Syringomyelia

Anybody know anything about this?

I have read a ton.....but I wanted to know if anyone has any first hand experience.

 

All I know is what they look like on MRI. I think surgery can be performed on them, if they aren't too large. Sometimes they cause no symptoms at all and other times the symptoms can be quite severe.

I have a feeling you aren't just asking to be asking, so I'm sorry you're having to read up on it at all. I wish I could help with more.

 

You are correct. My 2 year old son has a syrinx cyst in the lower thoracic. Found it on an MRI he had to explore a deep sacral dimple. We have an appointment with a neuro-surgeon tomorrow, and I'm just nervous about what to expect.
Thanks for your concern.

 

Dang it I'm sorry. So sorry.

Has he had any symptoms to your knowledge? Ie... any developmental things with walking or his hands/arms? That's a tough area to know for sure if anything could be noticeable because it's iffy where it controls sometimes.

Ya know, it absolutely could be what they're going to call a 'normal varient' and will cause him absolutely no trouble as he ages. I would have to read up or talk to one of the docs, but it might even be something that with age, might correct itself. Did you find any of that in your reading?
Which group are you seeing?

Know you guys will be in my thoughts tomorrow and please let us know. And if I can do anything, whatsover, I'm just a pm away, or you know how you can get my number if you need it. I mean that too.

 

Thank you so much for your concern. I am hoping that it will just go away, but my reading is leading me to believe that it typically doesn't go away. It may not present itself for years, and I expect we will just watch it over time.
Hopefully, if it begins to enlarge we'll know soon enough to treat it.

Thanks, again.

 

How did it go today? I've had this on my mind.

 

We have to have another MRI with contrast in May to check for and tumor or scarring on the cord that might be causing the syrinx. Nothing more but wait til then.

 

Hmmm. They didn't contrast him before?

Ok time for a pm.

But that's good news.

 

No contrast last time.....the MRI was originally for a sacral dimple to check for a tethered cord. They weren't looking for syringomyelia, but just happened to see it. The cord is not tethered, BTW.

 

Good Good. Ok. I'll hush up then.

But I'm a firm believer in managing your own/children's healthcare. Medicine is to the point that the clinicians, providers whomever... are overwhelmed from the front desk to the exam room.
It's easy for a ball to be dropped. I see it daily. One person in a chain of several can make one mistake that could affect you drastically.