spinecor

[RugbyLaura]

Hi! Immy had a fitting for her rigid brace on Monday, which was booked before we got Spinecor so we thought we'd go anyway. It just made me realise how horrible it would be for her to have to wear one. Because her curve is quite high the brace is really long. It looked huge on her and was very restricting (she got stuck on her back at one point). Spinecor is so much more wearable, but enough preaching to the converted...

Immy's 1st follow up appointment with Mr Mills has been confirmed as 10am next Friday (13th). We're really looking forward to it!

Laura

[cherylplinder]

Laura,
I am so glad you got the appt! I know what you mean about the TLSO or Boston. They are incredibly restrictive compared to the Spinecor. I will be thinking of you next week. Rachel goes the next week on the 19th. I am nervous.
Hugs,
Cheryl

[Celia]

Cheryl,

I'm doing good! I think Gerbo also has an appointment sometime in July for Lisanna. I won't have computer access much this month due to vacation at the cottage etc. etc. etc..... It's a tough life! Phew!!!!! I'm getting exhausted just thinking about lying by the lake sipping cool beverages and working on my tan. I got myself a new Ralph Lauren bikini

[cherylplinder]

Oooooooooooooooooooooooooh! That sounds nice!!!!!

[alabama mom]

Laura....I was also having the same concerns and problems as you (the base shifting a bit off center, and then causing the silver buckle to irritate the skin on her left thigh). When we went back to Montreal for the 1 month check-up, Dr. Colliard said that it was ok that it was shifting like that, and she didn't tighten the base up. I also wanted to let you know that we have been using "Blister Block Stick...by Band Aid", to help avoid the irritation caused by the base shifting. So far, it seems to be helping this problem. It is a newish product meant to prevent blisters on the feet, caused by shoes. We just rub it on the specific area, kind of like a solid deodorant, everytime she puts her brace back on. She has also been using it on her thighs, and she says that it seems to help avoid the irritation. You can usually find it at walmart/target/drugstores, even some supermarkets. It is a little expensive, it costs aprox. $5 for a small stick, but I think it's worth it.
I hope this helps you out.
Nancy

[cherylplinder]

I may try that for Rachel on her armpit and hip. Thanks.

[Olivia'smother]

Brace frutstration

I have been reading whatever I can find the past few days in an effort to find the best treatment option for my daughter. She was diagnosed with scoliosis in November 2006 with a 15 degree (not sure of the other measurement off hand but believe it was quite small) "S" curve that was being "watched" every three months. There was some mild progression until recently when it jumped to 27/20 degrees. Now, of course, we are being told to brace. During the "wait and see" period, we were told by our othopedic specialist that there was nothing that could be done to slow the prgression and I listened, but now am questioning everything. Although we were concerned, my sister has mild scoliosis that never progressed to bracing or surgery, so were led to believe by our doctor that our daughter would most likely share in her positive prognosis. At our most recent appointmet last week, the doctor reviewed her x-rays in the other room, and came in to tell us that she has to be braced in a hard plastic brace for 20-22 hours per day for a year and a half. No discussion other than she will have to give up many activities as she can only be out of the brace for a short period of time each day and gym and showering will account for a good share of that time. My daughter is very active and likes to play many sports and swim. This was devestating for us both.

After processing what was said, I decided to try and educate myself as to what the brace would be like and what other options might be available. I was frustrated to see how difficult hard bracing seems to be, and that it is standard conventional treatment in 2007 to do so. When I came accross SpinCor, it looked like a wonderful option and seems to make sense. I am not a doctor, I am a counselor so although I am obviously concerned about treating the scoliosis, I am equally concerned with my daughter's mental health. She has suffered from debilitating status migraines for the past year with NO relief. We live in northern NY and have been traveling to a neurologist in VT all year to try and find an effective treatement. She missed 69 days of school and suffered horribly. She is now on a preventative treatment that is helping some, but we are still dealing with them. I simply cannot fathom putting her in a hard brace on top of everything else she has been through.

I contatcted the orthdopedic speicalist yesterday to ask him about the SpinCor brace and he was quite hostile and condescending. He basicallly laughed at me and told me that they prey on soft parents who don't want to do what is necessary to help their children. I believe he said it was "witchcraft". He proceded to tell me that the hard brace is no big deal and that I am the problem because I am not on board 100%. I thanked him for his time, and decided that would be the last time I would speak with him. I will never send my daughter back there.

I of course have some reservations about the SpineCor, but see it as our only viable option. My concern is that Olivia is 11 years 11 months old and started menstration 11 months ago. I know that she is not necessarily the "perfect" canditdate for the brace, but I want to at least look into it. Even if there is little to no correction, as long as there is no more progression we would be happy. From what I was told about the hard bracing, it typically only holds the curve if it even works at all. Since I live so close to the Canadian border anyway, Montreal is quite close. I would like to have a consultation with Dr. Rivard, but am not sure how to get in touch with him. I contacted a phone number I found online for him, but there was an aswering machine in french (of course) and as my high school french is quite rusty, I am not sure if I even left a message in the right place. Would anyone know of a better way to contact him? I realize he is in high demand and I may not get in to see him, but I have to try. I have read through many of the posts and want to thank you for giving me some hope. Good luck to all of you.
Amy

[gerbo]

Hi Amy and welcome.

So sorry to find yourself in this position and having to enter the rollercoaster ride on the theme of "how best to deal with my daughters scoliosis". It can be quite a scary and nauseating ride at times, but ups to tend to follow the downs and the upsidedownbids usually do not last too long. You are surely not alone on this ride as there are many here happy to share our knowledge and experience.

I assume you have read through this terrible long thread which really contains all you need to know about pro's and cons of spinecor treatment and arguments for and against so I am not going to repeat that. However if you feel you need some more advice or still have questions; feel free to ask.

My dayghter, now 13, has been wearing the spinecor for 18 months and although there is no garantee it will prevent progression (which it seems to have done till now) at least it garantees a reasonable quality of life; indeed, that's so important as well.

I believe dr rivard is usually quite happy to respond to emailed questions, and others have spoken to him by phone. He speaks english, so you could leave a message in english i would have thought.

So, welcome once again, we are quite a nice lot, and always happy to answer questions.

By the way; this migraine; is it typical and stable, or is it getting worse despite treatment? (in which case further tests might not be a bad idea)

regards

gerbo

[RugbyLaura]

Hi Amy,

We're fairly new too. My 10 year old daughter has been in Spinecor for 3 weeks and has had no problems so far. Our first consultant said to watch & wait. So we waited & watched the curve grow to 31 degrees. Second consultant said she needed bracing (hard brace) & while we waited for appointments the curve grew to 38 degrees. Third consultant now - who seems to be excellent! Although, he has said that Immy's chance of avoiding surgery is nil. He believes that Spinecor will be the best way of holding the curve until she has grown as much as possible. He is quite anti hard braces!!

Given the latest set of study results (hard brace - 80% requiring surgery, Spinecor 80% avoiding surgery if I remember correctly), it seems strange that there is so much antipathy towards Spinecor.

I wish you & your daughter the best of luck. With a curve under 30 and being pretty much mature, her outlook is promising, I think.

Laura

[Celia]

... He basicallly laughed at me and told me that they prey on soft parents who don't want to do what is necessary to help their children. I believe he said it was "witchcraft".

I'll tell you what's witchcraft, watching for curves to progress to 30 degrees before starting treatment!!!! I believe the French message states that drs, Rivard and Coillard are out of the country until July 6 (that was yesterday) and they have clinics on Tuesdays, Wednesdays and Thursdays. Sometimes you can find them in the office on Mondays. If you leave a message in English with contact details they are very good about returning calls and you may even speak with dr. Rivard directly. Given your daughter's age, I wouldn't wait too long to seek treatment because her curve can progress very quickly. As a mom, I would be concerned about frequent debilitating headaches and an MRI might be necessary to rule out other causes.

[MATJESNIC]

Amy,

I am very sorry for what you are going through. Believe me I understand. You are fortunate that you live so close to Montreal. There is always an English message that follows the French one. So I am not sure if you dialed the correct number. If the curve is going to increase, it will probably do so regardless of the type of bracing. If you feel more comfortable with Spinecor and Dr. Rivard says she is a candidate, then you do what you feel is right.

I have to give my our doctors here a lot of credit. They have all validated our decision to do what is best for our daughter and to try anything and everything before we have to resort to surgery. Many of the orthopedics here do not even believe that hard bracing could prevent some of the more aggressive forms of scoliosis.

That ortho you saw was a complete jerk. I have never heard such ridiculous statements and how dare he talk to you like that.

Go on the Spinecor website and be sure you have the correct number. Leave a message and they will call you back.

We are all here for you for support. Good luck.

[Olivia'smother]

Gerbo,

Thanks for the reply. I'm sure every parent would agree that watching your child go through this is difficult. I would trade places with her if I could. But I also realize that the bumps in the road and how we cope with them make us who we are so I am trying to accept this and be the best advocate and supporter I can be.

I do understand that there are many pros and cons to SpinCor and that with the many great successes there are also failures. But it seems to me that there are at least as many in hard bracing. I'm glad your daughter is doing well and you're right - the quality of life is so important. Good luck.

Olivia's migraines appear to be gowth related. She has had numerous tests to rule out anything else more serious. They are not worse, but are still present. Between the migraines and scoliosis, pubery has not been kind. She has missed out on a lot of her childhood this past year just coping with that, so again I think the SpineCor would greatly improve her quality of life over the alternatives.

I look forward to reading about everyone's progress on this unpredicatble journey.

Amy

[RugbyLaura]

Nancy, Re band-aid blister stick. I can't find this in the UK but have found something called Compeed anti-blister stick, they also do something called Compeed liquid bandage which is supposed to prevent blisters & sores. Will give these a try, thanks. Having said that, Immy really does not seem to have much problem with "sore bits"; she certainly never complains It's just that I have noticed that she has a few red patches.

Laura

[Olivia'smother]

Thank you

Wow - I can't believe all of the support here! Thank you for all of the feedback. I have already emailed Dr. Rivard, thanks to an address I received, and feel better about doing SOMETHING. Even though everyone's situation is different, it is so nice to find some understanding and hope.
To reply to an earlier post about Olivia's migraines. Thank you for your concern, but she has had an MRI, spinal tap and countless other bloodtests to rule out more serious conditions. The neurologist is hoping that when her growth slows down, so will the headaches. I am hoping that once her growth slows the scoliosis will not have progressed either and maybe (do I dare hope?) her curve will have improved. I live in a very rural part of upstate NY with very limited medical care, but am fortunate to be fairly close to Burlington VT and Montreal. I noticed that some of you are traveling from quite a distance to go to Montreal and other locations. I guess there isn't much we won't do to help our children however we can. God bless you all.
Amy

[scoliomom]

to olivia's mom

HI
My daughter is 13 and her curves progress, this year to 39' and 40'. I, of course, immediately educated myself as you are doing. I m a firm believer in the body rethinking" itself and using physical means rather than surgery. I found incredible evidence that lead us to the CHENEAU brace.. There are only 2 places in the US that make it. It is a hard brace- my daughter is entering 8th grade and doing well adapting.. Luke, in Fairfx VA helped her tremendously with contact numbers for other girls like her wearing this brace, all over the US.

Just thought I'd throw in my 2 cents-- We are also attempting SCHROTH methods of exercise..

good luck for you and your daughter.