I think the Calvin and Hobbes cartoon is particularly fitting given the type of surgery I had and the risk for a CSF (“brain lubricant”) leak! 😂
This is probably going to be very befuddled because I only slept for two hours this morning before having to get up and go to my follow-up appointment with my neurosurgeon. But I have a can of Diet Pepsi and a 5-Hour Energy on board, although I still feel like I’m about to pass out. Such is life when I’m used to sleeping 12-16 hours a day.
Anyhoo. As per usual, I got called back to the exam room quickly, but the rest of the appointment took forever. After the nurse took my vitals I had to wait almost half an hour for the nurse practitioner to come in. When I told her how tired I’ve been, she asked when my endocrinology appointment is and basically yelled at me when I said November 1st because it was the first available. She said it should have been sooner because I’m post-op. What part of “first available” don’t you understand, lady? She said, “Well, that’s the first thing he’s going to tell you when he comes in is that the appointment needs to be sooner.” Luckily she was in and out quickly because I wanted to smack her.
Another eternity went by. Then finally Dr. Recinos came in. (And no, the first thing he said had nothing to do with my endocrinology appointment. So there.) We reviewed my MRI images that he gave me in the hospital because I couldn’t remember which one was which (easy to do when you don’t really know what you’re looking at. I could tell it was a brain, that’s it.)
I passed yet another neuro exam. (I could conduct one of those by myself at this point!) He officially cleared me of all restrictions. Then we went through the final pathology report. Mini was definitely an adenoma and demonstrated prolactin-secreting cells. This next part is a little confusing. He said my tumor reflected a high amount of a marker called Ki-67. Since I don’t really know how to best paraphrase this, here is what Wikipedia has to say: “Ki-67 is an excellent marker to determine the growth fraction of a given cell population. The fraction of Ki-67-positive tumor cells (the Ki-67 labeling index) is often correlated with the clinical course of cancer. The best-studied examples in this context are carcinomas of the prostate, brain and the breast and nephroblastoma. For these types of tumors, the prognostic value for survival and tumor recurrence have repeatedly been proven in uni- and multivariate analysis.” He said it’s kind of uncertain what exactly this means for my type of benign tumor, but because of this, I will have more frequent MRIs for awhile (a few years?) so in case it does start to grow back, it can be caught early. So I’ll be having MRIs every six months until he’s satisfied that the tumor is not coming back. He said he expects the risk of recurrence to be very low, given that they not only took out the entire tumor, but part of my pituitary gland with it (huh…that could explain some things…) But just in case there were a few microscopic cells he couldn’t see, he wants to be cautious for now. I mean, I’ve already had six MRIs in my life, what’s a few more?
Then we finally discussed the symptoms I’m still having, particularly the fatigue. He said it’s somewhat to be expected, but that he would call over to my endocrinologist’s office to see if they can get my appointment moved up. I said if she can at least order the labs they want, that’s fine. He also said they would get in touch with the neurovascular surgeon I’ll be seeing about my aneurysm and if I haven’t heard from them by next week to call.
I asked him about my headaches, too, though I wasn’t very pleased with his response. He said, “In some patients with headaches they get worse, in some patients they stay the same, and in a few patients, they get better.” Awesome. So it seems unless I’m really lucky (and I’m never lucky), I may have this headache for the rest of my life. He said if my labs end up being normal to go see my neurologist. Not sure what he’s going to do because he wasn’t very helpful when this whole fiasco started in February, but whatever.
So things are kind of still in limbo. Although I did just get a message from my endocrinologist to get the labs drawn whenever; TSH, free T4, ILGF-1, and ACTH stim test. I think I’ll go tomorrow because I really don’t enjoy spending 16 hours of my day sleeping. My “get up and go” definitely got up and went, and I want it back!