PDA

View Full Version : How long Did It take to get brace Made???


France & Amelia
7th June 2009, 03:55 PM
Hi my daughter was diagnosed officially with a 36 Degree cob angle in March and prescribed a TLSO. We have been trying ever since to get one made and was originally told 2-3 weeks 10 weeks ago.

To make matters worse we live in Germany and so the language barrier has been a nightmare to say the least. Getting the initial consultant appointment was not too bad but its the manufacturers which are the problem. We went along at the begining of april and she had a cast taken and chose the pattern she wanted. When we went back last week for the first fitting they had made it out of the most vile paint spoldged hideous bright design in the world and my daughter is mortified. She is 13 and clearly conscious of her image and the possibility of teasing at school when she gets changed for PE etc. Its so uncomfortable too.

As I did not feel I could communicate effectively it took me about 5 days to get a translator who could communicate on my behalf. I went back last friday with the translator and the manufacturer said that he made it out of the material we chose (complete lie) but that it looks different because of the fact the image is distorted due to having to stretch the plastic over the cast! The reality is it looks different because it is not the design my daughter chose!!! He only showed the translator and myself one catalogue whereas when my daughter chose the design there were too. She even remembers one being in a ringbinder. The maker denied the existance of catagloue 2!!! I could not believe what I was being told, the man is a joke. My daughter was in tears and I was really cross and insulted. Did he think we had total memory loss??? Then he said it does not matter what it looks like because its worn under clothes!!! My daughter had to courage to say that it mattered to her (being a self conscious 13 year old) and that she would have to take her clothes off for PE so it is important she has confidence in the brace in the first place.

So now the compromise is they are covering it in leather! Quite nice plain pink leather but not what she originally chose.

So i just wondered to other people have problems with obtaining braces quickly, if so how long do they take and do they get a choice of colours and designs without problems. Honeslty if you could see this hideous design and colour - it is beyond belief.

Many thanks,

Frances

Amazed Jean
7th June 2009, 05:21 PM
Welocme to SSO. I hope your brace situation gets resolved with the cover change. It sounds as if the maker is just being a jerk!

GillyG
7th June 2009, 05:43 PM
Hello there :welcome2:

I'm afraid I can't comment on braces as such as I've never had one, but it does sound as if this guy was very rude and has a complete lack of empathy for your daughters situation >:|

I hope she finds the pink leather covering acceptable when it's done, although I can't help thinking - won't that make the brace even bulkier?

France & Amelia
7th June 2009, 07:06 PM
Hi thanks for your replies. I know, the covering in leather option seemed pretty strange to me too! Im concerned about how hot this would make it aswell, its going to be a layer of leather over the top of the plastic. I think he said something about reducing the thickness of the plastic but surely it cant be reduced too much as it needs to be rigid to be effective I would imagine? This is the first brace and already we are really angry with the makers. Im desparately trying to find an alternative place to attend in future.

My husband is in the army which is why we live in Germany and the medical facilities (apart from the drs on camp) are all farmed out to private german specialists, all independant of each other. Initially it was a nightmare just trying to book appointments with this manufacturer (because of my pigeon German) and then having the cast made was an ordeal for my daughter too. They pushed and shoved her all over the place. There was one guy who spoke a little german but the main man just sort of shoved her about in the positions he wanted her. The english paediatrician said about going to Great Ormond Street in UK but the practicalities of this with two other children, and a baby on the way plus a husband away is impossible! I wouldn't even have anywhere to stay and not sure if they would fund accommodation whilst we had various appointments - and what about school? The orthopaedic consultant is ok, quite happy with that service (again this is in a separate practice) and all of these places are an hour away too.

There has been no continuity of care throughout though, one hand does not know what the other is doing. Right down to the fact that I actually faxed a budget authorisation from the local manager of the GP practice to both the 'brace place' and the orthopeadic specialist myself. only to find out that the manager had no authority to write such a letter and the budget for funding all has to go through some english speaking german lady at a different hospital all together! Needless to say my complaint letter will be about 6 pages to-date. And... Im going to take a translater along to each and every appointment. The physio is a very nice lady but again, language is a problem.

Is uk any better for getting appointments etc, im totally left to book everything myself here and chase everyone around all the time. The original diagnosis letter just got filed in my daughters GP records. Nothing was done until i went in to find out how I go about getting the brace made. The orthopaedic specialist just gave me the brace companies business card! Plus the GP practice said I would have to pay for physio myself and claim the money back? Another untruth.

I dont mean to moan but it is so frustrating in every respect - phew now where's the chocolate???

BLONDIE
7th June 2009, 07:23 PM
Hi France & Amelia, Well I can obviously only speak from the point of view of having one made in UK, but I am sure it was only a couple of weeks between them making the cast and then having it fitted. They had to make a bit of an adjustment as it came up too high under the arms so it went back to be altered, but it was posted directly to us after that.
It must be a terrible frustration trying to get something like this done in a foreign country. The brace will be hot even without the added layer of leather. I presume they didn't cover over all the holes.
My daughter was almost 13 when she got hers. She opted for plain white but it still shows through if the material is thin. On the positive side sometimes I look at my daughter and I can't tell if she has it on or not, just got to stick to certain styles. She really didn't have any problem at school, the girls there already were her friends without the brace, so hopefully you won't encounter too many problems. It must be harder if you are starting a new school with one already.
The last year that she has had it has flown by and she is now having her op in just over three weeks. So I know it is difficult, but think of the alternative!
I sincerely hope things get sorted out for you.

France & Amelia
7th June 2009, 08:28 PM
Thanks debbie,

Amelia has been at this school almost a year now but she did not know anyone when we moved here. Its an army school so children come and go all the time too. Im going to have a meeting with the school once she has the brace. We are, in theory, meant to collect it next friday but now that it is being covered in 'leather' to hide the hideous vile patterns and colours the odious toad of a man made it out of, there needs to be additional budget authority from the army medical system and so Im not holding out any hope.

Call me cynical but this medical system over here is totally incompetant (for children of soldiers) and that on top of the ignorant brace maker is enough to make me want to scream. I do speak a little german, but not enough for situations like this. And my phrase book does not have enough swear words either!

Thanks again

Frances

greenhouse12
7th June 2009, 09:24 PM
I wouldnt be too happy at all in this situation and im 15!
If our going to have a brace have one with a nice design .

It would be best for her to wear a t-shirt for p:e (like before she changes) thats what i do , but its partially to do with my deformities and everyone wears a vest or t-shirt anyway .

The school should be informed definately because i have found teachers a lot more understanding for hospital visits and if im uncomfortable . Also its important because sometimes my teacher thought the impression i wasnt interested learning because i slouch which really did upset me .:(

Hope everything goes your way
Good Luck

BeckyH
8th June 2009, 09:02 PM
hi frances, welcome to SSO.

i'm pleased you've found us, it must be tough for you out in germany. i know it's a logistical nightmare and of course you have other children too, but i'd seriously consider transferring to the care system based in the UK. i can't speak completely for other patients but i was seen at the RNOH (as a lot of us have been or are still being!) in Stanmore (i think it even used to be a military hospital ages ago) and their expertise is second to none in the UK. they are particularly good with adolescent scoliosis. i was diagnosed aged 14 and followed a similar care pattern to your daughter - i had a TLSO from diagnosis until just before my 16th birthday. during that time, i saw my consultant every six months for check ups and after that i was seen anually. i booked myself in for surgery in march 2005 and had surgery that july. after surgery your appointments come quite thick and fast at first but they space out again after a few months. i know my surgeon has treated patients who have come from abroad, stayed for maybe two weeks and then flown home (i think to places such as the middle east, so hefty flights!)

do you think this would be feasible for you? the benefit to being treated in the uk would obviously be a linguistic one (though sometimes they do speak "doctor" or "hospital" rather than english :D but asking for a translation is easier!) plus if you happened to get moved back here you'd have a relationship with the hospital and the staff, as well as them knowing your daughter's case (i've just thought that i'd assume all her notes are currently being written up in german and if this is the case and you did move somewhere else, they'd have to be translated for her new care-givers).

it's a lot to think about, but now that you've found us you're not alone. i think you've been treated appallingly by the manufacturer's out there, it seems like the language barrier has been abused! i know how upsetting it can be to be a teenager, and i know that my mum and dad were affected by my scoliosis as much as i was. but i'm sure you'll all get through it, i think you're doing a great job of being a strong advocate for your daughter and i take my hat off to you.

a lot of members have shared problems with getting in touch with hospitals, consultants and secretaries and it can take some pestering, but at least we're doing it in our own language and hospitals in the UK also have something called PALS (i forget what exactly it stands for) - but it's basically hospital-based patient liaison who, in desperate times, will help you out (a few members have used them to great effect if they're getting no response out of secretaries which makes us all very angry).

France & Amelia
8th June 2009, 10:17 PM
Thanks Becky

Yep Im seriously considering the UK option but my baby is due in August and she will need open heart surgery too! Sometimes I cannot quite believe how we're coping with all this? I think we need a holiday! I can only fly for another 4 weeks so Im going to see how things go next week at the paediatric orthopeadic specialist here. Im going to take a translator as it really is such a struggle without. All the soldiers go to the same central hospital with a dedicated British outpatients dept with staff who can speak impeccable english. Unfortunately, they do not treat children, which is why we have been left to struggle alone in these independent practices all spread out all over the county. I do not think the 'Powers That Be' have any idea about how difficult it has been, which is why im compiling my lenghthy complaint letter. Luckily Ive kept a diary of steps Ive had to take and the struggles - just need to make sure I've enough ink to print it.

Ok the whisper chocolate bar is calling me from the fridge - its hard to be sad with chocolate to munch! Incidentally, Im not addicted to chocolate, its just a phase.

kind regards

frances

BeckyH
9th June 2009, 03:12 PM
hi again frances,

the only potential problem with getting seen in the UK is that you need a GP's referral. there are two ways you could possibly dodge this:

1 - pay for the first appointment and have it privately (this will cost around 200 for the consultation, the consultant can then transfer you to their NHS list). sometimes private appointments also require a referral, but as your daughter has already been diagnosed and is being treated, there can be no doubt about her need to be seen

2 - ring the hospital and plead your case! tell them exactly what you've told us - that you're really struggling with being abroad, that you know they're good and that you'd like to see a doctor there ASAP

without wanting to sound too bleak, i doubt that you'd get an NHS appointment before you reach your third trimester so my opinion would be that your best option (if you want to be seen before the baby is born) would be to pay and have a private appointment, if funds allow. it's disappointing that our free healthcare system only goes so far. however... again the begging route might work, there's no harm in trying - point out that you're in exceptional circumstances in that you're abroad and pregnant, but would like your daughter to be seen in your home country as it would be a lot easier (thinking about it further, if you did manage to get a consultation in england in the next few weeks, that buys you more time post-baby as it were, because amelia shouldn't need another consult for at least six months and that gives you more time to look after your newborn).

i realise that might all seem a bit jumbled, i hope you can come up with a solution! there's kind of a third option too and that would be to see if the german doctors will write a letter saying they recommend amelia be seen in the UK. here and in the states it's now pretty well accepted that people ask for second opinions (many of our members have done) because they believe they've either been sent to the wrong person or they just want to be more informed.

whichever way you decide to play it, you have options and you have our support :)

France & Amelia
9th June 2009, 03:22 PM
Well, just to add insult to injury the 'Brace Place' not sure what they call them went and cancelled my daughters appointment, they phoned me at 1pm. We were meant to go there today at 4 o'clock to see Version 1 (wrong design and now covered in leather!) They are apparently too busy and it is not ready. One person off sick another on holiday apparently. We are now on week 10, still no brace and will not get it at the earliest until week 11. That's if they do not cancel yet again with more excuses - I have lost the will!

Had to take comfort in a double decker chocolate bar this time, I am anticipating further cancellations so will take a whole bag of chocolate bars to work on Friday just in case.

The Joys!

France & Amelia
9th June 2009, 03:40 PM
Thanks Becky

Oops, I posted my message before reading yours! I do not think there will be a problem getting a referal as the english paediatrician here who referred us to the Germans, has already said he would if we want (as a result of all these problems). He was on about Great Ormond Street initially and then asked where i came from in the UK. My mum actually lives in Plymouth so Im not sure if there are any recommended hospitals in Devon? My mother-in-law lives in Manchester so I guess we could go and stay with her to see if there was somewhere up there? I believe the army will pay for the flights for me and Amelia. My problem at the moment is being pregnant and then of course the hear surgery on my baby. She is going to have her operation in a German Heart Hospital about an hour from here but not sure when this will be until she is born. And......... my husband has to go away so much, it is really almost impossible to plan anything. He is meant to be in afghanistan in October but because of the baby's heart condition I think they may let him stay here. The trouble is, we just dont know. Hopefully things will run smoother soon. I have complained to a top manager (english woman who works for the MOD in the german hospital) and she said she would investigate using alternative brace suppliers. Its all to do with how the MOD have contracts with but its not impossible to change.

There is no way we are going back to the current place once we have this brace though, not after all these issues. Oh no, i just thought do you ever have to have alterations on the same brace weeks/months after?? They will have to drag us there!

Thank you for all your help so far, its invaluable!

Did you say you ended up having surgery anyhow after wearing the brace and is this common???

Many thanks again

frances

BeckyH
9th June 2009, 03:52 PM
no worries, i think we were posting at the same time!

GOSH do have some good results with treating scolis but (and i don't know if anyone else will disagree with me here!) i think adolescents from the kind of catchment area are generally sent to stanmore and GOSH deal with young children and/or complex cases (stanmore do this too, but obviously if you're needing to be going frequently i think they try to send you to the nearest place). i live in sussex, as do a few other girls and there are some teens on here from kent too - obviously GOSH would be nearer to us all but we all got sent to stanmore. although this isn't as convenient for you geographically, this is where i think you should aim to be seen.

other adolescents on the forum have been treated at hospitals such as oxford, cambridge, birmingham and leeds, but stanmore is recognised as the national centre of excellence. if a child has to stay in hospital they do have on-site accommodation for parents, i'm not sure what the criteria is for you being allowed to use it (i know my parents didn't qualify as i was 18 when i had surgery).

on to your other question... whether or not you have surgery depends on how much your curve progresses. mine was bigger than amelia's at the time of diagnosis and although at the time i hoped it'd just go away, looking back i realise that surgery was always inevitable for me. in the US, they are more what i call "scalpel happy" and their lower threshold for considering surgery is 40-45 degrees, whereas here it's 45-50. the main reason for this logic is that curves of 40 and up progress even after the patient has finished growing, and in the long term this has implications on your health - it starts to affect your lung capacity and balance, rather than purely cause back pain. there are of course psychological issues which start to come into play too.

one of the key decisions in how to treat adolescents with scoliosis relates to the child's risser sign (these are numbered 0 to 5 and shows how much growing is left, they are read on an x-ray). it would be useful for you to try and find out amelia's, as it will give you a clue as to how much more she has to grow (during adolescence, scoliosis often progresses during growth spurts).

i can understand why this is all distressing, because you're dealing with this on top of issues to come with the baby :( i think the important thing would be not to let the MOD or whoever it ends up being fob you off with a referral to a non-specialist in the UK (many members get sent from their GP to a local orthopaedic surgeon who then has the authority to refer them to a scoli specialist - you need to skip this step!)

at the top of the "general discussions" forum there is a thread with a list of specialists who have seen our members or who we know deal purely (or mostly) with scoliosis - this gives you an idea of who to ask for a referral to :)

France & Amelia
9th June 2009, 04:15 PM
Becky, you are a font of much knowledge! I am more determined than ever to see a scoliosis specialist now rather than a general orthopeadic one (my spelling is terrible I change it every time I type.......... must check out correct spelling :D:D:D)

Im going to start writing my list of questions which I need to address. I will be in a better picture to plan the UK return once my baby is born and we know more about her heart. I am Mrs Medical appointment at the moment, next week we have 6 so far, Baby scan monday, optician, brace place and ortho on Tuesday, Midwife Thursday, and pre-school booster for my son. Plus I work - its crazy. I go for months with no appointments and then EVERYTHING at once. Next week is my last week at work though so I will be less stressed by the running around. I think my chocolate addiction is fully justifiable:D:D:D

BeckyH
9th June 2009, 04:21 PM
that sounds like a good plan.

i'm not always a font of all knowledge! we have a huge amount of regular members which is fantastic because between us we cover all bases. adolescent scoli is my thing because i've been there, but there are a lot of people who i can't help because i don't know much about congenital, infantile or juvenile cases, or being treated outside the UK! i also struggle to advise adult patients because again, i've not been there. so when someone comes along who i have an idea of how to help them, i do my best.

and everyone else who finds us, i just welcome and wait for someone more experienced to advise! :D

Curly Wurly
3rd January 2010, 05:45 PM
hello, i'm due to have a brace fitting next week. i have quite a few questions, and i wondered if anyone would be able to answer them.

What does the brace look like- does it do up with velcro? and what are you supposed to wear when you go for the fitting.

Also, i have a habbit of slouching in the direction of my curve because it's comfortable that way, but i suppose when i get the brace it will force me to sit up straight- so will this be uncomfortable for me for the first few weeks? Or maybe the whole time i have to wear the brace?

Are they hot to wear- escpecially in the summer months? do you avoid hot destinations for holidays?

My pain is quite severe at the moment, and the only thing that seems to give me slight relief is a hot bath. I often feel quite down, but i keep telling myself at least it's not something worse! my curve isn't as severe as some people so i wondered why i suffer with so much pain? I've heard of something called a tens machine and was wondering what it is? And would it be wise to ask for one when i go for my brace fitting?

what about exercise? Are there any exercises that are useful?