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kerina313
04-12-2007, 06:43 AM
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.

christine2
04-12-2007, 07:04 AM
Have you looked into serial casting. I think Celia has had fabulous results!! You should check her posts.

mariaf
04-12-2007, 10:23 AM
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.

Celia
04-12-2007, 11:41 AM
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 :rolleyes:


*

Carmell
04-12-2007, 12:33 PM
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.

christine2
04-12-2007, 01:11 PM
Celia

I do now remember someone saying that. (congenital vs idiopathic and bracing)

mariaf
04-12-2007, 01:33 PM
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.