NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Cine MRI for low level external communicating hydrocephalus? › Reply To: Cine MRI for low level external communicating hydrocephalus?
I’ll try to tell this story as succinctly as possible:
I was diagnosed with Ehlers Danlos just this year.
I went on a trip that involved about 5 days of driving, off road and on. My head and neck pain has always been bad, but since then (and during) it has gotten significantly worse, and I wonder how I will continue to function. I fired up the internet, started reading about Chiari and then external communicating hyrdocephalus. Geneticist said in the absence of balance problems and numbness in arms, no MRI. I asked again, and he agreed on the basis of my correctness about EDS. It hasn’t been scheduled yet. From what I have read, a Cine MRI seemed better. I can’t do a Cine MRI here, because they don’t offer them here in BC yet.
After he originally said no, I had a bit of a panic attack, but then figured out where to get it in the US. I read that Cine was better, as it measures CSF flow. I’m booked to have a Cine MRI in a couple of weeks, at my own cost, in Seattle.
I’m just trying to deduce whether low level external communicating hydrocephalus is something that will show up? I might be better off putting this money towards a new mattress, but I feel that I have to do something.
My head is in the 98% percentile as far as bigness of heads goes.
Signs from babydom – big head, sleeping so much my Mum remembers being concerned about it, pupils so large my Mum went to the doctor about it, extremely car sick as a child – throwing up everywhere (no vomiting any longer, mind you) , insomnia as a toddler.
I could be wrong as I have been wrong before.
Thanks in advance,
The MRI are only as good as the radiologist reading it. On many of us EDSers the external communicating hydrocephalous and Chiari are missed. I had a upright MRI and the radiologist miss my hydrocephalous. When you go make sure you get your images on a disk so you can take them to someone who knows about EDS. I don’t know if a cine MRI is better or not, It would depend if you have a problem with CSF drainage,