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marmyte
09-24-2005, 06:58 PM
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
09-25-2005, 12:54 PM
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
09-25-2005, 03:14 PM
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
09-26-2005, 08:07 AM
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
09-26-2005, 08:37 AM
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
09-26-2005, 09:04 AM
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
09-26-2005, 10:35 AM
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
09-26-2005, 10:37 AM
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
09-26-2005, 10:42 AM
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
10-13-2005, 04:48 PM
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
10-13-2005, 08:57 PM
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
10-14-2005, 04:14 AM
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
10-21-2005, 07:32 PM
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
10-21-2005, 10:08 PM
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
10-22-2005, 06:29 AM
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

Attie
10-24-2005, 07:17 AM
It seems that screening for scoliosis in the U.S. varies from state to state, with some states having more stringent guidelines than others. Here in NJ the school screening starts in 5th grade at age 10 (elementary school) and I believe continues every other year, but I'm not sure up to what age. (It used to be an annual screenning, but budget constraints made it every other year.) My daughter's scoliosis wasn't detected at school because she was 10 in 4th grade. But, thankfully when I took her for her annual checkup at age 11 her pediatrician detected it...it was 17 degrees at that point. Within a few days she had had an x-ray and within 2 months she started seeing a pediatric orthopedic who specializes in scoliosis. A year later (every 4 - 6 months she had another x-ray/check-up) the curves had jumped to 24/23 and she began wearing a TLSO brace...that was over 2 years ago.

The initial screening required her to stand with her feet together and bend at the waist, letting her arms hang down. In her case, you could see one side of her back was a bit higher. The doctor had some kind of instrument that she placed on her back to measure, but it is different from the way the ortho measures the curve.

Just a note about the brace: it has proved to be effective in holding the curves but this past summer there was an increase as she had a growth spurt and basically outgrew her brace! She had a new one made. Right now she's getting ALOT of time in her back brace as she broke her right leg a month ago and has had a full length cast (and now leg brace). Hope this helps!

KRIS ATKINSON
10-25-2005, 04:39 AM
I notice there are several of us who express concern about scoliosis going undetected. I have the same type situation: I noticed the rib hump when my daughter was lying down for a back rub for pain. The doctor had recorded 6 months earlier "no scoliosis." Her curve was 45 degrees when it was first "diagnosed", right after I saw the rib hump. I am assuming the curve may have been missed previously. I wonder if anyone is doing a study on this issue to prevent it from occuring in the future? As many of you are saying, either the schools that check for it are not reporting it to the parents, or even the medical community is not responding appropriately. This should be able to be changed somehow by some concerned parents. Kris

marmyte
10-25-2005, 05:26 AM
kris it's entirely possible that in your case, your daughter's scoliosis was undetectable (aside from using xrays) when the doctor examined her months before you spotted it. it's because of the rapid growth in adolescence and therefore the ability for change to occur quickly, that kids should be checked regularly (ideally every 1-2 months)

here in the UK there's such a huge fear of litigation culture that schools won't check for anything anymore. the health service refuse to put a screening system in place because they believe there are too many xrays and follow ups for not enough serious cases, and schools can't get kids to do the bend over test because they don't have the knowledge or the "legal right" (there's such a massive paranoia surrounding paedophilia it's untrue) i get to the point of frustration where i just feel like standing in the middle of the country and screaming "fine! let your kids suffer from decreased lung function and chronic pain when they're older!" to get something done and put in place is so hard, but i've decided i have to try

violinprincess3
10-25-2005, 02:15 PM
i live in the u.s.
my scoliosis was 'discovered' during a physical when i was about nine, and my school checked in 7th grade, when i was 11. i was excused from the testing (no need for it) but i think they have you bend over and can tell somehow. they do notify your parents because my friend was tested and they thought she had it, so they called her parents. if my scoliosis wasn't discovered during my physical i probably would have died from scoliosis complications by the time the school exam occured, so it's not really effective at all.

CaMom
11-22-2005, 10:59 PM
I live in California and my son was diagnosed at his 10 yr annual check up with his pediatrician. He told my son to bend over forward and he looked at his back. He ran his hand over it and noticed the hump on one side. We were referred to a spine specialist. At school they also check every year during physical education, one teacher actually used him as an example of what they are looking for. I'm not sure he was too thrilled.

CurvySAT05
12-08-2005, 01:38 PM
Our scoli screenings were done in 7th grade by our PE teachers. Mine was out on maternity leave so the substitute did the exam, but didnt know what she was looking for. I dont know if I had it back then, but they never told me I did.
I played sports in High school and when I would go to my GP for a sports physical he never mentioned anything about it. It was the summer before my sophomore year when I had another sports physical (about 4 months after the one with my GP) and our team doctor picked up on my curve about half way into my bend. About 2 days later I had x rays and saw my GP who said I did have scoli but it probably wasnt bad enough to do anything with. He bit his tongue when he looked at the x rays and saw that my curve was already 35*.
I was sent to an ortho specialist for scoli and he thought that I was done growing (at age 14). He never braced me and just put me in the "watch and wait" stage checking me every 6 months to 1 year. During this time my pain got worse and I became more and more uneven. He told me it was all in my head.
I finally got a second opinion and my curves had progressed 10* in about 5 months. I had the surgery to correct my curves and they went from 45* to about 14*T and 20*L.
I wish someone would have told me while I was younger that I might have had it. Maybe then I could have been braced and not had the surgery. I dont regret the surgery, but It should have been a last resort, after bracing...but my stupid ortho didnt think so.
UGH!!

gypsy
12-16-2005, 05:34 PM
Amanda - you shouldn't think of 'what might have been' if you wore a back brace. I wore one and it did nothing to stop my progressive curve. I'm not 100% sure about this, but I don't think bracing works most of the time at least from what I've read.

marmyte
12-18-2005, 02:27 PM
i think that's a bit of a harsh assessment, gypsy. i think it's more that there are a lot of factors involved in the success of bracing, and two of those are early diagnosis and skilled orthotics, as well as many more. it sounds like in your case (as in mine) you were diagnosed quite late into your growth, making your chances of effectiveness of bracing slimmer. but i agree that it's a little futile to think of what could have been :) however, this shouldn't stop us trying to change what happens regarding others in the future and their chances of early detection and treatment

rmcginnnis
03-22-2006, 11:58 AM
Well, in Texas they do school screenings in middle school. I have to say it's quite embarrasing. They took us (all girls together, then all boys) into the school library and made us take off our shirts. Then they stood us in front of a nurse and asked us to bend over. They just ran their hand down our back, said OK or not OK and sent us back to our class. This is how I found out I had scoliosis. Of course, that was 17 years ago, so I don't know if they do it the same or not.

green m&m
03-22-2006, 06:54 PM
Well, in Texas they do school screenings in middle school. I have to say it's quite embarrasing. They took us (all girls together, then all boys) into the school library and made us take off our shirts. Then they stood us in front of a nurse and asked us to bend over. They just ran their hand down our back, said OK or not OK and sent us back to our class. This is how I found out I had scoliosis. Of course, that was 17 years ago, so I don't know if they do it the same or not.

My school district took each student behind a closed curtained area... parents would have a field day if the school did what they did when you were screened.

2kids
11-04-2007, 08:03 AM
I teach at a middle school in Maryland. For 12 years, I have heard about how our school nurse and someone from the outside (public health nurse I guess) comes in to screen the 7th grades students for scoliosis through physical education classes. Therefore, I always thought my own children would be checked in 7th grade maybe even earlier in 5th grade.

This summer at my 12 years old (entering 7th grade) daughter's physical exam for camp, her doctor said she would check her for scoliosis. I thought whatever, great, she'll be checked now and in PE class. That's when we found out she has scoliosis.

I went to speak with our school nurse and head of the PE department regarding when our school screening will take place. The nurse explained that our school board has discontinued school screening due to the cost. Unbelieveable!! If they would have had screening in elementary school perhaps my DD's scoliosis would have been picked up sooner. The PE department head teacher is also outraged, as her own daughter was treated for scoliosis through middle and high school.

Anyway, obviously not all schools in the US or at least Maryland are screening. I wish I would have known this earlier. I am now telling friends and family to have their children checked at each visit to the pediatrician. We check kids for hearing and vision in elementary school. Why not this?

MATJESNIC
11-04-2007, 01:53 PM
Where I live, my children have been checked by their doctor every year at their physical. This is how we found out about our daughter's scoliosis. It is just routine where we live.

KJUNGRL2
04-02-2008, 12:35 PM
Where I am in the US screening is mandatory in the 6th grade. Thats how we found out about my daughter a while ago. Well sort of! She came home from school just horrified, crying and crying saying that they told her she had severe scoliosis! I was LIVID!!!! To say the least. I told her not to worry about it, they were not Dr's and that we would see her pediatrician and go from there. Well the next week we saw him and had x-rays done. And now a month later we are scheduled for surgery! To this day the school still has not notified me of anything! I spoke with the school nurse who assures me that my child would have never been told that! :rolleyes: And that a letter will come in the mail regarding this! Well I am still waiting for this letter!!!! :mad:

Randi_K
03-12-2009, 09:50 PM
Wow. reading this thread has made me realize how lucky I was to be an observant kid. I had the screening in my 6th grade gym class. They did it in the locker rooms at my school. I remember my gym teacher looked at my back first, and then called the nurse over to look at me after. They never told me specifically that they thought I had scoliosis, but I figured something was up since no one else got looked at twice.

I told my mom about it, and she decided to ask my pediatrician about it at my next yearly physical, which was already scheduled for a month or 2 later. My doctor noticed a minor difference in my ribs, and referred me to an orthopedic surgeon who found a 15* curve. I began seeing the surgeon every 6 months for x-rays and measurements. after 4 years of regular monitoring, my curve had progressed to a 60* c curve and I was scheduled for surgery.

I really have no idea if the school would have notified my parents, or if my doctor would have caught it if I hadn't told my mom about the screening. I'm sure I would have gone undiagnosed for a couple more years. I never wore a brace though, so I doubt it would have made a difference if it had been caught later.

My class was screened again in 8th grade, and I remember being used as an example of what they were looking for like someone else mentioned. I had already been to several checkups at that point, and had medical students and other doctors looking at my back in addition to my surgeon, so it really didn't phase me much.