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Thread: thoracic stabilizing fushion 6 yr daughter march 17 HELP

  1. #1
    Join Date
    Feb 2005
    Location
    San Diego, CA
    Posts
    6

    thoracic stabilizing fushion 6 yr daughter march 17 HELP

    My 6 yr old girl is getting 2-4 thoracics rodded to stabilize through growth. Supportive info from anyone having had this procedure is appreciated. Surgery is March 17. We are not new to hospitals, but this seems a bit more! Thank you!
    Pauline ... mom of Rhegan Ann

  2. #2
    Join Date
    Jul 2004
    Location
    Northern California
    Posts
    255
    Hi Pauline!

    Sorry to hear your daughter has to have the surgery. You will find a lot of information by looking through the threads on this site. Probably the ones in the section on first-time surgery section will be most relevant, even if they are discussing patients a bit older than your daughter.

    You could also try re-posting your message in that section, in case people don't see your post here.

    Take care and all the best. ~Laura
    30y/o
    Upper curve around 55
    Lower curve around 35

  3. #3
    Join Date
    Jan 2005
    Location
    San Diego, California
    Posts
    90
    Hi Pauline,
    Welcome! I noticed that you are from San Diego. I personally do not have any information for you (sorry) but I wanted to let you know about the San Diego Support Group that was just started in case you would be interested. If so, email Sdscoliosis@yahoo.com I wish you and your daughter the best of luck.

  4. #4
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Pauline,

    Welcome to the board. Are you referring to the growth rods for Rhegan Ann? Are they rods that will be adjusted occasionally to compensate for growth?

    Have you gotten a second (or more) opinion about what the best option for her will be? Avoiding fusion should be your goal, unless she has other medical issues that would interfere with having a growing rod-type procedure.

    My son is now 9yrs old and had VEPTR (vertical expandable titanium rods) placed at age 6. He is doing GREAT. The two rods are expanded every 6-8 months to keep up with his growth. I would strongly suggest you find a doc who has lots of experience in treating small children with scoliosis issues, especially thoracic scoliosis.

    Is Rhegan Ann's lung function compromised at all? I can imagine it probably is. I'd be happy to share our experiences with you, if you are interested.
    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/

  5. #5
    Join Date
    Feb 2005
    Location
    San Diego, CA
    Posts
    6
    Carmell,
    Thanks for your response. We have the best...the specialists of the California State Universities (UCSD) at Childrens Hosp of San Diego. She was born with a heart condition, so we are no where near new to this way of life.
    No, she has no organ or neurological threat at this time. Not doing expandable rods at this point, simply a rod to control curve til full growth. She has been braced for 1-1/2 yrs without significant control. This curving is result of Chiari (corrected), so she has received proper medical attention, fully.
    I really just need any info in the details of such a surgery...the patients/parents views. Just covering the unknown of post-surgery and home again, ya know?
    Thanks for your help and concern, to me, and as I can see, to many others!
    Pauline
    Pauline ... mom of Rhegan Ann

  6. #6
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi again, Pauline,

    It sounds like they are suggesting a fusion surgery. Do you know if they are planning on fusing the spine to keep it from getting worse? That is the typical procedure for "stabilizing" the spine. If so, please be very vigilant in asking questions. How many vertebrae will be fused? What are the long term effects of having this surgery? etc. Fusing her spine at such a young age will stop the vertical growth of the vertebrae. Her trunk will likely be shorter than "normal". I realize you have had lots of medical experiences (not by choice! I understand) however I still wonder if this is the best option for Rhegan Ann. I know there are excellent scoliosis docs in San Diego, but they are geared more for teenage patients who are already near or at their skeletal maturity. If they are NOT planning on fusing the rods into place, what IS it they are planning to do? I've not heard of rod placement without fusion, except in VEPTR (adjustable rod) surgeries. Please fill me in with the details that you know. I'd be happy to share our fusion story as well as our rod placement story with you. Braydon was 6yrs old when he had his rods placed. I have suggestions/comments about that. Let me know.

    Thanks,
    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/

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