Chiari and conflicting opinions.

As you read previously, I had an appointment with a top chiari specialist last Friday. I haven’t written about it because I’m still mulling it over in my head, and I’m also waiting on another MRI.

I’ll just come out with it. The chiari specialist says I don’t have chiari, or syringomyelia either. Although I have low-lying cerebellar tonsils, I don’t have any blockage in the flow of cerebrospinal fluid, and that just because you’re tonsils are low doesn’t mean it’s a malformation. What I and the radiologists thought was a syrinx, is actually hydromyelia, a pocket of fluid that sometimes appears in childhood growth, and occasionally still makes an appearance into adulthood. It doesn’t cause any problems.

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MRI from September 2012

The explanation I got for all the pain and headaches is that I have a long, thin neck, but I still have to support the weight of a normal-sized head, causing instability. My muscles also probably have some atrophy from not being able to exercise regularly. This combination is probably causing severe tension headaches.

He showed me some isometric neck exercises to strengthen these spots. So far they’ve just aggravated the muscles, but that goes with all exercise in the beginning.

I’m going to have another MRI on my brain just to see where I’m at now. The MRI he was looking at is about a year old. I won’t feel comfortable with being misdiagnosed all this time until the specialist can comfirm it to me on a new MRI.

I’ve seen 2 radiologists, a neurologist, and a neurosurgeon, who all validated the Chiari Malformation and Syringomyelia diagnosis. The neurosurgeon was ready to do surgery. The specialist said that radiologists tend to over-diagnose to avoid the repercussions of under-diagnosing. Plus, not that many people know their ass from their elbow when it comes to chiari, all they’ve seen of it was a paragraph in some textbook from med school.

But in the end, I’m still conflicted. I’ve lived with this diagnosis for a year, and all the symptoms made sense. While I still have a doctor’s explanation for my headaches, there are a lot of things that are suddenly left unexplained now. The vertigo, hot flashes, heart palpitations, chest heaviness, headaches when I bend over, choking on water, clumsiness, dizziness, trouble with coordination and motor skills, memory and focus issues. I’ve had a lot of these symptoms for a long time, way longer than the period of diagnosis. I won’t feel sure of it until I get another MRI. It all just seems too coincidental. What are the chances of having a thing that looks like chiari, a thing that looks like a syrinx, many of the symptoms, but then not actually having it?

Don’t take it the wrong way, if I really don’t have chiari, I will be incredibly grateful. The only thing I really want is an explanation, and some pain-management. My pain and symptoms are so bad that I was ready to do surgery if it meant getting relief. But on the other side of that coin, I could’ve had surgery that I don’t need.

Still mulling.

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1 Comment

  1. Wow, THAT is frustrating. But if you went to the top, and they say it isn’t, then I would believe the specialist. I can personally attest to the terrible head pain and dizziness that I had from undeveloped striatus muscles. Physical therapy was a wonder and once the muscles got a little stronger my neck could move instead of pivot on C1.

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