Journey to a New Life: Amanda Woerner

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Here I am right before the surgery, with MRI markers in place. The markers are used to create a spatial map of the tumor using a computer in the operating room. You can probably tell from this photo that I wasn't feeling great.

By Amanda Woerner

The migraines started when I was 21. I tried to tough it out, then I started going to doctors (lots of them) looking for answers, but nothing worked. My menstrual cycle was also off, and I was lactating. I felt awful. I was in college but I was missing days and days of classes. Even when I was in class I couldn’t focus, couldn’t do anything. I had those horrible symptoms for a year.

It was an endocrinologist who finally put all the clues together and ordered an MRI, which showed a pituitary tumor — a prolactinoma, which is a tumor that produces the hormone prolactin. That explained not only the headaches but also the crazy menstrual cycle and the lactation. I started on hormones to try to shrink the tumor, but the medication was horrible and I actually felt sicker. If I took it at night I couldn’t sleep, but if I took it during the day it put me to sleep. And I was having migraines that were even worse than before, headaches that bordered on blinding. After a year of feeling so awful, I took myself off the medication against medical advice.

I didn’t know what to do next — the doctor had said that if the medication didn’t work we could try radiation. I didn’t want to do that, but a family friend suggested I go see Dr. Susan Pannullo at Weill Cornell. Dr. Pannullo specializes in radiosurgery, like Gamma Knife and CyberKnife. But she took one look at the MRI and told me to see Dr. Schwartz.

My appointment with Dr. Schwartz was on a Tuesday, and the minute I walked in I knew I was in great hands. He said he knew what the problem was and he could fix it, so he wanted to get me into the operating room right away. He said I’d been suffering so long, why not take care of this now? The best part was he said he could probably remove the tumor through my nose, without having to open up my whole head. He could do the surgery Thursday.

This Thursday? I needed time to adjust to the thought of being operated on, so I went home to think about it. I was nervous, of course, but I had felt so sick for so long, and I was done with it. So the surgery was set for the following week.

Amanda WoernerThe photo at top right was taken just before my surgery, when I had MRI markers in place. The markers are used to create a spatial map of the tumor using a computer in the operating room. You can probably tell from this photo that I wasn't feeling great. A year after the surgery (above), I visited Dr. Schwartz again — but this time I was feeling fantastic.

Of course I Googled Dr. Schwartz, and the surgery, and even watched a video of the procedure. It was pretty scary — how would all that equipment fit up my nose?

My parents were even more nervous than I was. I’m the youngest child in the family, and the only girl, so my parents worry about me a lot. I think their feeling was “Oh, my baby’s going in for surgery!” By this point I was no baby, though. I was 23 and had been sick since I was 21. I wanted this fixed.

I walked myself into the operating room feeling good about everything. I knew there was a chance that the endoscopic approach wouldn’t be possible, and that while I was under anesthesia Dr. Schwartz and his ENT partner, Dr. Anand, would have to decide what to do. If they couldn’t get the tumor out through my nose they’d have to do a craniotomy, opening up my whole head. But I trusted them both and I knew I was in good hands. Luckily they were able to do the endoscopic surgery — no craniotomy!

Best of all, within days of the surgery my prolactin levels went from being in the hundreds to being in single digits. There was no more lactation, and my cycle went back to normal. Dr. Schwartz had been right — I had suffered long enough, and now I was cured.

I did have kind of a tough recovery, and I was on bed rest for a while, but I used the time to start my own foundation to raise money and awareness for those with brain tumors and epilepsy. It’s called the “If I Only Had a Brain, Foundation” and at our first event in 2012 we raised almost $20,000. I was so happy to be able to donate $5,000 of that to Dr. Schwartz for his brain research lab.

This whole thing has been a life-changing experience for me. I finished college just a year behind schedule, which was great considering how much time I’d missed. And I realized what I want my career to be — I’m planning to be a child-life specialist, which is someone who works with kids and families to make hospital experiences less frightening to them. I’m interning here at NewYork-Presbyterian in the pediatric ICU, and I’ll be starting school again soon to pursue my graduate degree. Camp Sunshine in Maine has a brain tumor week and they’ve asked me to come speak to their campers with brain tumors.

I always wanted to help people, and I’ve discovered that pediatrics, and especially terminal illness, is where my heart is. These kids — they’re away from home, being poked and prodded, and it’s scary. It’s so much better if there’s someone there to hold your hand.

This is not what I had expected to do with a Psychology degree, but this experience put me on the path to where I want to be. I feel great, not sick any more, my blood work is all good, and I have found my life’s work. What could be better than that?