Hey look: They are actually called tonsils! I thought he was just comparing them to my tonsils (which are always enlarged, and an apt comparison). But when I talked to him again yesterday, he said it again, so I decided to look it up.
Who knew?
He thinks that there's a possibility of Chiari Malformation, which has a high CFIDS/ME & FM comorbidity rate:
The best known of these conditions is the Chiari malformation, in which the cerebellar "tonsils" (a portion of the cerebellum, shaped like the tonsils in the neck) extend several millimeters through the opening in the base of the skull (the foramen magnum) that allows the spinal cord to attach to the brain. This puts pressure on the brain stem and spinal cord. In a less well recognized but perhaps much more common condition known as cervical stenosis, the spinal canal appears normal but is actually too narrow for the spinal cord. Sometimes a condition called syringomyelia develops, in which a cyst grows in the spinal canal, putting greater pressure on the spinal cord.
Yeah, I don't especially like the sound of any of those things, or the treatments (which say things like, gee, I don't know - brain or skull surgery), but ain't gonna worry about any of that until I have to. Got an EEG this week, the neurologist the week after. I will definitely keep you posted!
8 comments:
Fine. I'm an idiot. No news to moi.
You have an award at my blog!
Hi, hope things turn out ok for you.
I don't have Chiari,which is a good thing, but I do have a syrinx, just found out in October '06. I'm going for another MRI in November to see if my syrinx is progressing or staying the same.
I guess I need to subscribe to the Neurology journal..........like I have time to read that. I can see both plusses and minuses here. It would be nice to have some kind of answer as to what is causing your many symptoms. You are close ot Boston so I know you could find the best neurologist in the US except for UCSF. (hehe) Brain sugery would be scary and expensive in more ways than financially. Get the extra tests, see some specialists(again) and maybe you'll find out something new and useful. I'm 100% behind you whatever you do as always. Love and hugs.
This sounds rather intriguing. Who knew you could get a brain tonsil. I think you should probably see it as a positive thing: you've known there's something wrong for a long time but your doctors often only believe it when they can see something on paper. So there you go - brain tonsils on paper. A electronic hand hold to you for any other tests you end up doing x
I had several clients with Chiari's. They did well.
Janice - First of all: Never! You are one of the most intelligent people I know. I don't consider myself too slow either, and I was the one sitting there listening to him describe it thinking "gee, I wish he'd use the real words - I don't need him to dumb it down for me." Little did I know. We'll see what comes next - one step at a time like always.
Sylvie - Thanks so much ~ I had to look up syrinx, and I hope you are doing well too. BTW, I love your blog's name - as a 'procrasto-stitcher' myself, I completely understand!
Fluttertongue - Thank you for the hands: I can always use them. The EEG is no big deal, but I a little worried about what might come after that. Plus, the neurologists always want you to, IDK, walk and stuff. I'm not so good at that.
Tiff - That's so reassuring! If it turns out to be a source of my problems, I'll be glad to know someone who's at least heard of it before!
I found you by a basic "google Search" for Chiari while looking for any blogs associated with the disease so I hope you don't consider this an intrusion by a stranger.
There is plenty of good information out there on Arnold Chiari Malformation when you feel like you want to look.
A few first looks are:
http://www.chiariconnectioninternational.com/
(created and updated by folks who have been diagnosd) includes tons of good information and an on-line support group;
http://chiarian.blogspot.com/ - blog written by a very articulate and educated woman who has battled chiari and associated diseases for some time;
http://www.northshorelij.com/body.cfm?ID=6407 - link to The Chiari Institute @ Northshore Medical Center on Long Island, NY; and
by blog - http://headsaga.blogspot.com/
All of these will link you to lots of other blogs, informational sites and great support.
i have the first of these so yer. its a pain but living with it is better then living with someing caused by a botched surgery
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