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Thread: Late diagnosis of congenital scoliosis

  1. #1
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    Late diagnosis of congenital scoliosis

    Hi,
    I am relieved that I have found this forum.I am the mother of a 19yr old who has just been told she has c.Scoliosis. She has epilepsy and after a seizure (she hasnt had one since the age of 4) fell down and hurt her back which hurt for weeks.As a result I happened to find a wonderful chiropractor/physiotherapist who diagnosed her.We are all devastated and somewhat angry.She has had gait and leg problems for many years.We were told 10 yrs ago she had a 1cm discrepancy in hip height and has worn foot orthotics on and off.Teenagers cant be bothered! She has seen lots of doctors for many things over the years and NONE suggested c scoliosis. The chiropractor is AMAZED. So far we have been told she has 25* deviation at L3 more x rays are awaited.We have looked closely at our 16yr old son and I honestly think his back is worse- he has appointment at doctors today and we will demand an x ray. I am interested in anyone out there who had late diagnosis, what is the likelihood of further progression in adulthood (ie after skeletal maturity) for those with no intervention, and anyone that has relatives also with c scoliosis as it isnt supposed to be hereditary.Thank you so much.

  2. #2
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    Quote Originally Posted by sadmom View Post
    Hi,
    I am relieved that I have found this forum.I am the mother of a 19yr old who has just been told she has c.Scoliosis. She has epilepsy and after a seizure (she hasnt had one since the age of 4) fell down and hurt her back which hurt for weeks.As a result I happened to find a wonderful chiropractor/physiotherapist who diagnosed her.We are all devastated and somewhat angry.She has had gait and leg problems for many years.We were told 10 yrs ago she had a 1cm discrepancy in hip height and has worn foot orthotics on and off.Teenagers cant be bothered! She has seen lots of doctors for many things over the years and NONE suggested c scoliosis. The chiropractor is AMAZED. So far we have been told she has 25* deviation at L3 more x rays are awaited.We have looked closely at our 16yr old son and I honestly think his back is worse- he has appointment at doctors today and we will demand an x ray. I am interested in anyone out there who had late diagnosis, what is the likelihood of further progression in adulthood (ie after skeletal maturity) for those with no intervention, and anyone that has relatives also with c scoliosis as it isnt supposed to be hereditary.Thank you so much.
    Hi sadmom,

    I would recommend that you have your daughter (and son too) seen by an orthopedic surgeon who specializes in scoliosis and the spine just to verify the Cobb angle and make sure there is nothing else going on and find out from the orthopedist how your daughter should be followed in the future.

    Fortunately, most scoliosis curves that are less than thirty degrees at physical maturity don't progress in adulthood. Your daughter is most likely physically mature at this point. I think lumbar curves that have a translatory shift may have increased odds of progressing in adulthood if they are less than thirty degrees. The orthopedist would be able to tell you this type of information. But it certainly sounds like the odds are in your favor!

    I'm wondering why you feel your daughter has congenital scoliosis? Is there something about her spine that is not formed correctly? Or is it the leg length discrepancy?
    Last edited by Ballet Mom; 03-13-2011 at 09:31 PM.

  3. #3
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    hello and thank you for your response.We have been told that L3 is wedge shaped with what appears as an 'overgrowth' on the LHS or lack of segmentation(?).You can clearly see the deformity on her x ray.This has caused a bending all the way down-including her pelvis.We noticed something was not quite right years ago, and saw 2 podiatrist specialists because her gait was 'funny'.Our poor daughter has had 'issues' since her early caesarean delivery for breach presentation (her legs up towards her head).She had x rays because her hips were still cartilage and her legs have always 'over' rotated inward.She has epilepsy (mild) and endometriosis. Very clever, she is at university.But this has really knocked her (and us) for six.
    Now it appears to us that our son may be similarly affected - his spine is not straight and L3 looks very 'lumpy' when he bends right over.He too has seen podiatrists.We wish doctors had a holistic approach but they seem to treat exactly whats in front of them and treat mums as if they are neurotic loons. I feel no vindication for my years of going to the doctors with a continuous stream of problems.Perhaps the children will now see someone who will look at the whole person.We have now been told this is not covered by insurance as scoliosis is a chronic condition.I am warmed by your knowledge of the longer term prognosis and hope this is so-in any event we will remain upbeat for the kids sake.
    PS We are in New Zealand-emigrated from UK six years ago.

  4. #4
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    Did you see the notation, "c scoliosis" somewhere? That is just a description of what a single curve looks like.

    Congenital implies some malformation of the vertebrae.

    It sounds like you have yet to see someone who knows that they are talking about. Look on this list for a scoliosis specialist... chiropractors are not trained to treat scoliosis and might not diagnose it correctly.

    http://www.srs.org/find/

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #5
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    Quote Originally Posted by sadmom View Post
    We wish doctors had a holistic approach but they seem to treat exactly whats in front of them and treat mums as if they are neurotic loons. I feel no vindication for my years of going to the doctors with a continuous stream of problems.Perhaps the children will now see someone who will look at the whole person.
    Actually what you need is a board-certified orthopedic surgeon specializing in scoliosis, a specialist who knows what they are doing from years of experience. They are the only game in town for getting the correct information about spines.

    We have now been told this is not covered by insurance as scoliosis is a chronic condition.
    That sounds wacky. I would elevate it if I were you.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  6. #6
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    The SRS guys in New Zealand

    Michael J. Barnes, MD
    Domain Orthopaedics
    20 Titoki Street
    Parnell
    Auckland, 5 New Zealand
    Phone: 64 9 307 4281
    Fax: 64 9 307 4280
    Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/Infantile


    Haemish A. Crawford, FRACS
    Starship Children's Hospital
    Private Bag 92-024
    90 Greenlane Rd
    Auckland, 1142 New Zealand
    Phone: 09 379 7440
    Fax: 09 520 9636
    Specialties: Adolescent, Juvenile/Infantile


    John A I Ferguson, FRACS
    Ascot Hospital
    Auckland Bone and Joint Surgery
    Level 1 Private Bag 28912
    Auckland, New Zealand
    Phone: 64 21 510 413
    Fax: 09 307 8906
    Specialties: Adolescent, Adult Scoliosis, Degenerative Conditions, Juvenile/Infantile


    Bruce F. Hodgson, FRACS
    The Marinoto Clinic
    72 Newington Avenue, Suite 4
    Maori Hill
    Dunedin, 9010 New Zealand
    Phone: 00 64 3 464 0784
    Fax: 00 64 3 464 0802
    Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/Infantile
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #7
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    Quote Originally Posted by sadmom View Post
    hello and thank you for your response.We have been told that L3 is wedge shaped with what appears as an 'overgrowth' on the LHS or lack of segmentation(?).You can clearly see the deformity on her x ray.This has caused a bending all the way down-including her pelvis.We noticed something was not quite right years ago, and saw 2 podiatrist specialists because her gait was 'funny'.Our poor daughter has had 'issues' since her early caesarean delivery for breach presentation (her legs up towards her head).She had x rays because her hips were still cartilage and her legs have always 'over' rotated inward.She has epilepsy (mild) and endometriosis. Very clever, she is at university.But this has really knocked her (and us) for six.
    Now it appears to us that our son may be similarly affected - his spine is not straight and L3 looks very 'lumpy' when he bends right over.He too has seen podiatrists.We wish doctors had a holistic approach but they seem to treat exactly whats in front of them and treat mums as if they are neurotic loons. I feel no vindication for my years of going to the doctors with a continuous stream of problems.Perhaps the children will now see someone who will look at the whole person.We have now been told this is not covered by insurance as scoliosis is a chronic condition.I am warmed by your knowledge of the longer term prognosis and hope this is so-in any event we will remain upbeat for the kids sake.
    PS We are in New Zealand-emigrated from UK six years ago.
    I see. Well, according to the Scoliosis Research Society here in the U.S.:


    Congenital Scoliosis
    Prognosis

    Upon skeletal maturation, it is anticipated that most mild congenital scoliotic curves will not progress or be associated with back pain in adulthood.

    http://www.srs.org/professionals/edu.../prognosis.php
    I would definitely go see an orthopedic surgeon just to make sure your bases are covered, even a leg-length discrepancy might have an effect on curve progression if it's not corrected somehow, even if just with a shoe lift.
    Last edited by Ballet Mom; 03-13-2011 at 10:25 PM.

  8. #8
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    Thank you, I didn't realise- I just shortened the congenital bit! The chiropractor is a professor who is also a physiotherapist and has worked for many years with x-ray diagnosis and is a spinal specialist.I do however take your point and we will see a medically trained spine surgeon/specialist as soon as our doctor can refer us. This will be at our expense I think as we aren't prepared to wait months and its not covered by insurance.We understand that physio/yoga/etc will help again it all costs. Oh well you cant take the money with you to the great beyond can you!

  9. #9
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    Have you really been told that insurance won't pay for anything scoliosis-related b/c it is a chronic problem? I have not heard of that before. I realize you're from a different country but still, so strange that you have to pay for everything out of pocket.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  10. #10
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    Thank you Pooka1 and Ballet Mom,

    I had found John Ferguson's details on the web too- and he sounded eminently qualified so I will try to get them to him.I must admit to being in tears numerous times on my own because its just so much all at once - return of grand mal epilepsy ( uncontrolled absences and jumps) and congenital scoliosis diagnosis (possibly twice). I feel bad not noticing their backs ( daughter barely noticeable- son more so). I just keep on telling myself there are other people worse off and I tell them that too.I just hope that the other congenital things that go along with this aren't present also ( not mentioned this to the kids they are just too freaked out right now).But thanks to sites like this I know what they are and will insist on them being checked out.

  11. #11
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    Elisa et al, things are a little different here.We have state health but you have to usually wait a long time to see a specialist; but our system is not quite sink or swim to be fair.Perhaps as this is pretty important the wait wont be too long- so we will see.If its a long wait people usually use private health insurance ...and this doesnt cover scoliosis (Southern Cross).

  12. #12
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    Ahhh, okay, thanks for explaining. I hope you get everything sorted out and do keep at it. I know all too well about WAITING! I've been waiting almost 18 months now here in British Columbia Canada just to have my son LOOKED at for his severe scoliosis (110*) and it wasn't until I found this forum that I was encouraged to take a different route and look into a charity group called Shriners that I actually got an appointment with a spine specialist in January in Portland Oregon. He is scheduled for his first surgery on March 22nd at Shriners' Kids Hospital in Portland. We do have a Shriners hospital up here in Canada but it is in Montreal which is 3,500 miles away so Portland is much much closer.

    You will find a lot of information and support on this forum and if you're like me... you wish you'd found it sooner. But better late than never for sure.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  13. #13
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    Oh Elisa I really feel for you, I would be frantic. Thankfully you found a way forward.I wish your son, and family. the very best. We have a saying here 'kia kaha' which means 'be strong'.

  14. #14
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    Thank you! I am SO glad things are finally moving forward. You too will get the answers you're looking for and you won't be a 'sad' mom anymore. =)
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  15. #15
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    Quote Originally Posted by sadmom View Post
    I had found John Ferguson's details on the web too- and he sounded eminently qualified so I will try to get them to him.
    He does sound completely qualified but he seems to live in a "level 1 private bag." That sounds dicey. (smiley face)

    You will feel much better knowing what it going on with your daughter and son after you see one of these experts. It sounds like your daughter is likely out of the woods with the scoliosis if it is only 25* now at 19. Hopefully your son will be fine also.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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