14 y/o Son w 90+ curve & MR & DD

[kammckillop]

My son, who has 1p36, a chromosonal deletion syndrome, has a major curve (90+) w/ rotation. Had consults and recommending front/back surgery (with 4 or so days between surgeries). We are on LI/NYC area and have not had 2nd consult yet. Any recommendations. Very scared, because he does not understand and has limited ability to express feelings/anxieties etc. Also looking to hear from anyone having gone through front/back procedure in succesion.

[joyfull]

You might want to try Dr. Baron Lonner at NYU/Joint Diseases. He does the anterior approach minimally invasively which might be less traumatic for your son. I'm having surgery with him on June 8th.

[joyfull]

I believe that Dr. Lonner also has an office on Long Island.

[mariaf]

We are also from NY and go to Shriners in Philadelphia. My son had surgery there (VBS, not fusion), but they see all sorts of cases - in fact a lot of complicated cases are often referred to the team there. They are also extremely compassionate and great with the kids, and offer a lot of services to support the family as well (assistance with transportation, lodging, etc.).

Best of luck to you and your son.

[pmsmom]

Hi and welcome! I'm glad you found the forum! I'm Marian from FB.

I've heard very good things about the Shriners in Philly. If you are traveling to Philly for a consult, there may be some surgeons at Children's Hospital of Philadelphia as well.

Did you check out the www.srs.org site yet? They have surgeons in the area who keep up with the latest research on scoliosis.

You and your family remain in my prayers.

Take care!

[pmsmom]

Isn't there a Dr. Boachie in NY as well? There are those on the forum who are very pleased with his work as well.