Xrays

March 10, 2004

Hi Kelley,

I just went to the local Hospital here and they copied the x-rays for me. There is a charge for copies but it was only $5.00 an x-ray for me. I wouldn't send all 14 just the ones that are of the spine. Call your hospital or the one that your Mom works at. If they give you a hard time be persistant and ask to speak with a manager. Anyways...hope this helps.

Has anyone measured her x-ray yet?

Crista

October 7, 2006

In a message dated 10/7/2006 10:10:51 PM Eastern Standard Time,

angie@... writes:

Just how many of you get xrays done for whatever reason and how often?

Just curious.

Only if there's a chance of pneumonia or other life threatening things. I'd

say less than every 5 years with this year being an exception.

Amy

Wife to Will 11/3/95

Mama to Olivia Isabelle 9/18/03

&

Phineas Maximilian 11/30/05

October 7, 2006

Just how many of you get xrays done for whatever reason and how often?

Just curious.

Kristal's experience made me wonder about xrays as a preventative " tool. "

IMO - I would only do xrays if need be; as for respiratory check ups if sick

or if injured like broken bones or severe pain that can't be located visually

or by hands-on inspections. I worry about too much xray exposure, so is there

any medical concerns to warrant my worry?

Angie

On Friday 06 October 2006 21:30, Kristal Koehler wrote:

> Hello, I thought I would add our TLSO experiences as well- we are from the

> Midwest- Kansas City, Missouri. Brett started wearing his TLSO (we called

> it a magic shell or a turtle shell) when he was about 1-1/2- within a

> couple months of his diagnosis. He honestly hated it with all his might at

> first until he realized it helped him sit up and he could play with toys

> instead of having to brace himself. He wore it about 4-5 hours a day, I was

> NOT consistent. He did not have a bad curve though, maybe 10-15 degrees.

> Then we came across this supposed life changing seating system when he was

> 3, a SSO seating system through Aspen in Colorado (which by the way I do

> not recommend for our SMA kiddos). It was basically a seating system with a

> built in TLSO that he had to be fitted for. My insurance denied this and I

> raised money for it with the help of organizations. We had the seating

> system for one year and we had to go have it fitted and refitted way too

> much within that year- and Brett's curve jumped from 10-15 to 35-40. I

> could tell the dramatic change in his curve, so we went back to get a new

> TLSO.

>

> We now get x-rays every 6 months but since Brett has been back in his TLSO-

> (about 2 years now)- the progression in his curve has been one degree. So

> for us, without the TLSO, Brett would have had to have spinal fusion

> surgery last year. Our doctors were actually pushing for it big time and I

> asked them to give us 6 months in a TLSO and if it progressed a lot, we

> would do the surgery. Thankfully, we have been able to postpone it- we get

> a check- up every 6 months. SO, I wanted to give you a background for my

> opinion- the TLSO is not proven to stop or slow the progression but in our

> case it did and I recommend you get one. Hope this point of view helps.

> Kristal

> Mom to Brett- SMA II- 6-1/2 years old

> Sponsor Brett for the 6th Annual RoeFest Cure SMA Race-n-Roll for FSMA:

> www.firstgiving.com/BJ

>

> Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm

> Learn more about SMA:

> www.fsma.org

> www.smasupport.com

> Re: Strength Loss After Spinal Surgery/ TLSO

>

> ,

>

> I have been wearing a TLSO most of my life. During an adolescent

> growth spurt I outgrew one right after it was made. Our insurance

> wouldn't cover another for 9 more months, so I went without. My spine

> went from about 80 degrees to 126 in that time. The TLSO did indeed

> restrict my chest but it slowed my scoliosis significantly. In the

> end, my severe scoliosis was bad on my respiratory system and is why I

> became a poor candidate for the spinal surgery. If you go without the

> TLSO (I loved going without it), I recommend keeping a very close eye

> on her curvature.

>

> All the best,

> Alana

>

October 8, 2006

Gosh, I know I've had hundreds of x-rays. I refuse almost all of them

now. Over the last 4 years I've had a number of emergency room visits

for urinary tract infections, screwy electrolytes, and dehydration -

all related to my kidney stones. Before a physician even comes to see

me they order a chest x-ray because I use a ventilator. I already know

I'm not congested. Also, my scoliosis is so severe that the chest x-

rays no longer reveal anything. To avoid unnecessary delays waiting

for an a x-ray that I'll only refuse, I'm sure to tell the intake nurse

to mark my chart with " x-ray refused. "

Alana

October 17, 2006

Pardon my ignorance, but is there a bad link between x-rays and SMA?

Alana <alrt@...> wrote: