syrinx question--

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

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syrinx question--

Postby Mayzoo » Mon Jul 09, 2007 2:49 pm

I have a 5 yr old dd with ACM I, torticollis, Arachnoid Cyst, etc.......

Okay, to the question--one radiologist, one NS, and two neurologists say she has a syrinx.....I have seen what they refer too. I had one NL show it to me on her 08-06 MRI which was done due to syrinx style symptoms.

Dr. Frim did not look at the 08-06 MRI (did not have time), but looked at her 06-07 MRI (so did one of the NL's) and he does not see the syrinx. It is long but small maybe 1-2mm on the 08-06 MRI. Dr. Frim says all that matters now is it is not there now. I specifically asked about it and he took me into the MRI reading room so we could look at the MRI's on his screen. The 06-07 MRI was very dark in coloration since the it was a different MRI machine the "contrast" (not dye) is vastly darker on the other machine, making it harder to clearly see anything--especially something small.

I thought I saw it still there when he scrolled through the axial MRI's, BUT of course my only training is what I have had in experience since sweetie's DX's over the years, AND doc Frim is a renowned expert.

I worry since she still has symptoms, and it would be a surgery determining factor.

I have just decided to wait it out and see if "reappears" and becomes a concern to doc Frim. Her next MRI is a year away--do these things ever expand rapidly? The question......what would you do?
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Postby angie7 » Mon Jul 09, 2007 8:36 pm

Honestly, I would trust Dr Frim. I am not one to put faith in any doctor but Dr Frim is a leading expert in these types of things and I would believe him over anyone. If my own children would come down with this, he would be the first I would see.

It usually takes syrinxes YEARS to expand enough to cause serious, permant damage. but in saying that, it can happen rapidly too. This disease is so wishy-washy it is hard to give you a definate answer. But I would trust Dr Frim's opinion. He has been doing this for many years, and if he doesnt see it, I would believe him.
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Postby youngwife » Tue Jul 10, 2007 12:42 pm

I am having questions about Dr. Frim's findings about my daughter as well. His nurse said he reviewed her MRI, and that there is no Chiari malformation. Well, I am having such a hard time swallowing that when he did not ask for any other testing to be done. Could it possibly borderline chiari??? I guess I may need to email Dr. Frim's office with my questions. :(
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Postby Sara » Tue Jul 10, 2007 7:38 pm

In the center of every one's spinal cord is a tiny opening called the central canal. In some patients, you can see this on an MRI. When there is a pathological enlargement of this canal, it is deemed a syrinx. Many times 1 to 2 mm "syrinxes" are really just dilated central canals, a normal finding. Some radiologists will call it a syrinx just to cover themselves.

The problem is that we don't know how big is normal and how big is a real syrinx. There have been limited studies on these slit like syrinxes, but most small 1-2 mm dilations of the central canal are unlikely to ever change.

At any rate, you always follow the child, not the films. If your child has worsening of symptoms, then you would have it checked out regardless.
Here is one study for reference: ... d_RVDocSum

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