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fireflymd
8th December 2009, 03:49 AM
I would like to relay our experience with this brace thus far, and then ask some questions of those who are using the brace.

We met with Aatif Siddiqui, a chiropractor in Manhattan, last week to be fitted for the brace. 1) Has anyone else on this forum used Dr. Sid? If so, what has your experience been like? Please feel free to PM me if you wish to keep your opinions private.

I brought to him a scoliosis series done in the radiology department of my medical group which showed an S-curve of 34 degree thoracic, 36 degree lumbar of my 10 year+10 month old daughter's back. Dr. Sid repeated the AP film in his office and her curve was visibly better, which he measured at 31T, 31L. My daughter told me the radiology tech at the medical group had "maneuvered" her hips and shoulders before taking the films, for which the radiologist apologized to me since he stated they are not supposed to be positioning/rotating, etc. the patient.

After he fitted her for her brace, he warned us that if the curve did not show greater than a 5 degree improvement, it may not work for us. Luckily, her in-brace films showed an 8 degree improvement thoracic (23T), and a 10 degree improvement lumbar (21L). We were thrilled with the flexibility of her curve and I was happy that Dr. Sid did not take advantage of using my medical group's X-ray as the initial film.

2) When my daughter's belly gets full, then the brace feels very tight. We have had to slightly loosen the straps when she is laying in bed. Has anyone else experienced this? Dr. Sid has asked us to return, because he said this should not be happening. But wouldn't the spine elongate in the supine position, making the straps tighter?

3) Presently my daughter is removing the brace every time she has to void. She does not like the bodysuit idea (prefers to have her thighs covered), and Dr. Sid discouraged us from purchasing the bodysuit from him ($80) because he said there were cheaper versions around and that most girls wore T-shirts and bike shorts. What do your girls prefer?

4) Has anyone here had experience with Dr. Deutchman or Dr. LaMantia? My husband called their office because we wanted to seek out their opinion and surprisingly, Dr. LaMantia told my husband that if we already started the brace with another doctor, he wouldn't see her! Which made me feel like because I didn't purchase the brace through him, I was stuck with whomever I saw to begin with.
*Edit* Dr. Deutchman did return our call. He was wonderful and he spent a lot of time on the phone with us, and explained there was a misunderstanding.

5) I have seen many pictures of girls in this brace, and the pelvic plastic part is usually on the upper part of their buttocks. Dr. Sid, however, told us it had to be around the fullest part of her buttocks. Where does your daughter's plastic pelvic piece lie?

6) There are two orthopedic surgeons on Long Island who use Spinecor, Wesley Carrion, MD and Susan Haralabatos, MD. Does anyone have any experience with them?

I appreciate the opportunity to converse with others who are using this brace.

crazylu
8th December 2009, 02:59 PM
Hi Firefly and welcome. Your questions are all very valid, so don't worry about asking them. Honestly, I think of so many questions everyday, so ask away. We don't have any experience with any of the doctors that you mentioned as we are in the Toronto area in Canada. We see Dr. Rivard in Montreal. I will try to answer some of your questions as best as I can without my daughter here to help. (As I'm sure you are finding out our girls can be quite vocal with their complaints). My daughter had the same complaints about her brace hurting her after eating, also complained when she went to bed that it hurt as well. We were too afraid to mess up the straps, so we didn't change them at all. She says now that she still can feel a little difference after a big meal or when laying down, but it doesn't bother her anymore as she is used to it and it goes away after a little bit. We have found that the longer she wears the brace (week wise that is) the less complaints we have from her. We did get the bodysuits as there are less seams to irritate her skin. Our daughter likes tight clothing so she prefers the regular bodysuit style, although she wears the bicycle shorts style one as her pyjamas. She still insists on wearing panties, as she says it is just too 'weird' without them. I will have to take a look at her to see just were all the plastic bits lie on her body before I answer the last of your questions. Please feel free to ask any more questions, although I am far from an expert, we are over the two month mark in the brace. Lu

fireflymd
8th December 2009, 05:47 PM
Hi crazylu, thanks for responding. My daughter also does not feel comfortable not wearing underwear, although I'm hoping when she sees the bodysuits (I ordered a regular one with snaps from bodysuit.com, and another one with the bike shorts sewn on from embracedincomfort) that the ease of going to the bathroom will entice her to wear them.

Thank you for relaying how she felt after eating and laying down! It makes sense that the elastic straps would feel tighter.

I feel very fortunate that my daughter has really handled all of this so well--she is handling it better than I am, and now I wish I hadn't "watched and waited" while her back worsened--I wish I had started this sooner, when her curve was smaller, although I have no way of knowing if that would have made a difference anyway.

I appreciate the support!

crazylu
8th December 2009, 06:01 PM
Firefly, don't beat yourself up over things you can't change. Everyone feels guilt for the what if's. I met a Mom at Sick Kids who didn't notice her daughter's back until her Cobb angle at the top was over 60 degrees, she felt so guilty. Her only consolation was that they didn't even need to wonder about bracing, cause her daughter was already into the surgery range. By the way, how long has your daughter been wearing her brace? Did the Doctor advise you how to wash it? Let me know if you have any more questions, I will be happy to answer. Lu

fireflymd
8th December 2009, 08:35 PM
She just started wearing it on December 1st. He told us to put the straps/bolero in a lingerie bag to wash, and then to use the dryer, (but not for the plastic pelvic portion of the brace.)

Lu, she hasn't been able to wear her jeans over the brace--I tried a larger size jean but she said the jean material is just too stiff. Luckily, they now make fashion "sweatpants", so she's happy.

Thank you for being so kind. My husband has also told me to let go of the past, and move forward now. So we're keeping it positive for her, and quite frankly, this kid has been making it easy.

crazylu
8th December 2009, 10:57 PM
Firefly, I agree our children are quite amazing, so strong. Your husband is quite right about moving on, we still have a very long road to travel with many twists (sorry about that, but hey sometimes we just have to have a little laugh) and turns, this scoliosis is so very confusing and difficult. My daughter mostly wears the sweatpants as well, she has some jeans in the larger sizes but seems more comfortable in her sweats. My daughter is in grade 8 and was quite the fashion diva, so this has been hard for her. I'm glad your daughter has been taking this so well, so has mine with the occasional outburst of feeling sorry for herself, but all in all she is handling it well. Lu

fireflymd
8th December 2009, 11:10 PM
Lu, it is such a pleasure to finally find someone else going through something similar! Dr. Sid said he never heard complaints with laying down, and that kids come back all the time wearing their regular clothes. Either no one has complained to him, or he hasn't fitted many patients with this brace. I was so shocked when I received the number of her curve, that I made the appointment without investigating the number of spinecor patients he has worked with first.

Christine2
8th December 2009, 11:50 PM
Hi Firefly & Lu

My daughter will only wear the Spinecor bodysuits (not bike shorts). She learned very fast on her own how to use the potty, or Loo as some of you say, that term is so cute :) Keep in mind that my daughter was very young when she started bracing. I think that makes things a bit easier.

The plastic pevis part sits pretty low on my daughter, we wash that whole brace in a seperate laundry bags once a week. Cold water - no fabric softeners- low heat dryer- plastic and all. Her last brace lasted over 2 years.

We see Dr Rivard & Colliard. I have not heard of your doctor. I would just make sure that they are certified.

No discomforted for my daughter after eating. For us the transition was a few days. I am sure for an older child it would be longer.

fireflymd
9th December 2009, 02:43 AM
So far, my daughter did not really like the bodysuit from bodysuits.com--she said they were a little itchy under the arms. And they don't have a shelf bra, which she really wants. And the bike shorts from Danskin were too tight on the thighs. This is more like the daughter I know, so I don't know how she is handling the brace at all!

I'm going to try the SpineCor bodysuit, but I don't think she'll like the straps directly on her thighs--someone mentioned gluing moleskin to them. I also have the other bodysuit from EmbracedInComfort coming in the mail. She also didn't seem thrilled with not wearing panties, so I suspect I'm going crazy for nothing, and she will be wearing (as she is now) a shelf bra camisole, with a T-shirt over it, panties and leggings, then the brace on top, and over that a top and sweats, so she'll still be completely removing the brace when she goes to the loo (also love that word!)

I really do appreciate your help and support. It's so nice to hear from others going through similar things. I told my daughter tonight I was conversing with other parents whose daughters are in the same boat and she was pretty pleased.

mamamax
9th December 2009, 03:51 AM
Hi all - new here. I'm an adult bracing with Spinecor and use the adolscent model (pelvic base and thigh bands). I wear the Spinecor body suit (long leg version) underneath with no other underwear and it is quite comfy and bathroom friendly this way. Had to order several of course, find them worth the cost and have not been able to find a suitable substitute. I've heard some remove the snaps and affix velcro closures. Hope this helps.

fireflymd
9th December 2009, 04:24 AM
Hi manamax! Does Spinecor sell the bodysuit (long leg version), or did you purchase them elsewhere? My daughter told me tonight it took her longer than usual to go to the loo at school because another girl was hanging around in the bathroom and she didn't want her to hear her snapping her brace on.

mamamax
9th December 2009, 12:03 PM
Hi fireflymd - Spinecor does sell the long leg body suit, I purchased mine through my brace provider. This version does not seem to have loud sound effects in the ladies room - nothing that could be heard over conversation as I recall. You can bet I'll be paying closer attention today :-)

crazylu
9th December 2009, 03:47 PM
Hi Firefly, my daughter wears both styles of the bodysuits from Spinecor. We have not found anything else that is as comfortable for her. She also still wears her bra and panties underneath, as I said before she just finds it too weird going without. The bodysuit with the legs is good for comfort for her as the legstraps are not sitting on her legs. She wears the suit with the legs at night and when she is wearing her sweatpants. On the rare occasion that she wears jeans she wears the other style without the legs, don't ask me why, this is just how she feels comfortable. Now for the tricky part using the toilet. Without going into too much detail, when she is just doing #1 she undoes the crotch straps and snaps and pulls her undies to the side (kind of how you do it in a one piece bathing suit). However, like your daughter when it is a more time consuming job (you get my drift) she does remove the whole thing. She tries to do that sort of thing at home where it is a little more private. So far so good with that. They get so fast taking the brace off and on that it really gets to be less of an event and more just a part of their day. You asked yesterday about the pelvic piece and where it sits. My daughter's brace was fitted by Dr. Colliard in Montreal (one of the inventors) The doctor said to have the brace to sit 2 finger levels below her hip bones (for the front). In back the two plastic pieces sit just above the fullest part of her bottom, sort of in the hollows below her hips and just above the rounded part of her bottom. We have already been for an adjustment in Montreal and the doctor looked at how my daughter was wearing it and only adjusted the two top straps a little tighter. We took pictures after her initial fitting and tried to make sure all the straps looked exactly how the doctor had put them on. Like Christine said we wash the entire brace plastic and all in a mesh bag with cold water, detergeant a little oxyclean powder and a low dryer, you can manage this in the two hour break. Did I miss anything? I know that there are others, like Christine2 that have been doing this for a while and I have truly counted on them for advice all through this process. Lu

fireflymd
9th December 2009, 05:35 PM
Thank you manamax and crazylu so much for that information! Crazylu, your descriptions help tremendously. I'll have to call my provider to see if he sells the bodysuits--I wasn't even aware that they had a longer leg version, so that would be a huge help. And thanks for the tip with the panties--my daughter will also not go without them.

I greatly appreciate all of your help. Thanks!

crazylu
9th December 2009, 05:51 PM
No problem, it's really nice to be able to help someone who is going through the same thing as we are. Lu

mamamax
9th December 2009, 11:51 PM
You're welcome fireflymd, it is nice to be able to share info. Using the adolescent brace as an adult - I was actually able to get a lot of good tips from reading posts from parents. Like the mole cloth (for chafing) in the beginning - and the alternative toilet thing (which I also used for a few weeks).

fireflymd
10th December 2009, 05:50 PM
Couple of updates:

1) I spoke to Wesley Carrion, MD about the Spinecor brace (he is listed as a provider); he said he has used it a few times, it gets fitted by a local orthotist, and that he has seen similar outcomes with the hard brace--stabilization of curves. I was happy to hear he didn't have a bad experience with it (although he hasn't used it that often), but it's difficult for MDs to use these types of braces because they are not considered the "gold standard" for bracing and we live in a very litigation-happy environment.

2) I looked into what it takes to become a provider for Spinecor, and unfortunately, besides the training cost, you must purchase some brace equipment to have on hand in your office. For a medical doctor, who may participate in insurance plans that will not pay for the time/fitting/software/brace, etc. it is really not feasible to become a provider. Unless the orthopedist completely operates outside of medical insurance, this would be a difficult path to pursue--a lot of non-reimbursable time and effort.

3) Lu, thank you for suggesting I e-mail Dr. Rivard! He responded and requested I e-mail him of picture of my daughter in the brace. I am so grateful to him for offering this. I'll post again once I've sent the picture and get a response.

crazylu
10th December 2009, 06:19 PM
Firefly, you will find that Dr. Rivard is truly a very kind gentleman. He will do his best to answer your questions. Lu

mamamax
10th December 2009, 11:17 PM
Couple of updates:

1) I spoke to Wesley Carrion, MD about the Spinecor brace (he is listed as a provider); he said he has used it a few times, it gets fitted by a local orthotist, and that he has seen similar outcomes with the hard brace--stabilization of curves. I was happy to hear he didn't have a bad experience with it (although he hasn't used it that often), but it's difficult for MDs to use these types of braces because they are not considered the "gold standard" for bracing and we live in a very litigation-happy environment.

2) I looked into what it takes to become a provider for Spinecor, and unfortunately, besides the training cost, you must purchase some brace equipment to have on hand in your office. For a medical doctor, who may participate in insurance plans that will not pay for the time/fitting/software/brace, etc. it is really not feasible to become a provider. Unless the orthopedist completely operates outside of medical insurance, this would be a difficult path to pursue--a lot of non-reimbursable time and effort.

3) Lu, thank you for suggesting I e-mail Dr. Rivard! He responded and requested I e-mail him of picture of my daughter in the brace. I am so grateful to him for offering this. I'll post again once I've sent the picture and get a response.

Amen - we do live in a very litigation-happy environment, as well as politics and money - eh? I'm glad you posted the information regarding why more orthopedists may not work with Spinecore (the insurance thing). What you say makes sense. I'm very glad you got a hold of Dr. Rivard and that he will work with you. Is Dr. Sid also a Clear practitioner? If so I think that is the first time I've heard of one working with Spinecor. Thanks again for the surgeons you mentioned that are also using this brace.

fireflymd
12th December 2009, 06:25 PM
Here's a weird thing--I tried to edit my initial post, because we spoke to Dr. Deutchman and he was wonderful, and he explained there was a misunderstanding. When I try to edit the post, it takes me to the National Scoliosis Foundation forums.

titch
12th December 2009, 07:11 PM
Ooooh! Can I ask, did you copy and paste that post from NSF forums? Because by the look of it you did, and you inadvertently copied and pasted the edit button from your post there :D :lol:

I'll edit the message in a moment to remove it, but actually you probably cannot edit the message yourself any more as we have a time out on the ability for members to go back and edit posts (it's a safety measure because of prior experience that a member who realises they have shown themselves in a very poor light and been extremely nasty may go back and retrospectively edit posts some time later, so that a latecomer sees them as being reasonable and even being bullied. So there's something like either 24 or 48 hours time out). Anyway - if you can edit the post, the proper edit button will be down at the bottom right of the post, beside the Quote button, and if you can't edit it, you can PM the change you want to me or any of the staff and we'll make the change for you.

Hope that helps!

mamamax
12th December 2009, 08:33 PM
Here's a weird thing--I tried to edit my initial post, because we spoke to Dr. Deutchman and he was wonderful, and he explained there was a misunderstanding. When I try to edit the post, it takes me to the National Scoliosis Foundation forums.

Thank you for posting that information fireflymd .. I was so hoping that would happen!! I just met Dr.D for the first time at my last office visit (prior to your post on this) and was hoping this would end up being the outcome. Appears to me you have some great people on your team (Rivard, et al). Wishing you all the very best.

ballerinaliv
12th December 2009, 08:37 PM
i wear a spinecor brace but i no longer wear the brace with the croch pand etc... the top part of the brace with the straps is exactly the same but they have velcro on the ends and the bottom bit is more like shorts, the velcro part of the straps attaches onto them and it is really comfortable. so there is no need for lon legged body suits...sometimes i just wear vest tops underneathe the brace. I would ask the doctor about this next time you go back to the hospital.. all i said to my doctor was could i try the pants for the brace instead of the crotch band one.

fireflymd
13th December 2009, 12:24 AM
Thanks, titch!!! That's exactly what happened! I was so mystified! And I think your editing rule is a very smart one!

ballerinaliv, I have heard of this option and will definitely look into it.

Once again, I really want to thank all of you on this forum who have provided support. (You are all like a spinecor brace for me!) I am so grateful to everyone who has responded. Thank you all so much!

fireflymd
19th December 2009, 03:00 AM
We haven't had our one month check-up yet, but I noticed the other day that my daughter seems to have less lordosis. She used to stand with her belly forward and her lower back very curved, and now she looks straighter.

She even mentioned to me that the brace is making her "thinner" (I think this is because her belly is not protruding as much as before).

I'm trying to remain hopeful, even though she is so young and already had a large S-curve when it was finally x-rayed. I know her risk for progression is very high. I plan on starting a new thread regarding Schroth PT, which looks very interesting as another modality to try to reduce the curve.

crazylu
21st December 2009, 04:19 PM
Hi again Firefly, seems like we are living similar lives with similar questions. Wondering about Schroth and questions about the Cheneau brace. Just to let you know we are going to an orthopedic surgeon on Wednesday. I have a list of questions to ask him. I understand from his secretary that he has a couple of patients wearing Spinecor (at the insistance of their parents). I don't know what he recommends but I guess we will find out. Sounds like our daughters have a very similar problem. (Large S curves). Sadly our daughter (age 13) is starting to voice the opinion that if all this is for nothing (bracing) then why don't we just leave her alone and wait until she is old enough for surgery. Hopefully this doctor on Wednesday will have some words of wisdom. We can hope anyway. If he does recommend a hard brace, then I'm not sure how we will proceed. Lu

fireflymd
22nd December 2009, 01:24 AM
Lu, it must be so difficult for your daughter at age 13. I give you all tremendous credit for trying to reduce/stabilize her curve without surgical intervention.

I hope everything works out for the best for you and your daughter. It's such a long process--I don't know how these kids deal with it.

aczav
16th November 2010, 09:31 PM
Hi I have scoliosis and I have a quick question because I am trying to figure out if I am able to wear the spinecor brace due to my growth. Has your daughter had her period yet?

crazylu
19th November 2010, 06:56 PM
Hi, and welcome to the forum. Anyone here who has a Spinecor or has someone in one will be happy to answer your questions. Just fire away. Lu

Veevee
20th November 2010, 01:27 AM
Hi, I am 23 and I wear the adult spinecor brace (it's a little different than the teenager one). I don't think there should be a problem with growth as the brace is elastic and flexible and you can always change the length of the straps.

I have been having the same problems with eating. I never get hungry in the brace (if I am starving for breakfast in the morning, I'm not hungry anymore after I put on my brace). I also get very hiccupy/burpy after I eat and it does feel tight around the stomach. Most days I have to take it off around dinner time. Luckily for me, my family can have late dinners around 8pm.

I also find that my lung capacity is restricted in the brace. I can't go up two flights of stairs without huffing and puffing.

As for using the bathroom, I remove the straps and I wear my own underwear underneath. I find the hole in the shorts are too small to keep sanitary. This can shift the brace a bit and the bolero can go up quite high but I haven't figured out any solution for this.

I was able to find body suits that look like bathing suits from a retail store at the mall (don't ask me why dancewear is now trendy for teenagers), and they were on sale for $5 each (I guess the trend didn't catch on). They came in different colours. I don't think they are selling them anymore. But I still like the original spinecor body brace better. For one, it covers the whole back unlike dance leotards, keeping the bolero clean. And two, the sleeves are shorter so they don't hang out of your tshirts. And lastly, the crotch area is softer.

Veevee
20th November 2010, 01:30 AM
Oh and I have been able to wear some of my clothes over the brace. Shirts I find more difficult as one of my straps go across my chest so the neckline has to be really high.
But for jeans, if you can find a pair that is stretchy and with thicker material, you can wear them quite fitted comfortably and without the brace showing through.

azhikergirl
18th February 2011, 02:04 AM
I am new to the Adult Spinecor brace. I use the model with the shorts, not the hard plastic pelvic pieces. I quickly found I needed to "alter" the shorts with the help of a serger (sewing machine) to increase the size of the crotch opening for sanitary reasons. I have found by wearing a t shirt under the brace top straps and tucked into the shorts and wearing my underpants over the shorts makes going to the bathroom quick and easy and I dont have to unfasten the velcro straps and risk getting them "out of alignment".