As the holiday season was going into full swing and most people were worried about what presents they were going to get for their boyfriends or parents, I was busy worrying about my upcoming neurosurgery. Being sick and needing surgery was nothing new for me, but I had never had my brain operated on before.
At the age of ten, I’d been diagnosed with a chronic, degenerative form of gastroparesis, and as I got older it became evident that there was something further wrong with me as well, but no one knew exactly what. We certainly never had the idea that I had a brain tumor and would need neurosurgery to have it removed.
I spent my entire childhood, from 2001 to 2010 going in and out of hospitals for heart issues, blood pressure issues, hypovolemic shock, electrolyte issues, passing out, and complications from gastroparesis. When my blood pressure issues flipped from being constantly too low to being constantly too high, I was referred to a kidney doctor, Dr. Green. She was a petite, 60-year-old woman with short dark brown hair cut in a bob cut. Dr. Green tirelessly ran test after test until discovering through a 24-hour urine cortisol test that I had the highest levels of urine cortisol that she had ever seen or even heard of in her entire career. After further testing, I was diagnosed with a Cushing disease brain tumor. The only real viable treatment option was neurosurgery to remove the tumor and possibly part of the pituitary gland depending on what things looked like when they got in there.
Life before neurosurgery continued racing by in a blur of doctor’s appointments, testing, and procedures. In between all of this mayhem, my mom was making phone calls to my extended family to alert them of this crazy new challenge in my journey through life and illness.
I had two best friends. Their names were Corrie and Sarah. They had been through everything with me over the last 11 years. We met when I moved to Massachusetts when I was ten, almost eleven.
After being diagnosed with the brain tumor and being told I would need major neurosurgery, they would come over quite often to listen to me vent, cry, joke, and laugh. As I had a million other reactions to the fact that now, not only did I have a severe case of gastroparesis, fluid and electrolyte disturbances, anemia, hypothyroidism, atrial fibrillation, SVT, orthostatic hypotension, postural orthostatic tachycardia syndrome (POTS), GERD (acid reflux), vertigo, and hypokalemia, now I had a brain tumor too.
“Only you Becca,” Sarah joked. “Only you could pull off getting a brain tumor on top of everything else.”
“Hey. do you think they’ll let you keep the tumor once they take it out?” Corrie asked me.
“After all the trouble that that this thing’s caused me, I’m not letting it get anywhere near 100 yards of me once they get it out! I’m getting a no-trespass warrant.” I kidded.
Sometimes friends are the best medicine of all.
Dr. Tritos was a small middle-aged man with dark black hair, a thick Greek accent, and a very light and gentle handshake. He had a model of a brain with the pituitary gland set up on his desk, and my scans pulled up on his computer
“Hi Rebecca, so nice to meet you.” He said.
“Hi,” I said back.
“So you have a small tumor on your pituitary gland.” He pointed to the scans on his computer, but I had no idea what I was seeing, so I just nodded.
“The tumor may be small, but judging from your other labs and your clinical presentation and symptoms, I can tell that it’s doing a lot of damage.”
“Yeah.” I agreed, “that’s for sure.”
“What’s happening is that the particular type of tumor you have is causing your pituitary gland to produce too much ACTH, the ACTH is then causing your adrenal glands to produce too much of the hormone cortisol. Cortisol is a stress hormone. Normally it is released as part of the fight or flight reaction. The job of cortisol is to allow you to react to severe emergencies. Your body is producing cortisol for no good reason and it’s making you sick. Your body is pretty much in one long continuous fight-or-flight state that never ends.
The symptoms that you have been experiencing, the weight gain, high blood pressure, rapid heart rate, anxiety, pink skin striations, easy bruising, high blood sugars, severe headaches, muscle weakness, exhaustion, all of those symptoms have been caused by the excessively high levels of cortisol.”
“So what do we do?”
“Well, we have confirmed that the tumor is on your pituitary gland not on your adrenals, but because of how small the tumor is and how precise we have to be, we need to do one more test.
“What’s that test?” I asked.
“It’s called the inferior petrosal sinus sampling test.”
“Okay, What is it?”
“We do it here at Mass General in the interventional radiology rooms. You will get conscious sedation for it. Just like you get for an NJ tube change. We’ll give you some medicine to keep you sleepy and comfortable, but you’ll still be awake.”
“Will it hurt?” I asked.
“It might be uncomfortable,” he admitted. Uncomfortable is code-speak in medical terminology for, ‘yes it will hurt like hell”.
Dr. Titros explained the procedure further, but I was still not ready for it when my mom drove me the hour and forty-five-minute drive back up to Mass General the following week. Note to self, don’t watch the graphic youtube videos of an invasive procedure a few days before you’re going to have it done.
When we arrived at the main desk my mom got me a wheelchair and they prison tagged me with a hospital ID bracelet. Even just breathing in the air in the waiting room for interventional radiology made me feel like I was inhaling sharp, pain-filled, antiseptic.
We only waited in the waiting room for about 15 minutes before the nurse wheeled me back to a cubicle.
Why does it always seem like when you want time to slow down it speeds up, and when you’re in a hurry it drags?
The nurse had me take off all of my clothes and jewelry. Then I got stabbed 3 times by the first nurse, and twice by a second nurse so that they could secure an IV. Once that was done they wheeled me back out to the waiting room for another hour so that they could let my tension and nerves build up so bad I felt like any wrong move and I would snap.
Finally, they brought me into the room and had me lay on the stretcher under the X-ray machine. I was so nervous my whole body was actually shaking and my teeth were even chattering. All I knew was that they were somehow going to draw blood out of my brain in this procedure and that they were going to thread a femoral artery central line into my groin. This was a whole new ballpark for me. I’d gone up to bat with feeding tubes, IVs, and even catheters, but I’d never played fastball with fluid from my brain and central lines before.
First, they scrubbed me down with their cleanser, then the anesthesiologist injected my IV line with some Fentanyl and Versed for sedation. I was so anxious that I don’t think it had much effect on me at all. Then they gave me several injections of Lidocaine in my groin. It burned like getting stung by a bee multiple times.
When they made the small incision in my groin, I didn’t really feel it. What I did feel was a lot of the weirdest pressure, squeezy sensation as the femoral catheter made its way through my vessels to my brain’s petrosal sinuses. The petrosal sinuses are the sinuses below the brain that drain out the blood from the pituitary gland. They drew blood through the femoral line from both petrosal sinuses and then drew blood from the IV in my arm and checked my blood from both sources. After that, they shot some cortisol stuff into the IV in my arm.
They drew my blood from both my arm and my brain two minutes later then five minutes later, and then another ten minutes later. Once they finished injecting me and drawing blood they took x-rays to make sure the lines had been in the right places the whole time and then they took everything out and sent me to the recovery room to sleep off the anesthesia that had done nothing to help me stay comfortable.
In the recovery room, I felt relieved that the invasive test was over but wary of all the invasive tests, procedures, and surgeries that I knew I had in my future.
“We have 100% confirmation that the tumor is on your pituitary gland and not your adrenals or anywhere else. Now that we know exactly where it is, we can contact Dr. Swearington the neurosurgeon to start mapping out an exact plan of action for your neurosurgery to get you feeling better.” The interventional radiologist informed me in the recovery room as a nurse applied an ice pack to my groin.
It was official, we were about to start setting up our game plan.