Return of the Tethered Cord; Identical to Stay-Puft Marshmallow Man

I did go to the ER as I discussed in the post below, and as is typical, everyone was clueless. The two triage nurses, the nurse assigned to me, and the doctor, not a single one of them had ever heard of Chiari Malformation or Ehlers-Danlos. It is absolutely absurd that this is still occurring. I have been to this ER many times, as has a fellow patient that lives nearby. Jeez between the two of us, the whole dang hospital should know all about CM & EDS by now. The doctor checked the reflexes in my knees, then told me that because my "...spine was not sticking out of..." my back, that he was releasing me. Yep. There's some brilliant detective work for you. I bet he went to the same medical school as my first neurologist, who told me that because I was in my 20's and female, nothing could be wrong with me and that I would be fine if I just went out and did something nice for myself, like dye my hair.

The Tuesday following I had my appointment with the spine surgeon. He hasn't worked on me before but I see him from time to time because I respect his opinion. He checked my reflexes at the knees and feet, and was very concerned because I had none. Zip, zero, zilch. So he knew I was right and that something was really wrong. He had me in the MRI on Friday. The results were a bit of a surprise.

DH and I returned a few days later to discuss the MRI and I think we were expecting to hear something more along the lines of an injury, since I have fallen so many times lately. Instead, it turns out that everyting recently is revolving around my 2007 Tethered Cord surgery. Dr asked if I'd had a CSF (cerebrospinal fluid) leak after the surgery. Of course I did! I have Ehlers-Danlos, I always leak after surgeries, silly question! He showed me this pocket of CSF next to my L 2-3-4-5. It's been there this entire time. It was at least separated from the spine, so it is not doing any harm. It just kind of upset me that put up with all that pain after surgery from having a spinal headache for six months, when it obviously should have been dealt with. Instead, the team had me do an MRI every month to watch the size of the leak for six dang months. At that point, my appendix ruptured and I didn't know because I thought the pain was just the usual CSF leak pain. (By the time I went to the ER, they were shocked at both the condition I was in, and my demeanor. Not a good situation.) So what's been going on with my spine is not due to my falls, but it's actually because my spine is tethered again.

Yes, it's the return of Tethered Cord Syndrome. For those unfamiliar, the spine floats a little. That floating is what allows us to bend, to reach outward, and to stretch. If the spine was not able to float, we would stop being able to move our torso. We could not bend forward a couple inches to grab a dish on the dinner table; the remote control would stay just out of reach on the couch because we couldn't stretch over to get it. When the spine is tethered, the nerve roots and other tissue grows out from the spinal column, where it belongs, and adheres itself to other parts of the body. Then, when you try to move normally, your spine stops you because it basically is like the spine is trying to be ripped apart. It no longer is free floating. It is chained down and any stretching or reaching movement can cause tremendous pain. TCS can be progressive, often causing problems with bladder and bowel function, syringomyelia (if it isn't already present) which of course a debilitating illness in and of itself, sensory and mobility problems.

That is enough to deal with here. My next post will deal with a new problem, something I've never had before: my feel and ankles swelling up. My kids are calling them "grool," for "gross" and "cool." They're like a train wreck, that freaky looking.