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?

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ER Update

I rarely go to the ER. In recent memory, I have only gone twice before. The first time I thought I was dying (Spoiler alert: I didn’t). The second time I wanted to make sure my kidneys were ok (This trip earned me my first nephrology appointment). But the point here is that I rarely rarely go. Normally I go to an Urgent Care clinic or I make a doctor appointment. I just don’t do ERs. And I especially don’t go for something like pain… I can put up with that at home right? Wrong. So very wrong!

To be fair… I attempted to go to the Urgent Care clinic first.

To be honest… I really didn’t put up a fight when they suggested the ER.

My day started off alright. I woke up with no pain. Walked over to the mirror in no pain. Then I stretched. PAIN!! All of a sudden something cracked in my neck, my muscles all went into spasm, and I could no longer move my head without excruciating pain. I also had a wave of panic that I had seriously screwed up my spine. I was terrified that one wrong move would result in something worse than pain. I get a little paranoid when it comes to my spine.

So I took a shower, hoping that the warm water would relax it. When that didn’t work, I called my mom (yes, I still call my mommy when I’m sick) telling her what happened and that I was going to go to Urgent Care. Once there, I sat in the waiting room for 2 very painful hours. When I was finally taken back, they performed an xray which showed that the vertebrae were fine. Then the lovely doctor came in, told me everything was good, that I could go home, and that I should take Tylenol for the pain. That was the point where I burst into tears. Sobbing that Tylenol did nothing and that my stomach couldn’t take any more NSAIDs (Throwing up blood? Yeah, not fun.). I think that was also the point where the doctor finally realized how much pain I was truly in. He suggested I go to the ER to get a CT scan and get it looked at better. So that’s what I did. The end result was that there was no new damage to my spine, but my muscles were being completely pissy. Thankfully they sent me home with a muscle relaxer and some vicodin.

It took about a week for the meds to relax the muscles. That was pretty much the week from h*ll.

In other news… I got a new toy!

Dammit doll 1Dammit doll 2

 

 

 

 

 

 

 

 

 

I’m sure this will come in handy in the future!

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. 

Spina Bifida Occulta

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(my lovely sacrum)

So I’m not sure if I’ve mentioned this before or not. I have spina bifida occulta (SBO) along with everything else. If I haven’t mentioned it before, it’s probably because I have no idea what that means for me. As is often my luck, when I get different medical tests, the unexpected shows up. So on a series of neck and lumbar xrays, I learned that I have spina bifida occulta of my S1 (I also have bilateral extra ribs on my C7…I told mother she birthed a freak…). I was told it’s just an inconsequential finding, but others have shared different experiences. I haven’t had an MRI of it and that annoys me a little. I like to know everything that is going on with my body. Simply being told that I have SBO isn’t enough. I want to make sure it’s not hiding anything from me, like a tethered cord. Also, having EDS as well, it’s very hard to tell what’s caused by the EDS, by the SBO, or is just a random ache/pain. If anyone out there reading this blog (all five of you at this point 😀 ) have any experience with SBO educate me please!