Does anyone else have a chiari???

Discussion in 'Fibromyalgia Main Forum' started by theimpossibleflute, Dec 18, 2002.

  1. theimpossibleflute

    theimpossibleflute New Member

    I saw my massage therapist yesterday; she had taken my MRI's to Paul St. John (he started the neuromuscular massage therapy method). They said I have a chiari; my cerebellum (the round part at the back bottom of the brain) was being squished down into the foramen magnum (the round opening around the top of the spine). This could very well be the source of my troubles (that and the fact my legs might be slightly different lengths). My therapist said that my coccyx (tailbone) was slightly bent, thus possibly causing the chiari. This bend in the coccyx could be caused by some trauma from a fall. This can be fixed through manipulation of some bone going through the skull. Am waiting for an appointment with my family doctor before we move ahead with anything.

    I was wondering if anyone else out there knows they have a chiari also??

    It's curious...a little entertaining, even, if it didn't sound so hideous!!! I'm sure it's not the explanation for everything in this DD, but it's another partial hypothesis! Anytime the body starts making up for imperfections, the immune system kicks in and lets our body know something's wrong; hence FMS being an autoimmune disease. Anyway..just wondering...

    Happy, blessed holidays everyone!!

  2. lisjhn

    lisjhn New Member

    I was diagnossed as being at the upper range of normal for Chiari. My cerebellum has slipped 4mm. I think 5mm, they can officially diagnose it. So, whatever....I'm not sure what caused it to slip, but I was in a car accident on my 16th birthday and got whiplash pretty bad, and I also hurt my tailbone when I was young. It's crooked, I can't even do a sit up. It hurts when I sit on it the wrong way too, so I'm not sure where the Chiari came from.

    How many millimeters are you? I don't know if my symptoms come from that or not, my instincts tell me no. A lot of people get the surgery early on, even at 1mm!! I want to be sure where my symptoms are coming from first before doing a drastic thing like that.

  3. sapphire

    sapphire New Member

    I haven't been diagnosed but I have all the symptoms. I've been researching this for several months and I think it's a big possibility that I have this.

    I started having severe neck pain after I had surgery in July. It radiates into the back of my head. I also have blurry vision and all kinds of neurological symptoms that just do not fit with CFS. I also have trouble walking alot because my right leg is so weak. Anyway, I have way too many symptoms for there not to be something else going on. They are checking for MS right now.

    I'm also in the process of sending my MRI to a chiari expert. Then I will know for sure as it really hard to diagnose.

    From what I've read alot of people with CFS/FMS do have this also. There are some good informative sites with message boards. That's where I got the Dr. information.

    Anyway, sorry you have this. It can really cause problems.

    Take care,

    P.S. I never heard of the tailbone being involved in chiari. Interesting though, that's the only thing I've ever had broken. Not fun either.
    [This Message was Edited on 12/18/2002]
  4. theimpossibleflute

    theimpossibleflute New Member

    I was told they only do two different kinds of surgery for chiaris. One enlarges the area around the spinal cord, making it more likely for the cerebellum to slip down even farther. The other one cuts through the bone at the base of the skull and stitches the cerebellum back in place. The pain from the bone being sautered back together is more than the original problems in the first place. I am going to avoid surgery if at all possible.

    I don't know how many millimeters down my cerebellum is; guessing from the MRI's, I'd have to say maybe 2 or 3. Not much, but enough, apparently, to cause problems!!

    In the meantime, we keep searching!!!...

    God bless,