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Thread: Congenital Scoliosis - T4-T5 in teenager

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  1. #1
    Join Date
    Nov 2011
    Location
    New Albany, Indiana
    Posts
    25

    Congenital Scoliosis - T4-T5 in teenager

    I posted this also in the teenager section, but am posting here in case someone else sees this here and not there.....

    Our 14 y.o. son was just diagnosed with scoli last month, and we just saw the spine surgeon for the first time two days ago. He has a 34 degree curve, caused by a congenital hemivertebrae. It is the triangular type, where it didn't separate completely while in utero. Thankfully, he has no pain and no neurological effects from this. His right shoulder, however, is about 4-5 inches higher than his left. I about cried when I saw the xray.

    Because the spine is developing at the same time as the kidneys and heart, he will have further tests done on these organs as well. What is most interesting is that at my ultrasound with him at 18 weeks gestation, we were told that one kidney was 1/2 the size of the other, and it was not functioning. However, after much prayer from literally hundreds (if not thousands) of faith-believing people, at the next ultrasound, all appeared normal with the kidney. At birth, our pediatrician felt that his kidneys were normal and nothing further needed to be done.

    The spine surgeon we saw is in Louisville, KY at the Leatherman Spine Center. He told us that bracing would do no good at all, and surgery is too risky AND the quickest way to paralyze someone. So we are watching and monitoring his spine. Of course, there is no way to make it better. However, if the curve continues to get worse, we will have to fuse it and stop it in its tracks.

    This curve has probably shortened him a little already, hasn't it?
    I read that congenital hemivertebraes are 1 in 10,000. Really?!? Have you all found that to be the case?
    If you or your child have been diagnosed with congenital, have either of you been diagnosed with kidney and/or heart issues?

    Thanks so much in advance for your help, encouragement, advice.....I know I will learn a lot from all of you.

    blessings...robin

  2. #2
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160
    Hi Robin,

    I am sorry to hear of your son's diagnosis. I know what a shock it comes as.

    I am bothered by the comments made by the surgeon you saw, and I would strongly recommend you find another surgeon who is highly skilled with congenital scoliosis. I am quite sure your son has surgical options that aren't expected to result in paralysis. That comment just comes off so callous.

    My daughter's scoliosis is entirely different from your son's, but she had really fantastic care at Shriner's St Louis under Dr Scott Luhmann. I would recommend him to anyone. Also, the spine team at Shriner's Philadelphia is one of the very top pediatric spine centers in the world. I am quite sure they will see your son for a second opinion. You can e-mail Janet Cerrone, the spine team PA, at janetcerrone@comcast.net . She can tell you if your son would benefit from visiting Shriners Philadelphia for a second opinion.

    I know it may seem shocking the thought of traveling across country for medical care, however, your son's case is very unusual and many scoli surgeons will not be equipped to treat him. You will not regret traveling to St Louis or Philadelphia for care. We travelled from Oregon to Philadelphia for a consult, then later had my daughter's surgery done in St Louis, and it was well worth the thousands of miles we travelled.

    In case you are not familiar, Shriners Hospitals are a network of cutting-edge specialty orthopedic hospitals that is some cases also treat children with burns or spinal cord injuries. They provide all care to children 18 and under free of charge, regardless of ability to pay. Families with insurance will be asked to provide their insurance info and the insurance will be billed, but the family will never see a bill or have any amounts due. It is truly amazing. The only requirement is that the child will benefit from their specialized services. You do not have to have a Shriner sponsor.

    I would recommend you e-mail Janet Cerrone, and give her a few days or a week to get back to you. I believe she will be able to advise you about getting the most appropriate second available for you son.

    Good luck, and please do let us know how things are going.
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  3. #3
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Quote Originally Posted by leahdragonfly View Post
    I know it may seem shocking the thought of traveling across country for medical care, however, your son's case is very unusual and many scoli surgeons will not be equipped to treat him.
    I completely agree with this and all Gayle's other points.

    Congenital scoliosis seems exquisitely rare and you want someone who has treated the most cases. It is conceivable some of the top pediatric surgeons have done less cases than certain other guys. The Shriners guys are a good bet for having seen the most cases in my opinion since they are known for orthopedics as a specialty.

    And the comment about paralysis seems to indicate that surgeon may not have done so many cases but of course I don't know that. At this point, if a surgeon made that comment to me, I would ask for the data. We have at least one other child (teenage boy with a thoracolumbar curve) with congenital scoliosis on the group who was fused successfully. No paralysis. I can't think of any other case on the group. Given the prevalence, it's amazing to even have that one testimonial.

    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."

  4. #4
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901

    "12 yo girl with severe 75 degree congenital and idiopathic scoliosis fixed..."

    robinlbe,

    By coincidence, Dr. Hey blogged about a very complex congenital case he handled recently. Note how he consulted with other surgeons. I suggest you want a surgeon who will do that also for your son.

    http://drlloydhey.blogspot.com/2011/...75-degree.html

    Last week we straightened up Emory, who is 12 who had complex congenital scoliosis measuring about degrees at Wakemed. Due to complexity of her deformity, I did extensive preop planning, including 3 dimenensional analysis of her cervical and thoracic spine using special software. I actually presented her case at Boston Childrenís Hospital special Fellow Reunion Conference right before the Grice Dinner and Lectures. Many thanks to Dr. John Emans, and others who helped give their input!

    Intra-operative O-Arm Navigation and 3D analysis was also performed. I took the preop 3D analysis I did for each pedicle level, and actually arranged them into a PowerPoint presentation which I then printed and posted on the wall in the operating room! That was very helpful. Surgery was T1-T12 instrumentation performed along with several osteotomies. WakeMed OR team did great.

    Her surgery went well, with 3 night stay at WakeMed Raleigh Childrenís Hospital, going home on Saturday doing well.
    This surgery helped with her severe shoulder obliquity caused by the severe scoliosis.
    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
    Join Date
    Nov 2011
    Location
    New Albany, Indiana
    Posts
    25

    wow- you all are amazing!!

    I knew I had come to the right place!!
    Ladies (I'm assuming, ladies, anyway...you sound like VERY informed moms to me!!!!), thank you for taking so much time to "talk" to me and give me so much advice and encouragement. I had been reading through the forums for a couple of weeks before our doctor visit, and before I had been given permission to post, so I had read about the Shriners' hospitals and all they could do. We live only about four hours or so from St. Louis, so that's not terrible.

    I do think I'd like a second opinion. Even though my son's scoli isn't terribly noticeable (because he is so active, and he doesn't wear tight shirts), I am so scared it's going to get worse. I guess I was just relieved the spine doc wasn't knife-happy. My son is in ROTC, and is running his mile, doing his push-ups, pull-ups, sit-ups, etc....he's always been my active child - riding his bike w/o training wheels at age 4, doing cartwheels, flips, etc, my skateboarder, my true dare devil!!! He is not supposed to stop doing all of this. I want him straight, of course - but I'm so scared that surgery will cause him to stop doing this stuff.

    AND to be honest, bone surgeries of any kind scare the daylights out of me- in the last two years, I have watched my mom have a back surgery and a hip-replacement surgery to get WORSE in her condition!!!!! Of course, I know this is not the same thing.....I know. But it scares me something awful. I would be willing to take a chance on myself - because I'm old. But I'm scared of doing so with my 14 y.o.

    Does that make sense?

    And yet, I know that YOU each have gone through this very thing........I know.
    I honestly did not know we were getting into something so serious.
    I actually was hoping my chiropractor would be able to help, but when she saw the written report about his xrays, and she saw the "hemivertebrae" on there, she wouldn't touch him. It wasn't until we saw the xrays ourselves this week that we realized what we were dealing with.

    Yes, I do think you all are right. We need to get the data of how many wedged hemi's this doctor has dealt with. We also need a 2nd opinion.
    At this point, my son has the rest of his life - hopefully another 70+ years to go.

    Thanks again for everything you've shared....
    blessings...
    robin

  6. #6
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,531
    Hi Robin

    We do have quite a few knowledgeable momís here! What would we do without them? (smiley face)

    I will ditto Gayleís post (again)....You son is not a standard or common type of scoliosis and needs to be seen by some of the experts....Experts like those at USCF, HSS,TCSC, or any other institution that deals with hemiís or oddball vertebral shapes. Shriners also deserves HIGH marks. These types of hospitals have the best of the best brainstorm and discuss cases like this. Its nice to know that many guruís will be looking at your sons x-rays.....

    Iím so sorry about this. If he were my son, I wouldnít dwell on this at all. I donít think that they will make a quick surgical decision, but will probably want to watch him like a hawk for now. His hemi is up high.

    If he has any x-rays taken, get digital copies burned to disc for your records. This goes for CTís and MRIís also. They are your property.

    Welcome to the forum.
    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF 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

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