Melissa* has an extraordinary resume — by day she’s a student working towards her doctorate in nutrition and by night she’s an aerial circus performer and instructor. She has danced her whole life and has developed a love for Latin dance, the circus, and the beauty of her adopted hometown of Miami. Melissa doesn’t have much to cry about, but one time when she did she noticed only one eye teared up. She couldn’t have anticipated that this seemingly benign episode was a prelude to a more serious journey — one that would take her back home to New York and into the hands of Dr. Susan Pannullo and a team of doctors from two different campuses of NewYork-Presbyterian Hospital.
“At first I thought I had eyelash glue in my tear duct,” Melissa remembers. But a few weeks later, her left eye felt dry. After an appointment with her optometrist, Melissa found out that it wasn’t just her eye that was having problems. “The optometrist observed that I couldn’t hold air in my mouth and I couldn’t make symmetrical facial expressions.” This was not a simple tear duct problem.
A doctor diagnosed her with Bell’s Palsy, a condition in which the muscles on one side of the face become weak or paralyzed. Melissa wasn’t convinced. “I knew that wasn’t accurate because my face didn’t droop the way they usually do with Bell’s Palsy — and what’s more, symptoms for Bell’s Palsy generally happen overnight. Mine were becoming progressively worse.” She scheduled an MRI so doctors could take a look inside her head.
“The facial paralysis would be devastating enough for anyone,” Melissa remembers. “But my career is modeling, dancing, and aerial performances, so my face literally gets me hired and is used to stand out. It becomes worse than words describe when you start standing out in a bad way.” But the worst was yet to come: “The doctors sat me down and said I had a brain tumor.”
The mass in her head was diagnosed as a meningioma, then a schwannoma, a hemangioma, and an acoustic neuroma. Finally, the mass was confirmed to be a venous vascular malformation of the facial nerve — not a tumor at all, but a rare abnormal tangle of blood vessels.
Depending on the size and location of vascular malformations, they can cause various symptoms (or no symptoms at all). In Melissa’s case, the venous vascular malformation, sometimes known as a facial nerve hemangioma, was impacting her left facial nerve, in a critical place in the base of her skull, producing progressive left facial weakness and paralysis.
Melissa did her research on AVMs and says she knew this diagnosis was the right one. “I had to figure out what the next steps were. My tumor was so rare that I personally didn’t believe there was a hospital in Florida that would have the level of care I needed… so I went back home to Long Island.”
Once in New York, Melissa met with Dr. Babacar Cisse, an attending neurosurgeon at NewYork-Presbyterian Weill Cornell Medicine. Dr. Cisse remembers the moment well: “I knew that invasive surgery was out of the question. Treating a vascular malformation can be tricky — it depends on its location and the fact that it is comprised of abnormal blood vessels. If we performed a craniotomy [open surgery that requires removing a part of the skull], we could have harmed healthy tissue. Fortunately, we live in a time where stereotactic radiosurgery is a viable option — and my colleague Dr. Pannullo is one of the foremost experts in that field.”
Dr. Pannullo is one of the few neurosurgeons in the world whose neurosurgical practice focuses only on stereotactic radiosurgery. As a result, she is well-versed in the latest technology and is one of the few neurosurgeons in the country with access to all the newest stereotactic radiosurgery instruments, including the instrument she would use for Melissa’s surgery: the Gamma Knife Icon.
Dr. Pannullo is primarily associated with the Weill Cornell Medicine campus of NewYork-Presbyterian, but she performs radiosurgery at NYP’s Columbia campus as well. The Gamma Knife Icon, which she recommended for this procedure, is located at Columbia. (The Weill Cornell Medicine campus is in the process of installing this latest-generation Gamma Knife; it should be operational in 2022.)
“The Gamma Knife, contrary to its name, is not a knife,” Dr. Pannullo says. “It’s an instrument that, much like our other instruments in stereotactic radiosurgery, is designed to be non-invasive. It uses 192 targeted radiation beams to precisely intersect at a single point, with no significant radiation affecting surrounding tissue. We needed that precision in Melissa’s case.”
Melissa was impressed with Dr. Pannullo. “I loved her — she was proactive about treating me and spent so much time finding the best treatment option for my very, very, very rare case! I also loved her nurse practitioner and they were prompt to respond to any concerns I had. They were patient with me!”
She was also glad to be at one of the top-rated hospitals in the United States. “After my first appointment at NewYork-Presbyterian I had no doubt that it was the hospital I wanted to work with,” she says. Dr. Pannullo performed the radiosurgery in May 2018, and Melissa reports that “it wasn’t scary at all — it was relaxing. Every time I had the radiation I just took a nap. The only discomfort I felt was some pain through my head and ear due to post-radiation inflammation.”
Melissa is back in Miami now finishing her doctoral program, feeling happier and more confident after the treatment. “Once I got facial paralysis, I frankly did not want to live,” she recalls. “I got super depressed and was frustrated that it took so long to get answers and help. But once I had the surgery I felt like I was getting some movement back. In January of 2019 I got Botox on the right side of my face to match my eyebrow’s expression when I talk. You wouldn’t realize any difference unless someone pointed it out!”
For anyone who’s going through the same thing, Melissa’s thankful that today’s medicine has made such great strides. “Radiosurgery is a lot less scary than a craniotomy,” she says, “And I’m very grateful that progress in technology makes it an option.”
*not her real name