17 month old - Syrinx questions

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

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17 month old - Syrinx questions

Postby drea1890 » Sun May 15, 2011 9:07 pm

Hello everyone...I just found this forum and I am hoping some of you will be able to help.

My daughter was born with an anal/rectal malformation which caused much concern at birth. It's a loooong story, but they sent us for numerous tests/x-rays/ultrasounds b/c of her malformation, and at her spinal ultrasound/x-ray we ended up discovering that she has a Syrinx in her spine. Since then, we have seen a Neurologist at Sick Kids in Toronto and have gone for two MRIs -- our last one being only a few days ago.

My daughter is 17 months old now and has NO symptoms of pain or discomfort from her Syrinx. Will it necessarily affect her later in life? Does the presence of a Syrnix necessarily mean that she has Syringomyelia? It is my understanding that she does not have Chiari, but are all Syrinx's related to Chiari?

What sorts of questions should I be asking our Neurologist?
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Re: 17 month old - Syrinx questions

Postby pmaxwell » Sun May 15, 2011 9:55 pm

syrinxes can be caused by a number of differnce things and no, being diagnosed with a syrinx does not mean you have syringomyelia. Often they will use dye to determine if it is a true syrinx. Some have a diated central canel that did not close when the cord formed.
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Re: 17 month old - Syrinx questions

Postby *Hope* » Sat Jun 04, 2011 7:38 pm

Hi Drea, and welcome to the boards! I'm sorry you haven't had much traffic on this post, but the boards have been slower than usual lately. I encourage you to try posting on the "All about Chiari, Syringo, and Related Disorders" (click on this after you read this post -----> viewforum.php?f=3 )board too. It runs with quite a bit more traffic.

I'm so sorry to hear of your daughter's physical struggles. She's too young to have to deal with this stuff. I do not have SM, but it is my understanding that if someone has a true syrinx, then yes, they do have syringomyelia. Not all syrinxes are caused by CM, but a majority are. There have actually been several posts recently (on the board I mentioned above) from people who have SM without CM, so I know there are several in this community here.

I don't know a ton about SM, but I do think you need to make sure you rule out CM. Maybe a flow study (cine MRI) would be a good idea to make sure the fluid is flowing around the base of her brain. Also, just because they think she doesn't have any symptoms doesn't mean that she doesn't have anything going on. Since she's not completely verbal at such a young age, then she may very well have tingling, pain, burning, or numbness (off and on) that she can't tell the doctors about. Time will help with finding out all of that info. She'll be able to help you out a lot more with her communication in the coming months.

Try poking around asap.org site and not just the message boards. THey have a lot of info here. Also, post again on the board I mentioned. I'm sure people with SM will have some good ideas and questions that you should be asking your daughter's neurologist.

I hope you guys get some help with her physical struggles. Hang in there and don't be afraid to really push for answers on your daughter's behalf. Go mom! :)
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