2024_06_16 Two Days Before the Appointment

I’ll see an example case that looks like my scan and think, it’s so obvious, and then I’ll remember an article I read about new pseudolesions popping up as a result of MRI’s ever-improving accuracy… you can see the most minute details, and until they’re identified, they’re going to be sus. So neuroradiologists have to know not only this vast spectrum of normal variations and mimics specific to each sequence type, they also have to know enough neuroanatomy to say, “hey, this is in the area of X structure; does it look this way on all the T9999999 scans?” And here I am trying to read my imaging, with no context and a fractured mind.

My eyes flit here and there, rediscovering things I correctly dismissed years ago, the memory returning once the same conclusion is reached. My executive functioning is at an all time low; it is frustrating, exhausting, and it derails me. But there are a handful of areas that I have returned to again and again over the years, unable to reconcile their level of asymmetry or find similar examples in normal imaging. I try to let those guide me.

 

Take for instance, the region surrounding the left Meckel’s cave.

At first it was just the asymmetrical pneumatization of the petrous apex, the way the contents in the left nudged upwards into the cave. A slight bone asymmetry on the CT. On their own, neither of these would signify, but eventually I worked out the vocabulary to describe more of what I saw in and around them, until I believed I’d identified asymmetrical enlargement and enhancement of the third branch of the Trigeminal nerve. 

I’d followed up further on the Trigeminal nerve then, noted that it would explain the stinging sensation of the skin along the bony ridge below and around my eyes. Also the jaw pain and weakness that hit me intermittently. I read that an asymmetrically enlarged and enhancing Trigeminal V3 would primarily suggest one of three things: Sjogren’s, Gradenigo, or Perineural Tumor Spread. [https://doi.org/10.1007/s11547-023-01734-2 Extra‑axial cranial nerve enhancement: a pattern‑based approach] My tentative diagnosis from my time at Mayo Clinic was Sjogren’s suspect; I thought perhaps this bit of information could help me with a definitive diagnosis. I also wanted to do my due diligence and rule out PNTS.

My neurologist was not ready to hear my thoughts on the matter: “You are not more qualified to read imaging than a board certified radiologist.” (afterwards I would search myself for how I might have prompted or avoided that reaction– I am keenly aware: it is critical that a chronic patient must have delicate handling skills when open communication fails). He ordered another MRI, internal auditory canal protocol. Again it was reported Normal. 

I second-guessed myself enough to feel depressed, but I couldn’t let the matter rest and I arranged for one, then another MRI review. The first was through correspondence, brief, and not especially helpful. I did not mention the Trigeminal nerve, my mercurial focus having shifted to anything suggesting Neurocysticercosis, and neither did the report.

The second review will take place in two days over telemed.

Ahead of that, I’ve refocused on the pterygopalatine fossa, cavernous sinus, Meckel’s cave, and trigeminal nerve; and on the calcifications along the right mandible that I’d presumed were a recurrence of childhood salivary stones (and probably are). I’m also looking at the palate more closely now. And the result of that digging is that I have another wild, silly suspicion, so I’m glad I’ve arrived at it so close to my appointment.

It ties in with the slow progression of my symptoms, which I’ve found reassuring, and with the reason for my hysterectomy and current investigations into abdominal pain. Tomorrow, I have an ultrasound and meet with my gynecologist. I think the chance of these things being related is distant; but I feel rather badly in my body and thoughts stray.

I’m doing my best to distract myself when it gets heavy or cloudy, and write during intervals of clarity. I do want this account to exist though, and I want to state it publicly, before I'm diagnosed (if I ever am). I am tired of this fear of being wrong; what does it serve?