plea for help concerning information on screening

[marmyte]

i'm from the UK and had single stage anterior surgery (fusion T11-L3) 10 weeks ago. over here, awareness of scoliosis is VERY low and screening is even less common.

i'm basically looking for comments from anybody in the US/canada on what their experience has been of screening (what has happened, how often and when, by whom etc) and even if your experience has been of a lack of screening (as mine is here)

any response would be gratefully appreciated, you can post here, or feel free to email me: yourmatemarmyte@hotmail.co.uk

thanks in advance, i look forward to hearing your stories

becky

[Alexandra]

My experience with screening is a bit on the negative side:
I didn't find out that I had scoliosis until I was 14, during a physical exam for sports. I was immediately sent to Riley Childrens hospital in Indianapolis, IN to begin my journey. My parents were curoius why the screening perfomed in school never detected my curvature, (which was very prominent at that point.) We went through the school records and discovered that my scoliosis was PRESENT all the way back to 1st grade! Their reply was that they are NOT required to inform anyone of the results! You can probably understand my frustration- especially since I will undergo surgery in December. I really wish the screening was enforced to inform parents of the results. Otherwise, what is the point?

[marmyte]

thanks very much for sharing - that is really weird!

the other question i should've asked is: how do they do it? i've heard in some parts of the US they shine a special light down your spine? but i guess that is done by the nurses and not the PE staff

[kates mom]

Like you, Alexandra, my view of in school screening is very negative. I am the one who found my daughter's scoli when she was 15. At that time it was very pronounced. When I inquired to her school about screening, they told me...and I quote: "Yes, she did have scoliosis for a few years, but it's gone now." I wish it did just go away like they said! I got NO notification from the school. Great system! I think it should be mandatory that the results of any in school screening (hearing, vision, SCOLI) be sent home to parents.

[Mary Lou]

Our school district checks our kids in seventh grade. My daughter was diagnosed at her 12 y.o. check up with the family physician which was about two months before the school would have checked her. Thinking back, I wish I would have waited until after the school screening to notify the school of Jamie's Scoliosis to see if they picked it up because, like others have said, it was very noticable by this point.

Mary Lou

[blairf83]

Hey Becky- I live in the US, and I think I wasn't screened for scoliosis past the elementary school years- 10 years old tops. I had to have annual physicals done by the family doctor to participate in school sports in middle school and high school, but scoliosis screening was never part of the exam.

[marmyte]

this is pretty frightening! like i said, we never had scoli screening (well, i was checked for it in my initial school medical when i was 4, but that's not compulsory) but we had hearing and sight tests and if the results were a cause for concern, they were ALWAYS sent home to our parents. i can't believe the information isn't shared. if the school won't do it, maybe the way to go is to clue your kids up and get them to share information with you, have them ask whoever is testing them for whatever that they let them know what happened. i had an eye test at 10 and the nurse told me i needed glasses so i told my parents. after i'd seen an optician and had glasses, we received the letter from the nurse telling my parents to take me to get a proper test - i think they don't rely on all kids being so forthright!

[nikyergen]

Crystal was scanned in grade school and had to have physical exams for basketball every year, let alone had to see the doc annually for her asthma. Oh, yes there were lots of x-rays everytime she would land in the hospital with pnuemonia and/or a severe asthma attack and none of them ever said a word. They would just ask if she had ever injured her back. She would say NO and they would say okay and go on their way. She has had MRI's and CAT scans because of other health issues, that we have now figured partly caused from her curves, and it was never detected. Even her GP didn't see it on her x-rays last December when she was in the hospital for x-rays, after we had already seen the surgeon at Shriners and been put on the surgery list. SHe could see it when I finally showed it to her. Great deal, I was educating the doctor. Makes a person feel real confident doesn't it. Finally took her to a pediatrician that was recommended last fall. An immediate referral to Shriners and things were well under way. Now with her back fixed, her other health issues have solved themselves. Her asthma not classified as severe any more. She is classified as moderate asthma. So, who do you blame for no detection. At least some of you have schools that didn't tell you or completely missed it. We had the medical society for years not picking up on it.

[marmyte]

that's incredible, but it just goes to show that doctors are often looking for what applies to them and not someone else's specialty. maybe they're not good at thinking outside of the box!

[cloggerx3]

i know over here in the US they screen us in middle school for scoliosis. in fact, my sister was checked today. they check it once a year for free. so they are concerned about us and having scoliosis.

[blairf83]

Not all places in the US Screen for scoliosis. A lot do not. I was never checked for scoliosis past my elementary school physical....

[HIMOM]

My daughter scoliosis was picked up by the pediatrician at a yearly physical. The worse was the pediatric orthopedic surgeon told us to come back in a year. Of course a year later the curve is T17, Lumber 30. Even the specialists aren't following up as well as they should.

[Kelly B]

I've always noticed when my daughter was little - when she would lay flat on her back that one side of her lower ribs would protrude a little........

I had her checked by her Pedeatrician when she had to get a check-up to start school. They checked her back by looking and feeling it, and said that there didn't seem to be a problem. However, they mentioned "asymetrical" back in medical records - which when we tried to change coverage she was declined (included 1 other error). We went back to the Docter's so they can re-check her back and again gave her a clean bill of health - even put it in a letter. I let it go - who am I to think different!!!!!

Fast forward 7 years - she has the Scoliosis screening at school in 7th grade, never heard anything - so didn't worry any!

The beginning of this year after it starts getting warmer and she starts shedding clothes, I notice her shoulder blade protruding a little & I do the Mom thing and tell her to stand up straighter and put your shoulders back! I remember my Mom telling me that, and I also said that to my son (you just tend to "sag" when your a teen)! Well, it seemed to work in the beginning then a few months later I think my gut feeling was telling me I knew something all along (what a hollow feeling). I got her to a Ortho Dr. who diagnosted her as 55-T and 54-L - he then refered us to a specialist, we did try him but am going with Shriners (as soon as we get that worked out).

Regarding the School Screening - I am soooo angry. After we knew what was going on - I went to her new High School before it started to look at her file - sure enough she "failed" she had an "F" for Scoliosis!!!! and they NEVER sent me a letter called - nothing. I was able to speak with the "New" Nurse a few weeks into school - to find out what the school procedures are sopposed to be - she said they ARE sopposed to notify parent s by letter! I told her we LOST a 1 1/2 years that we could have been ahead of this. I did tell her "What is the point - if there is no follow up". The Nurse that did her screening just so happened to retire last year - I wonder if there was any more kids that got "passed" by? I did ask the Nurse - she said she would check in to that!

Is that a law suit or what?

What I worry about - like in my case - it give parents and kids a false sense of security! Why do it if it isn't complete or correct?

Sorry for the length.

Kelly B

[nikyergen]

Aren't our school systems and health systems in the US incredible. I've been quite disappointed with them. Had another go around with the health system today. Took Crystal in for a broken tooth, can't get into a denist here on Friday because they are all closed. The doc (she was a real lulu) told her she needed to be seeing a dentist for this. Well, duh. Crystal just needed something to get her through the weekend so we could get her seen next week. Then she asked Crystal if she had any major surgeries. I had it in big letters on her chart about her spinal fusion. Crystal looked at me befuttled(sp). We told her that Crystal had a spinal fusion last March. She looked at us and asked what was a spinal fusion. Oh boy, talk about want to run as fast as you can. Crystal finally had to take her shirt off and show her the scar to prove to her she had a spinal fusion.

Great Systems we have here, huh.

Nikki

[Mary Lou]

Nikki,

RUN! RUN! Run as fast as you can away from that doctor! lol A doctor who doesn't know what a spinal fusion is? Now that's scary!

Mary Lou