The Hunt For a New Specialist

I see a new specialist in my future…. well, actually, probably two new specialists, but we’ll only discuss one with this post. Not long ago, I went to Urgent Care for pain in my neck. This happens to me fairly often and I used to just suffer through it till it got better, but now, quite frankly, I’m tired of my neck’s bullsh*t.

Nope. Not doing it anymore.

Give me the drugs…

But… anyway… what happens is I wake up with SEVERE pain, a HUGE knot in my muscles, and inability to move my head or, really, anything without almost crying. I’ve decided that I’m not dealing with the pain anymore when I can just go to Urgent Care and they can give me something to ease it.

With my last trip to the Urgent Care, they decided to do a neck xray. Apparently they find it really hard to understand “No, I didn’t have any trauma. I woke up like this. I have Loeys-Dietz Syndrome.” That was usually met with a blank stare…. So xray time. I wasn’t expecting anything to show up other than reversal of the cervical lordosis, which has been on previous xrays. But, as is the case with the Law of Medical Tests, something abnormal will show up eventually:

C-spine xray

“Mild anterolisthesis of C3 on C4 and C5 on C6” …. huh?

Well that’s new… Anterolistothesis is a type of spondyloisthesis which basically just means that my spine is now out of alignment. This sucks. This really really sucks. One of the cardinal features of Loeys-Dietz Syndrome is cervical instability that tends to lead to surgery. Now I have the beginning of it.

Don’t get me wrong. I LOVE that it’s “mild”. I am hoping it will STAY “mild”. But I think I at least need to enlist an orthopedist on my medical team.

I keep going on, living my life, trying to get through my PhD program, but silently, underneath it all, hidden and secret, the Loeys-Dietz keeps going on too.

Sometimes I really wonder which one of us will win?


More Nudes

Here’s a picture of my cervical spine (the one without the “Near Perfect” box in the upper left corner). I have cervical straightening with some kyphosis and narrowing of some of the disc spaces. Also somewhere in there are two extra ribs on my C7. I have no idea where though. I probably shouldn’t be a radiologist. In contrast to my neck is the “Near Perfect” one which shows how a cervical spine is supposed to look. I’m not jealous…honest…

I was surprised by my xrays when I finally saw the results. I was always told that with EDS our issues don’t show up most of the time on tests or xrays. Normally when we do do damage, it’s to the soft tissue and that’s only visible with CT or MRI. I hadn’t considered at that point that EDS could also cause the spine to become misaligned, not just the joints. I have also recently been diagnosed with scoliosis. My spine is a tad confused. Poor thing.