Wednesday’s trip back to the spine specialist was much better than last time. We took the car this time, and it was a little better in ways but not as much as I’d expected. The roads are just crap between here and there, so I could still feel every little thing, but I only spent a few minutes crying instead of the majority of the trip. We didn’t get navigated to the wrong address, too, which was a significant improvement πŸ˜›

The MRIs were a bit painful. Holding still starts to hurt quite quickly for me – muscles cramp up and spasm after about thirty seconds, and each set of scans is several minutes long. That’s the second and last time I cried that day (I think – I may have teared up at home later that night from pain, but I can’t remember. This week’s baseline pain score has been around 5/10 with frequent 9-10s). Anyway, here’s the rundown:

“Slightly low-lying cerebellar tonsils appear similar to previous”

He said he didn’t see a Chiari but did see “brain slump”. I see a Chiari. What I see is very small, so maybe I’m drawing the wrong line to use as a judge, but he didn’t want to call it Chiari. Regardless, things look better than I expected. There’s a bit more going on in my cervical spine.

“Minimal grade 1 anterolisthesis of C4 and C5 in the neutralposition. This may minimally increase at C5-6 on flexion versus differences in positioning. Remaining cervical levels remain grossly stable on flexion/extension… C4-5: No significant central canal or foraminal narrowing. Previously seen small central protrusion with annular tear is not identified currently… C5-6: Small broad-based disc bulge with right paracentral/lateral protrusion resulting in mild effacement of the ventral thecal sac without significant mass effect on the cord… C6-7: Tiny left paracentral protrusion resulting in minimal effacement of the ventral thecal sac without mass effect on the cord… T2-3: Small left paracentral protrusion with annular tear results in mild effacement of the ventral thecal sac without significant mass effect on the cord as seen on sagittal images.”

Translation: my 4th and 5th cervical vertebrae are out of place, and I have several discs protruding and putting pressure on at least the sac around my spinal cord, if not the cord itself. These protrustions can interfere with the flow of cerebrospinal fluid throughout the central nervous system. (More on that later…) In one of these reports was the official Degenerative Disc Disease … discovery, I guess – I’d say diagnosis, but it wasn’t actually in the printout I got when leaving. Wouldn’t be the first time something was seen but not diagnosed or even told to me: those annular tears (slight tears in the membrane around intervertebral discs) mentioned here were never mentioned to me by anyone, not even this new guy, even though they were apparently there before. Clearly, they must not be of much concern. (Which bugs the fuck outta me!! I deserve to know EVERYTHING happening with my body! And since when is a damaged disc not worth mentioning?!)

My thoracic syrinx seems unchanged. My disc didn’t have the radiologist’s report in it, but the spine guy says there’s no significant change, and as best I can tell, I’d say I agree. If you’re new to reading these, the easiest way I can tell you is to look for the “white bubble” inside the spinal cord; the cord in the first two images is to the immediate right of the vertebrae (the “stack of boxes”), and in the third image it’s the bubble below the “leaf/tongue” looking thing (vertebra looking down from above instead of from the side). See the “bulbous worm” in the first two and the bright white circle inside the darker circle on image #3? That’s the syrinx – the bulk of it, anyway. It basically runs the entire length of my thoracic spine, but it’s much thinner on both ends. In the middle, it’s up to 8mm wide, choking my spinal cord.

The lumbar scan was basically unremarkable, though there is some desiccation (drying out) of one intervertebral disc.

Overall, this is relatively good news: there’s no significant Chiari malformation, and the syrinx hasn’t grown. It doesn’t provide a good enough explanation for all my symptoms, though, which means it could very well be that I have a leak of cerebrospinal fluid somewhere. At least that wouldn’t be as intensive of a surgery as vertebral fusion or cranial decompression. He’s sending me to a few other specialists for their insight, but he was quite adamant about avoiding surgery since, he says, it’d severely impact my quality of life and is just too risky for someone like me.

I’ll be making that trip again on March 20th to see a Harvard-educated spine specialist and another orthopedic surgeon about my right hip, left knee, and left ankle. This coming Tuesday, I’m supposed to call for scheduling with a neurosurgeon to get his input. ALL THREE of these doctors have stellar reviews online, including comments about how great their communication is and how much respect they have for their patients.

While I’m disappointed and struggling to accept that surgery to correct some of these things isn’t a good option for me, I am pleased overall. 1) Everyone was caring, compassionate, attentive, etc., as opposed to most of the arrogant, authoritarian assholes and dismissive, ignorant, basic bitches I’ve met in healthcare; 2) they didn’t find the monsters I thought were hiding in there; and 3) Hubby and I both did better at managing our anxieties this trip.

In other news:

On March 10th, I go back to my ENT to talk about setting up a swallow study since I’m aspirating more and just generally losing communication with my throat, it seems. I’ve been having what I believe to be esophageal spasms, too. I’m also wondering if he can recommend a good GI doctor with EDS experience, though I’m expecting him to have no suggestions to offer. I need to get this abdominal stuff addressed, especially now that I know I’ll not be dealing with a decompression or fusion surgery. I can’t decide if I should just approach it through my gyno, though, as an endometriosis and abdominal adhesion scenario that includes laproscopic views inside my gut as opposed to more limited colonoscopic views. I haven’t stopped bleeding since December 2nd for more than about a day at a time: I’ve been panty-spot-free a grand total of about five days over the last three months. Fuck you, Depo Provera. Fuck yourself to oblivion. Or, maybe it’s a fistula with coincidental timing. I dunno. Sure hurt enough at one point for a fistula formation to make sense. I’m sure 2017 will bring me those answers.

For now, I’m fighting a flareup of all the bad things. Most of my time is spent horizontal because I deteriorate so fast being upright (red flag for a CSF leak, I’ve heard). I was going to host our local EDS support group (grand total of 5 if everyone shows) at home this weekend and had to cancel because I just don’t have the spoons for socializing, let alone getting the house clean enough for visitors.

Thank you to everyone who shared some kind or supportive words with me or who devoted some positive energy to my situation. Your compassion and solidarity are very much appreciated.