scoliosis and syrinx

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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scoliosis and syrinx

Postby momoffiveboys » Thu Sep 10, 2009 1:34 am

My 14 year old son is almost 7 years post ACM decompression. He is now scheduled for scoliosis surgery next month, his curve is over 50 degrees. His syrinx had gone away for over 5 years and then last year it came back almost as large as it was in the beginning. My question for those of you that have done this, what impact on scoli surgery if any did the syrinx have? Our neurosurgeon left the island and the one that took his place is less than helpful. We are in Hawaii so we are very limited on our choices. We are using Shriners in Honolulu for the surgery. The neuro told me that "he trusts his exam more than any MRI" so he even refused to order a new, even though it has been a year since his last one. Any help would be greatly appreciated. My husband is in the Navy and his orders were changed so he could be here next month for this surgery, but I don't want to go ahead with it unless I am comfortable with the risks at this point.

Thank You,
Tammy
mom to 5 boys, twins, Wyatt and Garrett decompressed 2 months apart 2003, Garrett getting ready for scoliosis surgery
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Re: scoliosis and syrinx

Postby jupes » Fri Sep 11, 2009 8:57 am

Hello!

My daughter has CM/SM and mild scoliosis. She has not needed surgery so have no personal experience to offer on outcomes.

I would be concerned that the progression in the scoliosis and the development of the syrinx could be related to a blockage in csf flow Since it has been 7 yr since his decompression,scar tissue may have developed or there could be further crowding because of a growth spurt ect. Is he having any symptoms? If it were my child I would insist on getting a Complete MRI including CINE to check csf flow. If the chiari/syrinx is causing the progression in the scoliosis, I wouldn't think the surgery would be as successful until the underline causes are dealt with.

Considering your sons history, I can't imagine the surgeon wanting to operate without getting another current MRI. My daughter is the same age as your son and has MRI including CINE every 6-8 months. Our NS and other experts recommend kids at this age be monitored closely because things can progress quickly especially when children go through a growth spurt. If he does not agree to this and you are not satisfied with his explanation, I would seek another opinion. If you can not find a CM/SM neurosurgeon in your state,there are a few mentioned on this board such as Dr. Frim (Chicago) and Dr. Keating (Washington DC) that can be very helpful to out of state patients. You could check into sending them your sons MRI and history and they may be willing to provide some direction.

Good luck! Trust your motherly instincts and don't agree to anything until you are at peace with your decision!

Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: scoliosis and syrinx

Postby ccatfish » Fri Sep 11, 2009 11:33 pm

I would suggest to not just seek another opinion, but to find a different doctor altogether.
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Re: scoliosis and syrinx

Postby CamsmomKelly » Thu Sep 24, 2009 4:07 pm

Im with Jupes! There has to be reason the syrinx returned I think they should address the why before they do any surgeries!!!!! MAYBE if he needs something done they can do it all at once instead of 2 surgeries... Just a thought ..
Kelly
mom of Cameren 11 yrs. old
Chiari,retroflex odontoid,syringomyelia,scoliosis
Chiari decompressions 6/2005,5/2006
Syringopleural shunt 6/2009
Boston Braced off & on 6.5yrs
scliosis surgery- soon
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Location: Hazelwood Missouri


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