careful to make sure the top of the base is 2 fingers below the hip bones and snug. I am worried to much movement will cause chafting.

I think you will find as others have that the Spincor brace is very easily worn and it becomes almost normal quickly.

I am also curious what your daughters initial correction was.

Best wishes!!!!

Christine

[alabama mom]

Hello everyone, and thanks for the replies. My daughter's curves were 23 and 24 before the brace, and then 19 and 19 in the brace. We were hoping for more, especially after reading the corrections alot of your kids got. But I am trying to be optimistic, and I only hope that it keeps it from getting much worse. My daughter is adjusting pretty well so far, and I am so happy for that. Thanks for the tips on washing it, and the answers on the break times. I will say, that Dr. Rivard definately said that we could do (2) 2 hour breaks, or (1) 3 hour break, and the (1) 1 hour break. I think I will call to see if there are any other options. I will let you guys know.
Bye. Nancy

[christine2]

Hi Nancy

19 is a good place to be at. If you can keep it there or lower you are golden!

[MATJESNIC]

Nancy,

That is a nice low number. The best we can hope for is for Nicole to be in her 30's for the rest of her life. Nicole's first ten years of her life were spent with a straight spine. But now her only options are to live the rest of her life with these big curves or to have spinal fusion. Unless of course something better comes along down the road.

I wish your daughter much success with the Spinecor.

[alabama mom]

Thanks for the encouragement Christine and Melissa, and everyone on this board. It is such a blessing to have the support of others, who know what you are going through. Thanks.

Nancy

[Celia]

Nancy,

I think any number under 20 is a good place to be! Hopefully with time there will be more correction and I certainly wouldn't rule that out. *two big thumbs up!!!*


*

[gallathea]

Hi everyone:

We're flying up to Montreal on Wed. for our daughter's 6-month follow-up (wish us luck!) and I was wondering if the Spincecor sets off any security beeps. Has anyone tried going through security with it on?

Thanks!
Caroline

[christine2]

Hi Caroline
I wish for your family to have a great appointment and have the same exhilerating feeling that we had on our trip home from our last appt. !!!!!!


Although we have not flown yet I do have a prescription written by Dr. Rivard indicating that she is wearing a brace made with metal parts. Check your paper work you may also have one. I think it is routine that you get one if you live out of the country.

GOOD LUCK!!!!!

Christine

[christine2]

To everyone;

The type of conversation that is going on right now, on this thread, is how it should be. Not all the negative bickering.

I appoligize for the run-on sentence

[MATJESNIC]

Caroline,

Good luck. Have a great trip. Where do you live, again? I think we should all put the cities or states where we live as a reminder. I keep getting everyone mixed up now that we are becoming such a big Spinecor group.

[Celia]

My husband has a new insurance provider at his work and I was unsure they would pay for the brace given that it's a relatively new thing and guess what?????!!! :D They came through with the money!!!!! YAHOOOOOOO!!! My husband who is very tight with the purse strings can sleep easier at night....


***

[MATJESNIC]

That's great news!!!

[alabama mom]

Caroline,
Good luck to your family on your upcoming appointment. We too, received a prescrition from Dr Rivard explaining that our daughter was wearing the brace, and that it had metal on the pelvic base.
Celia, thanks for the encouragement. We will be hoping and praying that it does go down more. But we will be happy to stay at this point, too.

Nancy

[cherylplinder]

Correction! I noticed on the news last night that there is a big storm in the north.
I don't know if it included Montreal, but I wouldn't be surprised. It was beautiful spring weather this time last year. Rachel and I were there the second week in April in 2006.
Enjoy the snow!

[christine2]

Melissa
I also get confused as to who lives where. I will put that in my signature.
Christine

[MATJESNIC]

Christine,

I don't know why I was thinking you lived in North Carolina. See, it is helping already!

[gallathea]

Thanks for the good thoughts. It's been lousy weather here in Boston. I'm hoping our flight goes smoothly and that we don't miss out appointment! I thought for sure we' be safe flying this late in the year.

Caroline

[cherylplinder]

It was snowing when Rachel and I went in January. We didn't have any problems. Wing deicing(sp?) took an extra 30 minutes, but the flight was smooth. The cab drivers in Montreal are used to the snow. I was nervous, but we made it fine.

[alabama mom]

Hi guys!

Does anyone know where I can get a cheaper alternative to the spinecor body suits? I cannot sew, myself, but if I had to, I could get a seamstress. I would prefer to just buy them, already made.
Thanks for any help you can offer.

Nancy

[MATJESNIC]

Some of the Moms like bodysuit.com located in Connecticut. They have so many colors and materials. Nicole, however didn't like the way they fit her. Spinecor fits her the best, but they are always ripping on the bottom. I went to a seamstress and had her put new snaps on the ripped ones. I also bought Nicole panties and had the seamstress sew snaps into them. She wears a woman's tank tee with those. She has been happy with the panties and the Spinecor.

[christine2]

I have also tried everything and my daughter only likes the spinecor bodysuits. I tried the bodysuits co in Ct but my daughter is so petite that they did not fit her. I think Caroline has had bikeshorts altered for her daughter. She should be back from her appt. in Montreal soon and will probably chime in.

[cherylplinder]

Hmmmmmmmmm.........Altered bike shorts. I might try that for Rachel. She wears the underwear with the boy leg to give her more coverage. It helps with irritation from the straps. I think she would like altered bike shorts. I have offered them(unaltered), but she said she couldn't go to the bathroom.

Caroline,
How did the appt go? I've been looking forward to your report.
How do you alter the bike shorts?
Cheryl

[Celia]

When you describe altered bike shorts, I'm imagining the old style pyjamas with a huge cut out at the bottom that buttons up at the back ? Do you know the ones I mean??? :p

*

[cherylplinder]

Tee hee!!!!!!!!!!!!! O.K., that is a funny thought! I can see Rachel tucking up at the back!!!!!!!!!!!!

[gallathea]

Hi Everyone:

The appointment went fine. Annabel is holding steady at 20 on top. Part of me was hoping for more of an improvement, but I know it's great that she hasn't progressed and that her initial improvement is still there. The lower curve was a bit worse, but Dr. Rivard said he wasn't worried about it. So I'll try not to be.... An interesting note on the trip: this was the first time we had flown (ususally we all drive as a family, but this time I just took Annabel on a plane for a day trip ). At Canadian customs, they asked for a letter from the father. I'd heard this was a possibility, so luckily I had one on me. Anyway, don't forget a letter if only one parent is taking the child (not sure if this happens when you drive).

The underwear I converted for Annabel are these Champion exercise bottoms that go a bit down the thigh. I just cut a slit in the crotch. They work fine for her and protect her legs from the thigh-band chafing.

Caroline

[cherylplinder]

I know what you mean. I keep hoping for additional improvement in Rachel's measurements, too. I know we are blessed to have some correction and be holding there, also.
Has she grown any since being put in the brace? I celebrate every inch. Every inch she grows and her curve holds, is an inch away from surgery, the way I see it!
What has her compensatory curve done? What were her initial measurements and what has been the progression?
Did Dr. Rivard say anything about that other than that he was not worried about it?
I know he told Gerbo that he had never seen a compensatory curve progress to any structural deformity, (I think that is what Gerbo said.)
I watch that carefully everytime and stress about it, too.

[christine2]

Hi Caroline

It sounds like you had a good appointment. I am glad the curve is holding. We all are in the same boat as far as wanting more correction. I hate to say this and sound greedy but at our 2nd appt my daughter went from 7 up to 11 degrees. I new in my head that it was still excellent but in my heart I wanted more. NORMAL!! If you can keep it a 20, or close to that, your daughter can avoid surgery. Did Dr. Coilliard tighten up the straps? She did considerably on my daughters.

[gallathea]

Not much strap tightening this time, and not much growth. Her lower curve was at 20 before the brace, then went down to 9 in brace and is now at 16. Dr. Rivard just said that the upper curve was the problem and that he wasn;t worried about the lower. (The expert ped ortho we went to at Boston Children's didn't even mention the lower curve, so I guess they don;t worry about it at this stage...?) Rivard said it's only a problem when the lower gets bigger than the upper. I guess I'm just going to cross that bridge if (and when) we get to it. It is hard, though, to think that the real test of all this is still years away when she has her major growth spurt.

C

[alabama mom]

Caroline, congratulations on the good appointment! I hope all continues to go well for you.

Thanks for the info on the bodysuits everyone. Does anyone know if the ones on bodysuits.com have the snap-open crotch? This seems to be difficult to find.

Nancy

[christine2]

I am also worried about the major growth spurt. I do not know if Dr. Rivard is going to keep my daughter in brace till then or give her a couple years out. Does anyone know what the protocol is for our little ones is.

[gerbo]

I think it is "unchartered territory", i.e. no protocols exist for this situation and i think both scenarios would be possible, 1) on subsequent reviews all xrays, in and out of brace, show a straight spine; one could consider the scoliosis "cured" and risk of deterioration during growthspurt might be the same as for any non scoliotic person or 2) they might argue that she always be at greater risk due to (unknown) underlying factors and safest course of action is to keep her braced until after growthspurt.

I don't think you need to worry, you have lots of time to discuss your options with them and I am sure that they will inform you exactly of what you can expect and you'll reach mutual agreement on the best way forward at any stage

[MATJESNIC]

Yes,

They have snap-open crotches.

Caroline, that is good news to me. Happy to hear it.

Many years ago, my daughters and I went on a bus trip to Canada when they were in a choir group. We brought a letter from my husband so that they knew I wasn't taking them without his consent.

[Celia]

I am also worried about the major growth spurt. I do not know if Dr. Rivard is going to keep my daughter in brace till then or give her a couple years out. Does anyone know what the protocol is for our little ones is.

I would feel more at ease keeping my daughter in the Spinecor until she finished growing. The adolescent growth spurt and even the years leading up to it can do irreversible damage to the vertebrae and the last thing I need is regrets!! I've come across many parents with regrets and they can't seem to let go of the past and their mistakes. I look at it this way....after she finishes growing she has a lifetime ahead of her. At that point she can live her life scoliosis free and have other worries to occupy her time. ;)



*

[MATJESNIC]

We just got back from her dance competition and her back doesn't look good, Not sure if it has stayed the same or if it is worse. We will know next month.

[gerbo]

this constant, obsessive looking really get on your nerves, doesn't it. It is as if you can hardly enjoy normally the activities of your child, as you cannot help focussing on the back and the scoliosis, rather than on the child and what it is doing.

Pray for you that it was maybe just the way she was standing/ holding herself, the way the light fell.....It remains very stressful, i know, as we all limp from check to check...

Take care

thinking of you

gerbo

(how did she do in the competition?)

[MATJESNIC]

Gerbo,

Thank you for those kind words. Unfortunately when she is wearing those dance costumes and I am so close to her back, helping her on and off with them (and she is bending over at times) I can really see what is going on. When she bends over one side is higher than the other on the top, and one side is higher than the other on the bottom. I believe it has been like this since diagnosis. But not sure if it is worse. Also, one side of her waist goes in while the other side doesn't.

She is on three teams this year. One jazz and two tap. The one tap is with older girls and they got the highest award you can get, a platinum. We were so excited. Her other teams got high gold. She is no longer doing tap or vocal solos because it was too stressful for her. She is a perfectionist. The irony being that her back isn't perfect and there is not much she can do there.

Anyway, thanks for listening. This is her 11th year dancing and her 8th year competing. I just hope her scoliosis will not get in the way of her passion to dance.

[Celia]

Nicole has been dancing for 11 years? Dancing is her life and she obviously excels at it. I hope and pray she never needs surgery. I've seen her picture and she has the most beautiful face and smile.


*

[gerbo]

She is a perfectionist, the irony being that her back isn't perfect and there is not much she can do there.

just like Lisanna, it's like some kind of weird conspiracy.....

[Celia]

Soooooo Gerbo.....enquiring minds want to *know* Are you planning to visit dr. Rivard regarding you know what?????! :cool:



*

[gerbo]

you've lost me :confused: :confused:

[christine2]

Celia

I understand my daughter will most likely be in brace till puberty. I also know how fortunate we are to have found Dr. Rivard and Coillard. I just would love to beable to rub her back at night as she falls asleep.

Another issue to look at is that if we take the brace off for a few years will it be harder for her to be as complient again. I guess time will tell.

[gerbo]

rubbing the back through the spinecor is so much more satisfying then rubbing through a boston..

also, use the time out of brace for some physical "skin to skin" contact, she might enjoy a little massage now and again, or take her swimming, you really can give lovely close contact cuddles in the pool.

[Celia]

Oh :o A lot of us thought you were concerned about the 28 compensatory curve that is developing. Please disregard if this is not an issue.

[gerbo]

aaaahh, I understand now, thanks for asking (you are keeping track of things, great)

we saw mr mills about 3 weeks ago, he spend a long time with Lisanna (near to an hour) adjusting the brace and looking very carefully at things. We don't think we would get much different/ better from dr rivard, also as he replied to me when I asked him, that mr mills is as good as we get anywhere, i.e. had the full trust of dr rivard.

keeping an eye on it for now......

[Celia]

I always thought compensatory curves were smaller than the main curve so that's kind of unusual. The main curve is at 18??? What was Mr. Mills take on this? I'm glad to hear adjustments were made and hopefully you caught things before they got out of hand.


hugs....

*

[gerbo]

main take i think is that this curve is mainly caused/ exacerbated by the effects of the spinecor and "should" not become structural and experience shows that it won't......, (mainly as spinecor allows full range of movement of spine which will prevent this curve becoming structural........)

this is where trust in treating person becomes very important, and as this is as good a treatment as we are ever going to get, i feel i have to trust and leave it in the hands of andrew mills to determine how best to do things. You cannot control everything all the time...... (deep, deep sigh)

[Celia]

My philosophy has always been and will continue to be "do not go gentle into that good night, but rage rage....." :D


*

[MATJESNIC]

Thank you for the kind words about Nicole, Celia. Nicole is 5'5' with long legs and a dancer's body. It is only on close examination of the back that you see the problem. We will not do surgery for cosmetic reasons. Only if we are told that she needs it because of health reasons. This is actually Nicole's 10th year at this Dance school. I made a mistake.

Gerbo, I am sure your guy knows what he is doing. It is true that we just have to trust. We have all chosen the best of the best with regards to Spinecor.

[gerbo]

celia, there is a time to be angry, and there is a time to,..., to what? Relax? Let it be? Accept? Don't know really. Be angry where it counts, accept when that seems the only resonable option available.......

[LATigner]

I have a Spinecor body suit, size Medium that my daughter got with her brace when she was 15. It's been gently worn, she didn't really like the body suit idea. I'd be happy to send it to someone who can use it. Just send me a private message with your name and address and I'll pop it in the mail.

[mariaf]

We just got back from her dance competition and her back doesn't look good, Not sure if it has stayed the same or if it is worse. We will know next month.

Melissa,

I'm not going to tell you not to worry because I know that you will :)

There have been times that I thought David's back looked worse - and times when I thought he looked straighter. My "guesses" were never accurate - In other words, if I thought he looked worse, the next xray actually showed a slight improvement. Go figure.

There was some discussion on another thread - I think Amanda pointed out how sometimes because the spine is flexible (that's a good thing), the curves can go up and down a bit from x-ray to x-ray, etc.

As you say, you will know next month. I am the last person who should be giving you advice on this because I seem to love to torture myself studying David's back, but try not to let it overwhelm your thoughts.

Gerbo said something that really hit home with me - about how we can't even seem to enjoy their activities at times because we are so worried about how their backs look!

Hang in there :)

[Celia]

celia, there is a time to be angry, and there is a time to,..., to what? Relax? Let it be? Accept? Don't know really. Be angry where it counts, accept when that seems the only resonable option available.......



Gerbo,

The time to worry and take action about a 28 degree non-structural curve that is larger than the primary curve is *now* not later when it might be structural. Didn't the same thing happen with Melissa's Nicole? Trust is very important and you trust Mr. Mills and claim he's the "best of the best". Many times you yourself have suggested that parents make the trip to Montreal to ensure a proper fit.... I think you know where I'm going with this. The quote I referred to is not about being angry but rather having the fighting spirit and not losing sight of it.

*

[MATJESNIC]

What happened to Nicole was that her compensating curve kept getting bigger (but not bigger than the original curve) and the Montreal Doctors addressed it with a new strap.

Maria, thank you for the comforting words. You are very right.

[alabama mom]

Hi. Is everyone still there?

My daughter has been in the spinecor for 3 1/2 weeks now. She has gotten use to it, which I am SO thankful for. We will be going back to Montreal mid May. I am so anxious and nervous to have the doctors check her progress, and to make sure that the brace is ok. I always worry that it moves too much. When she takes it off, it is always a couple of inches to the right of where it started. I hope this is not messing anything up.

I just wanted to post, to see if the rest of you guys are still there. I hope so. You have been a huge help, and a great source of information for me.

Bye....Nancy.

[MATJESNIC]

We are still here. Good luck with everything. Too bad you are not going on May 28th, the day we are there. I think some movement is normal. They will let you know at your appt.

[cherylplinder]

Hi Alabama mom!
Good to hear from you. Rachel's straps always move after we put the brace on. It hasn't messed anything up yet. Show Dr. Coillard what it is doing when you go and ask her. I have asked them everything!
Best wishes with your appointment! Can't wait to hear!
We are here anytime you need an ear or a friend!
Cheryl

[Celia]

Ya we're still here :) If you have any questions, ask away!!!! I haven't heard from Gerbo in ages, I hope he's okay.


*

[christine2]

I keep a little notebook and jot down ?'s so I don't forget when I am there. It doesn't always work. I forgot to get a receipt for the insurance co last time (what a PAIN!!)

[alabama mom]

Hi, everyone. It's good to know that you are out there. Thanks for the encouragement.
I am also noticing that my daughter's #3 band (the one that goes around her right shoulder), has gotten very loose. Does this tend to happen? I am SO glad to be going to Montreal soon, to check all of this out. I will let you know how it goes.
Thanks...Nancy.

[Celia]

Actually, I don't think the strap should be loose. I would check with dr. Coillard. We already had this discussion last year sometime but I think the straps should never be loose.



*

[gallathea]

It was okay for our #2 strap to be loose, but since each brace is done differently you should check with Dr. Colliard. She should be able to give you an answer over e-mail.

[gerbo]

I am OK-ish, not as good as I want to be as I have been feeling very unsettled since Celia told me off for lack of initiative. However, this did spur me into overdue action, and following melissa's further advice, I have taken some pictures and send them to montreal today to see whether I'll be getting some useful advice.

gerbo

[Celia]

I am OK-ish, not as good as I want to be as I have been feeling very unsettled since Celia told me off for lack of initiative.
gerbo

This is what friends are for! :D It's called tough love.

[gerbo]

sometimes a tree needs shaking to bear its fruit..... (from gerbo's little purple book of plattitudes, 2nd extensively revised edition)

[MATJESNIC]

Gerbo,

I hope you get the reassurance you are looking for.

[Celia]

Some of you may not know I'm a real gardening enthusiast. Here are a few pictures of little beauties blooming in my garden.


http://i41.photobucket.com/albums/e251/sealy25/celia1063-1.jpg
http://i41.photobucket.com/albums/e251/sealy25/celia1069.jpg


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[MATJESNIC]

Very pretty flowers. I didn't know you were into gardening. I wish I was. It seems like it would be an amazing passion. I have never planted anything.

Christine, if you are out there, Roxy is getting spayed today.

Where did this school year go? We just got back late last night bringing Matthew home from Penn State. Freshman year is over. Now I get to go back to worrrying about driving and staying out late.

[Celia]

I take out all my frustrations on the weeds and I pull them with a vengeance! It's my way of bringing order to chaos. Another side of me enjoys getting my hands dirty and playing in the soil.


*

[christine2]

Melissa
I am here. Roxy will be fine. I remember when I had Dora spayed (my English Setter Pup) I was a nervous reck!

Celia
I am also a gardener. I just planted 3 beautiful Holly bushes. 2 girls 1 boy. My house is only 6 years old, 2nd year with my pool landscape. So all my gardens are just coming together. It should be a great season for me. That is if I can ever get the grubs and japanese beatles under control!!

Everyone
My poor daughter is always hot even before brace. I tried to get her to try just wearing the brace no body suit. She started to cry and said "this is just weird" I need to figure out something before the heat hits.

Christine

[summerfun4]

My daughter had a meltdown putting the brace back on after school yesterday, due to the heat. We're in the 80's this week and very warm and humid. We tried with nothing under it, but she was itchy. So I tried a tank undershirt and panties with snaps; better but rubs more by the arms.

She also doesn't want the brace to show, so she doesn't want tank tops. I wish the developers would narrow the straps for the smaller children; there is no way they need to be the same width for an xxs size that they do for the xl. She'll melt if she doesn't change her mind. We've only had it a month, but I'm waiting for the days to become "normal". Our doctor said most younger patients adjust really easily, but our 6 year old is more like an 10 year old, and has all the social issues with it, along with why me, I don't like my brace, why does my back have to have a curve, etc.

I know the TLSO would be hotter and more form fitting, and she understands if she doesn't wear the spinecor we have to go to that. It doesn't make the heat any more manageable, though, and my heart breaks making her wear it. :(

Thanks everyone for listening... I know we're all in the same boat.

Linda

[gerbo]

http://www.gilbert-mellish.co.uk/products/Distribution/d_p/d_p17.shtml

these coolmax vests might be of some use, this is from a uk website, but I am quite sure they are actually produced in the states. I am sure you daughter alreadu has one of those handheld fans, they should be quite helpful as well

[alabama mom]

Hello Gerbo. I was just checking out the link you posted. Have you used these? If so, how are they, and how much?
Linda, I am also worried about this heat issue. We have only had the spinecor for 1 month exactly, today, as well. My daughter has always sweated easily, and complains when it's hot, too.
I expect to have trouble with this, since we live in the deep south...Alabama. I expect that she will not be going outside as much. I hope it will be ok.
I am sure that all of the other families have had to deal with this, and that we will too, Linda.
Nancy.

[christine2]

Hi everyone

I just spoke to Rita at bodysuits.com and she is willing to try to design a bodysuit for us. I am e mailing her a picture along with a wish list. It would be great if you guys want to chime in I think we all preety much have the same needs. Just put attention Rita from spinecor group.
Christine

[emarismom]

Hi all, I got a call today from Dr. Ouellette in Georgia. He is planning to come to Miami in June (around the 8th-9th), so I am still waiting to get her braced. Now that I've made the decision, I just want it NOW! The good thing is that we are going on vacation from May 30-June 7 (Costa Rica), so Emily will have one more vacation free of a brace. I'm sure she will be happy.

I hope that you all can come up with a good solution for beating the heat in a brace, as I am very worried about the hot and very humid summers here.
I just pray we can get throught the summer with no storms, as we always lose power. What a nightmare that would be.

Gerbo, those body sleeves you posted the link for look interesting. Have you found a place in the states that sells them?

[pat]

Gerbo, those body sleeves you posted the link for look interesting. Have you found a place in the states that sells them?
Hello, Coolmax is a pretty common brand, you usually can find them at sporting goods store, like Sports Authority, or Dick's; I think someone told me even Target had them. p

[Allegra]

A little late, but Celia, your flowers are amazing,
very pretty. I love the colors !!

[gerbo]

Gerbo, those body sleeves you posted the link for look interesting. Have you found a place in the states that sells them?

no, i live in the UK, hopefully Pat's reply will help you. otherwise, just do an internetsearch....

[emarismom]

I have seen the Under Armor brand in Sports Authority. However, I haven't seen them in a tank top, just in short sleeves and long sleeves. Maybe I'll check this weekend, another thing to add to the "weekend list". I'm a teacher and we have 12 more days to work!!! I can't wait, this upcoming summer is MUCH needed.

[gallathea]

Hey everyone:

I've been worried about the heat issue too (my daughter was already looking flushed yesterday and we haven't even hit the real hot season around here).

I hunted around and found the CoolMax tank tops on the L.L. Bean web site. They only have women's sizes, but I went ahead and ordered some smalls and am hoping they'll work (they'll have extra smalls arriving June 25th). They're 19$ and come in happy colors. I'll let you know if they work out for us.

Caroline

[Celia]

To beat the summer heat, we have A/C and cotton clothing is a must! During most of July we head up North and spend our time by a lake.

Allegra/Christine,

Thanks for the nice comments! Christine, have you tried beneficial nematodes for the grubs and Japanese beetles? Here's a link:

http://www.marchbiological.com/L/beneficial_nematodes.html

I'm a real plant collector! I'm in the process of getting two lilacs for the garden both called Beauty of Moscow and here is a picture I found on the internet: They're soooooo beautiful, huh ??? I want them now!!!!!!

http://www.extension.iastate.edu/NR/rdonlyres/4F460C3E-720B-464C-80C4-186DEB1E93FD/14636/Beauty_of_Moscow.jpg


*

[cherylplinder]

I love gardening too! As soon as everyone I am related to doesn't have a health problem, I will do more. It is something I love. I want to paint, too.

William is 13 and his diabetes is more difficult to control now than it has ever been. Part of that is the 13 year old surge for independence, but inability to manage on his own, and stubborn desire to not be controlled by a mom. Pubery plays havoc with blood glucose, too. As a result, his HA1C was 9.5 in January, and 8.5 in April.(He hasn't been out of the 7's since the first year of his diagnosis until now. That is 9 years.)


My mom has had a precipitous decline from frontal lobe dementia in the past 2 years. She has always been a vivacious active woman. She is only 65. She now requires constant supervision and care. She is like a toddler with her reasoning abilities. Frontal lobe dementia attacks the cognitive functions before memory. She was diagnosed with endometrial cancer today. She is already weak from her dementia, because it has affected her physically, also. She has to have a hysterectomy. If it has metasticized(sp?) I don't know if Dad will choose chemo for her or not. I hope she can recover from the surgery. She has always been the best mom ever. I am not ready to give her up.
My dad has really suffered. He had just retired. He is young also. He is a former president and CEO of a regional bank. He now works as a consultant for the same bank. He planned to travel with mom in his retirement years. He is now a caregiver to the love of his life. That is a really hard adjustment.
He is heartbroken.
I spent half of last year at their home helping them. I am a homeschooling mom. Nobody has done much schoolwork! Ugh!!!!!!!!!!!!!!!!!
That stupid house that I have been trying to move into since 2005, flooded in December, 2 weeks before our move date. It flooded half the upstairs and half the downstairs.
I was depressed in March and April. That was the first time I had to think about the whole crazy situation. Also the first time I let it get to me. Not helpful!
I am fine now. I have always been a count your blessings kind of girl (The alternative is not helpful, and God is always good).
I hope I get to move this summer.

You all have made Rachel's scoliosis bearable in the midst of other burdens. I am more than grateful for you, and I love you! I don't know what I would have done without you!
Hugs!
Cheryl

[cherylplinder]

This is Celia's poem from last year. It bears repeating.


The young mother set her foot on the path of life.
"Is this the long way?" she asked.

And the guide said: "Yes, and the way is hard. And
you will be old before you reach the end of it. But
the end will be better than the beginning."

But the young mother was happy, and she would not
believe that anything could be better than these
years. So she played with her children, and gathered
flowers for them along the way, and bathed them in the
clear streams; and the sun shone on them, and the
young Mother cried, "Nothing will ever be lovelier
than this."

Then the night came, and the storm, and the path was
dark, and the children shook with fear and cold, and
the mother drew them close and covered them with her
mantle, and the children said, "Mother, we are not
afraid, for you are near, and no harm can come."

And the morning came, and there was a hill ahead, and
the children climbed and grew weary, and the mother
was weary. But at all times she said to the
children," A little patience and we are there." So the
children climbed, and when they reached the top they
said, "Mother, we would not have done it without you."

And the mother, when she lay down at night looked up
at the stars and said, "This is a better day than the
last, for my children have learned fortitude in the
face of hardness. Yesterday I gave them courage.
Today, I have given them strength."

And the next day came strange clouds which darkened
the earth, clouds of war and hate and evil, and the
children groped and stumbled, and the mother said:
"Look up. Lift your eyes to the light." And the
children looked and saw above the clouds an
everlasting glory, and it guided them beyond the
darkness. And that night the Mother said, "This is
the best day of all, for I have shown my children
God."

And the days went on, and the weeks and the months and
the years, and the mother grew old and she was little
and bent. But her children were tall and strong, and
walked with courage. And when the way was rough,
they lifted her, for she was as light as a feather;
and at last they came to a hill, and beyond they could see a shining
road and golden gates flung wide.

And mother said: "I have reached the end of my
journey. And now I know the end is better than the
beginning, for my children can walk alone, and their
children after them."

And the children said, "You will always walk with us,
Mother, even when you have gone through the gates."
And they stood and watched her as she went on alone,
and the gates closed after her. And they said: "We
cannot see her, but she is with us still. A Mother
like ours is more than a
memory. She is a living presence."

Your Mother is always with you. She's the whisper of
the leaves as you walk down the street; she's the
smell of bleach in your freshly laundered socks; she's
the cool hand on your brow when you're not well. Your
Mother lives inside your laughter. And she's
crystallized in every teardrop.

She's the place you came from, your first home; and
she's the map you follow with every step you take.
She's your first love and your first heartbreak, and
nothing on earth can separate you... Not time, not
space...not even death

Happy Mother's Day! You are all great mom's and dad's(that is for you Gerbo!)

[cherylplinder]

Can you see scoliosis accomplishing some of these things in our children? That thought blessed me.

[MATJESNIC]

Cheryl,

I am really sorry for all that you are going through right now. Please know how much I care.

Thank you for that poem which once again brought me to tears.

Happy Mother's Day to all you wonderful Moms out there. We feel our kids' pain as our own. We would gladly change places with them in a heartbeat.

[Snoopy]

Cheryl,

I'm sorry to hear about your situation. My mom was diagnosed with ovarian cancer in February at the age of 63. She too had surgery. She is currently undergoing chemotherapy which she will have to take for a year. There are some days where I feel like I'm the mom and she is the child. But like you, I'm not ready to give her up or give up on her.

I've always appreciated my mom and I've always tried to tell her that and show her that, but when something like this hits your mom, it really, really makes you appreciate her. I feel so blessed to have my mom to celebrate Mother's Day with tomorrow. There are so many people on this forum who aren't so lucky.

My mom is my hero. She has lost both of her parents, two of her five brothers and one of her sons. She has had more surgeries than I can remember, yet she has always been there for me and our entire family. She delayed an important appointment with the cardiologist (against my wishes) to be with me while Jamie recvoered from her spinal fusion. She is fighting for her life, yet she still attends all of the grandchildren's activities. I could go on forever about my mom.

So, Cheryl, please know that you aren't alone in this struggle with your mom or your daughter's Scoliosis. With good friends like those on this forum, family support and of course God's love, we can survive anything!

HAPPY MOTHER'S DAY!!

Mary Lou

[arairdon]

Christine2,

I would like to also send a message to Rita at bodysuits.com. I tried www.bodysuits.com, but didn't seem to get to the right place.

My daughter sometimes wears a biketard under her brace to protect her legs. This only works when we are home because she has to take the brace off to go to the bathroom.

Anyway let me know anything you figure out.

Thanks,
Ann Rairdon

[christine2]

Hi Ann

It would be great if we could get a design with bike shorts. It is www.bodysuit.com (not suits) Rita can be reached at comments@bodysuit.com

Christine

[Celia]

Cheryl,

We all love you! I'm so sorry to hear about your mom and I hope everything turns out well for her. The teenage years are a real challenge and doubly so when you have a child with medical needs. You will get through this... one day at a time. The older we get the more challenges we face and hopefully we have the wisdom and patience to get through it intact. Laughter is a great coping mechanism for me. I hope we're still smiling 50 years from now :) Thanks for the Mother's Day poem, it reminds me of the struggles and accomplishments we moms face in life.

*

[cherylplinder]

Celia, Mary Lou, and Melissa,
Thanks so much.
You're right, the older we get, the more wisdom and patience we have to face trials. I feel blessed in the midst of trials. I have many blessings.
This group is one of them.
Happy Mother's Day!
Cheryl

[Celia]

Guess what I got for Mother's day??? :) Among other things... the two lilacs I mentioned earlier. I spent Sunday afternoon planting in the garden with the kids.


*

[christine2]

Celia
No I have not tried nematodes. I did try milky spore 3 years ago what a pain to apply, I saw a small difference but my yard is 2200 square feet and only applied to the problem spots. This looks much easier to apply. Can I put them down anytime?

[christine2]

Hi Celia

I just did some more research on beneficial nematodes and if it works I will be forever gratefull. I have done grubex (yuck chemicals!!) and milky spore then grubex again and again (yuck!!)

I always make the analogy ; Bill Murray in Catty Shack. Instead of killing the gopher it is me kill the beatles!!!
Thanks
Christine

[Celia]

Christine,

It comes with instructions and we apply it in early Spring always in the morning because the little critters could fry in the hot afternoon sun. It's worked really well for us! I hope it works for you too!


*

[christine2]

Hi everyone

Rita from bodysuit.com e mailed me today. A new child size bodysuit will be up on her website tomarrow 5/18. It is cotton with a jewel neck and cap sleeves (sounds good) Item # BT1330. She may keep working on designs to fit our needs. I mentioned our desire for a bodysuit w/ bike shorts and a cooler material. www.bodysuit.com


Christine

[pat]

Rita's great at bodysuit's, isn't she? We've ordered a dozen bodysuits from her over the last year and a half, with great success. I'm glad to hear she'll have them in the smaller sizes. We've gone from XS, S, and now to Medium, lots of growth for my daughter, but all is well with her spine so far!!! p

[christine2]

Hi Pat

Any word yet about how the meeting went in Boston? (I know it just ended) I am VERY curious if CCMC is considering Spinecor. Dr Thomson said he was going to the meeting.

Please call me if you hear anything.

It is amazing how fast our daughters are growing, isn't it!!!
I am glad all is well.


Talk to you soon
Chris

[cherylplinder]

A biker short body suit would be great!

[MATJESNIC]

Yes, that would help all of the horrible bruises on the inner thighs.

[Celia]

I'll definitely be ordering some bodysuits from this place!! Does anyone know what percentage cotton the following cotton/Lycra bodysuit is??? Do these bodysuits come with snaps or Velcro? Are we given a choice?

http://www.bodysuit.com/noname5.html


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[christine2]

Celia
re: bodysuits

I don't now for the size your looking at (they are very helpful via email or phone) I am sure if you e mail Rita with a wish list she will try to accomidate you. I would be willing to bet if we showed interest and let her see that there is a market for bodysuits for kids in braces should could design just about anything.

Christine

[Allegra]

umm im not sure if this is a random or stupid (hopefully not) question, but are you supposed to wear underwear under the bodysuit?
or is it just bodysuit, spinecor, clothing..??

[christine2]

my daughter only wears the bodysuit, no underwear.

[MATJESNIC]

No underwear. It would defeat the whole purpose of snapped body suits if you did otherwise. One hand needs to be free to hold onto the crotch snaps. That is why we go through so many. They are washed daily and getting worn out. However, the panties we had made for her along with the sleeveless tees have also been working out well. She is happy with those, as well.

[christine2]

Rita from bodysuit.com e mailed me asking how long should the shorts be in the bodysuit design.

[arairdon]

Christine2,

I don't think the shorts need to be very long. Do you think 3 or 4 inches? I know it's mostly the crotch bands that are causing the problems with my daughter. One of them is really cutting into her skin. I did send an email to Rita the other day letting her know my interest as well. Thanks for finding her.

Ann Rairdon

[christine2]

Hi Ann

I agree the shorts do not need to be that long. You think 3-4" would work? I will see what other responses we get then bring them to Rita.

Actually Pat turned me on to Rita, She has been getting bodysuits from her for a while. They just started supplying for smaller kids which is GREAT!!

Christine

[Celia]

Christine,

I agree with Ann, 3 to 4 inches should be fine! I'm planning to order 6 body suits from Rita today. :D

Ann,

Is your little girl cast free now and in the spinecor?

[Celia]

Hey gang,


I just found these abstracts on pubmed.... I'm near the medical library so I'll take a look at the articles. In the abstract on TLSO's vs the Providence brace, there is no mention of compliance or what level curves brace treatment started at, however it appears the earlier brace treatment starts the better the results. :rolleyes:


J Pediatr Orthop. 2007 Jun;27(4):375-379.

Effectiveness of the SpineCor Brace Based on the New Standardized Criteria Proposed by the Scoliosis Research Society for Adolescent Idiopathic Scoliosis.Coillard C, Vachon V, Circo AB, Beausejour M, Rivard CH.
From the *Research Center, Sainte-Justine Hospital, Montreal, Quebec, Canada, and daggerSpineCorporation Limited.

The purpose of this prospective observational study was to evaluate the effectiveness of the Dynamic SpineCor brace for adolescent idiopathic scoliosis in accordance with the standardized criteria proposed by the Scoliosis Research Society Committee on Bracing and Nonoperative Management. They proposed these guidelines to make the comparison among studies more valid and reliable. From 1993 to 2006, 493 patients were treated using the SpineCor brace. Two hundred forty-nine patients met the criteria for inclusion, and 79 patients were still actively being treated. Overall, 170 patients have a definitive outcome. All girls were premenarchal or less than 1 year postmenarchal. Assessment of brace effectiveness included (1) percentage of patients who have 5 degrees or less curve progression, and percentage of patients who have 6 degrees or more progression; (2) percentage of patients who have been recommended/undergone surgery before skeletal maturity; (3) percentage of patients with curves exceeding 45 degrees at maturity (end of treatment); and (4) Two-year follow-up beyond maturity to determine the percentage of patients who subsequently underwent surgery. Successful treatment (correction, >5 degrees, or stabilization, +/-5 degrees) was achieved in 101 (59.4%) of the 170 patients from the time of the fitting of the SpineCor brace to the point in which it was discontinued. Thirty-nine immature patients (22.9%) required surgical fusion while receiving treatment. Two (1.2%) of 170 patients had curves exceeding 45 degrees at maturity. One mature patient (2.1%) required surgery within 2 years of follow-up beyond skeletal maturity. The conclusion drawn from these findings is that the SpineCor brace is effective for the treatment of adolescent idiopathic scoliosis. Moreover, positive outcomes are maintained after 2 years because 45 (95.7%) of 47 patients stabilized or corrected their end of bracing Cobb angle up to 2 years after bracing. Therapeutic study-investigating the results of treatment: level II.

PMID: 17513955 [PubMed - as supplied by publisher]


1: J Pediatr Orthop. 2007 Jun;27(4):369-374.

A Comparison of the Thoracolumbosacral Orthoses and Providence Orthosis in the Treatment of Adolescent Idiopathic Scoliosis: Results Using the New SRS Inclusion and Assessment Criteria for Bracing Studies.Janicki JA, Poe-Kochert C, Armstrong DG, Thompson GH.

From the *Division of Pediatric Orthopaedics, Rainbow Babies and Children's Hospital, University Hospitals of Cleveland, Case Western Reserve University, Cleveland, OH, and daggerDivision of Pediatric Orthopaedic Surgery, Hospital for Sick Children, Toronto, Ontario Canada.

This is a retrospective cohort study comparing the effectiveness of the thoracolumbosacral orthosis (TLSO) and the Providence orthosis in the treatment of adolescent idiopathic scoliosis (AIS) using the new Scoliosis Research Society (SRS) Committee on Bracing and Nonoperative Management inclusion and assessment criteria for bracing studies. These new criteria will make future studies comparable and more valid and accurate. METHODS: We have used a custom TLSO (duration, 22 hours/day) and the Providence orthosis (duration, 8-10 hours/night) to control progressive AIS curves. Only 83 of 160 patients met the new SRS inclusion criteria: age of 10 years and older at initiation of bracing; initial curve of 25 to 40 degrees; Risser sign 0 to 2; female; premenarcheal or less than 1 year past menarche; and no previous treatment. There were 48 patients in the TLSO group and 35 in the Providence group. The new SRS assessment criteria of effectiveness included the percentage of patients who had 5 degrees or less and 6 degrees or more of curve progression at maturity, the percentage of patients whose curve progressed beyond 45 degrees, the percentage of patients who had surgery recommended or undertaken, and a minimum of 2 years of follow-up beyond maturity in those patients who were thought to have been successfully treated. All patients are evaluated regardless of compliance (intent to treat). RESULTS: There were no significant differences in age at brace initiation, initial primary curve magnitude, sex, or initial Risser sign between the 2 groups. In the TLSO group, only 7 patients (15%) did not progress (</=5 degrees), whereas 41 patients (85%) progressed by 6 degrees or more, including the 30 patients whose curves exceeded 45 degrees. Thirty-eight patients (79%) required surgery. In the Providence group, 11 patients (31%) did not progress, whereas 24 patients (69%) progressed by 6 degrees or more, including 15 patients whose curves exceeded 45 degrees. Twenty-one patients (60%) required surgery. However, when the initial curve at initiation of bracing was 25 to 35 degrees, the results improved. Five (15%) of 34 patients in the TLSO group and 10 (42%) of 24 patients in the Providence group did not progress, whereas 29 patients (85%) and 14 patients (58%), respectively, progressed by 6 degrees or more, and 26 patients (76%) and 11 patients (46%), respectively, required surgery. CONCLUSIONS: Using the new SRS bracing criteria, the Providence orthosis was more effective for avoiding surgery and preventing curve progression when the primary initial curves at bracing was 35 degrees or less. However, the overall success of orthotic management for AIS in both groups was inferior to previous studies. Our results raise the question of the effectiveness of orthotic management in AIS and support the need for a multicenter, randomized study using these new criteria.

PMID: 17513954 [PubMed - as supplied by publisher]

[MATJESNIC]

Do we know how big their curves were?

[Celia]

Melissa,

I went to the library and they don't have the journals in yet! I'll have to check back in a couple of weeks.


*

[MATJESNIC]

Spinecor friends and all other friends who are interested, please read my post on the Adolescent Idiopathis Scoliosis Thread.

[gallathea]

Hi Everyone:

I wanted to share with you some things I experienced at the SOSORT conference that was here in Boston last week. First of all, Dr. Rivard is the most caring doctor I've ever met. (I know this won't come as a surpirse to anyone of you who've met him.) When we had our April follow-up appt. with him I mentioned that I wanted to go to the bracing day of the conference but that it was too expensive for me to go. He called me at home the weekend of the conference to tell me he would get me in. He met me and really took me around, answered all my questions, helped me understand the pretty technical stuff that the presenters were talking about. Dr. Weiss was there talking about the Cheneau Light brace (he's the one who published the anti-Spinecor study). He and Rivard got into it a bit as you can imagine.

One of the most interesting things I learned from Rivard was that he has an established professional relationship with a chiropractor in Montreal (I met her at the conference) and that there are chiros in America who are specifically trained in doing adjustments for Spinecor kids. He doesn't think that chiro can correct the spine without a brace, but I thought it was interesting that he does see the value in the treatment if the practitioner understands how the brace works.

Overall, I left the conference glad that my daughter's in the Spinecor, even though the gold standard for al of these bracing studies is still the TLSO Boston brace and very few of them mention Spinecor. We are definitely pioneers here. One of Rivard and Colliard's colleagues presented a study on overweight kids and the Spinecor vs. TLSO which confirmed that while overweight kids tend to do worse with the TLSO, there is no difference in their results with the Spinecor. This interested me since my daughter, while not grossly overweight, is at the upper end of the weight spectrum for her age.

Anyway, those are my thoughts for what they're worth. Rivard really is a one-of-a-kind doc!

Caroline

[gerbo]

....remarkable

[cherylplinder]

Heartwarming.....

[Celia]

He's such a sweet doctor! I always have this overwhelming desire to give him a great big hug before I leave our clinic appointments and then I convince myself not to because it's very unprofessional. :p

[pat]

Hello! Just got word . . . my daughter's still holding at a "6" in brace, we were a little worried she's had a lot of growth since her appointment in November, but all is well! Anxious to hear how your appointment goes Melissa. pat

[christine2]

WOW Pat that is fabulous!! I am so happy for you!! You must be ready to party.

Caroline
Thank you for the tidbits of info about the conference. It reinforces my feelings about Dr. Rivard. He is a great doctor and a very caring man. He really wants whats best for our kids.


Well Friday is my twins birthday. They turn 7 I don't know where the time has gone. I have been very worried about how fast my daughter is growing she is about 1 1/2 inches taller than her brother (I am 5'10") but I feel a bit better since Pat's daughter has held at 6 with alot of growth.

Friday is also our wedding anniversary so it will be a fun filled weekend. Everyone have a nice holiday.

[cherylplinder]

Pat! That's great news! Rachel goes next month. I am always anxious.
Hugs!
Cheryl

[cherylplinder]

Christine,

I know there is risk, but with the Spinecor, growth also means the possibility of correction. Have you asked if there is a chance for complete resolution with her young age and excellent response? I wouldn't be surprised. I am excited for you. (I understand the anxiousness, too! I don't mean this as anything but encouragement! I am anxious every appt!)

Hugs,

Cheryl

[gerbo]

I sent a email query to dr rivard re lisanna's secondary curve. I initially had an email back from him saying he wanted to talk to me over phone, but subsequently there was this email from Andrew Mills. My reply follows.

---- Original message ----

> Dear Gerbo
>
>
>
> Dr Coillard called me yesterday to discuss Lisanna's
> case she and Dr Rivard are in agreement that the
> correction of the primary T11 curve is excellent and
> that the secondary upper thoracic curve should not
> pose any significant problem. With out x-rays it is
> difficult for them to offer much further advice
> however they suggest that we could probably loosen
> the right shoulder band further with out any
> detrimental effect on the T11 curve which might then
> lessen the undesired thoracic compensatory curve.
>
>
>
> We can only really make such a change with x-ray
> control to be sure it is positive in both respects.
> I believe you are due to bring Lisanna to see myself
> and Mr Cole in July which would be an appropriate
> time to make the change and check it radiologically.
> I you wish to see me before or travel to Montreal to
> see Dr Rivard that is perfectly ok but it is
> unlikely to make a major difference. Please feel
> free to call me to discuss if you wish, please note
> I shall be on vacation from today until the 3rd of
> June.


Dear Andrew

This was the reply we were expecting and hoping for. We have no great urge at all to travel to Canada and are happy to wait till July when we see you again.

Hope you understand that although we have been extremely happy with your management of and approach to Lisanna and her scoliosis, occasionally this little bit of doubt creeps in; "are we doing the right thing?" and "should anything be done differently?". I am very happy that you have been able to discuss lisanna directly with dr coillard as in Sheffield you haven't got much in the way of orthopaedic back-up and support, as mr Cole (understandably) appears very much to be sitting on the fence

hope you are having/had a good holiday

with best wishes

gerbo

[Celia]

Pat,

Great news!!!! :D


Melissa,

Happy Birthday!!!!!


Gerbo,

What do you mean Mr. Cole is sitting on the fence???? :confused:

[gerbo]

sitting on the fence is a british expression indicating that the person this refers to doesn't appear to commit himself either side of the issue and waits and sees before forming an opinion.

In this case, mr cole is the orthopaedic opinion lisanna falls under, and who does see lisanna every 6 months (as well as mr mills (orthotist) every 3 months) and who really doesn't commit himself either way wether he thinks bracing in general or spinecor in particular works. He isn't particularly aware of the spinecor protocols and leaves anything to do with spinecor to mr mills, who in this respect is really "on his own"

[MATJESNIC]

Gerbo,

I am glad you don't have to travel to Montreal. That is good news. We also say that someone is "on the fence" about issues.

Pat,

So happy that your daughter continues to do well with Spinecor.

Christine,

Happy Anniversary and Happy Birthday to your twins.

Nicole's upper curve went from a 29 to a 38 in a year. So I am always concerned about that. Especially since it was only a compensating curve.
Those upper curves are the most difficult to control.

Enjoy your weekend, everyone. I will get back to you either late Monday night or early Tuesday morning.

[Celia]

I understand the expression "sitting on the fence" :eek: :D I was wondering why your ortho is not getting involved, is it not his responsibility to take a more active approach ????

Christine,

Happy Birthday to the twins and Happy Anniversary! *think Fred Flinstone song*

[gerbo]

Celia and Melissa, glad to hear you americans and canadians haven't entirely lost your british roots, despites years of insulation from the motherland. ;)

Don't know why i am saying this, :mad: I am dutch myself and hate anything to do with cultural (and linguistic) imperialism and for that matter anykind of imperialism! Power to the people!!, that's me...... :cool: :cool:

mr cole and not getting involved.....and for that matter, any orthopaedic surgeon and not wanting to be involved (unless it involves sharpening of knives and heroic surgery whilst sweating forehead being wiped by pretty nurse)....don't start me on that one.

Seem to be lots of birthdays going around at the moment; happy birth day to you all; "and may all of your (reasonable) birthday wishes come true...."

gerbo

[gerbo]

sure you all know this already, but this www.pandora.com is a most remarkable music website (sorry, not accesible to canadians)

[Celia]

mr cole and not getting involved.....and for that matter, any orthopaedic surgeon and not wanting to be involved (unless it involves sharpening of knives and heroic surgery whilst sweating forehead being wiped by pretty nurse)....don't start me on that one.gerbo

I guess it would happen with the forehead sweating and all....I would hope the nurse is pretty LOL!!! :D :D :D

[MATJESNIC]

Celia,

Not sure if anyone else will get the Flintstone reference. But that was my favorite cartoon as a kid and we still sing that to people when they have their anniversary. That show isn't on anymore, not even in re-runs.

[alabama mom]

Hi guys. We recently got back from Montreal. We were there the same day that Drs. Rivard and Colliard returned from Boston. My daughter's curve went down from 19 to 18, in this first month in the spinecor. The other 19 degree curve stayed the same. We were happy with this, and we hope to continue to see more of the same.
We also LOVE Dr. Rivard. He is SO kind, and interested, and really THERE with you at the appointments.
Good luck to all of you, with your appointments. I'll be checking back in soon. Nancy.

[Celia]

Nancy,

That's great news !!!! Drs Rivard and Coillard are a blessing and a refuge in these shark infested waters and I thank God each and every day for doctors like them!

[MATJESNIC]

Nicole needs surgery. Her curve is out of control. It went up 14 degrees in the brace. We are still in shock. It had been stable for almost 2 years. Nicole bawled when she found out. Dr. Rivard was very sympathetic and I think very disappointed as well. He gave Nicole his private e-mail to keep in touch. He didn't even want me to pay for today's visit.

I can't believe it is all over. It was a really lousy weekend. We sat at the border for over 2 hours coming home because it was so backed up. I am so sad right now. I was so full of hope. Her risser is still a 0. Now we know we are dealing with a very aggressive curve that can only be stopped with surgery. I hope this is a dream.

Thank you friends, for your love and support. I am calling Shriner's in Phila tomorrow morning to get her in for a set of x-rays and to start the ball rolling for surgery as soon as possible.

I have no regrets. I would have done the same thing in a heartbeat. At least her back is strong. I am just so sad and so disappointed. But I need to be strong for Nicole.

[Allegra]

Oh Melissa, I'm so sorry!
As of now, are her curves 52/54?
That's very disappointing news, but at least, as you said, Nicole's back is strong from all that dancing. That means she will recover more quickly, right?
I'm sure your not ready to be all positive and stuff about something like surgery..that probably seems like a pretty strong word right now. I knw you don't know me, but I will still pray for you and Nicole. Just don't lose hope; I bet everything will work out alright.

[MATJESNIC]

Not sure about her top curve. Was in such a daze that we left without asking a lot of questions. We know her main curve measures 48 in brace. She was getting a 10 degree correction so it could be as high as 58 without the brace. I want this surgery as soon as possible because the thought of this curve getting any bigger just sickens me. I am thankful that this surgery exists. Your prayers mean a lot to me.

[Celia]

Melissa,

When I read your post, I broke down and started crying. I'm completely in shock and saddened by this news! I wish there were a way to turn back the clock to a different time and anticipate this and act accordingly however this only happens in fairytales. Give Nicole a big hug from me and also a big hug from me to you.

[MATJESNIC]

Thanks, Celia. I really don't know if there was anything I could have done differently. I just want to get her x-rayed as soon as possible so I know what we are dealing with. I can't believe she was stable for as long as she was and how quickly her curve progressed. When you are at this point like I am, you start to look at surgery in a different way. I just want this curve stopped.

[gerbo]

melissa, melissa, so sorry to hear this, you must feel so utterly devastated and disappointed Ofcourse you did make an as good a choice as you could at the time, at least her life has been "bearable" the last few years, not being stuck in one of those hardbraces and being able to move and dance.

You know, I wouldn't be surprised that at some stage you are not going to feel this as a relief, at least there is no ambivalence and insecurity and not knowing what is going to happen, which usually caused most of the anxiety in situations like this.

At least your and Nicole's paths are a bit clearer now, and really that path and its destination are not such a bad one. Many people have gone there and arrived safely and happily somewhere where scoliosis is just a scar on the back and some restrictions in movement but at least no more bracing, no more feeling insecure, no more being worried about every next appointment, no more fear about the future, so come on girl, head up and get things sorted!!

gerbo

[MATJESNIC]

Thanks, Gerbo.

We will make the best of what has been dealt to us. I just made her appt at Shriner's. It is next Tuesday.

Thank you for all of your support. I will get through this with the help of all of you.

[pat]

Oh Melissa, I'm so sorry. I, too, am hoping for success with Spinecor, but as a parent of a daughter who's almost three years out from spinal fusion surgery, I know it will have a wonderful outcome for Nicole. I agree with everyone else, you're going into surgery with such a strong back; my daughter recovered from surgery quickly; she swam competitively right up to her surgery date. You're doing everything you can for Nicole, that's what counts. Pat

[amandap]

Melissa,

I’m so sorry to hear that Nicole is going to need surgery but Gerbo said it best at least now Nicole’s path is a bit more clear.

I know this is not what you wanted for Nicole but on a positive note she will be in the best care possible. Dr. Betz’s team is amazing and they will take very good care of Nicole and a yr from now this will all be just a memory and she’ll have a perfectly straight spine.

Please know I am here for you and will continue to pray for Nicole.

Hugs ~ Amanda

[alabama mom]

Melissa, I am so sorry to hear about Nicole's appointment. I know how devastating and shocking it is to hear that your child must undergo surgery. When we were told this, 3 years ago, I couldn't eat for a week.
But, we got through it all, and my daughter is doing GREAT! We have her annual checkup to go to next week, and I am not sure, but I think it will be her last one. She does have a scar, but she is so cool, that she wears halters and strapless tops all of the time....she is not ashamed of it. She moves around very well. She can touch her toes. She did have to learn to do some things differently, like tying her shoes, and picking things up off of the floor (she bends at the knees). But, all in all, I am amazed at how well she has done.
The surgery is scary, but it is a very successful one, in that the kids get what they need from it. My daughter's curves were 60 and 52 when we FIRST found out that she even had scoliosis, so we really never even had an opportunity to try bracing or anything. I always felt SO guilty for that. That is why I am trying this brace on my youngest daughter now. I am glad that you had the chance to try to help your daughter avoid the surgery. As a mom, it means alot to know that you did everything you could, even though she may still need it.
You WILL be strong for her, and for the rest of your family. I was, and I never really knew that I could be. And I am still stronger, because of it.
Melissa, all of you have been a great help to me, and I have appreciated it so much. I am here for you if you have any surgery questions, or anything I can do to help. Please let me know. God bless you and your daughter, and us all.
Nancy.

[AILEA]

Melissa,
I’m so sorry to hear that..... But, as others had said, this forum is full of teens who had surgery done and are doing wonderful. We, as parents, do everything we can, but sometimes there’s nothing you can do to avoid surgery; Sometimes life is like that, and we must be strong for our Childs..
I’ll pray for you. Big hugs from afar

[MATJESNIC]

Thank you all for your kind words and support. It means more to me than you probably realize. Hearing the stories of teens and Parents who have gone through the surgery is really what has helped me get through the day. Two years ago I couldn't have been this strong and this calm. I have my moments, but I know they will take good care of Nicole at Shriner's.

Nicole is handling this better than expected. Of course, we still have to get the x-rays done and talk about surgery dates, but I want this done as soon as possible.

Nancy, with such aggressive curves in their 60's, I doubt that anything could have helped your daughter. I see now that Nicole would have probably ended up at this point even if I had known earlier. Her curve is stubborn with a mind of its own.

Nicole is very concerned about dance. Her passion is tap, but she does ballet and jazz as well. Is there anything she will not be able to do after surgery? I don't mean right after, but after restrictions are lifted. I guess it depends on how much is fused.

[gerbo]

well, from my limited knowledge of dance; it all depends on what is fused etc, but tap should be a doddle, that's all feet work with a fairly straight back, isn't it. Couldn't see any reason why ballet and jazz shouldn't work neither, though there could be some restriction in movement I'd guess.

Like with many illnesses; the children tend to be much more matter of fact and cope so much better than the parents who tend to worry much more. Lets all try to learn from our children....

Take care

[Celia]

Interesting.....there was one case I read about and the patient was a cheerleader for her school and flexibility was a major concern. What the doctor did was fuse only a few vertebrae in the centre, this of course depends on the type of curvature and whether it's feasible. I'll try to find the website. There is also a doctor in California, I can't remember his name and he does a different type of spinal fusion and the incisions are very very small.

[christine2]

Melissa
I don't know what to say. You are a strong woman and a wealth of knowlege, I know you and Nicole will come out of this stronger than before.

[mariaf]

I don't mean right after, but after restrictions are lifted. I guess it depends on how much is fused.

Melissa,

Once the restrictions are lifted, there are VERY few - if any - limitations on these kids. I've heard of things like trampolines and such being off limits - but that's about it. Dancing (especially tap and ballet) should be absolutely fine for her to do once the restrictions are lifted.

Once again, I am here for you....always.

Maria

[MATJESNIC]

Thanks, everyone.

I don't really mean what is she allowed to do. More like, what will she be able to do. If the spine is fused, depending on where it is fused, it will change the way her spine moves when she does ballet and jazz, for example. I am just glad that tap is her passion and that doesn't require as much body flexibility as the other types of dances. I am also glad that she is not the amazing dancer of the studio, winning first place titles and such at the competitions. That would just break my heart if she were on that level and then never got back to it again. I just want her to go back to her old life as much as possible. Of course, we have lots of other hurdles to get through before we need to worry about dance!!!

Meanwhile Nicole is already saying how much she loved Dr. Rivard and how much she is going to miss going there. I feel the same way. I can't believe we don't get to go there anymore. I really did love the experience for many reasons.

[Snoopy]

Hi Melissa,

I'm sorry to hear Nicole needs surgery. Even though you've been worrying/thinking surgery was in her future, it still really hurts to actually hear the words. On the positive side, you've met the two Jamies in person and you know how great they are doing. Nicole will be the same. Stay strong.

Mary Lou

[amandap]

Melissa,

I know its easier said than done but try not to worry ~ I know Nicole will be just fine and back on stage dancing before you know it.

I remember this gal back in the 7th grade so we're talking 20+ yrs ago who had very agressive scoliosis so she was fused the summer between our 7th and 8th grade yr she at that time was a competetive gymnast. Anyway by the time we got to high school she joined the cheer squad and continued on he squad all four yrs of high school ~ she was out there tumbling doing backflips, frontlips, cartwheels her fusion did not seem to limit her one bit. And back then she had been told she would no longer be able to do any gymnastics at all, this only made her more determined and she worked hard and it all paid off for her. This was 20+ yrs ago technology and surgical procedures have only gotten better since then, so I see no reason why Nicole wouldn't be able to continue what she's doing now after she is fully healed. I realize that some flexibility may be comprimised but she'll adjust to whatever limitations she has if any and find another way to do the same things she's been doing. Oh and my girlfriend is now the proud mommy of 3 children 1 boy and a set of twin girls.

Good Luck and keep us posted.

Hugs ~ Amanda

[MATJESNIC]

Mary Lou,

I am so happy I met your daughter and Pat's daughter and saw how great they are doing. I also remember Pat saying that her daughter is doing some amazing diving.

Amanda,

It is amazing to think of what some of these girls continue to do after their surgery. I am going to be very positive. Believe me, dance is not the priority for me, but it's what is on Nicole's mind. I can't wait for our appt next week. But I am so afraid to hear the degrees. I am so thankful for a surgery that will help Nicole. That is what I am trying to focus on.

[alabama mom]

Melissa, I know of other girls who continued to take ballet after the surgery, and the healing time. My daughter never did take ballet, but she has always danced ALOT. Music video style or hip hop, is what I would call it, kind of like a Christina Aguilera or Shakira video. And, she's really good at it. It doesn't look stiff at all... and she had to have a large portion of her spine fused. I know that your daughter will be able to dance after surgery too. The doctors will let you know what to expect. And you will be surprised at how your daughter's desire will even surpass those expectations.
Please let me know if I can do anything for you.
Nancy.

[MATJESNIC]

Thanks, Nancy, that is good to know. These girls are so amazing with what they can do after surgery. Just wondering if bone is usually taken from the hip?

[alabama mom]

Melissa, yes, it usually is taken from the hip. That is what they did with my daughter. It may be worth your while to ask about the other option, I believe it can also be taken from the rib. I say so, because my daugter did complain about that place being sore afterwards, and I always thought that maybe because the rib is not used as much as the hip/butt area, it might have been better. You should ask.
They also mentioned using the bone bank. But we thought it would be better to use her own bone. Our doctor thought so too.
Nancy.

[MATJESNIC]

I will be sure to ask these questions at the appt.

Pat, your mailbox is full. What did Jaime end up doing for her surgery?

[Snoopy]

Melissa,

I'm not Pat, but my Jamie had bone taken from her back. Her surgeon did what is called Smith-Peterson osteotomy (sp?), so she didn't have to have bone taken from her hip or her rib.

Do you have your list of questions started for Tuesday? I'd be sure to ask how far they plan to fuse, for sure. If you want other suggestions on what to ask, let me know. Be sure to list your questions in the order of importance just in case you don't get enough time to ask all of your quesitons.

Mary Lou

[cyprusmom]

Hi Melissa, I just replied to your e-mail but seeing your comments on dancing I thought I should tell you about Anastasia who, as you know not only looks like your Nicole but had been dancing and tap-dancing for long time as well. Up to her surgery ofcourse. She did ask Dr. Masso if and when she could start dancing and really, he gave her the green light for ballet once the year is up....(this is what she asked for.)
As I am oficially an ex-spinecor mom I haven't been posting since my daughters surgery last August, (didn't think I should turn this into a post-surgery thread.) but I do check on the thread every few days and see how you are all doing.
It's exactly a year ago when my daughters curves had the same crazy mind of their own after bracing in the spinecor, just like Nicoles. I know how you feel Melissa, but just remember the smile my daughter had on her face, (although looked very pale.)...when we met you just 3-4 weeks? after her surgery. It gets better every day and now when I see her I wonder if it really happened and if she really has those implants....She also has no shame about her scar and all her friends and teachers take care of her....not that she needs any axtra attention any more....
Do prepare a list of questions for your appointment and do ask me anything you want in an e-mail.
I also have no regrets about the path that we chose. I am glad she was in the spinecor instead of a hard brace and her body stayed active and strong.

I think of all of you and your children and wish you the best,
Pola

[pat]

I will be sure to ask these questions at the appt.

Pat, your mailbox is full. What did Jaime end up doing for her surgery?

Hi Melissa, Jamie, as all the kids at our hospital, use donor bone/cadaver bone. Thanks Melissa, I just cleaned out my mailbox. pat

[Celia]

Melissa,

I'm still in complete shock that something like this happened so quickly! I honestly wasn't expecting such bad news. How much did Nicole grow during the last 3 months???? She's had her period for a year and she's still a risser 0? Have you looked up minimally invasive spine surgery?? I don't know too much about it, but it's something to ask the doctors in Philly. How are you coping?



Pola,

It's so great to hear from you again!!!! It's nice to know life goes on after the dreaded surgery :)