I am still experiencing issues related to the earlier brain surgeries. Nothing that seems all that problematic to me but things that needed to be addressed.
Incredibly we are coming up on four years since the original brain tumor was identified. That tumor was treated through two surgeries. We are not done with that one but have had more imminent issues that need to be addressed. The first of these surgeries had no noticeable side effects. The second left the left side of my face paralyzed and me without a middle ear. The removal of the middle ear meant the vestibule was gone and all things related to balanced had to be relearned. Additionally, I am completely deaf on that side. The paralysis has meant the left eye does not work as it should. Despite these new adventures life has been good, allowing for continued legacy moments.
The original plan was to treat the remainder of the tumor with radiation, as the piece that remains is wrapped around the nerve for swallowing. Before we could move forward with the radiation I was diagnosed with an unrelated cancer. This aggressive, malignant cancer took precedence over the benign brain tumor. The only frustrating part of the cancer treatment was the insurance company had the ultimate say in my treatment. They disagreed with the progressive treatment the doctor recommended and insisted I go with the tried and true variation. The newer proton radiation does not damage the surrounding tissue, the older radiation treatment does. Since the insurance company holds the purse strings, they left us with no choice. The lung and muscles in the surrounding area are starting to show the expected damage.
But on a more positive note – I have a brain MRI done every six months to monitor the meningiomas. There are a big one and several little ones. One of those little ones started to grow. I know that sounds like a bad thing; however, since we caught it so tiny, I qualified for gamma knife. Gamma knife is by far the coolest medical experience I’ve had. It is effectively, outpatient brain surgery. We left our house at 6 am and were back by 3 pm. It’s actually not surgery, in that there is no anesthesia and no cutting. It’s pinpointed radiation that zaps the tumor.
The most difficult part of the facial paralysis has been that my left eye doesn’t blink spontaneously. It’s getting better (SLOWLY) but not without incident. I’ve had several infections, several very serious. Drs Rutzen and Hanna have been amazing in their care for me. I suspect I could contact them any hour of any day and they would respond. They always go above and beyond when treating their patients. Most recently the cornea in the problematic left eye sprung a leak while we were traveling. Before we knew what was wrong, they set up a tele visit for me. The next day showed no sign of improvement. After an emergency visit with a local eye doctor and a trip to the ER, we all decided best that I get home as soon as possible and get back under their care. This included daily monitoring, while we set up for a cornea transplant. This also was outpatient surgery.
A couple of significant legacy moments – outpatient brain surgery and outpatient transplant surgery.
I’m praying for you you Bea. My Jim had the same meningioma issue as you know. His was a larger one. His first three surgeries were experimental. They caused irreversible damage. He later was given all that your going through. He lived twenty five years. He was given 2-3 when diagnosed. I pray god gifts you that time as he did my Jim. I know you’re a strong determined Woman. You’ve gotten this far because of your never give up spirit. Keep on fighting !