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Nicki
20th June 2006, 05:37 PM
Hello all

I havent been around for a while, although I have dipped in and out to keep updated!

We went to see Mr Fairbanks at the end of May. Lucy had xrays and an ISIS scan, these were the first x-rays since she has been in her brace. We were quite apprehensive to see if the brace had held her curve or not.

When the curve was measured in May time last year it was 45 degrees, which is quite significant as she is only 9 years old. This time it was measured at 43 degrees. Mr Fairbanks has now confirmed that Lucy will definately have to have surgery at some point as the curve is so large and she still has a lot of growing to do. Not the news we wanted to hear but not a total surprise to any of us. He has said that we have to be careful not to keep letting her grow at the risk of the curve increasing and not being able to get the best possible correction through surgery.

The treatment will remain the same, Lucy wearing the brace and regular check ups at Oxford to monitor the progress. It is so frustrating that all we can do is keep our fingers crossed and hope for the best. I asked about physio but was only advised to keep Lucy as active as possible and not to stop her from doing anything she wants to do (it would be difficult to anyway!!) The physio said that she should practise standing straight in front of the mirror, to encourage her to be aware about standing straight and keeping her shoulders straight.

We have recently bought some vests from a company called Gillbert and Mellish which was recommended by Megans mum. They have made a lot of difference to the level of comfort Lucy has in her brace as she was getting some really nasty rashes under the brace since the weather has changed.

Lucy never complains though and excepts that the brace is part of her life. She has become much more laid back about who sees it when she is wearing it, and has a couple of friends that 'do her up' after PE in school. On the whole it doesnt really impact on her life as so far it has not stopped her from doing anything. She is still the chatty, happy little girl she always was! Not that I thought it would change her but I expected her to get angry and irritable sometimes and complain but she doesnt! Even in this hot weather she is still wearing it for over 20 hours a day which I think is fantastic. Her class teacher is an absolute gem and has really looked out for Lucy, she has allowed her to have a fan in class so that she doesnt get too hot which has been really helpful as her classroom can get very hot.

I have got some pictures that I will try to post, any suggestions on how I do it would be gratefully received as when I have tried in the past I have had no success!!

Phew! whenever I post on here it always seems to turn into an epic!!


Love Nicki x

Little Ali
20th June 2006, 05:47 PM
Wow! Lucy sounds like an amazing young girl! I remember when I was younger I couldn't wait to leave school when I wasn't being watched so I could take my brace off! I was very naughty! :idiot:

It's great that Lucy has a supportive teacher and lovely friends around her. It definately will help her cope. :-D

One question...how on earth did you get Mr. Fairbank to confirm specific details such as curve sizes?! He always avoids answering when I ask him questions like that! :hammer:

Nicki
20th June 2006, 06:09 PM
Hi

He didnt have much choice it was written on the xrays!!! :D

Nicki

sins
20th June 2006, 07:11 PM
Hi Nicki,
That was as good a result as could be expected.Good to see the brace is holding the curve well.I can understand how disappointing it must be to have to consider surgery later in life, but make sure she keeps wearing the brace in the meantime.She might just be tempted to say that if she';s to have surgery anyway, why bother with the brace.But a smaller curve can be surgically corrected than a larger one.
Hope it continues to go well for you both and keep us updated on Lucy's progress.
sins

newgirl
21st June 2006, 09:50 PM
Thanks for the update Nicki, good to know that Lucy is coping so well with her brace.
Nicola

gerbo
22nd June 2006, 03:59 PM
Nicky, were the latest measurements in brace or out of brace?. If it was out of brace, has she ever had an xray in brace? Do you know what level the curve is at?

Considering that it is thought she is going to get surgery anyway, have you thought at trying a different system (like the spinecor) to see whether you can get any further correction? (nothing to loose)

As you can gather from my earlier posts, our experiences with the spinecor have been fairly positive, and it appears that some people do extremely well in it (though not everybody, i am sure)

gerbo

Nicki
23rd June 2006, 12:36 AM
Hi Gerbo

The xray and measurements were taken out of the brace, Lucy has never been xrayed whilst wearing the brace so we do not know what level of correction it gives.

We have thought about Spinecor and looked on the website that (I think) you recommended and I have to say it does look a lot more comfortable than the brace Lucy is currently wearing. We asked Mr Fairbank for his opinion when we saw him in May. Both he and the physio we saw were quite negative, they agreed that it looked more comfortable and said that they had run a small trial with their patients and were surprised to find that the patients were not impressed with it and found that it caused discomfort problems. They admitted that the trial was small but the that it was not favourable to the people using it, although I did get the impression that they had used adults and not children.

As I understand it we would have to do it privately and as we do not have private health insurance and are not financially in a position to be able to do it ourselves we have not taken it any further. Another consideration is of course that Lucy is coping extremely well in the Boston Brace, apart from the hot weather causing a few rashes she has no problems at all. With all that in mind we have not really thought too much more about it.

I have tried to follow your updates, although I'm not sure I have read all of your posts, I would be interested to hear 'your scoliosis story' ie when was your daughter diagnosed, what degree was her curve etc.

Nicki x

gerbo
23rd June 2006, 10:17 AM
I would be interested to hear 'your scoliosis story

diagnosed just turned age 10 in febr 2004, xray in june 2004; 21-24 degree (depending on who was reading it) T11 curve, 3 months later progression to 26-29 degree; decision to brace taken, eventually got this febr 05 (TSLO, hrdbrace). Few months later; xray in brace 21 degree; looek into alternatives as it was less than in literature recommended 50% correction, consultant not particularly bothered about this.

After lots of "soulsearching, corresponding, literature search etc" decided to trial spinecor. Got a private appointment to try and asses suitability. This involved trip to sheffield, seeing mr mills, xray out of brace, fitting of spinecor and xray in brace. (cost total about 400 pounds) Correction achieved was 18 degree, as this was better than tslo correction and wearer comfort to Laura was superior, decided to go for it through referral on the NHS, so no further costs. Initial review now 2 months ago showed curve stable at 18 degree, awaiting already with increasing anxiety review in july.

They admitted that the trial was small but the that it was not favourable to the people using it, although I did get the impression that they had used adults and not children. Mr Mills of spinecor says they did not use it properly (as he would say I suppose) Somewhere in my previous posts on spinecor you'll find a letter he wrote to me about that (might have seen that already)

Decisions on whether to change approach are so hard as nobody out there can give you a definite verdict on what is best. Decision for us wasn't too difficult as we were not happy at all with management in our hospital and Laura hated tslo, any change was going to be good near enough. In your situation, where you and lucy are happy with brace, changing approach might not appear the most obvious to do.

Hope the above is of some help

gerbo

sins
23rd June 2006, 03:48 PM
There are now some pictures and x rays of Lucy in Nicki's gallery.
Thanks for sharing Nicki, she's a fabulous young lady.
Sins

RosieRich
23rd June 2006, 05:10 PM
Decisions on whether to change approach are so hard as nobody out there can give you a definite verdict on what is best. Decision for us wasn't too difficult as we were not happy at all with management in our hospital and Laura hated tslo, any change was going to be good near enough. In your situation, where you and lucy are happy with brace, changing approach might not appear the most obvious to do.

Megan is in a very similar situation to Lucy where the brace seems to be working, although there is still a chance that Megan may avoid surgery. That in itself makes the decision very hard. 1. The brace seems to be working so stick with it. 2. Would spinecor offer a better chance to avoid surgery. 3. Megan is perfectly happy in her current brace. There are 2 definate reasons for keeping the tslo and the spinecor is an unknown. But there is always the doubt- would it be better?

Just out of interest Gerbo, did the consultant you were under for the tslo do the referral for the spinecor brace?

Sam

gerbo
23rd June 2006, 05:44 PM
no, our GP referred us for a "second opinion" to sheffield childrens hospital where they only use the spinecor for teenagers. THe private appointment to mr mills prior to that was a self referral.

Little Ali
15th July 2006, 11:47 PM
She's very pretty! :-D

netty
27th October 2006, 01:30 PM
Hi Nicki, I'm Netty,mum to 13 yr old L.This site is all new to me, so probably going to get it all wrong! L diagnosed in June 06 with severe curve. Told be surgeon then before he did xrays or quantac testing that she would need 2 surgeries at least. She has a curve of 60 degrees and is still growing. Her bone maturation is at 0. Mr David Moore from Crumlin hsp is her consultant. For what its worth he totally disagrees with bracing. He says studies done show that after bracing the curve will appear anyway. As a rule of thumb andything under 30 degrees they will just observe and not need to do surgery. Anything over 40 degrees wont respond to bracing and will need surgery. We have been unable to get a second opinion. I dont know if Ireland is behind current medical best practice or what, but I find that on this site people are going to phsyio, chiro etc. All the things our consultant says are a waste of money.I'm just shell shocked. Other people must be getting benefit from these things.So what do I do? Has anybody heard of Mr Moore? We could travel to the Uk. We have Bupa cover here, but I dont know if that would cover us in the Uk as well.

DublinPauline
27th October 2006, 02:50 PM
Hi Netty
Welcome to SSO - I live in Dublin. :welcome2:
I had spinal surgery in 1979 when I was 13 for a 100 degree plus curve. I think the specialists do differ in their approaches to braces and surgery - it certainly might be worth your while getting a second opinion in Ireland at any rate. One mother who posts here has a little girl who has been treated by casting and brace in Temple Street - I'm sure she'll post here when she sees a new Dublin arrival. :D
Pauline

netty
29th October 2006, 11:55 AM
Hi. Pauline,
We've been told that L due for surgery in early '07. This might be ribs and spine or spine only at this point. We will be told more on 12 th Dec. I would feel so much happier if anybody else has had any experience of Mr Moore. He seems to be the new kid on the block! When I asked my GP for a second opinion he said to stay with this guy. yet he's not listed on the SSO site until I put him on.