syrinx

[seandevinkelly5]

Our 11 year old daughter has been diagnosed as having severe scoliosis probably caused by a large syrinx that she has. We have a surgical date set up with a Dr Emans but our insurance refuses to cover it and instead wants it done by a Dr P Christopher Cook at Dartmouth. Does anyone have a child who has a syrinx and scoliosis and had surgery done? How did things go? Does anyone have any experience with Dr Cook? Is he good, bad or so so? Any advice?

Thanks, Tom

[mariaf]

Hi Tom,

Just trying to understand - your insurance is refusing to cover the surgery if Dr. Emans performs it - but will cover it if Dr. Cook performs it? Did they say why?

I'm sorry I have never heard of Dr. Cook. I have heard of Dr. Emans - but I'm sure you already know he has a reputation as a world-class orthopedic surgeon.

Good luck to you.

p.s. Another thought - if insurance coverage is an issue, you could always go to a Shriners hospital. Their surgeons are in Dr. Eman's class - and they don't charge for their services so your insurance company would have absolutely no input in the decision-making regarding your daughter's care, as it should be

[PLR]

Hi Tom

Our son was diagnosed with scoliosis about 3 years ago. Then they diagnosed him with a syrinix caused by Chiari malformation. They did a decompression surgery about 2 1/2 years ago, when he was 8. That surgery was apparently successful because the syrinx is all but gone now; the pediatric neurosurgeon is very pleased with the outcome.

However, about 6 months ago, they determined that his spinal curve had progressed. So now they're recommending spinal fusion surgery.

They told us that the decompression surgery doesn't always fix the spinal curve. I think they said that in about 1/3 of the cases, the curve gets better, in 1/3 it remains the same, and in 1/3 it gets worse.

My understanding is that they wouldn't want to do spinal fusion if the syrinix is still present.

Sorry, I don't know anything about the doctors you mentioned. We're in Atlanta.

Best Wishes

[emarismom]

Tom,

Has your daughter been seen by a neurosurgeon? I have always been told and read that the CM/Syrinx needs to be addressed prior to any fusion surgery. I have seen cases where the fusion was done prior to a decompression, but in those cases the CM/Syrinx were not identified prior to the scoli progression and need for fusion. Many orthopedics will NOT treat a child with CM/Syrinx unless the child is being followed by a NS. This was the case with my daughter who was diagnosed with all three at 5 years of age.

In many cases, decompression surgery helps to stabilize or reduce the scoli curve. If it doesn't completely stop the curve, it can buy time for the child to reach full growth.

I would definitely get the opinion of a neurosurgeon prior to doing a fusion surgery.

[Mom37]

My daughter had Syrinx

Our 11 year old daughter has been diagnosed as having severe scoliosis probably caused by a large syrinx that she has. We have a surgical date set up with a Dr Emans but our insurance refuses to cover it and instead wants it done by a Dr P Christopher Cook at Dartmouth. Does anyone have a child who has a syrinx and scoliosis and had surgery done? How did things go? Does anyone have any experience with Dr Cook? Is he good, bad or so so? Any advice?

Thanks, Tom

You can private message me and I will give you my email as easier to write back and forth if you want. I am very infrequent on the forum now. Send any questions if I can help. My daughter's severe scoliosis was caused by a syrinx. The syrinx was caused by Chari like PLR above. See www.asap.org on syrinx. My daughter had surgery for both the syrinx and the scoliosis. My insurance did have in network preferences but allowed out of network at higher rate to us and the insurance had to pay more too for the Neurologist. Is she getting surgery for both? My daughter had a pediatric neurosurgeon for the syringomyelia/SM and the Chiari I/CM. She had 2 large syrinx and the decompression surgery allowed them to "flatten/or drain" the spinal fluid pockets substantially. They said she would probably have to still have spinal fusion. Her scoliosis still had rapid progression and she still had to have surgery for the scoliosis with a pediatric orthopedic surgeon within 9 months later. We went to Texas Scottish Rite Hospital for Children which do not charge just as Shriner's doesn't. We had gotten a second opinion on her scoliosis not knowing about the Syrinx, at Shriner's in Erie, PA. We went to PA instead of TX since Pa did her brace and TX didn't . Landed up getting a third opinion at Scottish Rite, who diagnosed the syrinx and referred us to a great neurosurgeon who worked with us on costs. They took what the insurance would pay and so we were able to go to the doctor we wanted. I recommend Scottish Rite highly as they were the first of three doctors to check for a spinal cord issue. Shriner's was helpful in providing a hotel in Erie, PA. I recommend doing just as you are and doing all the research and ask all the questions you can so you can make the best choice possible.