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Hi Carol...

I’ve never heard of this happening before. You should definitely call Jo-An, who will certainly straighten it out.

Regards,

On 10/12/06 7:57 PM, " Carol " <dcvaughan@...> wrote:

Has anyone who had revision surgery have the orthotics department

calling you BEFORE your surgery to fit you for the brace? (Especially

CA since you used UCSF) This doesn't make any sense to me.

Especially since Joann the nurse said it would be done AFTER surgery. I

will try again to get ahold of Joann to verify that it's afterward that

they do this. Besides, we are not driving 250 miles one way just to fit

a brace!! They can do it the day I go up for pre-op in March if they're

supposed to do it before surgery!! I can't see how that makes sense

since I'll be shaped totally differently afterward!!!

Carol V (CA)

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Dear Carol,

I can see how this would be frustrating. Boy braces are sure different than when I was fourteen in 73, then about ten days after surgery they got me up( and I hadn't been up before that) and with two interns holding me up, one pounding on the base of my neck with a small plastic hammer like thing, tried to keep me from passing out while the brace guy wrapped me in plaster. Here I was naked as a jaybird in front of these two amazingly cute very young doctors, and all I could do being so light headed was tell them how cute they were. Looking back on it it's funny.

Following my decompression in 2000 I was fitted for my brace totally differently, all they did was use a tape measure , did some measurements, and were back the next day with a brace. That brace and I became long time friends since I wore it after three surgeries, for a total of a year. Makes me wonder if it was an off the shelf model, like you get the measurements and grab it off a shelf. I had very little problems with it, just got more wholes drilled in it for comfort, and a couple of edges shortened. My brace in the seventies which the did to my form was far more problematic, chaffing, sores etc. I think the softer materials they use now are far better.

I'd give them a call, surely if you do need to be fitted before surgery they can work with you to do it on your pre-op day since you have to travel so far!

[ ] TLSO Fitting

Has anyone who had revision surgery have the orthotics department calling you BEFORE your surgery to fit you for the brace? (Especially CA since you used UCSF) This doesn't make any sense to me. Especially since Joann the nurse said it would be done AFTER surgery. I will try again to get ahold of Joann to verify that it's afterward that they do this. Besides, we are not driving 250 miles one way just to fit a brace!! They can do it the day I go up for pre-op in March if they're supposed to do it before surgery!! I can't see how that makes sense since I'll be shaped totally differently afterward!!!Carol V (CA)

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, LOL on the plaster brace fitting story!! My worst and most humerous story from my surgury was when I was getting fitted for my brace after being in my body cast for three months post-op. I was told to stand, legs shoulder width apart, holding onto the sink in the plaster room for support while they sawed me out of it. They told me under NO CIRCUMSTANCES was I to move at all when the cast came off. So, at 13 years old, when they pulled the front and back of the cast apart, it soon became very apparant that they had not only cut my cast but my panties too!! They fell off and I was standing there, competely coherent mind you, and buck naked in front of two plaster guys! They ended up tying the panties back on!! It was INCREDIBLY embarrassing; BUT, I was so happy to be out of the cast, even for just a few minutes (they taped it back onto me until the brace was ready a week later) that I

didn't let the situation faze me! LOL Have a great friday everyone! Mal Kirkaldie <.Kirkaldie@...> wrote: Dear Carol, I can see how this would be frustrating. Boy braces are sure different than when I was fourteen in 73, then about ten days after surgery they got me up( and I hadn't been up before that) and with

two interns holding me up, one pounding on the base of my neck with a small plastic hammer like thing, tried to keep me from passing out while the brace guy wrapped me in plaster. Here I was naked as a jaybird in front of these two amazingly cute very young doctors, and all I could do being so light headed was tell them how cute they were. Looking back on it it's funny. Following my decompression in 2000 I was fitted for my brace totally differently, all they did was use a tape measure , did some measurements, and were back the next day with a brace. That brace and I became long time friends since I wore it after three surgeries, for a total of a year. Makes me wonder if it was an off the shelf model, like you get the measurements and grab it off a shelf. I had very little problems with it, just got more wholes drilled in it for comfort, and a couple of edges shortened. My brace in

the seventies which the did to my form was far more problematic, chaffing, sores etc. I think the softer materials they use now are far better. I'd give them a call, surely if you do need to be fitted before surgery they can work with you to do it on your pre-op day since you have to travel so far! [ ] TLSO Fitting Has anyone who had revision surgery have the orthotics department calling you BEFORE your surgery to fit you for the brace? (Especially CA since you used UCSF) This doesn't make any sense to me. Especially since Joann the nurse said it would be done AFTER surgery. I will try again to get ahold of Joann to verify that it's afterward that they do this. Besides, we are not driving 250 miles one way just to fit a brace!! They can do it the day I go up for pre-op in March if they're supposed to do it before surgery!! I can't see how that makes sense since I'll be shaped totally differently afterward!!!Carol V (CA)

Stay in the know. Pulse on the new .com. Check it out.

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Hi Carol -

It isn't quite clear to me.....are you saying that the Orthotics

Dept. DID call you to schedule an appointment? That would be very

strange being as your surgery isn't until March. I've never heard

of that happening before. And in answer to your question, no - I

was fitted after the surgery. But speaking of that brings up a sore

spot with me - please get in touch with me personally Carol, either

on IM or by e-mail, if you'd like to hear the story.

My Best,

~~

>

> Has anyone who had revision surgery have the orthotics department

> calling you BEFORE your surgery to fit you for the brace?

(Especially

> CA since you used UCSF) This doesn't make any sense to me.

> Especially since Joann the nurse said it would be done AFTER

surgery. I

> will try again to get ahold of Joann to verify that it's afterward

that

> they do this. Besides, we are not driving 250 miles one way just

to fit

> a brace!! They can do it the day I go up for pre-op in March if

they're

> supposed to do it before surgery!! I can't see how that makes

sense

> since I'll be shaped totally differently afterward!!!

>

> Carol V (CA)

>

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Yes, from the Orthotics Center at UCSF called to speak to

me Tuesday, but I was at work so my husband spoke to her. He

basically said he thought it was supposed to be done after surgery,

and also mentioned that we can't (and won't) drive 250 miles just to

get a brace fitted. She told him she was going to send a letter, and

it arrived yesterday (Thurs) and it says quote: " Please call our

office to schedule an appt. to measure for a TLSO brace (which you

will wear after(underlined) surgery) We'll need about an hour of your

time, and would like you to see Ken or Darrell here at our clinic.

Any questions please call! Thank you (signed) UCSF

I sent an e-mail to Joann Aguirre RN that met with us on Monday, but

I never got a response, so I just called and left her a message a

little while ago to tell her what they're doing. I told her to call

me back and let me know what the result is. I thought the whole thing

was weird, and so did my husband!! I can't see what good measuring me

now is going to do when my body will be shaped differently after the

surgery!! Especially now I have flatback and then it will have the

right curves and shape, etc!!!

Carol V (CA)

> >

> > Has anyone who had revision surgery have the orthotics department

> > calling you BEFORE your surgery to fit you for the brace?

> (Especially

> > CA since you used UCSF) This doesn't make any sense to me.

> > Especially since Joann the nurse said it would be done AFTER

> surgery. I

> > will try again to get ahold of Joann to verify that it's

afterward

> that

> > they do this. Besides, we are not driving 250 miles one way just

> to fit

> > a brace!! They can do it the day I go up for pre-op in March if

> they're

> > supposed to do it before surgery!! I can't see how that makes

> sense

> > since I'll be shaped totally differently afterward!!!

> >

> > Carol V (CA)

> >

>

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I have never had a brace before. The only thing I wore 30+ years ago

was a plaster cast. You mean they put you in it holding you upright

(standing)? I was told I couldn't be upright until the cast was put

on. I laid on a special " casting table " that had a wide strap on it,

and they basically plastered around you. They cut the strap off when

they were done, pulled it out and then they finished the cast off by

putting the stocking-like lining over the outside and putting more

plaster strips up to the outside edge. Then I was chin to hips in my

plaster suit for 9 months!! That thing weighed 15 lbs!!! I was so

glad to get out of it. But I had two new ones before the 9 mos was

over--every 3 months. They used a cast saw just like they have

now....they cut me up the sides and then pulled it apart. I guess my

underwear wasn't anywhere near where they were cutting!! Never had

that problem....too funny!!!! I was so glad I could finally take a

real bath/shower!! (does anyone remember the peeling skin afterward

and the itches inside where you couldn't reach??)

Carol

>

> Dear Carol,

>

> I can see how this would be frustrating. Boy braces are sure

different than when I was fourteen in 73, then about ten days after

surgery they got me up( and I hadn't been up before that) and with

two interns holding me up, one pounding on the base of my neck with a

small plastic hammer like thing, tried to keep me from passing out

while the brace guy wrapped me in plaster. Here I was naked as a

jaybird in front of these two amazingly cute very young doctors, and

all I could do being so light headed was tell them how cute they

were. Looking back on it it's funny.

>

> Following my decompression in 2000 I was fitted for my brace

totally differently, all they did was use a tape measure , did some

measurements, and were back the next day with a brace. That brace and

I became long time friends since I wore it after three surgeries, for

a total of a year. Makes me wonder if it was an off the shelf model,

like you get the measurements and grab it off a shelf. I had very

little problems with it, just got more wholes drilled in it for

comfort, and a couple of edges shortened. My brace in the seventies

which the did to my form was far more problematic, chaffing, sores

etc. I think the softer materials they use now are far better.

>

> I'd give them a call, surely if you do need to be fitted before

surgery they can work with you to do it on your pre-op day since you

have to travel so far!

>

>

> [ ] TLSO Fitting

>

>

> Has anyone who had revision surgery have the orthotics department

> calling you BEFORE your surgery to fit you for the brace?

(Especially

> CA since you used UCSF) This doesn't make any sense to me.

> Especially since Joann the nurse said it would be done AFTER

surgery. I

> will try again to get ahold of Joann to verify that it's

afterward that

> they do this. Besides, we are not driving 250 miles one way just

to fit

> a brace!! They can do it the day I go up for pre-op in March if

they're

> supposed to do it before surgery!! I can't see how that makes

sense

> since I'll be shaped totally differently afterward!!!

>

> Carol V (CA)

>

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Dear Carol,

The cast they made of me in 1973 was just a form they used to make my brace. I was very lucky, most patients in this time frame were casted after surgery not braced. That was the appeal for having surgery at UCSF, otherwise if we had gone with our local doc in Santa I would have been casted for a year. They did do the cast for my brace standing, so hard after being in bed following surgery for ten days, and then they got me up, and all I wanted to do was pass out. I thank my lucky stars I didn't have to be casted, the brace was bad enough, and I'm grateful I didn't go through what many of you did in our time frame, UCSF I guess practiced cutting edge treatment for the time.

My youngest daughter also has scoliosis, and I was with her for her casting to form her brace. They put her on a frame to put on. Dried very fast and then cut it off. Her brace when we got it had straps inside that pulled her rib deformity over, and in it they got a reduction of her curve from 30 degrees to 3, amazing to see by x-ray. She wore it 18 hours per day for a year. Our goal with bracing was stop the progression while she completed her growth. She came out of bracing with her curve holding at 28 degrees, and now we only have to go in once more in a year to check, and then in five years. I was so pleased to get through with her without surgery!

[ ] TLSO Fitting> > > Has anyone who had revision surgery have the orthotics department > calling you BEFORE your surgery to fit you for the brace? (Especially > CA since you used UCSF) This doesn't make any sense to me. > Especially since Joann the nurse said it would be done AFTER surgery. I > will try again to get ahold of Joann to verify that it's afterward that > they do this. Besides, we are not driving 250 miles one way just to fit > a brace!! They can do it the day I go up for pre-op in March if they're > supposed to do it before surgery!! I can't see how that makes sense > since I'll be shaped totally differently afterward!!!> > Carol V (CA)>

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I remember the itching and peeling skin inside the cast very well since it was one of the hottest summers on the Prairies that year and no air conditioners. I had a stick that I used to scratch my back by lying on my stomach on the bed. Though I hated the Milwaukee brace, I hated that cast even more.

Llweyn

From: [mailto: ] On Behalf Of CarolSent: October 13, 2006 2:05 PM Subject: [ ] Re: TLSO Fitting

I have never had a brace before. The only thing I wore 30+ years ago was a plaster cast. You mean they put you in it holding you upright (standing)? I was told I couldn't be upright until the cast was put on. I laid on a special "casting table" that had a wide strap on it, and they basically plastered around you. They cut the strap off when they were done, pulled it out and then they finished the cast off by putting the stocking-like lining over the outside and putting more plaster strips up to the outside edge. Then I was chin to hips in my plaster suit for 9 months!! That thing weighed 15 lbs!!! I was so glad to get out of it. But I had two new ones before the 9 mos was over--every 3 months. They used a cast saw just like they have now....they cut me up the sides and then pulled it apart. I guess my underwear wasn't anywhere near where they were cutting!! Never had that problem....too funny!!!! I was so glad I could finally take a real bath/shower!! (does anyone remember the peeling skin afterward and the itches inside where you couldn't reach??)Carol

..

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Hi Carol...

I think you already have this information, but I thought I'd share it

with the group. According to Jo-An...

" yes, this is a new change in preop prep: the orthotists are now

asking to have pts meet with orthotics sometime BEFORE surgery, even

if they cannot yet be casted because alignment will change too much.

This is something new at the request of the hospital, prosthetics and

MDs to smooth the post op brace fittings a bit. "

It will be interesting to see how that works.

--

> > >

> > > Has anyone who had revision surgery have the orthotics department

> > > calling you BEFORE your surgery to fit you for the brace?

> > (Especially

> > > CA since you used UCSF) This doesn't make any sense to me.

> > > Especially since Joann the nurse said it would be done AFTER

> > surgery. I

> > > will try again to get ahold of Joann to verify that it's

> afterward

> > that

> > > they do this. Besides, we are not driving 250 miles one way just

> > to fit

> > > a brace!! They can do it the day I go up for pre-op in March if

> > they're

> > > supposed to do it before surgery!! I can't see how that makes

> > sense

> > > since I'll be shaped totally differently afterward!!!

> > >

> > > Carol V (CA)

> > >

> >

>

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Interesting...on top of the change in the way your body will be

aligned after surgery...I dropped about 10lbs in the 2 weeks after

surgery.

The brace I went home with was apparently not as " form fitting " as

some of you had after revision. The strap that goes around mid section

was adjustable and the orthotist showed me and my hubby how to adjust

it if it got too tight.

As to the plaster cast of my childhood.....YUCK. Can you say

frankenstein? And how 'bout washing your hair with the hunk o' plaster

behind your head!!!

walking down memory lane....Cam

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I think this is an absolutely WONDERFUL idea , for if you

remember, I had such an awful time with Orthotics with my TLSO! It

never fit properly, and the guy was so horrid when I tried to tell

him so that I ended up asking for a different guy. Anyway, I think

it's great that they are trying something different, and distance or

not, you will benefit in going Carol because trust me - you have to

live in that brace for awhile, and you want it fitting right!

~~

> > > >

> > > > Has anyone who had revision surgery have the orthotics

department

> > > > calling you BEFORE your surgery to fit you for the brace?

> > > (Especially

> > > > CA since you used UCSF) This doesn't make any sense to

me.

> > > > Especially since Joann the nurse said it would be done AFTER

> > > surgery. I

> > > > will try again to get ahold of Joann to verify that it's

> > afterward

> > > that

> > > > they do this. Besides, we are not driving 250 miles one way

just

> > > to fit

> > > > a brace!! They can do it the day I go up for pre-op in March

if

> > > they're

> > > > supposed to do it before surgery!! I can't see how that

makes

> > > sense

> > > > since I'll be shaped totally differently afterward!!!

> > > >

> > > > Carol V (CA)

> > > >

> > >

> >

>

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hmmm, I haven't gotten a phone call from them yet..not gonna worry

about it. Will be seeing them in a little over 6 weeks anways. ;}

--- In , " Racine " <> " yes,

this is a new change in preop prep: the orthotists are now

> asking to have pts meet with orthotics sometime BEFORE surgery,

even

> if they cannot yet be casted because alignment will change too

much.

> This is something new at the request of the hospital, prosthetics

and

> MDs to smooth the post op brace fittings a bit. "

>

> It will be interesting to see how that works.

>

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Where I live the temperatures ALWAYS get above 100 degrees in the

summer. This year we had 112-113. But luckily we have an air

conditioner. When I had the surgery many years ago, my parents also

had an air conditioner. I was told by the nurses NOT to stick

anything pointy or sharp into the cast and poke around to try to

scratch an itch. They said it might open up my skin and then it could

fester inside there. So I never did that I can remember. I might have

once poked in the rounded edge of the flyswatter handle or something.

(They also did not wash or bathe me during the cast changes because

they said that could open up the skin also and it could fester in

there). I remember once I was hot so my mom turned her hair dryer on

cool and I had the hose pointed inside the cast as much as I could.

It helped. (Does anyone remember those old hairdryers with hoses and

bonnets?) Ah yes, the good old days!!!

Carol

>

> I remember the itching and peeling skin inside the cast very well

since it

> was one of the hottest summers on the Prairies that year and no air

> conditioners. I had a stick that I used to scratch my back by lying

on my

> stomach on the bed. Though I hated the Milwaukee brace, I hated

that cast

> even more.

>

> Llweyn

>

> _____

>

> From:

> [mailto: ] On Behalf Of Carol

> Sent: October 13, 2006 2:05 PM

>

> Subject: [ ] Re: TLSO Fitting

>

>

>

> I have never had a brace before. The only thing I wore 30+ years

ago

> was a plaster cast. You mean they put you in it holding you upright

> (standing)? I was told I couldn't be upright until the cast was put

> on. I laid on a special " casting table " that had a wide strap on

it,

> and they basically plastered around you. They cut the strap off

when

> they were done, pulled it out and then they finished the cast off

by

> putting the stocking-like lining over the outside and putting more

> plaster strips up to the outside edge. Then I was chin to hips in

my

> plaster suit for 9 months!! That thing weighed 15 lbs!!! I was so

> glad to get out of it. But I had two new ones before the 9 mos was

> over--every 3 months. They used a cast saw just like they have

> now....they cut me up the sides and then pulled it apart. I guess

my

> underwear wasn't anywhere near where they were cutting!! Never had

> that problem....too funny!!!! I was so glad I could finally take a

> real bath/shower!! (does anyone remember the peeling skin afterward

> and the itches inside where you couldn't reach??)

>

> Carol

>

> .

>

> <http://geo./serv?

s=97359714/grpId=15709830/grpspId=1705094709/msgI

> d=12040/stime=1160773772/nc1=3848645/nc2=3848443/nc3=3848533>

>

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I also heard that some bracemakers (for lack of the accurate name,

orthodic guy?) do take casts before hand and then adjust them. Agree

it sounds a bit backwards considering the desired outcomes we expect.

My TLSO brace with thigh cuff was measured in the hospital post

surgery and send to us once I was home. Needless to say it didn't fit

when it arrived and was overwhelming to us trying to put it on (read

tears). Once we were able to get to the bracemaker appointment a few

days later, he made adjustments for about an hour and we realized it

wasn't us. It's not awful, but it's not great fun to wear. I can do

it for this relatively short amount of time. It slows me down which I

suspect is part of its purpose.

Ideally, it would be great to have it measured and fitted while you

are still in the hospital if the doctors/nurses could get the timing

right to meausre and get it back in time before you leave. I hit a

weekend in the timing so that slowed things down for me. Then I was

getting antsy to get home so it didn't make sense to hang at the

hospital waiting for it.

I'm glad I held on to some old tunics to wear over it. And don't

forget tight t-shirt underneath it. It is fairly bulky under clothes

and sort of pokes out in places. I feel a bit like tweedledee (maybe

one step above tweedledum!)

Oh and an interesting experience, when I left the brace appmt, the

brace was on the outside of my clothes (just didn't switch them after

adjustments), but I noticed that people did stare and seemed curious.

I didn't say anything, but I did find it a learning experience.

Best,

Annette

2 weeks post surgery!

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Okay, I finally dug out the brace I left the hospital with and had

DH take some photos...they are in my photo section. Mine seems very

different from the molded ones some of you have. Please excuse my

hairdo...just finished working out and figured the black clothing

would give the clearest picture of it.

Anyway, it is very lightweight and pretty much just restricts you

from trying to bend anywhere midsection. And I believe that if I had

slipped or fallen anytime in the first 4 months it would have

prevented any flexing in that area, so I did wear it everywhere

outside the house for 4 months...and around the house probably for

the first 3 months when I was up and around. As you can see, it fit

over my clothes which I liked for 2 reasons....when I was going to

lay down I could just remove it and still be clothed, and when I was

out and about I liked having the visual clue/reminder for others

that I needed to be careful...as Annette says, people do seem to

notice. I remember when I was getting braver about what I could do

at my 8 week post op visit DrRand said if I could do it in the brace

it was probably safe...so that has given me a good visual imagry to

maintain even to this day.

This brace was very adjustable..the padded front plates slid up/down

and were tightened in their proper place by screws...and the back

band was adjustable as the midsection of the strap was 2 " velcro. It

felt pretty wierd to put it back on today....but it still fits. And

I remember putting it on for the first time and thinking how upright

I was...and today it feels normal!

Thats my trip down memory lane for today!

Cam

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Boy Cam, you were lucky have a brace with such an open design!! The

one they're showing us at UCSF is a solid piece front and back held

together with straps. Almost reminds me of my old cast!!!!(Shudder--

shudder!!!PTSD????)

Carol

>

> Okay, I finally dug out the brace I left the hospital with and had

> DH take some photos...they are in my photo section. Mine seems very

> different from the molded ones some of you have. Please excuse my

> hairdo...just finished working out and figured the black clothing

> would give the clearest picture of it.

>

> Anyway, it is very lightweight and pretty much just restricts you

> from trying to bend anywhere midsection. And I believe that if I

had

> slipped or fallen anytime in the first 4 months it would have

> prevented any flexing in that area, so I did wear it everywhere

> outside the house for 4 months...and around the house probably for

> the first 3 months when I was up and around. As you can see, it fit

> over my clothes which I liked for 2 reasons....when I was going to

> lay down I could just remove it and still be clothed, and when I

was

> out and about I liked having the visual clue/reminder for others

> that I needed to be careful...as Annette says, people do seem to

> notice. I remember when I was getting braver about what I could do

> at my 8 week post op visit DrRand said if I could do it in the

brace

> it was probably safe...so that has given me a good visual imagry to

> maintain even to this day.

>

> This brace was very adjustable..the padded front plates slid

up/down

> and were tightened in their proper place by screws...and the back

> band was adjustable as the midsection of the strap was 2 " velcro.

It

> felt pretty wierd to put it back on today....but it still fits. And

> I remember putting it on for the first time and thinking how

upright

> I was...and today it feels normal!

>

> Thats my trip down memory lane for today!

> Cam

>

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Dear Cam,

I'd trade braces with you any day! Mine was hot, and peri-menopause hit just after my last surgery, and when I took it off, steam would actually come off my body. I had the plastic one that was a form of my body, so I planned my surgeries in the winter, I can't imagine going through wearing that thing in the summer. I wore that sucker through three recoveries, a total of a year, and I threw it out when we moved to the springs with GLEE! Yours while not fun, looks much more comfortable. I wore my TLSO with a t-shirt, and if I was inside, let it show, didn't bother me. Other times I wore loose sweaters over it to conceal it, while out in public, but even then sometimes I'd go out with it showing. Glad I'm through all that!

[ ] Re: TLSO Fitting

Okay, I finally dug out the brace I left the hospital with and had DH take some photos...they are in my photo section. Mine seems very different from the molded ones some of you have. Please excuse my hairdo...just finished working out and figured the black clothing would give the clearest picture of it.Anyway, it is very lightweight and pretty much just restricts you from trying to bend anywhere midsection. And I believe that if I had slipped or fallen anytime in the first 4 months it would have prevented any flexing in that area, so I did wear it everywhere outside the house for 4 months...and around the house probably for the first 3 months when I was up and around. As you can see, it fit over my clothes which I liked for 2 reasons....when I was going to lay down I could just remove it and still be clothed, and when I was out and about I liked having the visual clue/reminder for others that I needed to be careful...as Annette says, people do seem to notice. I remember when I was getting braver about what I could do at my 8 week post op visit DrRand said if I could do it in the brace it was probably safe...so that has given me a good visual imagry to maintain even to this day.This brace was very adjustable..the padded front plates slid up/down and were tightened in their proper place by screws...and the back band was adjustable as the midsection of the strap was 2" velcro. It felt pretty wierd to put it back on today....but it still fits. And I remember putting it on for the first time and thinking how upright I was...and today it feels normal!Thats my trip down memory lane for today!Cam

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