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gerbo
17th October 2005, 11:25 PM
Eventually we did get the message that it was ok to have xray out of brace, that was good, no fight there. Eventual xray was taken PA, so that was good too, and i have a copy. Once we received the fat enveloppe i jumped in the toilet to have a look myself, and fortunately it looked similar tp previous one. this was confirmed by consultant who confirmed that there had been no significant change since oktober 2004, still round the 29 degree, still good. He also agreed we needed new brace as Laura has outgrown old one, so we were happy about that. Were i wasn't happy was that he just did not want to enter in any discyssion about trying harder to get more correction from the new brace; if this hardly correcting brace and our exercises have kept us steady, where would we have been with a better correcting brace??? For that matter didn't want any discussion and as my wife noted, never once looked at me. Must be too awkward!

Anyway, we wait now to see how the fitting of new brace will go (which will not be a boston as pressure pads cause to much irritation and ribdeformities in his experience (???????????) but an underarm brace of thermoplastic material, and how much correction we'll get out of that one.

Still wondering about Spinecor....

(it was Laura who remained enormously cheerful, reminding me not to ask strange questions, and to remove the wrinkles from my forehead, which appear when I ponder issues, which i do a lot during these appointments, and who only cried when she had to have her brace on after the appointment, and definitely did not want to discus anything afterwartds on the journey back home, thank god for storytapes!)

andrea
17th October 2005, 11:30 PM
Gerbo

It's good to hear that the curve has remained steady. Always good to hear, that one! And also good that they're going to sort her out with a new brace. I'm not too familiar with the sort of brace that you'll have. Your explanation sounds like a boston to me, but i'm not really up with all the braces out there.

Good to hear Laura coped well with it all.

Keep smiling. Sounds like it was good news to me!

Andrea

BeckyH
17th October 2005, 11:42 PM
i'm not too up on braces either but the padding in my brace seems to have done me no harm!

has Laura grown much since last appointment? could be a factor in the curve...what's her risser?

hope you get the appointment for the new brace soon

RosieRich
17th October 2005, 11:43 PM
That is great news that the brace has a least held the curve. There is hope for the rest of us!
:-)

RosieRich
17th October 2005, 11:44 PM
PS Has your daughter been in a Boston brace up til now?

Gadget
17th October 2005, 11:55 PM
Glad to hear it has held and that Laura was nice and cheerful. Sounds like non of the doctors were in a talkative mood today.
Good luck with your new brace.
Gadget xx

RocketQueen
17th October 2005, 11:59 PM
When u get the nu brace, will u take a photo to show us all? Becuase i'd like to see. I used to wear a Boston brace, but I have never heard of the newish one you are describing? x

sins
18th October 2005, 12:09 AM
I suppose gerbo, it wasn't a bad appointment!
The fact that she had a whole year's growth and no curve progression is very good.I see your point about more proactive bracing and would agree with you.
I cannot understand hoow a consultant would be so rude as to refuse to enter into a discussion about bracing and corection? Did he just sit there and change the subject or totally ignore your question?
Not sure about spinecor Gerbo, it's a bit controversial and you appear to be in the wrong country for it.
Is there any chance that you can get a direct appointment with the orthotist or try to chat to him/her when the new brace is being fitted?
Seems like that would be more useful than all the secretive consultants in the North of England.
Sins

gerbo
18th October 2005, 12:16 AM
Originally posted by marmyte@Oct 17 2005, 09:42 PM

has Laura grown much since last appointment? could be a factor in the curve...what's her risser?


4 cm since march, don't know about risser, still some growing to do

gerbo
18th October 2005, 12:19 AM
Originally posted by RosieRich@Oct 17 2005, 09:44 PM
PS Has your daughter been in a Boston brace up til now?
they call it bostonstyle, which it isn't, in a boston you can add pads on the inside after the initial fitting to put pressure on certain points to achieve additional correction. the one we have fits "hand in glove" and the correction you get initially is the correction you keep

gerbo
18th October 2005, 12:20 AM
Originally posted by RocketQueen@Oct 17 2005, 09:59 PM
When u get the nu brace, will u take a photo to show us all? Becuase i'd like to see. I used to wear a Boston brace, but I have never heard of the newish one you are describing? x
i will

gerbo
18th October 2005, 12:26 AM
Originally posted by sins@Oct 17 2005, 10:09 PM
Did he just sit there and change the subject or totally ignore your question?

HE MADE CLEAR TO ME THAT HE CONSIDERED THE QUESTION ANSWERED
Not sure about spinecor Gerbo, it's a bit controversial and you appear to be in the wrong country for it.

ACTUALLY, IT IS PRODUCED IN THE UK (ALTHOUGH IT ORIGINATES IN CANADA)

Is there any chance that you can get a direct appointment with the orthotist or try to chat to him/her when the new brace is being fitted?

I THINK THAT WILL BE THE NEXT MOVE INDEED


THANKS FOR ALL COMMENTS IN THIS AND OTHER MESSAGES, THINK YOU ARE ALL LOVELY PEOPLE

GERBO
REPLIES/ COMMENTS IN CAPITALS

Sealy
18th October 2005, 01:07 AM
Gerbo,

This is a tough one indeed ! How long was she out of the brace before the x-ray ? The good news is that she has grown and remained stable :clap: It's unfortunate most of these doctors don't have very good bedside manners :rant:

titch
18th October 2005, 11:52 AM
I would definitely talk to the orthotist - in my experience, the "techs" are sometimes more use than the consultants, in addition to which, the consultants often have next to no say in how the techs approach things.

Case in point - I have practically got down on bended knee (would have if I'd been able to get back up, you know? :lol:) and begged them to write me up for my xrays to be done PA - I've had a *lot* of xrays, and given I am an F cup, am far from small breasted, so the more exposure I can avoid, the better. I have also practically begged them to write me up to be xrayed in the digital machine in the kiddy end of radiology, as being a large person and fat, they simply can't get a decent picture of me in the adult one and more than once have insisted on taking a second film for no better results. The consultants I talked to about this were actually very sweet about it, but unfortunately all of them said the same thing - the only control they have is to request what bit is xrayed, and whether they want sagittal as well as coronal views. *How* it is done is entirely up to the xray tech. So since then I've been asking, begging and outright demanding the xray department to send me to the kiddy one each time. I've been refused once, and that was actually by the receptionist at the kids desk who told me point blank that they never use it on adults and she didn't know where I got such an idea :rant: Generally though, talking nicely to them works.

Also, I had full lung function testing done in the approach to my revision surgery. The tech was *lovely* - he went through everything with me, took on board the idea that I had lost a lot of height, explained everything thoroughly, and even calculated 2 sets of results, for my actual height, and my projected height. Fantastic bloke, he even thought it through and worked out why my results came out as they did, and how it matched with the curvature and the effects it had on me - all in all, while the results could have been better, it was very reassuring.

Then I saw the consultant a few weeks later. The results had been lost, never made their way to him, so he measured my height, took an FEV reading, and declared it normal (even though it was a little lower than the one the tech took, which was below normal even for my actual height). He also said he didn't know why I was there, that scoliosis doesn't cause lung problems. I differed with him, pointing out that I actually knew several people on oxygen and or bipap, so he said they must never have been treated. I pointed out they had been, and that scoliosis was known to cause restriction, to which he told me that only occurred at all with curves well over 100 degrees and which had been that size since childhood - again I differed with him. Basically, each time I backed him into a corner with my knowledge of the literature he modified his stance a little, but it was clear that actually I knew rather more about the actual risks than he did :evil: The tech was *far* more use than the consultant who was only good for simply being able to assure me that I wasn't at significant surgical risk.

I think you may well find that the orthotist is far more able to assist you with your concerns regarding getting maximum correction. On a completely random note, depending on how they do it, as it is not done under sedative/anaesthetic as it would be with a younger child, I wonder whether a muscle relaxant prior to fitting would be beneficial in terms of gaining correction with force, or counter productive in other ways? As I say, very random thought there.

Lizzie89
18th October 2005, 04:48 PM
im glad it wasnt too bad, but i hope this new brace can get a little more correction, no progression in a year at her age is good though.

Im sorry your doctor was abit of an... erm... muppet lol

:rox: stay strong :squeeze:

scoligirl
18th October 2005, 05:01 PM
As well as taking a photo of the brace you could take a photo of her x ray (when it is on the light box at the hospital, you can ask to see it again)
Then you can put the photo on here for us to see, and you have a copy of it for future reference of your own (if you ever need it?)

I found the curve looks different when you flip it the other way round, it's really fun! I do talk garbage!

Good news the curve has not gotten worse. I am learning to believe it is best not to think "what if..." what if we did that/this ......bla bla bla. But instead think what can we do NOW!!!!!! And it is great the curve has not gotten worse. Don't be afraid to ask that man/woman/docter person thingy more questions about the brace, if you want a discussion then discuss (its what you pay taxes for)

I wonder how much braces cost to produce?

BeckyH
18th October 2005, 06:00 PM
i could find out how much braces cost, i've got the bill for mine somewhere. i know xrays are 100-200 a time and my MRI was 1,000

titch
18th October 2005, 06:06 PM
The funny thing, if you can look at it that way, is that sometimes things cost the NHS more than they cost you to do privately :???: :nutter: