They are finally ordering a CINE MRI for me at Wash U/Barnes in downtown STL, MO. I am relieved, yet worried bc about 3-4 weeks ago I was having the worst headaches episodes of my life. Well now I’m not in as much pain and sometimes headache free. Now, i have been having more discomfort in my ears, jaw, and neck/upper back in the last few days.
My question is: Will the difference in pain/episodes cause the MRI to not show blockage??? I’m worried bc it’s taken weeks to get the appt and I wish they could have had it done when I was in enough pain that I was convinced I was going to stroke out or something was going to burst in my head.
Anyone, any ideas about if it’ll still show blockage if my pain isn’t raging this day?
Thanks so much,
Katcap (kathleen)
hi
great question
my understanding is that yes the blockage will show up even if one is pain free for that period of time during the test
let us know how you make ok
Thanks Lori.
I just feel like there HAS to be an answer. My NS told me the other day he thinks my Chiari-malformation is mild. I have 9mm herniation. And no syrinx, but they also still haven’t ordered any mri’s of the mid/lower spine. I have urinary/bowel problems and some back pain. Anyway the NS told me again… that it sounds a lot like migraine.(I’ve been told that for 17years, but they don’t add up to be migraine with all my other symptoms) But he told me, “u don’t fit perfectly in a Chiari-malformation box, but u also don’t fit into a migraine box.”… I feel like an idiot to be in so much pain and always pass their stupid neuro tests.
Part of me wonders if there should be “categorized chiari” ie: this person presents mostly headaches, this person presents with neuro–defects, this person is more motor defects, etc. Bc I feel like if u’re not drooling on yourself or falling-over urself, then they don’t believe us.
That’s why I so badly hope the test shows something.
Thanks again, whomever reads these. 
Kathleen,
When I had my CINE completed I was having a good day and it still showed the blockage. So Lori is right. Hope it goes well for you
Mike
Thanks Mike. Feeling a bit better about this now. Thanks guys.
Thanks Beeba.
My daughter has only been dealing with this for 19 months...not anywhere near 17 years. She fights so darn hard to live "normally" and fight through the pain. Anytime it's too much and she's stuck in bed (literally has to crawl on the floor to get to and from the bathroom) the NR or her primary care doc has a fit. They say she has to push through no matter what.
THEN an NS says she's doing too well for surgery. Usually they "reserve" it for those who seem to be doing worse.
Maddening to say the least.
Anyway, from what I've seen in her case, the blockage of fluid shows up in the MRI no matter the pain level. Sane on a day that's 5/10 vs. a day it's 10/10.
Gma7938 that’s awful. Even though I thought I may pass out I never crawled. Though a few times I may have thought I’d have to. Good luck. And thanks for the reply.
Also, this last bout of episodes has had me on Short Term Disability/FMLA. Hoping to return to work soon. The episodes are so unpredictable that I can’t go many places. It’s so isolating and hard to explain. Also, doc doesn’t want me driving.
They called late today and told me my CINE is scheduled for May 17th. That is 2days after my 27th bday. This is not how I thought I’d be spending this bday… this year was supposed to be different (pain-wise)… but hopefully, this is a start to them “believing” me.