Re: anyone had inaccurate x-rays?

[Guest guest]

I would request they re-do the xrays. Obviously the dr isn't concerned, but to give YOU peace of mind, have them redone and make sure they do them properly. The child shouldn't be hopping all over the place - although that can be easier said than done! :-)Gail "In a study, scientists report that drinking beer can be good for the liver. I’m sorry, did I say “scientists”? I meant “Irish people.” -Tina Fey ************************************************ Mom to , 11/28/98 - ADHD/ODD/SID and , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital 3/21/05, VEPTR Expansions: 11/05,

04/20/06 & 6/12/08

Subject: anyone had inaccurate x-rays?To: infantile_scoliosis Date: Friday, June 6, 2008, 4:23 PMHi everyone, it's Jill again. I have not been able to

get the image of 's x-ray out of my mind the past

two days. I told you he was standing, looking over

his shoulder, sometimes on one foot etc. Needless to

say his spine looked really bad in the x-ray. Has

anyone else had this experience- that the x-ray was

not a true representation of what the curve was? Dr.

blew off the x-ray so I guess I should too. Wondering if you have any words of wisdom on this. His comment was something like, "With this x-ray I am

not even sure where to measure from." What do you

think that means? Just confused.

Thanks for sharing.

Jill

------------------------------------

[Guest guest]

I hope you read my previous post... Noelle had one at NYU 6 weeks after her first x-ray and it had her going from 39 degrees to 56!!!! But, we could not hold her straight to save ourselves.... The x-ray was a total waste!!!!! Stephjill wienke wrote: Hi everyone, it's Jill again. I have not been able toget the image of 's x-ray out of my mind the pasttwo days. I told you he was standing, looking overhis shoulder, sometimes on one foot etc. Needless tosay his spine looked

really bad in the x-ray. Hasanyone else had this experience- that the x-ray wasnot a true representation of what the curve was? Dr. blew off the x-ray so I guess I should too. Wondering if you have any words of wisdom on this. His comment was something like, "With this x-ray I amnot even sure where to measure from." What do youthink that means? Just confused.Thanks for sharing.Jill

[Guest guest]

Hi Gail,

I asked Dr. if we could redo the xrays with

laying down and he said, " Oh he was standing?...

Well, it won't change our course of action this time

so I would rather not expose him to the radiation. "

ugghhh... they don't understand... Now I have to wait

10 weeks and see then. In hindsight I should have

questioned it more with the tech. When I did she

said, " It says right here on the order- standing " and

then showed me. So I just said, " ok " I should have

said to call down to him real quick. I am mad at

myself! OH well.

Thanks for your reply!

jill

--- Gail Kimball wrote:

> I would request they re-do the xrays. Obviously the

> dr isn't concerned, but to give YOU peace of mind,

> have them redone and make sure they do them

> properly. The child shouldn't be hopping all over

> the place - although that can be easier said than

> done! :-)

>

> Gail

> " In a study, scientists report that drinking beer

> can be good for the liver. I’m sorry, did I say

> “scientists”? I meant “Irish people.” -Tina Fey

> ************************************************

> Mom to , 11/28/98 - ADHD/ODD/SID

> and , 02/02/02 - Congenital Scoliosis, VATER

> Association (vertebral and renal anomalies),

> Torticollis, Klippel Feil Syndrome, Fused Ribs,

> First VEPTR Recipient at Cincinnati Children's

> Hospital 3/21/05, VEPTR Expansions: 11/05, 04/20/06

> & amp; 6/12/08

>

>

>

> From: jill wienke & lt;jillwienke@... & gt;

> Subject: anyone had inaccurate

> x-rays?

> To: infantile_scoliosis

> Date: Friday, June 6, 2008, 4:23 PM

>

> Hi everyone, it's Jill again. I have not been able

> to

> get the image of 's x-ray out of my mind the

> past

> two days. I told you he was standing, looking over

> his shoulder, sometimes on one foot etc. Needless

> to

> say his spine looked really bad in the x-ray. Has

> anyone else had this experience- that the x-ray was

> not a true representation of what the curve was?

> Dr.

> blew off the x-ray so I guess I should too.

> Wondering if you have any words of wisdom on this.

> His comment was something like, " With this x-ray I

> am

> not even sure where to measure from. " What do you

> think that means? Just confused.

> Thanks for sharing.

> Jill

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

Steph,

OK you made me feel 100% better! I will stop

obsessing. We just got back from the pool- then I had

to give a bath to get the chemicals out. I think

he will be still trying to dry out tomorrow morning!

The swimming will have to be spread out more. Our

options for the next casting are July 31 or Aug. 14.

Which would you do? I would rather do the earlier

one, but my mom would have to go instead of my

husband. That would be much more difficult. What do

you think?

Jill

--- Kauffunger

wrote:

> I hope you read my previous post... Noelle had one

> at NYU 6 weeks after her first x-ray and it had her

> going from 39 degrees to 56!!!! But, we could not

> hold her straight to save ourselves.... The x-ray

> was a total waste!!!!! Steph

>

> jill wienke wrote:

> Hi everyone, it's Jill again. I have not been able

> to

> get the image of 's x-ray out of my mind the

> past

> two days. I told you he was standing, looking over

> his shoulder, sometimes on one foot etc. Needless to

> say his spine looked really bad in the x-ray. Has

> anyone else had this experience- that the x-ray was

> not a true representation of what the curve was? Dr.

> blew off the x-ray so I guess I should too.

> Wondering if you have any words of wisdom on this.

> His comment was something like, " With this x-ray I

> am

> not even sure where to measure from. " What do you

> think that means? Just confused.

> Thanks for sharing.

> Jill

>

>

>

>

>

>

[Guest guest]

Are his xrays generally lying down? I only have experience with standing ones generally. does very well, but it sounds as if the tech and the dr were not focused that day you were there!Gail "In a study, scientists report that drinking beer can be good for the liver. I’m sorry, did I say “scientists”? I meant “Irish people.” -Tina Fey ************************************************ Mom to , 11/28/98 - ADHD/ODD/SID and , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital 3/21/05, VEPTR Expansions: 11/05, 04/20/06 & 6/12/08

> > From: jill wienke & lt;jillwienke@... & gt;

> Subject: anyone had inaccurate

> x-rays?

> To: infantile_scoliosis

> Date: Friday, June 6, 2008, 4:23 PM

> > Hi everyone, it's Jill again. I have not been able

> to

> get the image of 's x-ray out of my mind the

> past

> two days. I told you he was standing, looking over

> his shoulder, sometimes on one foot etc. Needless

> to

> say his spine looked really bad in the x-ray. Has

> anyone else had this experience- that the x-ray was

> not a true representation of what the curve was? > Dr.

> blew off the x-ray so I guess I should too. > Wondering if you have any words of wisdom on this. > His comment was something like, "With this x-ray I

> am

> not even sure where to measure from." What do you

> think that means? Just confused.

> Thanks for sharing.

> Jill

> > > > > ------------------------------------

> >

[Guest guest]

It will be so much easier if my husband goes. He does

all the driving and my mom is emotional too, but he

can't make the earlier appointment (July30-31) I am

worried about spending too much time in this

waterproof cast. They seemed to use a lot of delta

dry underneath and it is like being wrapped in bubble

wrap. It certainly does not wick away the moisture.

I know there is no air getting in there. I worry his

body feels much like our hands feel when we wear

rubber gloves, but our hands are wet inside?! I am a

worrier, if you couldn't tell. Maybe I will ask

to find out which date he recommends. I have a

feeling he will say whatever we think as long as there

is no skin break down... but it is under the cast so

how will I know!

We will definitely get our brace made there. I do not

know if insurance will pay for it though. I need to

do some research on it. This insurance stuff does

keep you on your toes!

--- Kauffunger

wrote:

> I would want my husband there... My mother is WAY

> too emotional and I personally can't handle her

> nerves and Noelle at the same time!!!! LOL But,

> your mom may handle it better... Can't you go July

> 28th-29th? LOL That works for me!!!!!! I talked

> to Jeff, the cast tech about the braces they do

> there and he said they look exactly like the cast

> with the stomach cut-out and everything.... I

> think, when it's time, we'll do our braces there,

> too. How about you? Steph

>

> jill wienke wrote:

> Steph,

> OK you made me feel 100% better! I will stop

> obsessing. We just got back from the pool- then I

> had

> to give a bath to get the chemicals out. I

> think

> he will be still trying to dry out tomorrow morning!

>

> The swimming will have to be spread out more. Our

> options for the next casting are July 31 or Aug. 14.

>

> Which would you do? I would rather do the earlier

> one, but my mom would have to go instead of my

> husband. That would be much more difficult. What do

> you think?

> Jill

> --- Kauffunger

> wrote:

>

> > I hope you read my previous post... Noelle had one

> > at NYU 6 weeks after her first x-ray and it had

> her

> > going from 39 degrees to 56!!!! But, we could not

> > hold her straight to save ourselves.... The x-ray

> > was a total waste!!!!! Steph

> >

> > jill wienke wrote:

> > Hi everyone, it's Jill again. I have not been able

> > to

> > get the image of 's x-ray out of my mind the

> > past

> > two days. I told you he was standing, looking over

> > his shoulder, sometimes on one foot etc. Needless

> to

> > say his spine looked really bad in the x-ray. Has

> > anyone else had this experience- that the x-ray

> was

> > not a true representation of what the curve was?

> Dr.

> > blew off the x-ray so I guess I should

> too.

> > Wondering if you have any words of wisdom on this.

>

> > His comment was something like, " With this x-ray I

> > am

> > not even sure where to measure from. " What do you

> > think that means? Just confused.

> > Thanks for sharing.

> > Jill

> >

> >

> >

> >

> >

> >

>

>

>

>

>

>

[Guest guest]

Check out the xray room. Do they have things for him to focus on? If not bring something. has been having standing xrays, well, since she could stand (but also remember, has congenital scoliosis so her treatment is different) They have stickers on the walls so they would say " can you look at the {bug, frog, Elmo etc}" or ", ok, it's time to put your arms out like enstein" and I would demo and stand in front of her to hold her arms up. Sometimes I would have to sit on the floor to hold her feet steady if she was in a fidgety mood.

You do what you have to do - just always make sure to wear the protective apron and let them know if you are pregnant!Gail "In a study, scientists report that drinking beer can be good for the liver. I’m sorry, did I say “scientists”? I meant “Irish people.” -Tina Fey ************************************************ Mom to , 11/28/98 - ADHD/ODD/SID and , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital 3/21/05, VEPTR Expansions: 11/05, 04/20/06 & 6/12/08

> & gt; > & gt; From: jill wienke

> & amp;lt;jillwienke@... & amp;gt;

> & gt; Subject: anyone had

> inaccurate

> & gt; x-rays?

> & gt; To: infantile_scoliosis

> & gt; Date: Friday, June 6, 2008, 4:23 PM

> & gt; > & gt; Hi everyone, it's Jill again. I have not been

> able

> & gt; to

> & gt; get the image of 's x-ray out of my mind

> the

> & gt; past

> & gt; two days. I told you he was standing, looking

> over

> & gt; his shoulder, sometimes on one foot etc. > Needless

> & gt; to

> & gt; say his spine looked really bad in the x-ray. > Has

> & gt; anyone else had this experience- that the x-ray

> was

> & gt; not a true representation of what the curve

> was? > & gt; Dr.

> & gt; blew off the x-ray so I guess I should

> too. > & gt; Wondering if you have any words of wisdom on

> this. > & gt; His comment was something like, "With this

> x-ray I

> & gt; am

> & gt; not even sure where to measure from." What do

> you

> & gt; think that means? Just confused.

> & gt; Thanks for sharing.

> & gt; Jill

> & gt; > & gt; > & gt; > & gt; > & gt; ------------------------------------

> & gt; > & gt;

[Guest guest]

Standardizing

the x-ray ray process for prog. I.S, is definitely a subject that will be discussed

at this years meetings/ETP’s. Many parents don’t even have a

baseline for their childs curves, because all docs are doing it differently

(supine, sitting & standing). When Olivia couldn’t stand, we

did supine. As soon as she could stand, standing films were taken.

She never had a sitting film.

HRH

anyone had inaccurate x-rays?

Hi everyone, it's Jill

again. I have not been able to

get the image of 's x-ray out of my mind the past

two days. I told you he was standing, looking over

his shoulder, sometimes on one foot etc. Needless to

say his spine looked really bad in the x-ray. Has

anyone else had this experience- that the x-ray was

not a true representation of what the curve was? Dr.

blew off the x-ray so I guess I should too.

Wondering if you have any words of wisdom on this.

His comment was something like, " With this x-ray I am

not even sure where to measure from. " What do you

think that means? Just confused.

Thanks for sharing.

Jill

[Guest guest]

That's a good idea.

's x-rays were always taken standing, and it's SO hard to get a

toddler to stand still - particularly when they're scared. Jack would

squirm and cry and then we'd have to do them over and over again -

subjecting him to even more absorbed radiation.

I definitely think there should be a standard protocol - we fought

tooth and nail to get the same x-rays every time and the doctor would

change their mind in the hallway (not Khoury - who does it the best

way, I believe, under anesthesia - for the stillness factor at least.

Granted, the spine isn't load-bearing at that point, but at least the

child is still and the exposure is minimal). Regardless, it seems

that while undergoing casting, it doesn't really matter what the

x-rays say until you get down to minimal/no rotation and are making

sure that early intervention has done it's job.

S