Updated: Mar 15, 2019
About four years after the first brain surgery, I begun to have odd visual changes again. I went to my neuro surgery clinic and saw one of the resident doctors. He said everything was fine, my MRI scans were the same, but I just knew it in my gut that something was wrong.
He referred me to a neuro ophthalmologist to check my eyes. I brought my latest MRI scans as requested. He took one look and said there's your tumor. I just sat there by myself in tears. I couldn't believe it. How did the neuro surgeons miss it? Everyone had been telling me I was fine, it was all in my head. But that stupid little tumor (well actually macro tumor) that shocked my life grew back. This time the tumor was wrapped around the pituitary gland and a carotid artery. I was scared shitless. What if, during surgery, they nicked the carotid? That could be deadly. My world stopped again. I just couldn't believe my neuro clinic said everything was fine, but clearly it was not.
We made an appointment with the head of neurosurgery, the doctor that performed the first surgery. My (now ex) husband, my mom and I waited eight hours to see him. And he confirmed what I already knew, another surgery. This time instead of breaking my nose and exposing the sella (place where pituitary gland sits), they were going in laparoscopically. I thought it was gonna be awesome (as in easier than the last surgery and less pain). No broken, bloody nose, I'd be able to smell and therefore taste right away. Last time it took days before I could tell the difference from the green, red, and orange Jell-o! ;) But, some minor complication happened during surgery. A small air bubble was introduced into the spinal fluid, and I woke up in the worst pain imaginable. Opiates only took the edge off. The excruciating pain lasted for weeks. And they weren't able to resect much tumor this time, so gamma knife radiation was the next step. But, no hormonal complications, and thankfully no seizure. Gamma knife is intense radiation directed at specific spots in the brain. I had to wait a few months for the swelling to go down from the surgery until the docs said I was ready for radiation.
For the procedure, I was lucky to get a bit of oral sedation, then they injected lidocaine into four spots around my head, then screwed my the brace into the same four spots. It wasn't exactly painful, but there was so much pressure and the brace was incredibly heavy. The brace is used so my head wouldn't move during the procedure. The tumor was still millimeters away from my optic chasim (the biggest ocular nerve), so it took them hours to formulate a very specific plan for me.
I was the second patient in the clinic and the last out. That brace was so uncomfortable and there was no good way to rest with it. So because I was in the brace so long, and had had probably 20mls of lidocaine pumped into my head, the day after the radiation my face swelled up like a chipmunk, my eyes were just slits - I could barely see! It was hilarious and painful at the same time! Of course my ex and family wanted to take pictures for some tumor humor, but I wouldn't let them! I am happy to report that despite the tumor still being in my brain, it has not grown a single millimeter since 2005! Yet there was still a long road ahead dealing with a non functioning pituitary gland and therefore all of the hormone issues. All of these surgeries have changed me in the most profound way. I became more empathetic and grateful, more spiritual, so thankful that my brain, body, and eyesight were saved again. I became a better nurse to my patients. I understood what it's like to go through the the trauma of major surgery. I understood that parents are scared for their child. I learned from my family that in some ways surgery is easier for the patient, you just take the good meds, and go to sleep. The families have to wait and worry.
*That is not me in the gamma knife picture, but it is exactly what it looks like.