NewYork-Presbyterian gave me hope and results. Everyone genuinely wanted to see me get well, I felt like they went above and beyond to treat the whole person.
Michelle Ellerbe was at the end of her rope when she decided to make an appointment with Dr. Philip Stieg, neurosurgeon-in-chief of NewYork-Presbyterian/Weill Cornell Medical Center. The married mother of two daughters had spent the past decade suffering from intense facial pain. Despite undergoing several surgeries and procedures, and taking an excessive amount of painkillers daily, she could not find relief.
“I was broken. Everyone started saying they can’t help me, and kept giving me more medication”, Michelle says. “I was taking 22 pills a day to show up at work. I had to wear a scarf every day, even in the summer, because wind on my face was too painful. I thought I was going to die from an overdose. All of the fight in me was gone. The day I walked into NewYork-Presbyterian, I said, if they can’t help me I’m done.”
The pain started just days after giving birth to her second child in 2008. Michelle, the assistant director of nursing at a New York City hospital, developed severe pains on the right side of her face that lasted for days and was so intense she had to go to her local emergency department.
“I remember the day the pain started so clearly, it was a Wednesday. I was just sitting on the sofa when I felt a sharp pain radiate from my right ear to my right nostril. It came for two seconds and left. I thought, ‘that’s odd,’” Michelle recalls. “The whole day the pains got worse. By Friday, the pain was worse. I went to the emergency department on Monday. They told me I had Bell’s palsy, gave me steroids and sent me home.”
Bell’s palsy is a form of temporary facial paralysis due to damaged facial nerves. Although Michelle questioned the diagnosis, she knew it was not uncommon for some women to develop Bell’s palsy after childbirth. However, when Michelle went back to the emergency department a week later, she was given a battery of tests — an MRI, CT scan, blood work, and a slew of other pricey medical tests — that found nothing.
Over the next two years, Michelle bounced from doctor to doctor undergoing several procedures with no success. At the advice of an oral surgeon, she even had all the teeth on the right side of her mouth removed to no avail. Finally, a doctor suggested she might have trigeminal neuralgia — a chronic pain condition. The trigeminal nerve is responsible for sensation in the face and motor function like chewing or sneezing. If pressure is put on the nerve it malfunctions, causing excruciating pain.
Michelle’s neurologist referred her to a neurosurgeon. Having worked with this neurosurgeon in the past, Michelle was confident she would receive proper care. So when the neurosurgeon recommended Michelle undergo a craniotomy — a surgical procedure in which part of the bone from the skull is removed to access the brain, she went ahead with the surgery.
Before the surgery, Michelle had another CT scan to determine where the nerve was compressed. “The CT scan showed nothing,” she remembers. Despite not finding the location of the compressed nerve, the neurosurgeon recommended Michelle go ahead with the craniotomy. “The neurosurgeon said, ‘sometimes you can’t pick up the compressed vessel on the CT scan. The craniotomy is the best way to treat it.”
Ten days after the surgery, Michelle was back in the hospital to have another procedure — a glycerol nerve block, a pain relieving injection — because the craniotomy did nothing to quell the pain.
As Michelle’s facial pain persisted, she continued to seek medical care from several healthcare organizations and hospitals throughout Manhattan, each one trying different methods to treat trigeminal neuralgia.
“I was prescribed [antiseizure medication] that worked for a while, but like everything else, they stopped working. I had a Gamma Knife® procedure to the trigeminal nerve and had a few nerve blocks that also worked for some time,” she says. “I was put on an extra strength ibuprofen, oxycodone, morphine, methadone, and Dilaudid.”
Then in July 2017, Michelle felt an “uncontrollable face pain”. She was given a nerve block that intensified the pain. So she decided to get a second opinion from another Manhattan hospital. The doctor saw something on her old CT scan but requested new scans to get an updated view. After reviewing the updated scan, the doctor told her she wasn’t a surgical candidate and referred her to a colleague who told Michelle the only treatment option is pain management.
Michelle says she was about to give up when her mother, who works at NewYork-Presbyterian/Weill Cornell Medical Center, recommended finding a neurosurgeon at the hospital. Michelle checked out nyp.org, where she saw the story of Nancy Jarecki, a woman who was successfully treated for a ruptured brain aneurysm by Dr. Stieg.
After sending the latest scans to Dr. Stieg’s office, his team quickly scheduled an appointment for Michelle for the next week. She says, “when I got to the office, I met his [physician’s assistant], she said, ‘you’re here about your tumor?’ I had no idea what she was talking about.”
After reviewing all of Michelle’s scans, Dr. Stieg found a schwannoma, a tumor of the tissue that covered Michelle’s trigeminal nerve. Though the tumor was visible on a CT scan dating back to 2013, it was disregarded as calcification — a build-up of calcium in tissue. The intensified pain Michelle felt in July was the tumor doubling in size.
Dr. Stieg referred Michelle to Drs. Jonathan Knisely, a radiation oncologist, and Rohan Ramakrishna, a neurosurgeon, for stereotactic radiosurgery as part of their holistic, multi-disciplinary approach to patient care. “Dr. Knisely explained what he thought was possible regarding pain relief, he was so positive and encouraging,” she says. After just three radiation therapy sessions, Michelle was able to go from 22 pain pills a day down to 7. Today she takes one to two pills a day as needed.
Michelle still has some pain due to nerve damage from the various procedures she had before receiving care at NewYork-Presbyterian. Fortunately, she does not have liver damage, which is a common side effect of prolonged opiate use. She says her quality of life has dramatically improved and “I’m off all of that medication, and finally I can face the air, without fear.”
“NewYork-Presbyterian gave me hope and results, everyone — Spiadgie and Jasmine from the front desk in the Stich Radiation Oncology Center, Hannah, my nurse, there, and Victor and Kathleen from the treatment machine — genuinely wanted to see me get well, I felt like they went above and beyond to treat the whole person,” Michelle says. “Thanks to NewYork-Presbyterian, this summer I will not hide behind a scarf. I will be on a beach or sitting in a park with my family enjoying the breeze pain-free!”