Hey all. I finally had a cine MRI/CSF flow study yesterday. It took entirely too much effort on my part to get this done. None of my local doctors even knew what a cine MRI was, none of the local neurosurgeons did anything more than nod blankly at me when I suggested it, and none of the local imaging centers had a clue what I was talking about once my saintly PCP wrote the prescription for me to have one (I had to spell it for her, hah!).
I've had 5 MRIs this year, and this one was by far the most torturous. I already had a mild pressure headache at the back of my head when I arrived, but lying on my back and adding more pressure to the back of my head was just awful. Since I couldn't move, there was no relief. The pain got so bad toward the end of the appointment I started getting dizzy and nauseous, and when I was looking in the mirror afterwards to put my earrings on, I was shocked to see both of my eyes were terribly bloodshot. After an hour of being upright, the eyes got better, and the pain and dizziness scaled back to where I felt more human. Still, the headache stayed with me all day and into last night, getting a whole lot worse when I lay down in bed to sleep for the night. Ugh.
I have the images on disc, but obviously won't get results for a few days. I find my Chiari friends often have an expert eye of their own, so I was wondering if anyone has any insight on what they're seeing. I understand the obvious caveat that no one is a doctor and I should take everything said with that grain of salt.
I'm attaching various images, trying to show the CSF flow and such. I'm quite distracted by the huge bright spot in the back of the head, visible in almost every image. Is that an area of hyperintensity perhaps? Or maybe a buildup of CSF?
Hey Mandy. Thank you. :) My headache was awful most of yesterday, but finally calmed down a bit so I could enjoy my evening. It originally kept getting worse when I'd try to lie down. I haven't get figured out how to get my cine MRI to play, but I tried to show in my attached images the maximum flow pics. It looks like the CSF never gets past my Chiari.
I'm currently a bit more concerned about the large area of hyperintensity in the back--the bright white. I'm wondering if it's pooling fluid or a lesion or something.
Right now I just wait for results to come in, I guess.
Hi, Just wanted to write you to let you know that I share in your frustration with getting a CINE MRI. Did you get your results yet? Did you get to talk with your doctor about the results? I've been fortunate that almost everywhere I've gone for MRI's of any type I've been able to ask for the results from the MRI places and they've usually gotten them to me in the next day. Don't be afraid to ask. I am a missionary and am most of the time overseas so I'm not sure if the MRI places have more compassion in getting me the results because I'm usually on my way out of the country and only have so much time to get to doctor's appointments. I would never have thought to get the disc's or results, but my sister went with me for my first one and told me to ask & so far everyone has been so helpful. I went to a neurosurgeon in upstate NY who said that he never opens the dura and the more I read up on it I just didn't feel comfortable with someone who wasn't willing to be flexible based on the situation/patient. During the process I went to my primary care physician and tried to get her to order a CINE MRI since I had found online that many times it helps determine whether or not to open the dura and if the surgery can help. She wouldn't order it for me but only because all the neurosurgeons in our area don't use it and she wasn't sure what she would do with the results if she didn't really have anyone to talk to about it. I was so frustrated! The frustration helped me push for and be willing to go to a specialist! So far my experience has been that the radiologist's with the specialist have a much better idea of what to look for and the reports are more detailed than from my local people. I also had a precious lady who pulled me out from the MRI every now and then between the testing to let me get some fresh air! When I went to a specialist he ordered a CINE MRI and I was able to have a phone conversation with him directly about the results of it and he looked at it and had a slightly different opinion than the radiologist had. Just wanted you to know that I share in your frustration and am thinking about you as you get your results. (Also, the MRI & Cine MRI disc's wouldn't work on my laptop so I could only look at the pictures one at a time if I downloaded a program from online......) Let me know how you are doing, ok? God bless you,
Yes, I got my results, thank you. Sorry for the delay--it's been a rough month.
The weird thing--although considering Chiari, probably not that weird--is the report came back normal flow. It seems *really* clear to me in the images that there's a blockage in the back due to the tonsillar herniation, and I was ticked off that it said normal. Lying there in that MRI machine, I was in so much pain that got so much worse, I became convinced something was wrong with my head.
I never could get the MRI to play, but I can get the frames to advance one at a time so it's like choppy stop motion--and again, it seemed like little to nothing was getting past the tonsils.
The written report says almost nothing, and actually said there is normal flow. I was shocked to read that because it seems very obvious to me watching the CINE MRI that nothing is getting past the herniation at the back of the skull. The report says the "tonsils have a rounded appearance, without significant molding around the brain stem or crowding of the CSF. ... The phase-contast CSF flow analysis shows normal pulsatile CSF flow in both the ventral and dorsal subarachnoid spoace, without evidence of alteration in flow dynamics related to posterior fossa anatomy."