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Celia
05-23-2004, 04:10 PM
I was wondering if anyone out there has personal experience with the Milwaukee brace ? I was wondering if it helped your scoliosis curve at all ? Did it keep you from getting surgery ? Is there such a thing as a "low profile" Milwaukee Brace ?










Celia

Kyle88
07-01-2004, 06:30 PM
i believe i have one.....its under my clothes and its all under my arms......it doesn't show...only when i bend over and stuff...i have 2 curves....it may depend on the curve you have....

darcyhuff
07-01-2004, 08:14 PM
If you're talking about the brace that goes under your arms and doesn't show unless you wear tight shirts, then that's the one I may be getting. My doctor told me that it's good and won't affect your physical ability.

Angels Fan
08-12-2004, 10:55 PM
i've been wearing a milwaukee brace isnce feb.

Alison
08-13-2004, 03:16 AM
Yes there is such a thing as a low profile milwaukee brace. It is the one that doesn't have the metal ring coming up and around under your chin. I've only read about them (they aren't prescribed in Australia anymore) I think they are also structurally slightly different

Celia
08-27-2004, 07:12 PM
Thanks everyone for your great help.

Alison, do you know why the milwaukee braces without neck support are not prescribed anymore ? Is it because they don't work ? I was wondering if the neck piece is necessary to maintain the correction ? :confused:






Celia

Alison
08-27-2004, 08:08 PM
Strangely enough it was the basis of one of the discussions we had with my orthapaedic surgeon when we were discussing brace options (for the last lot of bracing). My major curve is very high up and would have been suited to trying a milwaukee brace with the neck ring, but my Doctor would not use them anymore and some of the reasons were

:Psychological impact from the neck ring was too great in comparison to the outcome that the brace achieved and patient compliance with the brace was often difficult to acheive: with the neck ring being very high up, extremeley noticeable and keeping you very "upright" what the doctors were finding was that patients were having many difficulties psychologically and on a social level

:Problems with jaw aligment: with the neckring being right up under the jaw they were finding that they were finding that patients jaws were becoming misaligned and that teeth were moving. And with the time the brace was worn also being during the height of "braces for teeth" wearing periods this created additional problems as the teeth were being pushed multiple ways.

:Could use other braces instead (such as a TLSO, low profile Milwaukee Brace): What the Doctors found that was even though other braces may not be quite as "effective" as a Milwaukee with a neckring the psychological impact and other problems from the other braces were very minimal. I know that some doctors prescribe "standard braces" with some extras that are similar to a Milwaukee with a neck ring that is similar in effectiveness but not quite the same.

From what I have been told (not from personal experience) is that a Milwaukee Brace can (with all braces it is always a can as some patients curves respond to bracing whilst others dont but depends from person to person) be extremeley effective in maintaing/correcting a patients curve as the curve is being held in place from the head down and not from the shoulders down as with most other braces. And especially with curves that are higher up the back. I know that they have not been prescribed in Australia since the late 1980's, but from what I have read here some doctors in America still prescribe them but not very often.

Alison

Celia
08-28-2004, 01:40 PM
Alison,

Thanks for that great post !!! Bracing isn't so straight forward - I'm looking for the "right" brace for my daughter, but there are so many variables that have to be considered. :(




Celia

Mary Lou
08-29-2004, 11:18 AM
Celia...

How old is your daughter? Please don't consider my daughter's experience as what will happen to your daughter if she gets a Milwaukee brace.

My daughter was diagnosed last August at the age of 12. Her ortho. prescribed a "low-profile" Milwaukee brace for her. She HATED it! It did not have a neck ring, but did have metal bars that came up over both shoulders which were very visible. Being in seventh grade at the time, it was very difficult to wear. She wasn't allowed to take gym class in it and she didn't want to go to the nurse every other day to have the nurse take it off and put it back on. She tried it for a few months and was then switched to a Boston type brace. She agreed to wearing the brace, but didn't do well with it either. She never did get to wearing either brace for the 23/7 that she was supposed to wear them. I think she just wasn't a kid who could deal well with a brace.

We are in the process of scheduling surgery for this fall. Some teens do very well with bracing. Others, like my daughter, I honestly don't feel are suited to wearing a brace.

I hope this helped. Trust your Motherly instinct and know that if she would need a Milwaukee brace, try your best to get her to wear it. If not, remember there are always other options. The Boston type my daughter wore wasn't as good as the Milwaukee, but if she had worn it, it would have been better than not wearing a brace at all.

Mary Lou

Alison
08-29-2004, 08:39 PM
Hi Celia

I had a bit of a search through your other posts to find out some of your daughters story. From what I read she is an Infantile Idiopathic Scoliosis baby; who is currently in serial casting and the next progression seems to be bracing. I am an Infantile idiopathic scoliosis baby who is now all growed up :-). Being braced from a young age (18 months old) I saw it as "normal" to wear a brace and didn't really understand that everybody didn't wear a brace too ;-) and many other parents found it strange that I didn't just sit in a corner whilst my mum wrapped me in cotton wool and that I loved to show my brace to everyone (I was known in kindergarten as the girl who had stickers alll over her body ;-). My brain and gut is telling me that with your daughter having been in casts for awhile and seems like she has adapted to wearing one well, whatever brace you choose, she will adapt to it just as she adapted to wearing casts and will make it a part of her, as young children especially are very adaptable to the oddities that life can throw at you. I know that now there are soo many different bracing options and treatments (especially in America, well that's what it seems to an Aussie, as there is only a couple of different braces here) with all their different variables, pros and cons to weigh up. And all you want to do is to try and make the "right choices" for your daughter (and it is such a long journey isn't it :-)

Alison

Celia
08-30-2004, 08:21 AM
Hi Mary Lou and Alison,


Boy is it EVER a long journey !!! My daughter will be four years old in October and I'm looking for a cure or at least something that will control any future progression. I know that as she gets older that it will be more difficult to convince her to wear a brace. I'm hoping - perhaps naively - that this will be all behind us in a couple of years !!! I so wish that she could have a normal childhood, free of x-rays, casts and braces ( let's not even talk about surgery ).

Alison, I would love to know how you fared through all of this. Do you feel any resentment towards your parents - that maybe they didn't do as much as they should have ? The reason I'm asking you this is that I wonder often times, whether my daughter will blame me for all of her ills and pains once she's fully grown.

Mary-Lou, I'm so sorry your daughter is scheduled to have surgery. You must be going through hell right now. Most kids have the view that once they have surgery, they're cured. But that's not always the case - especially when it involves the spine. I know there are people out there living pain-free lives who've had the surgery, I just wish they would post somewhere and let us all know !!



Celia

Alison
08-30-2004, 08:29 PM
I'll probably write this in two bits (will prob take me awhile to write ;-)

I had a feeling that you were going to ask me that ;-). Before I begin, I'll give you a lightning fast (the shortened version) history of my spine

Mid 1987 (15 months of age): Doc noticed my back looked a little "strange" when I was sitting on my dads knee at the doctors surgery getting vaccinations. Asked if some x-rays could be done and just like that a diagnosis of Infantile Idiopathic Scoliosis was made with two curves in the mid/high sixties (was seen as odd for the time, because I was the first case seem by my orthapaedic surgeon who did not have anything else "wrong" with them such as Spina Bifida and my surgeon had been practicing for 20 odd years)


End of 1987: Against my surgeons beliefs that my parents would be able to cope, they insisted they could (and they did) cope and I was put into my first brace 23 hours out of 24 each day.

From 1987 to 1992: My curves fluctuated, going up for a while, going down, going back up, then stabilising. In 1992, they were sitting stable at 23 degrees apiece (the lowest they ever got). I was moved into "night only" bracing for about a yearish, then they decided to take me out of the brace; to give my muscles a chance to "work" and that the spine was sitting stable. Was continued to be monitored every 3 to 6 months (I can't remember which it was but I know my xrays were only done every second visit to try and reduce my x-ray exposure)

Late 1997/Early 1998: At my review appointment (and yep still with the same surgeon, I had the same surgeon all the way through), my curves were starting to go on the increase (had been for awhile from what I remember) and were now back up in the fifties for one and high sixties for the other. My curves were becoming very stiff and non moving but still with rotation. They prescription was to put me back into the brace and give it "one last chance".

1998: However, getting a brace made was easier said than done. In Perth there are only two hospitals that can make braces, the childrens and the rehab hospital. I was being treated at the childrens hospital and for some reason the bigwigs decided there was "no money" to make the braces (hospitals in Australia are set up differently from USA), and there was no room and no money to make them at the rehab hospital. There was 12 kids including me waiting for them. Well after 6 months of arguments, my Dad going on radio and being told that it was all in his head (ha ha ha), my surgeon having a heart attack from the stress of it all, my Dad making a back brace making bed. Magically the money "appeared" and the braces were made. It will always be a what if, to whether in that crucial six month window I had been able to be braced earlier that my curves would have reduced, but you can't spend your life thinking about the what if's ;-)

1999: I was in the brace (I really don't know why looking back why they made me wear it It did absolotely nothing not even hold the curve because it was that stiff) for that year, and the decision was made that surgery was the best option to do next, and I was fused on November the 23rd from T2 to T11 (was a holding fusion only with only a degree of correcting due to the stiffness)

Well whoops, that was a bit long winded, sorry ;-)

Now my memories of my childhood. I remember it as an extremely happy one, despite my "tin ribs" I did everything that any other child would do and did not see there being anything "wrong or different" about me. My parents said that when I was braced the very first time I cried the first twenty four hours and so did they. Then they decided, it was going to be a long, long journey (spanned until the end of the year I was 17) and that there were kids much worse off then me and they were going to treat me no differently. I would hang up side down on the monkey-bars (wearing a dress the brace was in absolutely full view) oblivious to the staring I got from other parents, I do remember how vividly excited I was when I was allowed to finally wear a pair of sandals (I had to wear sneakers all the time for much of my childhood due to how my orthotics were made). I remember mum told me that I did ask her once, why do I have to wear a brace and my sister doesn't. And she explained it that your sisters spine is like this (put her finger straight) but yours is like this (bent her finger), and the brace is going to get your spine more like your sisters (and I was satisfied with that)

The one thing that I am for ever grateful for, was even from a young age my surgeon always looked at me when he spoke (even if I was too young to really understand) and explained things in a simple language, and I was always included in the decision making process as I got older. It probably did work againgst me slightly when I was going into the last lot of bracing, because I knew all the politics behind the reasons that I couldn't get a brace when I needed the brace so badly.

I know that I've kind of left it hanging, and haven't quite answered your question (I am still thinking about exactly the way I'll word my answer) but I will add the next bit soon.

Cheers

Alison

Alison
08-31-2004, 03:58 AM
Part 2:

I found going back into the brace for the last round of bracing, extremely difficult to cope with (I cried after we brought it home and Mum helped me put it on), I think it was because I knew that I was wearing a brace that in reality was doing squat all (sorry for the connatation) and that I was inevitably going to need surgery and the brace was just something to make me sweaty and gross (it was a strange looking brace also with them having one arm at normal position and the other one really high up). However I did wear it as I was supposed to (23/7) and right up until the week before the surgery.

I did learn many things from the years I spent in the waiting rooms of hospitals at the scoliosis clinincs. That the most diffiuclt in complaince with wearing a brace came from those who were diagnosed at about age 13/14, they were often in shock, and didn't want to be able to stop wearing their little skimpy tops and there mums didn't like seeing their gorgeous daughters in bulky pieces of plastic.

I think that the biggest factor that went behind my reasonable brace compliance in the last round of bracing was that I had great trust and respect for my orthapeadic surgeon (I had quite literally grown up with him and he had quite a big "Soft spot" for me and still does, and I had had the same people making my braces and orthotics all the way through). That I passively accepted wearing it because I knew that all that everyone was trying to do was the "best" for me.

Even though the four years I was brace free in between the two rounds of bracing, I'd have to term some of the best years of my life, because I was not hindered (not that I let the brace stop me doing anything I wanted) in any way and did not have to think about taking a brace on and off or what clothes I could buy, I would never be able to say that scoliosis "ruined" my life or it's all my parents fault they should have done something more. I knew (and still know today) that whatever my parents chose to do in regards with my back, they chose trying to make the absolute best possible decision that was available to me (Mum said that the final decision of surgery when I was 13 was the hardest decision they had ever had to make) and that even though I was the kid with the screwed up back who had to wear a brace, they never stopped me doing anything that I wanted to do, and never treated me any differently to my sister, to me, despite the brace, my childhood was normal and there were kids off a lot worse than me

But I did sit and think every so often (especially a lot when I was just about to have surgery and for the year after) why me?, why did I have scoliosis, what did I do to deserve it and that it simply wasn't fair. And once I got to high school (year 8 in WA), it took a lot of convincing with the teachers that I wasn't delicate, that they didn't have to treat me any different and i spent ,much time convincing. After my surgery, I spent each of the review appointments leaving in tears, and telling my surgeon on more than one occasion that its all his fault and getting frustrated being told that you can't do this, you can't do that. However I left the last review appointment for ever in tears for a different reason (tear still well up as I write this) because I knew I was going to miss my surgeon dearly, cause he really did mean so much to me and had played a huge role in my life.

A couple of years after my surgery (and a school change as well, where no-one knew about my surgery and had not gone through the recovery with me- I was not a sociable person for much of that time, and even became clinically depressed) and as time went on, I began to slowly to have absolutely no resentment (deep down I always had no resentment but sometimes i did not show it) towards my parents because what they did, was the best that they knew how to do or my surgeon, I do whatever I want to do in life (even if it is on the surgeon no-no list), and just fully accept that the rods are a part of me (I still have problems in one shoulder but thats just a part of life), and really if i want to do something, I will always find a way. And I am not ashamed of my scar, I like wearing scar showy off clothes, cause its entertaining to watch ppls reaction or trying to not look but really they are. I do feel that with it having been such a long journey and growing up pretty quick, that I am more mature than people my age, which is hard sometimes

Just an offside, until I hit puberty (which was about at 9.5/10 years age) my curves were sitting relatively stable, but once I got to the unpredictability of puberty, the curves began to go on the sharp increase, and my surgeon believes that if I hadn't been fused, they were likely to keep increasing (also mum and dad chose to do it at age 13 for a number of reasons including that my surgeon is getting close to retirement age, and they knew that I would not trust anyone else to do the surgery on my back, and being an asthmatic I would have had problems with my lungs)

This might seems strange, but I can actually understand your "hoping-perhaps naively", I can't actually express it in words, but I do understand where you are coming from.

I can never fully "let go" of my scoliosis journey or fully "move on",not because I resent any of the journey, but because it was such a humongous part of my life and with something that big, it is too hard to give it away. Might seem strange, but my career aspirations for university next year are to study prosthetics and orthotics (strange huh :-), but I want to be able to sit there and when I say the words "i understand that this brace will be dificult" actually really, really understand.


I know its a bit long winded and a bit choppy changey as ideas flowed in my head, but did I explain my answer to your question ok?


Alison

Ps as i think a bit more, I might add a part three

A couple of other thoughts

:I actually found it hard to come out of the brace at 7 ish years of age, I had grown up with it, and saw it as normal and that it actually felt weird to not have to wear one

:I read some bits in the Adult Boston Brace thread in the Non-Surgical section in the adults bit, why is it depressing about the Risser scale thingy (or is it because with your daughter being nearly four and the risser scale 1 not appearing before age 13 ish, that it does emphasise the "long journey"

:Except for a bit of some dodgy shoulders (from how the muscles were cut and replaced during surgery) my life is pretty much Pain Free, when I'm really really tired or have been doing lots of stuff my back does get sore, but never ever painful

:The two post I wrote were some of the hardest things I have written in a long time, i had to think of things that I hadn't thought of for a long time, and consider emotions that I had pushed to the back of my mind. But I wrote it, because I thought it would give you a bit of an insight into a Infantile Idiopathic Scoliosis's baby's thoughts on various things who is now all grown up (well you don't meet one that is grown very often)

Celia
08-31-2004, 08:53 AM
Alison,

I'm sending you a GREAT BIG cyber hug !!!! Yes, you did answer all of my questions - beautifully. If you should decide to go into orthopaedic surgery, I know you'll be an outstanding doctor. Why ? Dr. Min Mehta, a world renowned orthopaedic surgeon also suffers from severe scoliosis. Like her, you will make this your life's work - and great things will happen.






Celia