I have had 2 different MRI's for the headache's I've been having - never got headaches before - but these seem to come on pretty fast and very strong, so I started seeing a Neurologist.
Headaches went away for a little while, and just started coming back - so the Neurologist sent me to get an MRI of my neck (c-spine). Just got the diagnosis today - but again - as with the other ones - nothing seems to be wrong - spine is fine and aligned - but there was an "observation" that my brain kinda droops.
Is this Chiari? I started looking up "droopy brain" and found this site. The Dr really didn't go into it much and didn't even give it a name. I was kinda making fun of myself saying I have droopy brains - but apparently it's not something to laugh at. I guess I need more info on this subject.
I have to say, that is a really weird way for them to describe it!! Did they mention anything about crowding or a herniation? If it is Chiari, the Dr that took a look at your MRI pics does not seem to know a lot about Chiari otherwise I think it would be described differently.
There are different options that it could be:
First, you have the crowding in your brain but not a large herniation, this would be called Chiari 0 and will be very hard to get dx'd with unless you see a Chiari specialist. Most NS stand by the criteria that if you herniation is not at least 5mm, they won't do anything about it. The problem with that is, if you have crowding w/blockage of CSF flow, you can have symptoms just as badly as someone with a 10mm herniation. A true Chiari specialist will know the difference.
Secondly, you do have the 5mm or more herniation and it is just not being recognized. This happened to me, no mention was made on my MRI report and I was left for 6 months longer, rapidly getting worse and with no diagnosis.
So, my first question...when do you see this NL to go over your MRI? Be very clear to him/her that you want to address this. NL's are not the right Dr to be making decisions regarding Chiari and if they are good, they will refer you to a NS.
If that doesn't happen, you will need to do it yourself. Here is a list of specialists that other members here have used and liked, be careful to research them on you own too.
I can't stress enough how important it is to get a NS to look at your scans if there is any likely hood that it's Chiari!! Unfortunately, with this condition, most of the time we have to fight for ourselves!! This site is a really good place to get support while you are going through this, so please make use of it.
Carolyn did a great job giving u the info u need....the best thing u can do is find a true chiari specialist...use the list to research drs, u may need to travel to get to the right dr for u....but know they r out there : )
We r happy to have u join us, but not happy for the reasons that bring u.
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