My CranioCervical Instability and EDS story

[grace]

I want to share my ten years experience, to let folks learn the lesson and avoid some things i did before I realized I had EDS.

In 2006, After I had high fever and extreme headache for 3 days , i went to ER. As this is the 1st time the fever could not be lowered down in such long period, so I felt scared. Based on my symptons, the Dr. gave me lumbar puncture . The next day after that, I had severe headache and I laid down in bed for 5 days to let the headache gone. Since then, I found my head is heavy and there are two small parts in my Occipital area which always have the feeling of hanging there. I feel I am in a boat especially when I stoop up. As I never had this feeling before, so I went to a Neurologist and he sent me to a brain MRI which proves everything is ok. Early 2007 , I also had my neck MRI which returned a normal one.

I kept on having this shaking / loose feeling of my head to work and live , but I know that I feel more fragile from my heart. And I straighten my neck as an instinct , trying to stabilize my head. Suddenly, in spring 2008, I had big pressure in my head and my eyes felt extremely pressure from inside and have the feeling of pop out. For three months, I had no way to read anything, it is so itchy. In 2009, someone referred a Chiropractic doctor for me. He did some manipulation for me in my head and neck and made an X-rays of my head. He remarked “Seems you have problem to hold your brain, and your skull already malformed in order to hold the brain.” His manipulation made me even worse. So he prescribed me another neck MRI, this time, a previously normal neck already has mild straightening and a disc bulging in C5-6.

I kept on have symptons and the pressure feeling is most annoyed. And no doctor can give any explanations. In June this year, I had a ceramic marcel for my hair, it is kind of perm. Three days after that, my neck, the first time in 10 years, had no way to hold up my head, no matter how hard i tried. So this time, I encountered a neuro. surgeon, this is the first time, I heard of CraniaCervical Instability and EDS. I went to a genetics, he examined me thoroughly, I had 4 out of 9. He said I cannot be clearly diagnosed as EDS based on his examination, however, I really had cranio cervical instability. Now, I am in the waiting list of a neuro. surgeon, who is expertise in this to give me a clear diagnosis

From my experiences, you can see that how weak the tissue of EDS’s patients are. But unfortunately, we had no idea of our status, otherwise, I will never had lumbar puncture and never had ceramic marcel .

But even today, I still have biggest question is why the tissue in my head is the weakest in my body. I had lagiments of one leg injured when I delivered my son 15 years ago, it just took a month to get it healed by itself. I NEVER imagine the ligaments in one’s head is sooooo weak and never had chance to heal by itself.

[Dr. Diana]

Thank you for sharing your story, Grace. It is one that many of us live through — including my kids and I! One critical point for many of us (and the main reason I released The Driscoll Theory) is that high intracranial pressure (usually without papilledema) can mimic craniocervical instability, yet can often be reversed with medication to control the pressure. My son and I were told to have neck fusions (and brain shunts, and to consider Chiari surgery), but all we needed was an inexpensive medication (Diamox) and the debilitating symptoms were gone the next day! Like many others, this high intracranial pressure can be temporary, and permanent surgeries were not only unnecessary, but they could have caused us many problems down the road. I don’t know if this is an option for you, and there are some “tricks” to it (like monitoring CO2 levels to keep it working), but it is worth working hard to get this right. The upside for many of us is life-changing when we get to the bottom of this correctly. This journey with EDS can be a tough one — hang in, my friend. You’re doing great! 😉

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