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  1. #1
    Join Date
    Apr 2007
    Posts
    2

    Ian scheduled for surgery

    Hi:

    My son Ian is 2 years old and was diagnosed with Congenital Scoliosis in January of this year. We are from NYC and have been to Morgan Stanley Childrenís Hospital of NY Presbyterian / Columbian University Medical Center and NYU Hospital for Pediatric Joint Diseases. Now we are with the Shriner hospital in Philly working with Dr. Betz. We had an appointment yesterday and Ianís curve has progressed from 30% to 38% in the last 4 months. They suggested that we come back in December to check if his curve has progressed. If so, we are scheduled for the VEPTR surgery in January. Has anyoneís child had this surgery? How was the recovery and now has your child been able to go back to his/her activity level prier to the Sergey?

    Any input will be helpful.

    Ianís Mom
    ninanorwood@gmail.com
    Ian / 24months /Congenital Scoliosis
    2nd. Baby due in March

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Nina,

    How adorable is he!!! What a charming guy. I'm sure he knows how to use his charm too. How can you not kiss those cheeks!

    My son, Braydon, is now 12yrs old. He has had VEPTR implants for 6+ years. He is doing VERY well. His quality of life has improved and remained excellent. I'll email you with details about our experience. You are in GREAT hands with Dr. Betz and his team in Philly. If Ian needs VEPTR surgery, that's a great place to have it done. More than the surgeons skill, the hospital post-op care is very important. You want to be where they know how to take care of these kids, and know what complications (if any) to watch for. Braydon has never had any complications. He has done remarkably well. It is a huge surgery, and a huge committment from the family and the surgeon both. However, the quality of life improvements are well-founded, in Braydon's case. I would dare bet Dr. Betz is considering VEPTR to maintain optimal lung function. There are several new studies recently documenting early fusion patients and their poor lung function as adults. Not my idea of fun.

    My best. I'll email soon. Or, if I forget (senior-itis may set in) email me at boulderfam@hotmail.com
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  3. #3
    Join Date
    May 2005
    Posts
    672
    Just wanted to send good wishes for the best outcome for your Ian. He is absolutely adorable!

    Renee

  4. #4
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Nina,

    I'm in love with your son already - he's SO cute!!

    I can't offer any advice regarding the VEPTR because my son had a different surgery (vertebral stapling) - but I am from NYC and very familiar with the workings of Shriners Hospital in Phildadelphia and Dr. Betz and his team. Ian is in EXCELLENT hands (understatement).

    That being said, I'd love to support you in any way I can. Please feel free to e-mail me. I'd also be happy to chat with you by phone. (I'm in Queens).

    Hugs,
    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/

  5. #5
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    Ian is totally adorable & you are probably very stressed worrying about him, especially since you're pregnant & hormonal. You can find lots of support on this forum so don't hesitate to ask any questions & let people know how you're doing. I heard of a new VEPTR support forum (I know someone else will tell you about it) if Ian ends up needing that surgery.

    My son has been able to live a very "normal" life with congenital scoliosis -except for the medical appointments, his brace from ages 8-11 & his recent surgery. We've known about his hemivertebrae since birth but he wasn't diagnosed until he was about 5 yrs old. If you have any questions, I'd be happy to try to answer them.

    Good luck with everything!
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  6. #6
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Nina,

    I sent you an e-mail and was wondering if you got it. Basically, I'm happy to support you in any way I can. We, too, are from NYC and Dr. Betz is my son's doctor as well.

    Best,
    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/

  7. #7
    Join Date
    Dec 2013
    Location
    Pittsburgh, PA, USA
    Posts
    3

    Surgery options?

    [QUOTE=Ian'sMom;49192]Hi:

    Hi Ian's Mom,
    my son is 3 and has severe congenital scoliosis. I'm looking for different options for his treatment. Could you tell me why you didn't get Ian's care from Columbia Univ MC / NY Children's Hosp? How has it been to live with the VEPTR? Do they have to replace the rods periodically? How often? I'll send the same message to your email, since this thread is a few years old, I'm not sure if you're still on this site. Thanks, Kelly.

  8. #8
    Join Date
    May 2009
    Posts
    3,745
    a note...the thread was started in 2007...is there any
    activity from the original writer...??

    jess

  9. #9
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    I don't think so, Jess.

    Kellybensmom - if you would like to e-mail me (see address in my signature), I will try to connect you with some parents and/or groups dealing with scoliosis in very young children. (My own son was diagnosed at a young age as well). One group comes to mind is the infantile/casting site, but I am not sure if casting could be an option with congenital scoliosis. I will also try my best to give you info on any doctors specializing in infantile scoliosis depending on where you live.

    Best of luck.
    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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