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Soon to do VEPTR... or growing rods.
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Stefan
Posted 2010-10-07 7:12 PM (#39980)
Subject: Soon to do VEPTR... or growing rods.


Member

Posts: 11

Son is 7 1/2 years old now. Born with VACTERL (saw that there are more in here); right leg is about 8-9 inches too short (wears prostethic to lengthen it), instead of right arm there is only a small hand of sorts attached directly to where his shoulder should be (parts missing there too), trachea-oesophagal fistula, small heart-problem, bigger lung-problem, even bigger problem with weight-gaining and slight scoliosis.

During the last 1 1/2-2 years his scoliosis (lumbar region) has increased, I don't know the figures but visit to back-orthopedist the other day showed that surgery will have to be done within the next 6-10 months (give or take).
We will try to stall the surgery with a brace, if he can wear it.
Doctor said that technique will be growing rods or VEPTR.
From what I have read over the last days, VEPTR seems like the better choise (boy's ribs or vertebraes are not fused as far as I know).

I have two questions at the moment:

1. Rods or VEPTR? Any experience comparing the two? Why did your doctor choose VEPTR over rods?

2. Mobility. My son is very mobile and agile. Doctor says that operation of course will make him stiffer. But how much? Can you give examples of things your kids could do before, but not after, such as for instance bend down and put on shoes etc?

Thanks
Stefan, Sweden

Edited by Stefan 2010-10-07 7:13 PM
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Carmell
Posted 2010-10-07 11:10 PM (#39982 - in reply to #39980)
Subject: RE: Soon to do VEPTR... or growing rods.



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Posts: 3243
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Location: Utah

Hi Stefan and family - Welcome!

 My son, Braydon, is also a VACTERL kid.  He is now 15 years old.  He has a 2 inch (5cm) difference in his leg length (right leg is shorter than the left).  He will be having leg lengthening surgery after he is skeletally mature.  Braydon's biggest medical hurdle has been his spine issues.  His scoliosis was severe at a young age (75 degrees at 9 months old).  He had VEPTR rods placed when he was 6 years old.  The VEPTR rods are designed mostly to help stabilize the spine (if scoliosis improves, that's a bonus) and in some cases help stabilize lung function.  For lower curves, the VEPTR can help stabilize the spine from getting worse.  Growing rods would be placed along the spine.  VEPTR rods would be placed away from the spine, anchored by the ribs at the top and spine or pelvis at the bottom.  Braydon has two rods on the right side of his back.  One supporting the spine and one supporting the right lung.  He has had these rods for 9+ years.  The ONLY thing that is different for him is that he can not do rounded somersaults.  He can't round his back to curl and roll over.  He plops a lot if he tries that.  He can do so many other things.  He can sit cross-legged on the floor.  He can wrestle and roll around on the floor playing with his brother and dad.  The impact of the VEPTR rods on him physically is minimal.  Because Braydon's scoliosis was so bad, VEPTR has been a blessing.  If your son's curve isn't severe, or if his lung function is not being compromise, then maybe any rod surgery can be put off.  You certainly have time to research and make sure to find the right plan for him.  I wouldn't be surprised if you tried a brace and it fails.  Bracing our kids has not been successful in delaying or preventing surgery for scoliosis.  If he has some vertebrae that are malformed, then a brace will be not useful at all.  An external brace can not make the internal structure work better.  He may be better off being an active, healthy kid.  Being active helps keep the core muscles strong for if/when he does need surgery.  Please discuss these kind of things with your doctor.  Also, I understand how difficult it is for our VACTERL kids to gain weight.  One of the many variables with this is that they use so many calories trying to breathe, that there are not many calories to grow and mature.  I would suggest having pulmonary function tests to determine if his breathing is affecting his growth.  Braydon's breathing is affected by his scoliosis.  We had no idea.  His body compensates very well and he has never needed oxygen to breathe or any other intervention.  But, his total lung function is 39%.  Not favorable, but for him, it works.  He is a very active teenager.  Good luck and keep us posted.

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Stefan
Posted 2010-10-08 8:08 AM (#39985 - in reply to #39982)
Subject: RE: Soon to do VEPTR... or growing rods.


Member

Posts: 11

Thanks Carmell.
Viktor was treated with oxygen until about 3 1/2 years old. We had him hooked up to an oxygen-concentrator at home. As it is now, his saturation is close to normal. He does get winded more easily than his twin-brother, but all in all, the lung-problem is not primary concern.
I realize brace will not fix anything, but every week we can postpone surgery is a blessing.
Viktor has started more and more to complain about back-pains now, especially late in days when it is worn out. For us that is the primary concern. As I see it, pains will increase the more it curves, since it tires more.

Do you have to wear special sweaters or similar to protect the area where the rods are placed? As I understand it, you can feel the rods from the outside?
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Carmell
Posted 2010-10-08 9:49 PM (#40003 - in reply to #39985)
Subject: RE: Soon to do VEPTR... or growing rods.



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Posts: 3243
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Location: Utah

Hi again.

You mentioned back pain.  Is it low back pain?   Does the discomfort come and go?  Does he have changes in his bladder and/or bowel habits?  Does he ever have a tingly sensation in his legs/feet?  Has he had a full spine MRI to rule out a tethered spinal cord?  (sorry if you mentioned this already, I forgot what you said about his VACTERL issues.)

I would have an evaluation with a pediatric neuroSURGEON (not neurologist) to make sure he doesn't have any problems with his spinal cord.  This is a common occurrence with our kids.  Especially if his scoliosis curve is only in the 30s.  He should not be having pain related to scoliosis.  Something else is causing the pain/discomfort.

I would dare bet his breathing isn't as good as you think.  Braydon always has oxygen saturations in the upper 90s (97-98).  But, when he had his VEPTR surgery, his body had a very big growth spurt.  He gained 3 pounds in 6 weeks, grew more than 2 inches in that 6 weeks, etc.  His body was compensating for the low oxygen, and he seemed fine.  Surgically, he was not fine.  Has he had pulmonology function tests?  This is the only way to determine his lung function.  I hope I am not being an alarmist here, but he is at a critical age for preventing future lung function compromise.  It is VERY important to address lung function before the lung tissues mature (they mature around age 8yrs old).  My worry for Braydon was that he would be oxygen or ventilator dependent by adulthood because we didn't know to address the lungs at an early age.  This is something the orthopedic surgeons do not fully understand (most of them). 

Please know I only have the best intentions in writing.  You (the parents) and the doctor know his condition best and can make the most informed decisions.  And yes, a brace may help prolong surgery, but there is no scientific evidence that this is true.  Bracing also often interferes with breathing.  He may struggle a bit with that.  Good luck and let us know how things are going.

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Stefan
Posted 2010-10-09 8:48 AM (#40008 - in reply to #40003)
Subject: RE: Soon to do VEPTR... or growing rods.


Member

Posts: 11

Carmell, your concern is appreciated, and your questions are most valid!

We do see a lung-doctor regularly. His lung-capacity is probably optimal for his current condition. The only extra we do now is that when he catches a cold or such, we give him Ventoline or similar. We instruct him to pace himself when he gets too winded.

The doctor who we have been talking with about the surgery is a back-orthopedist/surgeon.

Except for these two we have contact (more or less regularly) with: neuropediatrician, internal-surgeon (who fixed Viktor's t/e-fistula and other stuff inside), orthopedist (mostly for his leg), physical therapist, occupational therapist, dietist, cardiologist, habilitation-people, and probably a few I have forgotten about.
In his earlier years we coordinated so that we could do at least 3 or 4 calls to different specialists on each visit to the hospital.

The back pain Viktor has should probably more correctly be described as fatigue, not from the spine itself, but from the muscles compensating. After a full day at school even his twin-brother (no malformations) can be tired.

He has no problem with stool or urination. I can't remember all the examinations he has done, but I am sure an MRI of the back is in there too.
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Carmell
Posted 2010-10-09 12:04 PM (#40009 - in reply to #40008)
Subject: RE: Soon to do VEPTR... or growing rods.



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Posts: 3243
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Location: Utah
Thanks for the details.  It sounds like you are getting the best care possible.  That's what I was hoping for.  And yes, I understand that back discomfort and fatigue go hand in hand.  Active kids can wear themselves out before they realize it.  And I'm very glad you are seeing the lung doctor.  I figured you were already.  Just making sure.  The MRI thing is important, tho.  If you are not certain about ruling out a tethered spinal cord, please ask your neuropediatrician to make certain.  Sounds like you have a GREAT family! 
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Stefan
Posted 2010-10-13 3:49 PM (#40044 - in reply to #39980)
Subject: RE: Soon to do VEPTR... or growing rods.


Member

Posts: 11

We went to the brace-maker today. He took measures, then we will get the brace from Ireland in about 2 weeks or so. It will be a nights-only brace. Worn at least 8 hours a day. I asked about that since I have read that brace should be worn +20 hours, but got the explanation that this is enough for Viktor regarding primarily where the curve is, and current curvature.
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kim'smom
Posted 2010-10-13 11:23 PM (#40047 - in reply to #39980)
Subject: Re: Soon to do VEPTR... or growing rods.



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Posts: 72
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Location: Monroe City, MO
Hi Stefan, Welcome! I have also had the recent delima of choosing between growing rods and VEPTR. My daughter is very different from your son but I will let you know what I found out today. Today was the first day that I met with the surgeon that does the VEPTR surgery in my area (Saint Louis, MO). A couple of weeks ago I met with another surgeon that said growing rods were what my daughter needed but that he had to do some more testing to see if she would be capable of handling the surgery. When I asked him about the VEPTR, he said he did not do it and that was that. So today I met with a doctor that does both, depending on the patient. He suggested VEPTR for my duaghter and here are some of the reasons. VEPTR is less invasive not having go into the spine. Recovery time would likely be less. She would not have to wear a halo prior to surgery as she would with growing rods. A big one for us was that after the VEPTR we could handle our daughter (picking her up, postioning her) just as we do now but with growing rods she would need to be picked up by two people or use a lift for about a year. This doctor did say that there would definitely be complications with either surgery but as they expect this it is not usually a life threatening ordeal. AFter meeting with both doctors, we feel going with the VEPTR is the best thing for our daughter. Good luck with your decision. My prayers are with you.
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Carmell
Posted 2010-10-14 12:29 AM (#40048 - in reply to #40044)
Subject: RE: Soon to do VEPTR... or growing rods.



Expert

Posts: 3243
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Location: Utah

Hi Stefan,

One more question from me...  Did they put your child in a cast to make the brace?  Or did they take measurements with a tape measure?  I ask because if they just did measurements, the brace is totally useless, IMHO.  It is not made to fit your child exactly.  They need to do a cast molding of your child to make sure it is a perfect fit.  Without this, there is a huge margin of error.  I'm also hesitant about the time of wearing the brace... seems like the brace is just pleasing the docs (they feel they are actually doing something) and not really benefiting him, especially with his lung issues.  Please be very certain this is the right thing for him.  Good luck.

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Stefan
Posted 2010-10-19 2:37 AM (#40077 - in reply to #40048)
Subject: RE: Soon to do VEPTR... or growing rods.


Member

Posts: 11

Since I have now been reading about this stuff, I also had similar questions. I can't remember exactly what was said; but this solution would be optimal for Viktor at this time. As I understand it, brace will also be adjusted when it comes here. Will ask more when we go to try it out.
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Stefan
Posted 2010-11-05 4:34 AM (#40192 - in reply to #39980)
Subject: RE: Soon to do VEPTR... or growing rods.


Member

Posts: 11

Viktor has been using the brace for a bit over a week now without any bigger issues. He does not like it when we put it on, but he falls asleep as quickly as before. Biggest problem is when he needs to go to the bathroom.
Fit is good, we'll do a revisit this afternoon with the guy who measured him for it, and x-ray on wednesday (with brace on).
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Carmell
Posted 2010-11-05 9:40 PM (#40195 - in reply to #40192)
Subject: RE: Soon to do VEPTR... or growing rods.



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Posts: 3243
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Location: Utah
Thanks for the brace update.  Glad things are going as well as expected.  Many more best wishes he continues to do well.
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Stefan
Posted 2010-11-10 10:24 AM (#40218 - in reply to #39980)
Subject: RE: Soon to do VEPTR... or growing rods.


Member

Posts: 11

Did x-ray today. Guy doing the brace said we should be pleased. Looking at before- and using brace-pictures was good. With brace spine is close to straight.
He took me aside and said that he had expected results, but not this good.

I also did ask him why Viktor only needs it 8-10 hours night-time. As I understood it; new kind of brace and that the straighening it gives night-time carries over to day-time. Guess it also has do with where and how the spine is twisted/turned.
Asked if we should not do an x-ray soon at end-of-day, to see how spine looks then, "in 6 months to a year, we'll do just that", he said.
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Stefan
Posted 2011-09-17 5:12 AM (#41318 - in reply to #39980)
Subject: RE: Soon to do VEPTR... or growing rods.


Member

Posts: 11

Nothing really new, except I now know the brace is called "Providence", and back grows mostly at night-time, and that is why it can have good effect.
Viktor has no problems at all with the brace, quite the contrary, he thinks it feels good and relaxing putting on the brace at night.

Subjectively me and wife thinks that his back has not gotten any more crooked at least, since starting with brace. Think we'll be called later this autumn, will be interesting to see what doctor and others say.
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