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odontoid

Trust yourself! (POTS, retroflexed odontoid, ligament laxity)

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I've had POTS since I was a kid, and had mostly gotten over it by age 21. So it wasn't in the forefront of my mind when I began experiencing a pulsing, stabbing pain in points all over my body a little over a year ago. After being diagnosed with Lyme and then fibromyalgia by four different doctors, I went back to my childhood neurologist, Dr. Rowe at Hopkins. He disagreed with the fibro diagnosis, and had me get an MRI.

That MRI revealed a retroflexed odontoid that pushes my top vertebra forward, kinking my spinal cord and putting significant pressure on my brainstem (which is also hanging out of my skull for some reason). A later CT revealed that this is all due to ligament degeneration, which is now apparent in most joints (snapping/popping, loose knees, incredible back pain). 

Learn from this. If a doctor gives you a diagnosis that doesn't seem quite right, question it. I had a second opinion, a third, and a fourth, all in different specialties. They all missed it. As a result, over the past year I have started distrusting my own perception of my body. But they were wrong, and if I hadn't continued my search because it was "just fibro," I never would have found the real cause of my symptoms until it was too late. It's been a terrible year of pain, but now I understand my situation and am able to act accordingly by booking PT, neurosurgeons, and geneticists until I find the right combination.

So please, trust your gut. Know that your experiences and pain are real, and deserve to be treated as such (even if people can't see them). And if you get a catch-all diagnosis like fibromyalgia, rule out absolutely everything else before you settle.

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Chiari? That's what the herniation of the brain out of the bottom of the skull is. Have you ever been seen by a rheumatologist or geneticist for Ehlers-Danlos syndrome? A lot of what you've written here sounds familiar to me. 

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My doctor says that, while my brainstem is too far forward, he would not classify it as Chiari. Not quite sure of why, but happy to rule something out. I'm trying to schedule with a geneticist at Hopkins now, but their department is swamped and moves slowly. I'm now looking into other genetics departments that might be able to see me sooner.

Which elements sound familiar to you? I'm so sorry if you're going through the same thing, because it really sucks.

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1 minute ago, odontoid said:

My doctor says that, while my brainstem is too far forward, he would not classify it as Chiari. Not quite sure of why, but happy to rule something out. I'm trying to schedule with a geneticist at Hopkins now, but their department is swamped and moves slowly. I'm now looking into other genetics departments that might be able to see me sooner.

Which elements sound familiar to you? I'm so sorry if you're going through the same thing, because it really sucks.

How odd. But, well, it's good it's not Chiari! Did he let you know of any treatment for the herniation?

Loose knees, back pain, lax ligaments, popping/snapping sounds (this could be indicative of subluxing joints - my doctor told me that's a lot of what my joint popping/cracking is about, especially if I feel things jolt back into place), etc. the herniation is also linked with things like EDS (I'm not a doctor though! But Chiari is common in EDS). Early onset POTS is also common in EDSers because of different etiologies (we don't have POTS because of viral infections or things like that).

 

I dunno, I could be wrong, but yeah, a lot sounded familiar to me. 

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A lot of that hits close to home. Have you been able to do anything to address your symptoms that has really made a difference? And did you have surgery for the Chiari?

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No, I'm actually still trying to get a diagnosis for my suspected POTS, it's just proving a bit difficult due to it being underdiagnosed and misunderstood. My only current issue that has been diagnosed is Hypermobile Ehlers-Danlos Syndrome (and a slew of MH issues). I just read a lot and know quite a bit about potential issues found in EDS patients and also have a friend with Chiari (and the trifecta that is EDS, POTS and MCAS). I do plan on getting checked for Chiari soon though as I'm having a lot of symptoms that could be indicative of it, and after a phone consultation with a world reknowned EDS specialist based in the UK he says it would be worth getting a standing MRI done to rule out (or in) Chiari as a potential cause of some of my troubles - he is based in the private sector, so will be a while til I can see him and his team due to being unemployed because of being disabled by my health issues.  

 

Have you been recommended anything?

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