spinecor

[rtremb]

Sherie:

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

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

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

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

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

[Sherie]

Ruth,

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

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

[rtremb]

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

[Celia]

Cheryl,

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

[momw/scoli]

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

[Celia]

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

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



http://www.istreamplanet.com/srs/def...&conf=3&edi=12
__________________

[Sherie]

Hi Becky

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

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

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

[Celia]

Pat,

I tried returning your message and your mail box is full

[jillw]

thanks

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

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

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

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

Thank you!!!!

Jill

[momw/scoli]

Hi Sherie,

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

[rtremb]

Jill:

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

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

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

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

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

[leigh9p]

Spinecor fitting question

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

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

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

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

[Celia]

Hi,

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

[RugbyLaura]

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

Celia - How high are we talking??

Laura

[Celia]

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