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Thread: Questions on Fusion

  1. #1
    Join Date
    Jul 2006
    Location
    Pennsylvania
    Posts
    21

    Questions on Fusion

    OK.. I know I haven't posted in a while, but Emily has been doing really well since her stent procedure. So we finally broke down and went to see the Orthopedic doctor to see what the next step was with her back - since we now have the heart fixed for at least a year or two.

    Now initially they were touting VEPTR - since she was an "ideal" candidate for it. So I did a lot of research on that.

    At yesterday's appointment (which I didn't go to) she tells my husband that her curvature was 67 degrees the last time they saw her (last summer) and now it's only 60 degrees. So she's not worse like they thought. The doctor thinks now that they should fuse a couple of the vertebrae together - which should hold her until she's a little bit older and then they'll do the VEPTR (she thinks). She wouldn't even discuss anything else - because they need to do a CT Scan to really get a good look at her spine/vertebras.

    Now - has anyone had their child's vertebrae fused and then went on to have the VEPTR. What were the results - did you have more issues because of the initial fusion - if you had to do over again - would you have them just do the VEPTR?

    As much as I like the thought of not doing the VEPTR this early - I'm really getting red flags about the fusion. I'm also concerned as she has fused ribs and how is that going to affect her lung growth.

    If you were me, what kind of questions would you ask the doctor?

    I appreciate any and all comments.
    -------------------------------------
    Erin - Mother to Emily who was born with:

    1) Pulumnary Artresia/Tetralogy of Fallot
    - 2 conduit replacement surgeries
    - 2 stents inserted in conduit

    2) Congenital Scoliosis (9 incomplete vertebrae - 2 hemi)

    3) Cystic Kidneys
    - Right one non-functioning
    - Left one growing and working well

  2. #2
    Join Date
    Aug 2006
    Posts
    369
    Have you looked into serial casting. I think Celia has had fabulous results!! You should check her posts.
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  3. #3
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,750
    Quote Originally Posted by kerina313
    Now - has anyone had their child's vertebrae fused and then went on to have the VEPTR. What were the results - did you have more issues because of the initial fusion - if you had to do over again - would you have them just do the VEPTR?
    I believe Carmell's son, Braydon, had fusion first and then the VEPTR later on. She would be an excellent person to speak with.

    Good luck.
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  4. #4
    Join Date
    Mar 2004
    Posts
    1,140
    Quote Originally Posted by christine2
    Have you looked into serial casting. I think Celia has had fabulous results!! You should check her posts.
    Christine,

    I have a feeling Emily has congenital scoliosis because her mom posted in the congenital thread. Serial casting is very effective for children with idiopathic scoliosis and doesn't work the same way for congenital unless the doctors are trying to stabilize a compensatory curve but this is also a very controversial area as some doctors are very much against bracing congenital curves. It's a *big* deal for some of these doctors


    *

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  5. #5
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi,

    Sorry to hear your appointment didn't go quite as you planned. Yes, Braydon had a fusion 5 years before he had VEPTRs placed. I would NOT do fusion again. Period. The VEPTR devices are more effective with a flexible spine. Fusion is a HUGE surgery for a little one. I would not suggest that at all, unless there were extreme circumstances. I know you said that the doc suggested fusion now to probably "buy her time" before VEPTR, but honestly I think that's a bad idea. Especially with her already fused ribs and potential for compromised lung function. I would strongly suggest getting another evaluation by a VEPTR doc who has extensive experience. I'd be happy to give you names of docs I would trust. Having her heart issues and other medical issues plays into this too. You need a doc who understands the complexity here.

    One good thing is that the spine hasn't progressed rapidly like it could have. That doesn't mean it won't, but for now, you have time to continue researching and finding the right plan for her. VEPTR implant surgery is a big surgery. I won't sugar-coat it. However, the expansions surgeries she'll need are often done as out-patient procedures. The kids tolerate these very well (unless the child has an anesthesia problem or something). I think your uneasiness about this new recommendation is telling you something - that your mother's instinct is kicking in and you need more information before agreeing to a HUGE surgery.

    Casting would NOT be an option for Emily because of the congenital malformations (casting couldn't "fix" that) and becuase of the fused ribs. You don't want to do anything to restrict lung function, even tho the casts that are done correctly have lots of breathing and tummy room. I wouldn't even consider that for her (again, not medical advice, just a mom who wouldn't go down that road).

    Back to the fusion before VEPTR - Braydon's lung function right now (almost 12yrs old) is only 47%. If he had VEPTR instead of fusion (and the VEPTR was successful as it has been) his lung function would be better. Having 6 years of a fused spine meant that his lungs did not have room to grow during those critical early years of lung development. I asked Braydon's ortho recently (finally got the courage to ask his opinion about what I already knew, basically) if he would have fused Braydon had he known about VEPTR when Braydon was born. He said NO. He said there is a new study being done by Drs. Newton and Thompson that are proving that early fusions are bad for future lung function. The study actually compared three groups of kids - group 1 was children who had a single growing rod placed. group 2 had dual growing rods. group 3 had fusion only. By far, group 3 did the poorest (bad English?) in future lung function. That was a confirmation to me that early fusion is NOT a good idea, only in specific and rare circumstances (ie, SINGLE lumbar hemi, etc.).

    My point is that you need more information, IMHO. Maybe you could email or call some of the VEPTR specialists and see if they can offer any insight. I'd be happy to help you with contact information. Done rambling.
    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/

  6. #6
    Join Date
    Aug 2006
    Posts
    369
    Celia

    I do now remember someone saying that. (congenital vs idiopathic and bracing)
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  7. #7
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,750
    Kerina,

    In addition to anyone Carmell could recommend, I know that Dr. Betz and his team at Shriners in Philadelphia have been doing the VEPTR surgeries for quite some time.
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

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