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Thread: Fusion in a 4 year old

  1. #1
    Join Date
    Sep 2006
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    2

    Fusion in a 4 year old

    My 4 year olddaughter has a 87 degree curve right now w/ restritive lung disease and is scheduled for surgery next month. (curve was dignaoised 28 degrees at 11 months- but rib hump was noticable at age 3 months. All CT and MRI cans have comeback clean and they can't find a reason for her curve)

    But we aren't sure what type to do. If we opt for a complete fusion her curve will go from 87 to about 40-45 degrees. But we lose pullmonary capacity. If we opt for growing rods, they can only correct her curve to 60 degrees, but we can some lung growth.

    Casting and bracing were/are out of the question because she has another medical condition called Epidermolysis Bullosa. Its where she gets open wounds and blisters all over her body from the smallest amount of friction. The casts would cause too many wounds and we wouldn't be able to treat them, thus causing infection. The bracing would cause too much friction too and we wouldn't be able to comply with the 22 hours a day to wear it since her daily bath and wound care takes 2-3 hrs per day to complete.

    She is extrmemly prone to infection and the more we are in the hosp the more we are opposed to germs. Multiple surgeries could be life treatening to her. But we aren't sure if a fusion at this point would be life threatening as well.

    anyone else had a fusion at a young age? Did you have regrets? Long term complications?

    Thanks

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,025
    Hi...

    You may want to post your message in the Parents section:

    http://www.scoliosis.org/forum/forumdisplay.php?f=100

    Regards,
    Linda

  3. #3
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Welcome,

    You don't have too many options. She has a lot of medical issues that comlicate any decisions. You are right that fusion will stop the vertical growth of ther spine. If the surgeon knows what he/she is doing, and they can only fuse the minimum number of vertebrae, the overall fusion will not effect the growth of the spine as much as a full fusion. A full fusion would compromise her lung function even more. The EB issues complicate everything - any options. Have you gotten more than one opinion from a pediatric orthopedist who has experience treating kids with mulitple medical issues? There are only a handful out there I would trust my child's life to. I wish you the best. This is a hard decision, I know.

    My son had a fusion surgery as an infant (11 months old) and also had VEPTR rods placed at age 6yrs old. Because of the fusion (T5-L1) his trunk is about 6 inches shorter than it should be at 11yrs old. His total lung function is 43%. Our goal with the VEPTR is to maintain lung function. We know he won't get better lung function. There are so many variables to this. I'd be happy to share any of our experiences with you.

    Keep us posted.
    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/

  4. #4
    Join Date
    Jan 2006
    Posts
    78
    Hello,
    Have you gotten her pulmonologist and orthopedic surgeon and possibly other doctors who are involved in her care to speak with each other about the pros and cons of either surgery? To help come to a decision. I needed to do this with my son's doctors before he had his spinal fusion surgery since he was at a high risk of pulmonary complications following surgery and I wasn't sure whether or not he would be able to get through the surgery. My son is 10 years old and he was fused over this last summer. Luckily with no complications. It is a very difficult decision you have to make for her given her age and circumstances. Either option has its potentional risks. Getting other opinions too would help as well before coming to a final decision.

  5. #5
    Join Date
    Sep 2006
    Posts
    2
    Friday we go for a 6th (i think) opinion. Most have no idea which is the better way to go. Everyone has told us its our desicion. Most are leaning toward the fusion, because the thought of her undergoing majory surgery every 6 months scares the heck out of them. The Pullmonaologist want us to do the fusion to prevent any further damage to what's already been done.

    No one can seem to tell us how much restricted lung capacity she'll have if we do the fusion. But maybe its something that can't be predicited? Would it been any different than someone who has ashma?

    thanks,

  6. #6
    Join Date
    Jan 2006
    Posts
    78
    It sounds like you have done your homework with several opinions and getting the specialists to talk things over with each other. Are they able to test her lung capacity right now or if she has been tested do you know where she stands? If the curve is thoracic it is likely affecting her pulmonary status. If things went alright with the fusion surgery I would think her pulmonary status would improve in the short term because her lung wouldn't be crushed. The problem is the long term outcome because her lungs are not fully developed and she has a lot of growing to do yet.

    I can only imagine that it is difficult to even find a parent whose child has the same unique circumstances your child has to talk to about what they decided to do and how their child has done. When it comes down to it the doctors always tell you it is your decision in the end. I know it is that feeling of damned if you do, damned if you don't.

    It sounds like her doctors are leaning towards the fusion. You will have to go with your own gut feeling after you have all the information in front of you and if you have a partner or family to discuss things and see if everyone agrees on what is the best thing to do for her.

  7. #7
    Join Date
    Dec 2005
    Posts
    40
    Hi

    You have gotten some excellent advice here and also sounds like you have been already doing some great research. I just wanted to let you know that my son, Cole (now 12 yrs old), also was fused (partially) at a very young age. He had his first fusion at 18 months old and another one at 3 1/2 yrs old. It had to be done because his curve was so bad it was effecting his lungs and heart which would have been crushed from the continueing progression of the curve.

    So now yes he is alot smaller then most kids and his torso his way shorter then the average kid his age tho he does have a very long set of legs. We were told when he was a baby that because of the scoli and fusion he will have a body somewhat like a spider (long legs and arms/short torso) which is kinda what does look like tho very unnoticeable when dressed. The Dr's will always tell you that YOU THE PARENT has the last word on what to do/your decision - they can only direct you as to what they think s/b done. It does sound like they think fusion would be best and I think if many surgeries would hinder her other medical condition then the growing rods would be out (tho maybe they can be an option later down the road). Cole has growing rods also which were inserted at 7 yrs old-he has had about 4 surgeries more since then. He also had a halo with traction and a permanent rod inserted at 5 yrs old. The Dr now keeps telling us he needs final fusion done but we are putting that off until absolutely necessary-hopefully when he is older and completely done growing.

    Good luck with your next appt! This is a major decision that needs much thougght and sounds like you are on the right track. Good that you have seen Pulmo and Ortho Docs and having them decide as a team is a very good option.
    Stacey

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