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Thread: just found out my 9 year old son has congential scoliosis

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  1. #1
    Join Date
    Jan 2011
    Posts
    3

    just found out my 9 year old son has congential scoliosis

    Has anyone had a similar experience with their child? I am having a difficult time understanding how I could have overlooked this scoliosis since he was born with it. He has congenital upper cervical scoliosis and upper thoracic curve. I just realized something was wrong when the curve of his neck started to get strange last year at age 8. Doctors are saying bracing will not work. I just need to watch it to see if it gets to intervention level?? Is there something else I should be doing than just waiting? He is starting to look very deformed in his neck. He cannot turn his neck left due to a kind of congenital fusion in the cervical spine at C5 and C6. We did have MRIís done last summer and spinal cord was o.k. but there are vertebral wedging at T1 and T4. He also has a leg length difference of 2cm. I am starting to think he has klipel-Trenaunay syndrome from the web search I have done. The doctors keep saying this is very rare and I have not found much on cervical scoliosis searching the web. If anyone has a similar experience I would very much appreciate the thoughts as I am extremely worried about him. Thank you.

  2. #2
    Join Date
    Nov 2010
    Location
    San Diego, CA
    Posts
    104
    Welcome. I am sorry to hear about your son but glad you found this site. You'll get a lot of support here.

    I don't know much about the congenital form of scoli but I'd recommend that you see a pediatric scoliosis specialist if you are not already. Not a general orthopedist. Consider getting a second or third opinion. A great doctor will welcome a second opinion. We live in Southern CA and see Dr Peter Newton who is wonderful and we'll be seeing Dr. Betz and his team in Philadelphia for a consult in a few months. Via email and mail contact with the Physician Assistant at Shriners in PA, Janet, she was glad to review my daughter's records long distance.

    Also, just my gut reaction, 2 cm leg length discrepancy seems like a significant difference that it deserves to be addressed too. Worth following up on that as well.

    Best Wishes. You are not alone!
    Resilience

    treated w Milwaukee Brace FT for 3 yrs
    currently 46 with 35 LL and 40 RT curves

    8 yr old diagnosed w Scoli 8/10 with 27 LL and 27 RT
    11/10 TLSO Full Time
    4/11 22 LL and 24 RT on waiting list for VBS at Shriners Phila
    12/11 curves still in the 20s but now has some rib cage changes from the brace
    VBS 4/25/12 with Dr. Samdani. Pre Op: 29 RT and 25 LL Post Op: 17 RT and 9 LL
    10/13: 15 RT and 10 LL

  3. #3
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Quote Originally Posted by Resilience View Post
    I don't know much about the congenital form of scoli but I'd recommend that you see a pediatric scoliosis specialist if you are not already. Not a general orthopedist. Consider getting a second or third opinion. A great doctor will welcome a second opinion. We live in Southern CA and see Dr Peter Newton who is wonderful and we'll be seeing Dr. Betz and his team in Philadelphia for a consult in a few months. Via email and mail contact with the Physician Assistant at Shriners in PA, Janet, she was glad to review my daughter's records long distance.
    I could not agree more that it is critical to see a pediatric scoliosis specialist. In fact, I'll go one step further and say that you want to see someone who deals with all sorts of scoliosis cases (congenital, juvenile, scoliosis in conjunction with other medical issues, etc.). The team at Shriners, Philadelphia would fit this bill for sure. In any event, I would try to get a few opinions as suggested above from the appropriate specialists. As also mentioned above, if you contact Janet at Shriners (see my signature for her contact info) she will often have the team of doctors review cases 'long distance' if you send them all the files, x-rays, etc.

    Best of luck and please let us know if you have any other questions - we are here to help and have all, in one way or another, been where you are standing right now.
    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/

  4. #4
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,535
    Welcome

    Cervicothoracic scoliosis curves are not common and will add a few more options for you.

    We donít know your location. I guess it doesnít matter when you need the very best.

    I would take your son to UCSF or HSS in NY. These are the best places for a condition of this manner because they have teams of the best people, experts in all fields can be summoned.
    They also work with shapes that are not the norm.
    http://www.ucsfhealth.org/conditions/spine/
    http://en.wikipedia.org/wiki/UCSF_Medical_Center
    http://en.wikipedia.org/wiki/Hospita...pecial_Surgery

    Please donít beat yourself up about this, its not your fault ok? Scoliosis happens, and hides well and can progress very quickly.....

    I knew a girl 29 years ago with this condition but moved away from the area and lost touch with her.

    Please keep us posted on him...
    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

  5. #5
    Join Date
    Jan 2011
    Posts
    3
    Thank you all for responding. My location is in connecticut so I have been going to Yale hospital in New Haven but they have not been giving me all the information ( I still do not know the curve degree but it is looking severe to me) I feel that they have really not done a thorough job here...I have started seeing them since August 2009 for "swollen side of neck" and here we are in 2011 and I don't know the degree! I didn't ask questions because I did not know that it was anything concerning. I really feel that seeing so many residents there does not help with consistency of information. I really would like to see one person that will remember my son and be interested in giving me accurate information! Looking back the pediatrician was pretty clueless too because someone in a medical field could of easily identified this..but she sent me to do an ultrasound back then?! It all started looking bad to me when I had his shoe built up in October and it was a 1 inch difference and it looked so big on the shoe! Prior to this Yale just gave me a tiny shoe insert (1/4 ") so I figured the difference was small. Anyway..I have made an appointment with Shriners in Springfield, MA (March) hoping that they are more specialized in this and can give me more answers. Thank you very much for the suggestion for HSS in N.Y. and Shriners in Philadelphia. I am going to be making a list and getting to these places for 2nd opinions.

  6. #6
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Quote Originally Posted by Jordanmom View Post
    Anyway..I have made an appointment with Shriners in Springfield, MA (March) hoping that they are more specialized in this and can give me more answers. Thank you very much for the suggestion for HSS in N.Y. and Shriners in Philadelphia. I am going to be making a list and getting to these places for 2nd opinions.
    We live in NYC. And while I know HSS has an excellent reputation, we chose Shriners in Philly simply because we felt they saw many more juvenile cases. In fact, my son was originally seeing a doctor who had offices at both HSS and in Uniondale, LI. She was listed on HSS's website as a pediatric orthopedic surgeon and yet her office was full of mostly teenage and pre-teen patients. I rarely saw anyone under 10 in the waiting room. Perhaps for that very reason, the treatment methods offered were limited since at that age (teens), it is usually bracing or fusion.

    Again, I'm not questioning the excellence of HSS for orthopedics, but for me, I was more comfortable with a team of doctors who saw a lot of younger kids.
    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/

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