Cine MRI for low level external communicating hydrocephalus?

[Bamboozlem]

Hi,
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,
C

[Lab-Scientist-Lady]

Hi,
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,
C

Hi,
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,

[Author]

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