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View Full Version : Spinecor brace- availble in the UK?


Mrs F
19th April 2009, 10:40 PM
Hi
I am new to this site and have been looking for more information about the spinecor brace. Does anyone know if it is available in the UK- my daughter has an appointment with the consultatnt in Sheffield on Tues 21st April 2009? We are going for a second opinion- at Alderhey, the view is very much wait and see, no brace at this stage but surgery likely. My daughter is nearly 8 with an upper single curve of 35 degrees. I want to do as much as I can for her and have read alot of positive reports about spinecor but is it available up north and has anyone been treated at Sheffied hospital with a brace as a child?
I'm also looking at the possibility of physio in an attempt to improve posture- can anyone advise on a private physio in Lancashire (we live in Blackburn) if my GP will not or can not refer.
Thanks for reading this- still learning how to make most of this site- I am something of a techno-phobe!

GillyG
19th April 2009, 10:53 PM
The consultants in Sheffield will prescribe the Spinecor, so you're coming to the right place :D It seems to get some very promising results and from what I've read is much better tolerated (and less traumatic on the child) since the bands allow normal activities (eg dancing) and the muscles are still used, which is another plus :D

sins
20th April 2009, 12:02 AM
A couple of members here have tried Spinecor in Sheffield.
Here's a thread to have a look through and see if it's of interest to you.
http://www.scoliosis-support.org/showthread.php?t=4898&highlight=spinecor
Nice to see you online!
Sins

Eve's Mum
20th April 2009, 05:11 PM
Hi there and welcome - my daughter (then aged nine) was diagnosed almost a year ago with a 45 degree thoracic curve and her surgeon first recommended immediate surgery, changed his mind three months later and then said give her a Milwaukee to buy time before surgery. Milwaukee braces are FOUL and have the lowest compliance rate of all (incidentally, hardly anyone uses them anymore because they are so uncomfortable). So, after much research, we opted for a month long intensive course at a scoliosis physio clinic and a cheneau brace - this is a fairly standard form of treatment in Spain and Germany where they operate only as a last resort.

Eve has to do 45 minutes of physio EVERY day and although it's not easy wrenching her from bed at 7am she does enjoy the activity and it certainly wakes her up. She's also just been fitted with a Cheneau brace on the NHS - as far as I'm aware this is a first in this country as most people I know have to go to Europe privately to have the Cheneau brace fitted. There's also another parent on this forum whose daughter Jessie has a Cheneau and his reports are as positive as mine.

This is a long way of telling you that Eve's x-ray taken on Friday - the first since she was diagnosed - has REDUCED her curve down to 38 degrees despite her surgeon's dire warnings that he would have expected it to rocket to 60 degrees. Yah boo sucks we all wanted to yell at him.

So - there are other braces available on the NHS but prepare yourself for a bl***y big fight! And if you team this up bracing with physio - and who's going to argue that having really strong back muscles is a bad thing? - then don't expect ANY support from your surgeon as regards to the physio. Ours almost threw us out when we said we were going to the clinic. The physios there were some of the most humane and understanding people I've ever met in this long and tortuous journey.


We're also in the north, up near Newcastle. Don't give up - get what your daughter needs, whether that's spinecor, boston or cheneau and fight to get it on the NHS. That's what we pay our taxes for.

mark
21st April 2009, 02:25 PM
Hi Eve's mum, who was your surgeon, i live up near Newcastle and am under Mr Gibson at the Freeman Hospital.

tonibunny
21st April 2009, 06:29 PM
I just thought I'd mention that there are still, in very rare cases, kids who NEED to wear a Milwaukee because they are the best option for them. I know of a child who is in one due to a problem with his intervertebral discs and needs the traction on his neck, a little boy who is fighting spinal cancer and has deveoped a curve because of this, a couple of children who have very high thoracic/cervical kyphoscoliosis which require bracing around the neck, and a man who wears one because he was badly injured in a car accident and has developed scoliosis following the physical trauma to his spine.

I think it's a bit unkind to anyone who HAS to wear one to describe wearing a Milwaukee as "foul" - wearing one truly isn't as horrible as it looks; I wore one for six years as a little child (from 4-10) and did everything that all my friends did without it hindering my life in any way. However, for straightforward scoliosis there ARE much better and kinder braces available today, and I'm aghast that Eve's doctor should have considered one for her. That is really shocking, and thank god she has a mum who went out and looked at alternatives for her!

Eve's Mum
22nd April 2009, 08:29 PM
Yes - I am SO sorry that I described the Milwaukee as 'foul' because I am well aware that there are people for whom it is effective and for anyone whom I've offended I am deeply sorry and rather ashamed. I guess that I was shocked that Eve's surgeon recommended it when she has a relatively straightforward, albeit 45 degree, curve when there are other, more humane and effective alternatives as we have discovered. Challenging surgeons tend to make ones language rather heated!

And just for the record, Eve's being treated at the James Cook hospital in Middlesbro'.

sins
22nd April 2009, 10:18 PM
As a former Milwaulkee patient you certainly have no need to apologise to me anyway:). I found it impossible to tolerate as it was badly designed,incorrectly fitted and prescribed to be worn only 12 hours a day.This was back in the 1970's.
I would class it as the type of brace to be used only as a last resort. If your doc prescribes this you have every right to enquire about other options for your daughter.Compliance is everything with bracing and if it cannot be tolerated then a brace left on top of the wardrobe will do nothing for a curve.
I think though that most modern braces whatever the type are easier to tolerate than any of the older ones.
I'm glad you had the gumption to get the cheneau and even more pleased to hear that it looks promising.You come across as being a brilliant advocate for your daughter.Well done.
Sins

tonibunny
23rd April 2009, 12:02 AM
Hi Eve's Mum,

No need to apologise or feel ashamed at all - I just thought it worth mentioning that there ARE still very rare cases of kids who need to wear Milwaukees for various reasons, so it's not totally obsolete, but as I said, for straightforward cases of scoli it's very much old technology these days and Eve is lucky to have a mother like you!

Toni xx

mark
23rd April 2009, 08:21 AM
Hi Eves mum, if your not any joy at James Cook it might be worth trying to get a referral through to The Freeman. Mr Gibsons a well respected surgeon and a nice man (frank, but nice)

I hope you manage to get what you want. Our kids are our world and its horrible to see them suffer. You sound like a really great mum

mark

Mrs F
24th April 2009, 06:53 PM
Thank-you every-one for responding to my thread with such thought and care. To udate you- we had something of a shock at Sheffield as was told that my daughters spine had increased from 35 degrees to 50 degrees in just 12 months. We are so upset.Mr Cole was very matter of fact and said that surgery is ineviatble, probably around age 11-12. He didn't promote the Spinecor brace and I have to admit that I felt relieved in a away as I think it would be such an intrusion and if surgery is ineviatble- what is the point? I also asked about physio and he said it was waste of money basically but as a scoliosis sufferer myself (50degrees) I am undergoing physio myself and agree that it can do no harm to strengthen the muscles in the back. Eve's mum- can you give me a web address so that I can make some enquiries. How can I persuade my GP to make a referral within the NHS if this is not supported by a surgeon? Where can we get information about a cheneau brace?
Thanks again for your suggestions- we value them so much

andrea
24th April 2009, 07:03 PM
Hello there. I'm so sorry you've received such news. I know only too well the devastation that comes with a scoliosis diagnosis in a young child. I believe that a spinecor brace wouldn't be used on a curve of 50 degrees in any case, although i am slightly concerned that your daughter is only 7 and is unbraced with a curve of 50 degrees (is that right?). She still has lots of growing to do. Even though you may think that a brace is pointless as surgery is inevitable, if the brace can halt the progression of the curve, the correction when she does have surgery will be so much better, and the kids really get used to braces relatively easily.

I hope someone can help you with details for the Chenau. Unfortunately I have no experience of the brace.

Andrea x

Sealy
24th April 2009, 09:27 PM
Mrs F,

I wholeheartedly agree with Andrea! At the rate your daughter is progressing, I doubt she'll have surgery at 11 or 12 but more likely within the next year or so.

I too am very upset, livid in fact, that the good doctor did nothing for your daughter when her curve was still 35 degrees; but given his professional judgement thought best to wait and do nothing. Perhpas he's waiting for your daughter's curve to progress to 100 degrees ...or when her internal organs become compromised? Juvenile scoliosis is very different from AIS (which is probably what you had) and surgery is *not* straight forward.

GillyG
24th April 2009, 09:54 PM
I'm so sorry you had such awful news :( I think the point about bracing is that it's only effective for smallish curves and maybe you daughter has already gone beyond that point?

Sealy
26th April 2009, 12:36 PM
I am aware of children undergoing treatment for juvenile idiopathic scoliosis who began treatment with bracing when their curves were in the thirty degree range and presently their curves are being held virtually straight with either the TLSO or the Spinecor brace. If these children can maintain this kind of correction throughout the adolescent growth spurt there is no reason to believe that they can’t avoid surgery. So your doctor’s statement that your seven year old daughter was destined for surgery with a 35 degree curve is not true. Barring a miracle, surgery is now certain with a 50 degree curve. Spine surgery on an adult sized adolescent is very different than surgery for a seven year old child.

Eve's Mum
27th April 2009, 12:44 PM
I agree whole-heartedly with all of the above. I feel like asking these flipping surgeons that if they saw a house on fire would they 'watch and wait' to see if it got any worse? There is a cynical part of me that asks whether they aren't just waiting until it gets so bad that they can't just dive in there. There is no doubt that now our surgeon is relegated to a signature on a piece of paper for Eve's 6 monthly x-rays (she's in a brace and it's going well, curve actually decreasing) then he's much less interested in us than when he was advancing growing rods surgery. Long-term conservative treatment must be SUCH a drag for them! I know I sound like a miserable, anti-doctor cow (I'm really not, I used to be a nurse and have a strong interest in science so know the value of good medicine) but this journey with Eve has proved to be a scarring one.

When I went back and read your first post I saw that your daughter is only little. If her surgeon's planning surgery when she's 11 what's he planning to do in the meantime, keep his fingers crossed? Sealy is absolutely right - curves can and must be stabilised and can be in a decent, well-made and regularly monitored brace. If it's rocketed already in a year you need to act urgently. Don't let anyone tell you that scoliosis is a slow progression. Bracing sounds barbaric but doesn't have to be. I was sick with anxiety just thinking about it but believe me the worry involved in wondering how she'll cope with a brace is NOTHING compared to watching your beloved daughter's body deteriorate. It is torture. In the event Eve was pretty relaxed about the cheneau brace. It was me who was the basket-case.

As all Mums and Dads on this excellent, thoughtful forum will tell you the only way to make a decision is to arm yourself with all the facts - it sounds straightforward but sadly is not. If you'd like to PM me I'll email over to you all the details of the Schroth physiotherapy that Eve does each morning, the Cheneau brace and how to swing it on the NHS, details of 'exceptional treatment' applications to your PCT for physio and details of a decent gin - it helps sometimes.

And thanks Mark for the recommendation at the Freeman. If it all goes t***s up with the brace/physio and we have to do surgery then I will come to Newcastle.

RugbyLaura
28th April 2009, 01:07 PM
Hi Mrs F,

I am shocked, amazed and very disappointed by the advice that you have had from Mr Cole - He is my daughter's consultant and I have always had a huge amount of respect for him and trust him completely with her treatment.

I think you need to get back onto him and ask him further questions.

This is not acceptable!

Laura

Sealy
28th April 2009, 05:00 PM
Oh, Mr Cole is your consultant? I'm very surprised too. He's been very good with Immy throughout the years and with her treatment. I hope we haven't been to harsh passing judgement on him. I'm sure there is another side to the story.

Mrs F
10th May 2009, 10:12 PM
Thank-you everybody for your responses- we have decided to opt for a spinecor brace and have an appointment for fitting in August at Sheffied
As my daughter's spine is already at 50 degrees, we know that surgery is inevitable but just can't just wait and do nothing!
The Spinecor may or may not make a difference- but we have to give it a go. We have to try and slow down the rate this curve is growing if we can- she is too young for surgery and has so much more growing left to do
If anyone out there has been in a similar position- please contact me
thanks

Mrs F
11th May 2009, 09:50 PM
Just to clarify
It was Mr Dorgan in Liverpool who was happy to see how things progressed when the curve was 33 degrees a year ago. hence the shock when Mr Cole said that it had detiorated and surgery was not only inevitable, but much earlier than I had ever expected ie 11/12 years when he predicts an 80 degree curve. I don't intend to be harsh or judge any consultant- they are the professionals in their field and I don't think they want to give false hope by firmly recommending one brace or another. Since my last entry (only last night!) we have decided to persue the cheneau brace option and a referral to Middlesborough where Eve's mum appears to have the support of her consultatnt. That's not to say that Mr Cole would not support us but if a consultant in this country has any experience of the cheneau brace then we want to speak to them. These are difficult decisions and I feel a real sense of urgency now. We have to try and do something just wish there were some definite answers!!

mark
11th May 2009, 10:41 PM
I'm glad you have finally managed to find a way forward. Fingers crossed they can do something for your daughter in Middlesbrough. If you can find away to stabilise the curve so isn't so large when daughter does need surgery the operation should less of an impact on her life

mark

GillyG
11th May 2009, 10:47 PM
You are doing absolutely the right thing to hunt down what is best for your daughter to keep her as stable as possible before the inevitable surgery. Good luck with whatever brace you choose to go with. :squeeze: