View Full Version : Laura's spinecor trial
16th December 2005, 09:09 PM
OK, good bits first. Wow, what a beautiful hospital, this private place in Sheffield, soft carpets, smiling receptionists, loungy type of waitingrooms. Miles of the NHS world of crappy buildings, stressed nurses and general chaos
We were the only patients Mr Mills had to deal with from 10.30 onwards, and with time for x-rays in between, we spend there till 2.30, hardly without any empty time. With other words, we did get lots of time and lots of attention (surely the bill is going to reflect this)
First xray, taken after she had been out of brace for 3 days was a bonus; we measured the cobbs angle at only 26 degree, similar to what it was a year ago, so up till now, we have beenreasonable stable, so that's good too
Next, trial of spinecor, curve at T11 he classified as "being a bit awkward", (whilst T12 would have been easier, apparantly every level has its own approach) Slightly surprisingly (to me) he needed to use his computer to work out how to apply the various components of the brace. Would have hoped that with experience this would have become second nature.
Laura kind of liked the brace more than her current plastic one, feels softer, moves easier and is thinner. I think she was slightly disappointed that it was still lots of material to go round her body, and did have her little crying moments (back to reality after 3 days of bracefree bliss played its part)
Next; xray in brace, slightly mixed feelings. We measured the cobb angle at 16 degree (indeed, saw the computer do it, very handy), which as such is better than the 21 degree we had months ago whilst in the hard brace. as such promising, however; one component of the brace is pulling the right shoulder slightly down, which apparantly has a reason as it adds to the straightening of the spine, but i am not to keen to have her walking lobsided through life, and ofcourse it goes against her dancetraining, which is all about symmetry of movement and posture. Not sure how much this pulling down of the shoulder contributed to the straighter picture and given a too optimistic impression of the potential of the brace.
All in all, considering 1))the published evidence is as good as for any other brace (if not better) 2) Laura likes the spinecor more than her hard brace 3) It is definitely doing something, we have decided to take the plunge and give it a go. waiting now for NHS appointment with mr douglas in sheffield, who as an orthopedic needs to do the prescribing of the brace.
Best news for Laura; at the end we asked whether she should wear her old brace whilst waiting for spinecor at which he replied at the delight of Laura that he had rather that we didn't as it could reduce the effectiveness of the spinecor. we had such a happy girl driving back with us in the car tonight, at least xmas and newyear without her brace. How the hell we are going to get her back into bracing in the new year, i don't know, worry about it later.
16th December 2005, 10:20 PM
Fingers crossed this is it, and it works well for her. As it goes, creation of a different thing, such as a dropped shoulder, or a new curve or increase in the smaller curve while the larger decreases and other things can all be hazards of any brace. The good thing, assuming that you do proceed with Spinecor, is that you are already very aware of many issues, and already pursuing strength training to counter imbalance :-)
17th December 2005, 03:11 PM
I responded to this post on the NSF and I also wanted to add: Why didn't Laura get the brace right away ? From what I can tell you are not undecided and it seems like it's a go, so why do you have to wait until the new year ? Don't worry about the shoulder tilt, it disappears almost immediately because the body learns a new movement - I think intially there is postural disorganization.
17th December 2005, 04:38 PM
That was a very satisfactory appointment Gerbo.As a parent I would have been delighted with it.If Laura's new rigid brace pushes forward her tummy, it's pointless wearing it anyway, seems like something's gone wrong there, so hopefully she'll enjoy her bracefree days.
I wouldn't worry about Mr mills consulting his computer,I guess this is the engineering gene becoming dominant over the medical one :glee: I seriously doubt any engineer could even take a tea break without consulting a computer.
Seriously though, I like the fact that he was honest with you when explaining the more awkward treatment of a T11 curve.That is something I respect in a person very much.
I hope Laura adjusts to the spinecor very easily.I feel it will be easier for her to tolerate and therefore more likely to be worn as prescribed.
I'm not suggesting you shouldn't trust your daughter, but believe me...the more difficult a brace is to have taken off by your school friends in the locker room, the better.I am unfortunately speaking from experience here :ignore:
It's also difficult for a parent to wait several months to see if progress is being made with bracing, but that's one of the worst things about the condition.There are no quick fixes and easy answers.
For what it's worth I would do exactly as you are doing right now.
18th December 2005, 10:25 PM
Originally posted by Sealy@Dec 17 2005, 03:11 PM
Why didn't Laura get the brace right away ? From what I can tell you are not undecided and it seems like it's a go, so why do you have to wait until the new year ?
Not 100% sure here myself. I think a orthopaedic consultant needs to "prescribe" it before we can have it, we cannot see one till hopefully early 2006.
18th December 2005, 10:34 PM
Originally posted by Sealy@Dec 17 2005, 03:11 PM
Don't worry about the shoulder tilt, it disappears almost immediately because the body learns a new movement - I think intially there is postural disorganization.
thanks, decided to (try to)stop worrying altogether, no purpose to it
18th December 2005, 10:37 PM
Originally posted by sins@Dec 17 2005, 04:38 PM
I would do exactly as you are doing right now.
that's a very helpful remark, thanks sins-cerely
22nd December 2005, 05:58 PM
Are those kind of braces prescribed for young kids as the bones can be trained while still growing? Makes sense but tough luck for those of us who don't realise we are wonky until we have stopped growing, I dont mind walking around in life lop sided a bit though, makes it more interesting. I don't think there is anything wrong with people having different body shapes and we shouldn't be made to feel like to be normal you have to have a straight spine. Sorry for my little rant
23rd December 2005, 08:28 AM
can understand what you are saying, suppose your perspective changes or has to change depending on what life throws at you
23rd December 2005, 12:44 PM
There are loads of people out there with slight scoliosis/kyphosis anyway - and no-one's totally symmetrical. Normal doesn't really exist, lif would be too boring if it did! :D
9th January 2006, 02:46 PM
We now got an appointment for friday 20/01 at sheffield's children hospital to see a mr cole (and be fitted with the spinecor we think)
anybody ever see mr cole??
9th January 2006, 04:09 PM
I was wondering how this was going! Do you happen to know his christian name, or at least initial? I'm curious because I'm pretty sure that Mr Ashley Cole, who was the assisting surgeon on my salvage surgery, has moved on from QMC in the last 3 years (much to my disappointment). If it is him, he's great - lovely man and extremely easy to talk to. I absolutely grilled him when he came to take my consent, and he was so patient with me - my consent was *absolutely* informed ;-).
Actually, I've just found this: http://www.scoliosis.org/forum/archive/index.php/t-1410.html with discussion between you and Sealy, and one of her posts mentions the consultants listing Mr AA Cole - while it's possible that there is more than one AA Cole in the field of scoliosis, I'd doubt it. If it is the same one, you're in good hands with him :-)
9th January 2006, 04:49 PM
That sounds so encouraging, need an accessible person after our last bad experiences.
Bound to be the same one as when I spoke to him on the phone ages ago (to ask what he thought about the spinecor) I am sure he mentioned he worked previously in Nottingham
23rd January 2006, 05:26 PM
(This is a slightly edited version of the message I wrote on the NSF webside, we have quite a nice little community of about 5 parents of spinecor users exchanging views there, americans, somebody from spain, cyprus, holland (me) and canada (mmmmh, wonder who that would be)
What this is about is our first appointment in Sheffield with mr Cole (Ashley indeed Titch) who we had to see before we could get our Spinecor brace, which was going to be fitted same day;
Long day on friday. First appointment with consultant due at 11.20, but running a good hour behind saw him at 12.30 only.
Pleasant and straighttalking, seemed to listen and answer questions much better then previous consultant. (and despite being behind, did not seem to be in a rush)
Spinecor is the only brace they use in Sheffield with adolescents, (and currently about 75 being treated this way) mainly because of its wearing comfort and because the evidence is considered to be as good as for other braces, although as far as he was concerned, "the evidence for bracing in general wasn't particu;arly convincing anyway". However, "as we have nothing to offer between observation and surgery" "we might as well try the spinecor". "If he had a daughter, she'd be in a spinecor" He wasn't raving about the current spinecor evidence as it has been produced by the makers and developpers of the brace "who have a personal interest". However, on the other side "Laura should be an ideal candidate, with a curve in the 20's and major growth spurt to come) Interestingly, he measured our last months picture out of brace at only 21 degree, which made us slightly insecure again; had the previous approach been ok afterall????
Next; a "Qualscan", which is an imaging method using zebra stripe type lights projected over the body and little stickers placed over the spinal processes to give an indication of the curve. This method is additional to x-rays, to hopefully reduce the need for x-rays, whisl still having an objective measuring method. Quite interesting
Next; fitting of spinecor with orthotist. What we thought was going to be an at the most one hour appointment, turned out to be an at least 3 hour marathon session, with a once again to me very novel assesment method using rather advanced looking electronic equipment to produce a three dimensional image of Laura's trunk on the computer with the aim to classify the scoliosis, which is relevant for the way the brace bands are being fitted.
Eventually left after lots of instruction on how to put on/ take off and with advice on a slow building up of wearingtime over 7-10 days.
Initial impressions; yes it feels much more comfortable, although I am a bit worried about the bands around the groin area and how much irritation they might cause, Louise already ordered some cycling shorts to deal with that
hugs feel normal with the brace on (great!!)
shopping on saturday she noticed a bondage type outfit in the window of "Ann Summers" and pointed out that it was "just like her brace" (don't they grow up quick)
still feel insecure as we now have 3 months to wait till next x-ray and 6 months to next consultant appointment. Is it going to make a difference?????? I kind of know we are doing as much as we can do currently, do not feel much easier at the moment though, it all feels rather tough to all of us.
23rd January 2006, 10:09 PM
There's not really anything useful to be said is there? Everything that can be done is being done, and thankfully it's all positive as it stands. I've got fingers crossed for you that it actually works, and I'm glad that you liked Mr Cole - he's definitely up there on my list of good people :-)
23rd January 2006, 10:58 PM
There's not really anything useful to be said is there
That is how it feels to me as well, and that is why you haven't seen a lot of me recently. It is a bit of a wait and see game now. And thanks for doing things like crossing your fingers, that has been and remains important. Always good to know that there are people out there who care
6th February 2006, 06:02 PM
I'm still upset with you over the Canadian remark on the NSF :soapbox: :-D
7th February 2006, 08:04 AM
aaaarrggghh, a native inuit hunter, guided by the position of moon, stars and the shape of snowflakes has managed to track me down, I need to find another hidingplace.......
;-) :bounce: :bounce:
7th February 2006, 07:07 PM
UGH ! Me findum pale face Gerbo :joke: Just remember.... you can run, but you can't hide :-D
8th February 2006, 11:28 AM
good thing i can hear and see you coming from miles away, with those bells attached to your sleigh and ofcourse the red glowing nose of your lead husky
:spin: :spin: :spin: :spin:
8th February 2006, 11:35 AM
warning: if the quality of this thread doesn't improve dramatically soon, it will be removed from this forum, sorry, but standards will have to be kept up :evil: :evil: :evil:
8th February 2006, 02:15 PM
You sound a tad upset :-o :shock: :bounce: :rofl: I'll try to keep up the standards :niceone:
8th February 2006, 03:27 PM
You sound a tad upset
:cry: :cry: ???? not in the slightest, just enjoying myself :D :D
Laura is now completely used to her brace, puts it on herself, which is a great advantage over previous TSLO, which we had to do fer her, it is so comfortable, even without the bodysuit, and she is so huggable now. If and when we find out that it is working, we'll be ok for the next so many years.
8th February 2006, 05:17 PM
I am sooooo glad to hear that ! I hope Laura continues to do well with it ! It's SUCH a comfortable brace, it makes all the rest pale in comparison. Best of all, it's working for us :rox: I am so greatful to Dr. Rivard and Dr. Coillard for developing the spinecor because without it Deirdre would have been wearing the dreaded Milwaukee full time :(
8th February 2006, 05:57 PM
Even though Laura is used to her brace, how does she actually feel about it?
Is she happy enough that it's not as obtrusive as the infamous Milwaukee brace?
How does Deirdre manage it? Is its just like having to put shoes on for her to wear it? you know like an ordinary day-to-day thing?
or does she make any fuss?
Do you have any pictures of her in the Spinecor? I'd love to see how different it is, having seen so many pictures of the milwaukee brace?
8th February 2006, 07:21 PM
It's like wearing an undershirt. The only problem we've encountered is chafing around the legs - that's it. She makes no fuss whatsoever and doesn't want to take it off. I'll upload a picture right now. The picture is a bit dark, and PLEASE excuse the mess in the background :hunny:
edit: I tried to upload the picture but I think it's a little too large - I'll try later :kiss:
9th February 2006, 08:24 AM
Even though Laura is used to her brace, how does she actually feel about it?
Is she happy enough that it's not as obtrusive as the infamous Milwaukee brace?
she will never "like" the fact that she has to wear a brace in the first place, however much prefers it above the already quite invisible tslo brace she had before, a milwaukee would have been a disaster for her, she is very bodyconscious.
The daily "lets put the brace back on moment" which we used to dread, is now a doddle, she just does it herself without any fuss whatsoever
10th February 2006, 11:54 AM
Im really pleased things are getting easier for you Gerbo long may it continue
10th February 2006, 05:18 PM
you see Mark, besides being funny, you can be kind and considerate as well, which compensates for your politically incorrect moments ever so nicely.
and yes, an at least temporarily feeling of wellbeing is quite enjoyable, whether it will last......??
11th February 2006, 04:48 PM
Thanks gerbo i put my political incorrectness down to growing up during the Thatcher years
13th February 2006, 05:21 PM
I am glad you are happier with the treatment now, and that this brace is much more comfortable, hopefully it will stop the curve progressing.
She may get fed up quite often about having to a brace like you say, but remind her of how she will be brace free when she is older, and all this hard work will have payed of!
16th February 2006, 09:26 PM
Sorry for the delay on the spinecor pics, :coffee: When hubby erased the hard drive and re-installed everything the other day - he forgot to install the photo editor :thwack: Is there anything else I can do ? Maybe post it directly on here ?
Edit: I'm uploading the most recent pics to the gallery - photobucket. I think they will be a bit on the itsy bitsy side :(
7th May 2006, 09:20 PM
Sorry for hijacking this thread but I met a woman at the weekend who is based in Ireland but whose daughter was treated in the UK with a Spinecor brace about 5 years ago. She is planning to send me information but she mentioned a Mr Mills as being the person who fitted it. The mother was very impressed with the results. She said it definitely held the curve and may have gained some small improvment. She also mentioned that her daughter was 13 when she started wearing the brace and had pretty much stopped growing so there was little scope for a major improvement. The mother had made an effort to get the word out in Ireland about the effectiveness of Spinecor but found it difficult. They paid for it privately and had to have a UK consultant oversee the treatment. They travelled over and back approximately every six months.
8th May 2006, 08:16 AM
Thanks Pauline, that's interesting. Mr Andrew Mills is the person who now owns the company making the spinecor and who works as an orthotist at the sheffield children's hospital. He is also the person who is working with Laura. He is extremely professional and ever so keen.
I won't start shouting from the roof yet re effectiveness of the spinecor, as I want to be sure that it is going to hold Laura's curve. But, so far, so good
13th July 2006, 10:34 AM
6 months (isn't time flying) review yesterday in Sheffield
initial quantec scan (out of brace) appeared to show some deterioration (18 to 22 degree), that was a bit worrying, although clearly this is a inprecise method with quite a margin of error :-? :-? :-?
review with mr mills, the orthotist, was quite positive, he was perfectly happy with Laura's position and "response", some minor adjustments made :-) :-)
next; x- ray in brace with consultant (mr cole) review after
Results; not bad with an angle of 18 degree in brace, still, although strangely enough had to battle to convince the consultant to actually measure the angle; "what difference does it make whether i measure or not????" He was in a rather awkward mood not really wanting to enter in any serious questions ("I have been a consultant for many years, you know") and quite dismissive of the spinecor ("I am only using it because this was what was used here when i started working here") and " where i was trained we never braced anybody, and just observed as "bracing hasn't shown to make any difference". Just what Laura wanted to hear ("why am i using this in the first place then") :nut: :nut:
Anyway, care and dedication of mr mills, the spinecor man did make up for it a lot, and at least, with regards to bracing we are getting what we want out of the department. A bit more constructive attitude of consultant would help though.....
I was happy at the end as at least we seem to be stable, even without keeping 100% to the wearing guidelines, we are still waiting for the big growth spurt though... :D :D :D
13th July 2006, 11:15 AM
That is so negative an attitude for your consultant to take. I can understand that you'd be furious. :evil:
Great that the brace seems to be working though. :-)
13th July 2006, 11:36 AM
:soapbox: I can't believe he said that in front of Laura!!! :soapbox:
The sad thing is that many consultants feel that way about bracing too Gerbo.
However the reason that bracing studies are "inconclusive" is the issue of brace compliance.Most people here who have genuinely worn their brace as prescribed will confirm that the brace held the curve or at least reduced the progression of the curve.
The vital thing is that the curve is not showing significant progression.This may be down to the brace or plain good luck.My feeling is that it's more to do with the brace as she's been growing steadily throughout all this with no deterioration.
I'd be reluctant to leave things to chance with my child.
Just because the centre where he trained didn't believe in the value of bracing doesn't mean it's the correct approach.
Don't let this consultation demoralise you in any way.Keep strong and positive for Laura.If the consultant doesn't believe in the treatment he's prescribing,then perhaps he should be looking at alternatives, it's a defeatist attitude.
A good brace will do little if not properly fitted, so therefore a good orthotist like Mills who believes in his product will more likely be successful than someone who takes a blanket approach to bracing and just shoves on a brace and hopes for the best.
Hope you're all feeling better after this unsatisfactory episode.
13th July 2006, 12:35 PM
Hope you're all feeling better after this unsatisfactory episode.
Thanks Pauline and Sins, Sins, you do have the habit of saying exactly the right things, and what you say reflect very much what i am feeling. I actually felt quite good overal yesterday, precisely because we are stable and we are at a level which has fluctuated, but not changed a lot over the last 2 years. This is really good!!
I am not sure yet how much confusion his remarks have created in Laura's mind, I'll have a good talk with her tonight about it all, she is a very clever girl soshe will understand that in a world where there are so many different opinions you just have to do what you think is best yourself.
We did make excuses for mr Cole, it was late, he was running an hour behind,he was tired, I was asking questions he did not know an answer to (that really throws consultants, do they feel threatened??),but the final, sad conclusion has to be; he is by trade a surgeon, and that is all he really is interested in and believes in.
I can live with that better than I could when we went to birmingham (where the attitude was not much different) simply because i believe we are currently doing as much as we can and are working with a brace which has a reasonable chance of some succes, and doesn't totally destroys Laura's teenage life.
13th July 2006, 04:45 PM
Unfortunately, no matter how bad it is for the patient to be on the receiving end, doctors do have bad days. I'm sure most people here know how fantastic I think Mr Webb is - he took me (along with your Mr Cole as I'm sure I've mentioned) from barely able to walk at all and in constant excruciating pain and gave me back my life. There is nothing I could ever do or say that would give thanks enough for that.
He has also at times been incredibly difficult to deal with. The worst was a clinic which was running horrendously late, and where over 50% of the xrays were missing - no one could find them. He was livid, and I scarcely got a word of sense out of him, other than for him to be very grumpy that I was there at all (the fact I'd demanded an appointment - I was trying to get them to hurry me up the list, as I had suddenly decompensated to the left by about 4 inches, rather than it being a routine one no doubt exacerbated it!) On the other hand, last time I saw him he was very pressed for time, because he had to get to London for something he couldn't be late for, but he took the time to see me even so (I'd requested to see him specifically, as there have been changes that meant I didn't want to just see another more junior doc again) and was lovely.
I know it can be easy to end up thinking that they just want to do surgery and of course I am sure that is true of some of them. I can definitely vouch for all the docs I've personally seen at QMC since my revision though, which is that they did not balk at doing the surgery which was essential to my well being, but with the problems I have developed since then they are doing everything they can to investigate, diagnose and conservatively treat precisely so that I can avoid more surgery for as long as possible.
I think when they've had a bad day where they've seen several patients where things are not going as they've hoped, that also leaves doctors prone to saying things they otherwise wouldn't. Between the fact that brace compliance is low, bracing is often not started until the curve is 30 degrees or more, and the fact that it is an art as much as a science to get the fit just right, there are any number of reasons for bracing to have low success. I suspect that if anyone ever actually researches it properly, it will be found that there are certain combinations of curve position, curve type and body type which also have significant impact on whether bracing is successful, but in the meantime it is probably extremely disheartening to find it working in far fewer cases than you would want it to.
So, not a good appointment in some ways, but as you say Laura is intelligent and hopefully you'll be able to sort things out with her, especially with how positive Mr Mills was about it.
I am positive that bracing should be pursued in far more cases than it is, and I am sure that you are doing the right thing. As someone who had their curve discovered far too late both in curve size and in skeletal maturity for bracing to be able to have any effect, I really wish it had been discovered early enough that I could have been braced. Considering my curve was definitely noticeably present by the time I was 8, but still only 60 or so degrees when I was 16 it was clearly fairly non-agressive and I am almost positive that early enough bracing could have prevented me from ever needing surgery. I do know that if I ever have children that if they too have scoliosis, I will want them to be braced rather than just watching the curve grow until surgery is the only option.
13th July 2006, 05:25 PM
Originally posted by gerbo@Jul 13 2006, 11:35 AM
he is by trade a surgeon, and that is all he really is interested in and believes in.
it's funny you say that, because back in my own bitter and twisted days (not saying you are, i was just a bit Kevin the Teenager when i was first diagnosed) i had that niggling in my mind over my own surgeon. however over time i've grown to appreciate him, and i've heard about how he works with other patients and learnt that he does take it on a case by case basis, and that he's very good at that.
right, personal anecdotes aside, i'll say something more supportive :D
i think anyone who asks questions, who wants to learn and who wants the best is doing the right thing. i hope that one day any curve will be deemed significant enough for attention, not just say a 50 degree one in a 3 year old child. it's good that we're in a position where we can choose a consultant who will treat us and that you're making use of that option.
i can definitely give a thumbs up that although i had surgery in the end, my brace prevented progression of my curves and made them easier to operate on, although i only grew a few inches between diagnosis and surgery so i would say yes, the main issues are compliance and skill of the orthotist. i don't think there'll ever be a conclusive study on this!
your situation sounds generally very positive. if you have to keep pushing to be treated better by your consultant, then so be it. good luck.
13th July 2006, 06:23 PM
your situation sounds generally very positive
that's how i see it myself, i was really quite elated coming out of sheffield hospital yesterday. The consultants attitude or behaviour didn't have influence on the treatment, so was in a way of little consequence.
It does make one wonder, why are we seeing a consultant surgeon in the first place if he is not particularly bothered about non-surgical treatment at this stage?
I think they are all the same, nice and caring and dedicated and skillful and everything you want if you need surgery.
Before that, they have a very dismissive/ non interested attitude towards anything non surgical, their eyes just glaze over when you mention the word "physio" or "exercise" and they go into this dismissive "I have seen and heard it all before-mode", and any challenge of their ingrained attitude, or dare i say quote of some scientific paper is taken as an insult to their own professionalism and very quickly you get put back in your place.
I am not bitter at all, just fascinated by it all, it doesn't really bother me anymore as we are doing what we want to do anyway, and up till now; reasonably succesful!
:D :D :D
23rd July 2006, 08:42 PM
I found the exact opposite with my surgeon, he really seems to want to avoid surgery. I always saw tons of kids in braces when I went to the clinic and he checked my sister at my appointments too, so that if she develops scoliosis, we can hopefully avoid surgery. In my case there was never any mention of a brace, even before I was put on the waiting list for surgery, but in hindsight this was a blessing, as a brace would probably not have been able to even hold my large, progressing curve.
But, Lisana souns like she is doing very well, I am glad that the spinecor is easier on her and that she doesn't see it as a big deal. It is also encouraging that your orthosist really believes in his product and takes the time to make sure the fit is correct and that eveything is going well. I am sorry to hear about your less that satisfactory appointment with your consultant, perhaps he was having a bad day but it is still disappointing. I hope that everthing is still going well!!
19th October 2006, 02:30 PM
just a quick update
Laura had 3 month review with mr mills yesterday, I wasn't there, having booked an evening in the theatre with my son ages ago (Bloodbrothers, fantastic musical set in Liverpool, lead woman was played by now elderly lady who in the 60's was leadsinger of the "New seekers" singing "I'd like to teach the world to sing, in perfect harmony", quite a famous tune at the time, and amazing how 30-40 years onwards her voice stil sounded exactly the same, anyway, i am digressing)
this was just spinecor adjustment, no x-rays, but reports were that mr mills was very happy, thought she looked good and measured her at 5 degree with scolimeter, (nothing to do with Cobb angle of course) lower than last time and according to him a level where you would consider not to treat yet if you would present first time.
As I have said myself before, scolimeter is a rather inprecise instrument and one must not get to obsessed with numbers, but still, it was a bit of a relief knowing that nothing appeared worse, considering she is growing a fair bit (25 mm in 3 months) and over the summer we had been rather easy going on the wearing of the brace (lots of dancing)
Encouraging, is what you call it, and most importantly, she is such a happy girl in the spinecor, compared to when she was in her hard-brace........
1) Spinecor, spinecor, spinecor
2) Lots of dancing and swimming
3) Once a week "torsorotation exercises" (was twice, but we just cannot fit it in)
4) Few times a week massage her muscles and try to stretch her over kind of an exercise ball, in essence trying to stretch the "tight" ligaments on the concave side of the curve, in order to improve flexibility and hopefully make the brace more effective
5) we've been given a set of exercises (on paper) by mr mills, developped in a spinecor clinic in spain, to "enhance" the effect of the brace. There is no published evidence that they make any difference and exercises are not being used anywhere else, they do look interesting though; basically by twisting and bending putting you in an as overcorrected position as possible followed by deep breathing to further enhance that. sounded a bit like schroth to me. Still have to properly start on those, ..... if we have time.......
still, we are all quite happy at the moment, stress levels have dropped a lot. we feel in safe and dedicated hands with mr mills, that surely helps as well :spin: :spin: :spin:
19th October 2006, 03:57 PM
Absolutely brilliant news Gerbo!
The fact that she's grown so much without a curve increase is very very encouraging.Any idea how much growth is left for her?
It really looks like all hard work and effort will mean she will avoid surgery.I firmly believe you'll both beat this thing.
19th October 2006, 05:31 PM
So happy for Laura and I hope the trend continues !!!! :clap: I think it's important to read about success stories otherwise this whole thing would be too damn depressing.
20th October 2006, 08:07 AM
Fantastic news Gerbo
I'm so pleased for you and your family its great to read some good news
20th October 2006, 01:03 PM
great news!!! I am so happy for you!
10th January 2007, 10:05 PM
6 monthly review today with xray in and out of brace. Not too unhappy as out of brace xray showed original T11 curve at 20 (from mid to late 20's), and in brace at 15 degrees. (whilst having grown 3.5 cm in 6 months), "cosmetically" she looked better than before
Slightly worried as we noted a compensatory curve to the left at about T7, which actually measured at 28 degrees!
However, However, mr mills thought this was purely due to action of brace and would disappear on discontinuation of brace; i.e. not develop into a permnent curve. Hope he is right!. Will write to de rivard though to see what he thinks
overal we felt quite good! :D :D
11th January 2007, 10:08 AM
Definitely sounds encouraging, especially taking into accoubnt the 3.5 cm growth.
Like you I would not rest until I discovered the reason for the compensatory curve. Certainly contact Dr. Rivard! It does sound plausible though that is is due to the spinecor and most likely is not structural.
11th January 2007, 02:12 PM
Dr Rivard reply to my concerns: very quick, very reassuring
> Mr Huisman,
> What you are describing to me is a
> completely normal evolution of this curve and the
> new secondary curve will not become structural. We have many
> cases like this and no one of those curve had become
> structural after weaning of the brace.
The secondary curve will dissapear without any effect on the primary curve
> Best regards
> Dr Rivard
11th January 2007, 02:41 PM
In that case it was an excellent appointment. Very good news indeed.
12th January 2007, 03:31 PM
it makes sense to me too. it seems a very common thing with scoliosis and my surgeon in his usual brusque manner managed to put this in a sentence whereas i'd give you a whole essay :D
"spines like to balance"
it's what they do. so if you have a structural curve, odds are you'll develop a compensatory curve too. but then if you eliminate the structural curve (because that would be the "stubborn" one), you are likely to lose the compensatory one too. i've had surgery on my bottom curve but not the top and like a lot of other patients, the top curve is almost nothing as a result of the bottom one being fixed.
glad to hear it's still going well, especially when Laura's growing at that rate!
12th January 2007, 04:20 PM
thanks, i always love encouraging remarks.
The other thing is that i have realised that one of the elastic bands, as part of the overal corrective action, pulls the rightshoulder down, which, if you think about it, would cause this "functional secondary curve" (i think) When the brace is taken off initially, this position (r shoulder down) is maintained Once she is out of the brace for a few hours, dancing, swimming, she looks very symmetrical and i cannot see a curve in her higher thorax (and her vertebrae are very prominent there, so i should) still, i have a good look in the pool tonight.
12th January 2007, 10:42 PM
I'm really pleased to hear your daughter is doing well in the Spinecore brace.
Do you have to travel to Sheffield each time for her assessment? It makes me realise how lucky I am to live in an area where there's a Spinecore consultant for the young ones (and a specialist surgeon for the geriatrics!)
Hope all continues to go well as she grows...and grows...and grows..!
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