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Thread: Congenital Scoliosis - T4-T5 in teenager

  1. #16
    Join Date
    Dec 2009
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    Norwich, UK
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    6
    Oh I agree, I do have a lot to be thankful for. I was extremely lucky that I received such good care from birth - i've had wonderful specialists who kept a close eye on me and stepped in to operate when necessary. I'm also lucky that while my particular condition is quite unusual and complex, it's not as severe as it could have been. I've always had problems with walking, but I did manage it (mostly with the help of walking aids). Other than that I had a normal happy childhood, did well at school and have worked all my adult life. I come from a close family, and drew a lot of my strength and can-do attitude from my mother. She'd just turned 20 when she had me, her first child, in the days before routine ultrasound scans so she had no idea there was anything wrong with me until I was born. But, rather than falling apart at hearing that I might not be able to walk, might not develop normally and all these other scary unknowns, she refused to believe that i'd be anything other than ok and was just so strong and focused - and still is - and I owe so much to her.

    Unfortunately i'm not doing so good right now and am back in the wheelchair - my chronic back and leg pain got so bad that a year ago I was hospitalised to get the pain under better control. Walking is just too painful and my legs have weakened further. I will shortly be undergoing another surgery - a 2 stage anterior/posterior spinal fusion T10-pelvis. Once again I can't be straightened so my curves will be fused as they are. The aim of surgery is to immobilise my spine and improve my sagittal balance (i'm rather crunched up in the body) in the hope that it will improve my pain levels - there are no guarantees, but i'm giving surgery a shot because it's the last resort and a chance to get off morphine and all the other meds I have to take and will hopefully be able to go back to work.

    According to statistics, mild SB Occulta is thought to affect as much as 20% of the general population, but most people with it don't have any underlying spinal cord or neurological problems and so don't even know they have it until it's incidentally spotted during an xray for something completely unrelated, as was the case with you and your son.

    I just need to say something about Spina Bifida though. It's a very variable disability and no two cases are the same. Myelomeningocele (open) SB is the most severe form, but even some people with myelo manage to walk - a lot of it is dependent on what level the lesion is at. It's a common misconception that babies born with SB will have some form of mental impairment - sadly, this is what parents-to-be are often told by obstetricians (who don't specialise in neural tube disorders - that's the domainf of neurosurgeons) when the SB is picked up on scans, which obviously causes a lot of distress. In fact, the vast majority of people with SB have average or above average intelligence - SB itself has no impact on brain development. Hydrocephalus often accompanies SB myelo, which if left untreated can cause brain damage, but as long as a shunt is fitted to drain the excess CSF very early in life, the brain can develop normally. I know several people with SB myelo (as well as the other types) and all of them did well at school and university and have jobs, living their lives like everyone else. Also, a lot of emphasis is placed on not being able to walk - some people who've never had a mobility impairment tend to think that walking is the be-all and end-all, and that people who've never been able to walk must be bitter and depressed about it and feel like they've somehow missed out on life. In many cases this just isn't true, and it comes down to the simple fact that you don't miss what you never had!

    Sorry for another long reply, and for drifting off topic somewhat, but I just felt I had to say a few things about SB

  2. #17
    Join Date
    Nov 2011
    Location
    New Albany, Indiana
    Posts
    25

    SB education....thanks!

    I'm actually GLAD you gave me an education on spina bifada (I think I just spelled that wrong...sorry!!).
    One of my favorite students is SB, and he is one of the sweetest, happiest young men I've had the pleasure of knowing and teaching. I had him fo ra general music class when he was in 7th and 8th grade, and now he's a high school junior. I just recently saw him and he's grown up so much. Even though he's in a wheelchair and unable to walk at all, he has always been the manager of the schools' basketball and football teams.
    He talks slowly, and thinks slowly; his fine motor skills are poor - but I do believe he is of average intelligence. I just love him!!!!!

    And for Ed, I think, who was wanting to see pictures of my son - I'll see what I have to show you. I KNOW he wouldn't just *let* me take a picture of him showing his "unevenness", although I probably should, just for the sake of comparison for later.

    We're heading back to the hospital tomorrow for his kidney ultrasound, and that happens to be the same place where he had his first set of xrays, so we'll get our own copy of the xrays. Maybe I can post that somehow.
    We also see the pediatric cardiologist tomorrow as well.

    I am going to contact the Shriners folks, too......I want to get them in on this from the get-go....IF they feel they can be a part of this.

    Again, I thank ALL of you for everything. Will update tomorrow night...hopefully with NOTHING eventful

    blessings...robin

    14 y.o. son diagnosed 11/2011 with congenital scoliosis, hemivertibrae, T3-T4, with 34 degree curve.

  3. #18
    Join Date
    Jan 2008
    Location
    NC
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    Some stats...

    ... in case you hadn't found this site...

    The treatment plan is based on the the progression of the spinal curvature. The chances of progression of the curve (in all congenital scoliosis cases):
    50% > 30 degrees
    25% (5-30 degrees)
    25% are non-progressive.
    http://www.espine.com/congenital-scoliosis.htm
    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."

  4. #19
    Join Date
    Nov 2011
    Location
    New Albany, Indiana
    Posts
    25

    Restults from tests...

    First off, thanks Pooka - for taking time to share the link for the website with the info about congenital scoli. Samuel is already in the 50% group, having his curve in the 30+ range. I'll do some more digging, too. I know what I'll be doing over my Christmas break!!!

    We had his kidney/bladder ultrasound on Thursday, and all is well!!!!! We also had the appt. with the pediatric cardiologist who specializes in congential heart problems, where they ran an EKG and an echogram/ultrasound, and all is well!!!!! Praise God !!!!! So, my gut feeling was wrong....thank goodness! We were all so relieved that the birth defect is limited to "just" his spine. So, now we're back to our original issue(s)....the spine and something else non-related (varicocele - I think I spelled that wrong). Poor fella.

    Anyway, I talked at length with our doctor about the Shriners Hospital, and he said to go ahead and get going on that.

    I have a disk now that has the xray images of Samuel's spine....I just don't know how to get them from there onto here for you to see.

    Thanks, again, for everything....as I find out more, I'll keep posting..
    blessings..
    robin

    14 y.o. son diagnosed 11/2011 with congenital scoliosis, hemivertibrae, T3-T4, with 34 degree curve.

  5. #20
    Join Date
    Dec 2009
    Location
    Norwich, UK
    Posts
    6
    Hi Robin,
    So glad to hear everything is fine from a cardiology and urology perspective, that's certainly one weight off your mind i'm sure!

    If you want to post pictures here, the best way is to first upload them to a photo hosting site such as flikr or photobucket, then copy the image link in your post. I look forward to seeing them

  6. #21
    Join Date
    Nov 2011
    Location
    New Albany, Indiana
    Posts
    25

    going to try the picture now...

    The CD on which we have the xrays won't download (upload??) to anything...or at least that I can figure out....
    but I accidentally found out that it would copy/paste....
    so I'm going to try it here....here's crossing my fingers it's going to work....

    ok. it didn't.....even though it is saved to my word.

    going to try something different..

    sigh...still didn't work.
    I am able to send it as an attachement...



    well, it won't load.....the uploader on here says my attachment is an invalid file, but yet, when I attach the document and sent it to myself, it opens up just fine......oh figures.

    I would be happy to email it to you personally.......if you want to send me a private message (are there private messages on this forum???) I'm on a breast cancer forum board, and we have one on there.....just wondered if there's one here. I have a feeling trying to send an attachment to anything on the scoli forum just isn't going to work

    but I'd love to have you and others take a gander at his spine...

    blessings.....
    robin

    14 y.o. son diagnosed 11/2011 with congenital scoliosis, hemivertibrae, T3-T4, with 34 degree curve.

  7. #22
    Join Date
    Jan 2008
    Location
    NC
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    What format are the files? If they are not relatively small .jpg files then you may need to run them through a program that allows you to save them as such.

    Once they are in .jpg format, can you copy/paste the files from the CD to your computer? Highlight one or more files and copy/paste them into a folder or to the desktop, somewhere that you know where they are.

    Then select the paperclip icon and follow the directions.
    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."

  8. #23
    Join Date
    Nov 2011
    Location
    New Albany, Indiana
    Posts
    25

    Finally!

    Thanks, Pooka...
    the files on the CD were something I'd never encountered before, naturally....
    but my son started messing with the computer, and with a matter of some clicks here and some clicks there, I think we have it !!!!

    So, here goes.

    scoliosis x-ray.png

    14 y.o. son diagnosed 11/2011 with congenital scoliosis, hemivertibrae, T3-T4, with 34 degree curve.

  9. #24
    Join Date
    Nov 2011
    Location
    New Albany, Indiana
    Posts
    25

    let me know....

    ...if you're able to see the xray or not...
    again, my son had to do it for me....just couldn't quite figure out how to get it on here.
    I know how to post pictures on FB, send attachments on everything else, but this was just SO different from anything else...

    blessings to all of you...
    robin

    14 y.o. son diagnosed 11/2011 with congenital scoliosis, hemivertibrae, T3-T4, with 34 degree curve.

  10. #25
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    929
    Yes, I can see the x-ray you posted, sorry that I don't know anything about congenital scoliosis though.
    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

  11. #26
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    2,775
    Sally
    Be sure to let us know when your A/P is coming up.....youíre a trooper! Hang in there.

    Robin
    Once again, I donít think they will move quickly on this and will watch and wait. Sally is correct, hemiís up high are rare, I remember reading about this at some stage....

    A follow up with Shriners would be wise.

    I am having trouble following the forum lately since I have been busy, but do quick glances in here often.

    Ed
    49 yr old male, now 55, the new 39...
    Pre surgery curves C12,T70,L70
    A/P T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  12. #27
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    Jan 2008
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    NC
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    8,081
    Quote Originally Posted by robinlbe View Post
    Thanks, Pooka...
    the files on the CD were something I'd never encountered before, naturally....
    but my son started messing with the computer, and with a matter of some clicks here and some clicks there, I think we have it !!!!

    So, here goes.

    scoliosis x-ray.png
    That's a clear radiograph. The curve seems really limited to the area immediately at the hemivertebrate. Maybe it won't progress. I actually don't understand why congenital cases ever progress. It just seems locked and self-limiting unlike AIS where the sky is really the limit.

    I wish there was a database so you could easily look up who has seen the most congenital cases. I would not be surprised if it was a Shriners guy. It would just be very good to have that because these cases are so rare.
    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."

  13. #28
    Join Date
    Mar 2011
    Posts
    3
    Hi,
    I also found it hard to find information on congenital scoliosis but this forum has been very helpful to me as it became apparent my daughter would need surgery. She was diagnosed at age 11 with surgery at age 13- she just reached the one year mark! Her hemivertebrae was at T7 with a primary curve of approximately T38 and a compensating curve of L25 at diagnosis. Her mri was normal and she had a kidney ultrasound for another reason when she was younger. She did hold steady at first then jumped to T51 L38 at 12 1/2 years old. We were seeing both a Shriners doctor and a local doctor both recommended surgery for her when her curves progressed. The surgeon did brace her but wanted to wait for her to have her period before he did surgery and thankfully the curves pretty much stayed the same until her surgery 9 months later. She was fused T4 to L3 with a slight correction in the thoracic but the lumbar curve is completely gone! Faith and Prayers got her through it. We chose a surgeon here in town so she would be closer to home but I would have been just as happy with the Shriners which was 2 hours away for us. The main difference was the appointment scheduling- Shriners made 6 month appointments for both my kids while the local doctor made 4 month appointments. We were even able to share the xrays/mri's between the doctors because on 1 or 2 occasions the appointments were near the same time.

    I also think back- during my pregnancy the blood test at 16 weeks was out of range. The ultrasound was normal but indicated a change in the due date. She almost skipped crawling completely by rolling around to move around and suddenly discovered crawling at 12 months old. Her pediatrician sent her to an orthopaedist at 15 months because she was just beginning to walk- they xrayed her hips and said she was fine.

    Hopefully your son's curves will hold steady and he will be able to avoid surgery. Every case is different but it can be done on congenital. My daughter is glad she had the surgery. The Shriners are a wonderful group and hopefully you will be able to see them soon.
    Son- diagnosed at 14- leg length discrepancy 1.5cm & 16 degree scoliosis- released from doc at 16
    Daughter- diagnosed at 11/surgery at 13; incarcerated hemivertebrae T7

    Fused T4 to L3
    pre-surgery T51 L38
    post surgery T35 L 0

  14. #29
    Join Date
    Jan 2008
    Location
    NC
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    Quote Originally Posted by congenitalscoli View Post
    She was diagnosed at age 11 with surgery at age 13- she just reached the one year mark!
    Congratulations!
    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."

  15. #30
    Join Date
    Mar 2010
    Posts
    2,645
    Robin,
    Your son's curve is very high and tight. It almost looks like how mine started out, only I don't have a hemivertebrae, I have AIS. I know they are unrelated, so I don't know how fast hemi's progress. But mine was very stable for about 20 years. Now that I'm in my 40's, it's progressing at a fairly steady rate, which is discouraging to me. I have other plans that were in the works that don't have room for progressive scoliosis or the pain that comes along with it. Oh, how I wish we had a little more control over our lives! But it's GREAT news that the other test came back normal for your son! I wish you all the best. I don't remember reading this, but does your son have pain with his back? How did you find the curve? Sorry if you already posted it.

    Mustang,
    Wow, what an education about SB. There were a LOT of things there that I didn't know. I know my mom freaked out when she found out that I had it and I was put through a lot of neurologic tests, mostly for the scoliosis and an associated radiculopathy that I still have. But her freaking out made me very scared about it. Even when I started having babies, my doc was very meticulous about checking everything as he was a little concerned about my SB for the thought that it might be hereditary. I'm not sure. I've lost a lot of babies. I was able to see one, and now that I know what a 7 week embryo should look like, I'm certain that baby had anacephaly. It makes me wonder about the others (at least 6)? I had a cousin that was born with hydrocephalis. Sadly, she died three days after she was born. She also had a blocked intestine. Back then, in the early 60's, they didn't have the technology that they do today, as she would probably be as normal as anyone else, had she been born now instead of then.

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