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Just diagnosed with syringomelia, what should I know?

My 17 year old daughter has just been diagnosed with syringomelia. Her consultant has requested a 4th MRI with contrast. I haven't really got much more knowledge on the subject so if anyone could point me in the direction of what I should know that would be great. They have recommended annual MRI scans, but how do I know whether its changing or getting worse between scans? She is a very active teenager, does cheerleading, goes to the gym, the diagnosis only came about because she was suffering with neck ache which couldn't be resolved by the chiropractor so this has come as a complete shock. She is also suffering with needing to wee on regular occasions, is this connected? They don't believe she has chiari malformation, but have said the syrinx is in the mid thoracic spine so not treatable. I am concerned she could develop disability issues or further pain. Any support will be gratefully appreciated.
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620923 tn?1452915648
Hi and welcome to the Chiari forum.
Since I see you are in the UK, The Ann ConRoy Trust is where you need to look for help. here is the link

Since it is located in her mid thoracic spine, did she have an injury there? I would also avoid Chiropractors until you see a specialist....and yes her bladder issues could very well be related to the syrinx.Depends exactly where it is. Did they indicate how they feel  she developed the syrinx?

I would also suggest she refrain from her Cheerleading....it could aggravate the condition.

Not knowing all you can request in the UK regarding medical records, (we get copies of ALL tests including MRI on disk in US) that could help you and other Drs understand this better....but a specialist with Chiari and Syringomyelia is best.
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19681337 tn?1531695242
Hi, I'm a 22 year old with syringomyelia. I wouldn't have her refrain from any activities as long as she doesn't feel her symptoms worsening when she is active, but I would have her keep a close eye on it. Does her doctor recommend she have any type of surgery? Has she had a brain MRI?
Helpful - 0
Thank you for your reply sararose9. Her Doctor has said there is "no surgery",  she has had a brain MRI and positively she has been told that that there are no signs of chiari malformation and that she has extremely good CSF flow. I will suggest to Maddie if she feels her symptoms worsening when she is exercising to slow down, which I think she is currently doing. She was lifting weights previously which she doesn't do any longer thankfully. Thanks for your response.
You're welcome! I stopped lifting weights as well as I noticed it made my symptoms worse, but there should still be a lot that Maddie can do despite her syringomyelia :) she'll just need to monitor how she feels and she'll be just fine. The doctors will let you know after the annual MRIs if anything has changed or gotten worse. Good luck to your Maddie, I'll be praying for her!
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