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Detethering with VEPTR
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Maggie's Mom
Posted 2009-03-24 7:33 AM (#36890)
Subject: Detethering with VEPTR



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Location: Chittenden County Vermont
So we met a new pedi nerosurgeon up here in Vermont. We have gone through 3 in the past 4 years here in Vermont. Without reading the file she decided that Maggie's spine must be tethered because all VATER kids are usually. Maggie has a split cord from T-5 to C-5 and a small syrinx at the T-5/6. We had done MRIs just prior to Maggie's implant in 2005 because that past neurosurgeon was convinced that tethering was causing Maggie's scoli. We sent films down to Boston neurosurgery and Dr. Emans at that time and Dr. Scott the head of Boston's neurosurgery examined Maggie and went over the films. He felt very strongly there was no tethering. Enter new neurosurgeon- orders MRI which is fine because we needed one for Emans anyway. Radiologist basically comes back with same report as 2005. No changes. Neurosurgeon agrees to consult with Dr. Scott.
Here is my question- has any of the kids had a detethering while the VEPTR was in place? Was the detethering up high in the thoracic area? Did they have it at thier home hospital or at a Children's hospital? Did the neurosurgeon infer as ours in Vermont did that the VEPTR will do neurological damage by expanding her if there was an undetected tethering? Was I naive thinking that Dr. Emans and Dr. Scott who are renowned spine guys were right and would safegard my child regarding this issue? I am quite beside myself with this whole new development. There is no definate proof that Maggie is tethered but I would not want to put her in another surgery unless it was truely warranted.....
Sorry about my long tale but you folks are my life line to sanity.....
Susanne
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Zoes Nana
Posted 2009-03-24 8:08 AM (#36891 - in reply to #36890)
Subject: Re: Detethering with VEPTR



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Location: Plymouth, Pennsylvania
INTERESTING...
ZOE'S VEPTRS ARE NOW IN FOR ALMOST 9 YEARS...
NO TETHERING BEFORE, AND NON SINCE...
ZOE DOES HAVE A UN-USUAL SPINAL CORD...THE READING WE GOT WHEN SHE WAS
JUST A YEAR OLD WAS..."THE CORD ENDS ABRUTLY, AND IS THICK ON THE END"??
EVEN THOUGH THIS IS THE CASE WITH ZOE, AND SHE HAD NO TETHERING, I AM SURE THIS IS A POSSIBILITY...
AND I AM ASSUMING, THE REASON BEHIND ALL THE MONITORING IN OR..???
HAVE YOU ASK THIS QUESTION, REGARDING THE "RISK" TO EMANS?...I AM THINKING THE RISK IS THERE, BUT MINIMAL...KEEP US POSTED...
GOD BLESS...
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wilcoxs6
Posted 2009-03-24 10:01 AM (#36901 - in reply to #36890)
Subject: RE: Detethering with VEPTR



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Posts: 56
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Location: Monument, CO
Susanne -

I am so sorry that you all are having to question this now! I think that it is hard enought to start this whole process, trying to know what is right. Then to have to second guess everything that you have finally come to terms with! I truly am so sorry! I don't have any knowledge about the whole TC thing, but I will definetely keep you, your husband and Maggie in my prayers!
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Carmell
Posted 2009-03-24 11:15 AM (#36902 - in reply to #36890)
Subject: RE: Detethering with VEPTR



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Location: Utah

Susanne,

Lots of deep breaths.  Honestly, as I read (and re-read) your post, your new NS sounds very UNeducated in VACTERL and VEPTR kids.  Honestly.  His statistics of MOST VACTERL kids having a tethered cord (TC) is not accurate.  I think the number is closer to 25% or less, not MOST.  Expansion surgeries will not cause permanent damage to a mildly or moderate tethered cord.  I'm assuming that Maggie doesn't have any outward or physical symptoms of a TC.  You would absolutely know it if she did.  If she has outward signs, then this may be a different story, but I don't think so.

Braydon had a tethered cord release surgery at age 4 (2 years prior to VEPTR implant).  At age 11.5yrs old, he had a secong TC release surgery (post-VEPTR implant).  His TC problem is fatty filum, so in the lumbar spine, not thoracic spine.  The hybrid VEPTR is attached to the L1 vertebrae - the very spot the NS needs to go in and release the cord.  No problem.  The NS was able to release the cord without the VEPTR being in the way.  Braydon's TC release surgeries have been his smoothest recoveries, for some weird reason.

I would never allow my child to have surgery at a "regular" hospital (unless an emergency) - children's hospitals are better equiped to handle the various "issues" our kids have.  They seem to have a better understanding of the pediatric body.

If I were in your shoes, I would have another MRI done (since it's time) and send it to Drs. Scott and Emans for their opinion.  Make sure to tell them if she's having any "odd" symptoms (irregular bladder or bowel habits, back pain, leg/foot weakness/tingling, etc.).  Is the new NS in Vermont a PEDIATRIC NS?  Sounds like he needs a mega-dose of education in VEPTR and VACTERL kids.  Sheesh.  I'm sorry he frightened you, but I believe you know more than he does, at this point.  Don't panic.  Take this one day at a time, and get the answers you need to let him know he is not correct in his recommendations.  Hugs to you.

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Maggie's Mom
Posted 2009-03-25 10:34 AM (#36912 - in reply to #36890)
Subject: Re: Detethering with VEPTR



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Posts: 833
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Location: Chittenden County Vermont
Carmell- MRI done and already sent to both Dr. Emans and Dr. Scott. Thank you for all of your information- I really appreciate your wealth of knowledge and experience. I always feel relieved after I read a post from you.
Jobey and Julie- thank you so much for your support and well wishes.
Having a new doctor come in is always stressful but this time I thought I was going to implode from the stress. Now I am down to simmering .You all help. Thank you.
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gianasmama
Posted 2009-03-29 10:56 AM (#36964 - in reply to #36890)
Subject: Re: Detethering with VEPTR



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Posts: 25
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Location: Rochester, NY
Hi,
My Giana has a tethered cord up high in the thoracic area. Our neuro didn't want to detether at all unless it becomes symptomatic. She also had/has a large syrinx and her cord is very very tethered. Our ortho implied that the veptr would not prohibit detethering in the future if needed. Not sure if this helps but I thought I'd add what I know.
Dana
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Maggie's Mom
Posted 2009-03-29 1:13 PM (#36966 - in reply to #36890)
Subject: Re: Detethering with VEPTR



Elite Veteran

Posts: 833
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Location: Chittenden County Vermont
Thanks Dana, we went over the MRI with our new pedi neurosurgeon with imput from Dr. Scott and Dr. Emans. Maggie has a split cord malformation in two areas- at C-4 and 5 and at T-3 to T-6. They are the type that are split in the dural sleeve. She also has a long skinny syrinx from C-4 to T-6. Dr. Scott feels that the syrinx is part of Maggie's anomoly from birth. Our pedi neuro thinks it is because of the split cord that she refers to as tethered in the dural sleeve. Dr. Scott feels strongly that the fillum and our pedi neuro concurs is not tethered but bears watching. The good news is no surgery right now and once again we are blessed with a doctor who is willing to consult with the best in Boston but can keep track of Maggie in Vermont. Always throwing us a curve our girl- and she can't be satisfied with one rare split cord , nope she has to have two! Maggie has NO signs of tethering symptoms at all. Thank goodness.
I appreciate all the support.
Susanne
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Zoes Nana
Posted 2009-03-29 1:19 PM (#36967 - in reply to #36890)
Subject: Re: Detethering with VEPTR



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Posts: 3970
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Location: Plymouth, Pennsylvania
SUSANNE,
GLAD TO HEAR THAT YOU HAVE SOME SOLID ANSWERS, AND NO
SURGERY IS NEEDED AT THIS TIME...
GOD KNOWS, THIS CAN ALL BECOME SO OVER-WHELMING AT TIMES...

KEEP US POSTED, AND GOD BLESS...
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Coltman
Posted 2009-03-29 6:47 PM (#36970 - in reply to #36890)
Subject: RE: Detethering with VEPTR


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Posts: 4

As a parent, you are right to question everything. I work at the hospital my son had surgery at and felt confidant that I was making the right decision for my son. I thought I had asked all the right questions and was prepared for the outcome. WRONG! Hindsight is 20/20 and I think you are right to question everything and ask for multiple opinions. Your child's health and well being trump anything and if it takes a dozen specialists before you feel confidant that whatever decision you make is the right one, then please take the time.
Colton's Mom, Michelle
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