Well, who could have known..

So, after 3 months of non-stop pain and Chiari like symptoms, 2 MRI's, spinal tap... I go to Hopkins and the dr says I've been misdiagnosed. Yes, I have a chiari but it's minor and that isn't whats causing my symptoms...

Wow...so what is my problem then? Why did 1 MRI say I had spinal fluid blockage caused from a Chiaria and the other say I had it too? He said that because my headaches are in the front instead of the back of my head, it's not a Chiari.

Sigh...now what to do...I can't function, my ears ring louder than a jet engine...

It's never simple.

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Comment by Vonda Gardner on February 24, 2012 at 1:28pm: I wasn't trying to minimize your pain Munchkinsdad. I wish I could take my daughter's pain, but I'm not sure she would agree. I have a lot of issues myself & she always tells me she'd rather be sick than me, because our world begins to crumble when I'm struggling. So it's hard to say which way is worse.

The real problem is that it's hard to find a doctor that will listen to the pain. For my daughter, they keep telling her they don't see any neurological issues of concern. UCLA tried to push us into Pain Management. I'm all for that, but I can't pursue everything at once, & that HAS to be secondary at this point.

It is nice to hear about the 17 year old. My daughter craves normalcy in a way that few would understand.

What I wish, is that doctors would become more educated about our issues, & quit giving us false advice, because they THINK they know more than us.

Comment by Munchkinsdad on February 24, 2012 at 4:08am: Vonda, I'm ashamed I'm even complaining! There is nothing worse than seeing a child suffer, especially your own. I know a 17 year old that had surgery 3 years ago. It took 1 year for them to get a dr to approve it. She is doing great! Once someone finally agrees with the diagnosis, perhaps your daughter will find relief and live a normal life! And we will try to keep those planes away from your house!

Comment by Vonda Gardner on February 23, 2012 at 9:11pm: My situation is incredibly similar. My daughter is 16 with much the same story. She has been in pain for 1 1/2 years. I am constantly amazed that she is able to endure all her pain & symptoms. She, too, has had 2 MRI's (tonsils hang 6mm), had the spinal tap, & quite a few other tests. We went to UCLA, where they gave us the same song & dance. We returned home (Vegas) totally hopeless. Had our first appt. with a Doctor of Osteopathy. She still thinks it's Chiari. I think we just have to keep searching until we find the doctor that knows as much as we do about Chiari. She wants us to travel to a Chiari specialist, but they're all in other states & I really have no money left to pursue it. I thought that UCLA would be the end for us. Unfortunately, my daughter is still nonfunctional, not attending school, has no social life, is always trying to find a semi-comfortable position, is trying the next pain relief, symptom relief, & I don't know what to do anymore. Sometimes I find myself thinking it might be better if a plane just flew over & crashed right on our house, instead of someone else's who's probably doing hunky-dory.

Comment by Victoria Shepard Hollingsworth on February 23, 2012 at 9:17am: I was misdiagnosed for five years because my MRI showed only a borderline Chiari. My symptoms got so severe, that I eventually had a drop attack where my vitals dropped dangerously low-only then did they call in a neurosurgeon who said I needed surgery. It turned out not to be borderline at all. Never give up!