You may or may not have noticed, but I haven’t been active on the blogosphere for nearly a year. It’s been an eventful year, to say the least, but the best part is yet to come. I continue to battle with Cushing’s Disease, and in fact, my symptoms have worsened during my inactive time.
On April 16, 2013, I had another brain surgery, bringing my total to 4 at this point. This one was a bit different from the previous 3, as it was “bloodless brain surgery” and was performed by an amazing man named Dr. Foote. The technical term of said surgery is “stereotactic radiosurgery” and in a nutshell it’s an incredibly high dose of radiation, delivered in just one dose. I was given the highest dose that is suitable for the human brain, and it did nothing to help my situation.
So what the heck is that thing? It’s called a halo and it’s made of titanium. The placement of the halo was by far the worst part of the procedure, as they literally screwed it into my skull in 4 places and I was awake the whole time. I was given 1 valium, but with my size it didn’t do a thing to help me. I was given 4 incredibly painful shots of a local anesthetic, then a team of doctor men (it took 4) worked quickly to secure the thing onto my head. The pain didn’t last long, but the whole headpiece was just a bit cumbersome. After it was in place, I went back to the staging area/waiting room and got to eat breakfast. It was rather entertaining, as I couldn’t exactly get food into my mouth without hitting that lovely titanium ring around the middle of my head. No biggie. The staff took pictures of all of us who were having the procedure done that day, and printed them out for our scrapbooks. It was odd, to say the least…
The actual surgical procedure didn’t take too too long, and I equated it to having a giant Xray. I laid on a bed and my head was secured to the table and the rest of my body was strapped down. The radiation machine (Linear Accelorator) rotated around me 5 times or so and delivered a ridiculously high dose of radiation to my pituitary. I only heard noises of the machine and didn’t feel a thing. Painless and bloodless. #winningcombo
So fast forward to many months later and I recently returned from a 2 day trip to Shands in Gainesville. I was able to knock out 4 follow-up appointments with my team down there, and everyone had the same thoughts: I looked worse in October than I did in April 😦 I started the trip off with a 2 hour wait to get my MRI. Needless to say, waiting is really fun:
I finally got called back for my MRI, and it was uneventful, as usual. However, I did elect to listen to Gainesville’s premier pop station, so I got to listen to Miley Cyrus, Lady Gaga et al as my brain was being imaged. The picture below is the MRI tunnel thing that has become a major part of my life over the last few years. This thing and I get along real well:
To make a long story short, my doctors all agreed that my Cushing’s is a fierce little monster and they’ve done all that they can do in treating it at Shands. I have had 4 brain surgeries and I’ve tried a medication, but have not showed any improvement. My neurosurgeons believe that the residual tumor cells have jumped into my cavernous sinus, which is home to cranial nerves 3,4,5 and 6, as well as the carotid artery, and that is “a dicey place to be mucking around.” Dr. Foote was “significantly bothered by the trend in the wrong direction” and cursed my tiny tumor cells and their stupid genetic code. The appointment with him was very thorough, and he’s one of the best doctors a patient could ever have. And he’s not so bad to look at:
He reviewed my morning MRI with us in the room, and it was really interesting to see inside my brain like that! You could even see my double chin on a few of the cuts: (cute, I know)
Endocrinology and neurosurgery were my Tuesday appointments, and they agreed with Dr. Foote’s observations and recommendations. So, I have been referred to Emory in Atlanta to their Neuroendocrine Pituitary Center and will go forth and prosper in Georgia. I have to have my adrenal glands removed in a procedure that is called a Bilateral Adrenalectomy (BLA). We’ve exhausted all resources through 4 brain surgeries and medication that I didn’t respond to. The BLA will actually cure me of Cushing’s, as I will totally stop producing cortisol. In turn, I will trade it for something called Addison’s Disease, which is not the most ideal disease, but it’s manageable through medications. I don’t know too too much about it at this point, but I will have it for the rest of my life, so I’m sure I’ll know everything in the coming days/months/years/lifetime. I’m nervous as all get out about having this major, life-changing operation, but at the same time, it will allow me to get my life back (and to not look like a bloated manatee anymore, yay!) and move on, something that I have been looking forward to for years at this point.
So that’s where I stand right now and am waiting to hear back from Emory regarding an appointment time. The sooner the better is what my referring endocrinologist said, as I’m not going to get any healthier in the coming weeks or months. My goal is to knock this surgery out before Thanksgiving and use the holidays as a time to rest and recover. Send some positive energy my way and I’ll get through this Gland Finale with no complications 🙂
I am extremely lucky and grateful to have such a wonderful group of friends/family/doctors on my team and by my side every step of the way. As always, thanks for your continued love and support and I’ll keep y’all updated more regularly than I have in the past, as I’ll have a lot of downtime after my BLA.
Kicking Cushing’s to the Curb (will need to change that soon!),