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Thread: 11 Year Old Son diagnosed with Congenital Scoliosis last month.

  1. #1
    Join Date
    May 2012
    Location
    Illinois
    Posts
    9

    11 Year Old Son diagnosed with Congenital Scoliosis last month.

    As the title says he was diagnosed just last month. We went to a Ped. Ortho for leg pain and she noticed a slight curve. Sent us for x rays. She called back the same day with an appointment to see another Ped. Ortho at Cardinal Glennon Childrens Hospital, in St. Louis. We liked the Dr. a lot and he made my son feel very comfortable.

    I keep trying to find info on his type of curve and am not sure what to read and what not to read.

    I was told he had an s curve in the thorasic spine. Top curve is 33 and lower curve 31. Was told there is evidence of several wedge vertabra and possible hemivertabra. Dr. said things are ok because he is well balanced at this time.

    We had his kidneys checked and all is ok there. We are scheduled to see him again in Oct. for new x rays.

    I guess what I'm asking is 1) Where is a good place to read up on this type of Scoliosis?
    2) Can this type of curve just stay the same? Balanced and no progression?
    and 3) Is it normal to be freaking out and wanting to do something?

    Thanks for reading

    Sara

  2. #2
    Join Date
    May 2012
    Location
    Illinois
    Posts
    9
    Thank you so much for the reply. I am slowing calming down and realizing that all we can do at this stage is wait.

    You are so right about kids bouncing back fast and handling things better than their parents.

    I'm wondering about something...Does everyone get second opinions? I've had people ask if I have thought about this yet. I figured this was something I would think about if he gets worse. Right now I think we are sitting pretty good and if all stays the same nothing will have to be done.

    I keep reading other post and learning as much as I can. Are all cases different? Are surgeries for Idiopathic Scoliosis similar to Congenital ones?

    Thanks for any input.
    Sara

  3. #3
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Welcome and I'm sorry about the diagnosis.

    Quote Originally Posted by sarakay1 View Post
    I guess what I'm asking is 1) Where is a good place to read up on this type of Scoliosis?
    2) Can this type of curve just stay the same? Balanced and no progression?
    and 3) Is it normal to be freaking out and wanting to do something?

    1) There are probably only a few good papers on congenital but you can find them by searching the medical literature on pubmed. Other than that there are many sites that talk about it. Just google it an stick with .org or .gov site (not .com sites)

    2. Only an experienced pediatric surgeon knows that unless there happens to he a case on the group. By the way, we have had a spate of congenital testimonials in the last few months which just goes to show that the number of testimonials is not a good indication of incidence in the population as congenital is very rare. Hopefully they are in the other types of scoliosis part of the forum but they may be scattered. You can use the search function (top right).

    3) Yes totally. Shriners and perhaps a few guys elsewhere are the known experts on congenital as far as I know. There are proabably some unknown to the general audience here. If you get multiple opinions, make sure it's from folks who have handled a lot of cases.

    You can do this. 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
    Nov 2011
    Location
    New Albany, Indiana
    Posts
    25
    I don't really have anything to add or share, except to say that we are getting our second opinion next week (well, actually June 5th) with Dr. Betz at the Philadelphia Shriners (with a GREAT BIG thanks to all of you on this forum!!).

    The spinal doc we see here *says* he sees this all the time, but quite frankly, I doubt that....

    our son, like yours, has a hemi-vertebrae, and it wasn't discovered until just this past fall, at age 14. It's at the T3-T4 (or T4-T5) and is a 34 degree curve, His right shoulder sits about 3" higher than his left, and one of his ribs is sitting at his shoulder. I used to think it was a hard muscle there, and I would try to rub it out, only to have him tell me it hurt - duh! No wonder, I was rubbing his bone!!!!

    Anyway, we go to Philly and see Dr. Betz. I am so relieved to have someone of his excellence see our son.

    I will let everyone know what we find out.....

    but, DO get a 2nd or even a 3rd opinion. After all, this is YOUR child, and he only has one life, and only one chance at growing up. It's up to us to be our children's advocates.

    blessings.
    roibn

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

  5. #5
    Join Date
    May 2012
    Location
    Illinois
    Posts
    9
    Again, thank you all for the info and insight. We are only about 15 minutes from St. Louis. I'm sure there are several great Dr. there. I know I have heard Shriners in St. Louis mentioned a lot on this forum.

    Does it make sense to wait the first 6 month period and get new pictures before a 2nd opinion? I figure at this point we know hardly anything about this.

    Thanks a lot.

    Sara

  6. #6
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160

    Dr Luhmann at Shriner's St Louis

    Hi Sara,

    Since you are near St Louis, I would definitely recommend a second opinion from Dr Luhmann. He sees patients at Shriner's, and I believe he is also in private practice at Washington Children's Hospital. He is absolutely wonderful, patient, kind, and unassuming, as well as a superb surgeon. My daughter had vertebral stapling surgery with him two years ago, and we were extremely pleased with her outcome and the care she received at Shriner's.

    Good luck, and please do let us know how things are going for your son.
    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

  7. #7
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Sara,

    Welcome!!

    It is always a good idea to get a second, even a third opinion for several reasons. For one thing, you really have nothing to lose - and potentially everything to gain. Many parents, including myself, wish we had done that sooner. If nothing else, it will put your mind at ease. In your area (St. Louis), Dr. Luhmann would be an excellent choice. I'm sure there are other excellent doctors in that area, but he's the only one I'm familiar with.

    The important thing is to see someone whose specialty is scoliosis in children, and who sees lots of cases and all different types of cases - not just the typical scoliosis (which is usually AIS in teen or preteen girls).

    Best of luck to you and please keep us posted.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  8. #8
    Join Date
    May 2012
    Location
    Illinois
    Posts
    9
    Wow. I feel like I am learning so much from everyone here. When we saw the Pediatric Surgeon last month I didn't ask a single question. I just sat there and listened. It wasn't until I got home that all the questions came.

    We originally made the appt. to see a Ped. Orthopedist because my son had horrible pain in his feet and what he calls Shocks. They are radiation waves of pain that shoot across his back and down his legs. After finding the Scoliosis we kind of put this problem on the side burner. We figured his pain was due to growth. He is very tall for 11yrs. I'm wondering if they could be related.

    I need to learn to be more aggressive when it comes to getting info for my son. Our Orthopedic Surgeon is not on the SRS list. He did tell us that is the site to read for info though. His profile says he has a special interest in both types of scoliosis.

    Ok, I'm rambling. Off to read more posts.

    Thank you to everyone for sharing your experiences.

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