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One Woman’s Search for Relief from a Cerebrospinal Fluid (CSF) Leak

White Plains Hospital

December 31, 2024

One Woman’s Search for Relief from a Cerebrospinal Fluid (CSF) Leak

When she learned she had a potentially life-threatening brain condition, Bernadette Berkeley wanted a top-notch team to treat her. After she met the physicians of White Plains Hospital, she knew she’d finally found what she’d been looking for.

Bernadette Berkeley’s path to White Plains Hospital was anything but quick and easy. Her journey started in April 2020, when she began to notice something strange. Each morning when she sat up in bed her nose would run, but only from her right nostril, and the fluid was clear. It usually stopped once she got up. Then one day it happened in the afternoon, shortly after the 65-year-old social studies teacher finished a remote lesson with students at her Brooklyn school. The leakage no longer seemed as simple as congestion that had built up overnight and she began to experience an odd tone in her left ear.

Perplexed, Berkeley visited two ENTs. “Both said it was allergies,” she recalls. The second ENT ordered a hearing test. The results were normal, yielding no insight into why she heard a phantom noise. “He told me to take allergy pills, but they didn’t help,” Berkeley says. As a teacher, she decided to do some homework. “I researched online, and discovered my symptoms could mean I had a cerebrospinal fluid leak,” she remembers. CSF, as it’s called, is a clear, colorless liquid that protects and supplies nourishment to the brain and spinal cord.

Although her ENT was skeptical that this was the cause of the problems, tests revealed her hunch was correct. The condition can be caused by trauma or simply occur over time, which was the case with Berkeley. She now had a diagnosis; finding the right doctors to treat it would be much more complicated.

Differing options, deep confusion

She consulted multiple specialists at various New York City hospitals, and tests showed two CSF leaks in her skull—one at the front, affecting her sinuses, and another at the side, leaking into her ear. In addition, a small part of her brain was sagging into the first leak due to pressure. A vein specialist found a narrowed vein in her neck and suggested inserting a shunt to correct the CSF flow.

However, another doctor warned that this procedure could increase her risk of meningitis and recommended sealing the leaks instead. Unsure, she scheduled surgery twice but canceled both times, eventually deciding to focus on fixing the leaks. Over the next three years, she continued visiting numerous hospitals, as the condition started to affect her well-being, causing fatigue and headaches.

One day, Berkeley came across a medical paper online authored by a physician who had treated a similar case. She visited him in New Jersey and was impressed by his kindness and expertise, but even he wasn’t the right doctor for her.

“I wanted a neurosurgeon present in the operating room in addition to the ENT, to make sure my brain was protected. Unfortunately, this doctor didn’t have a team,” she says. But he knew where Berkeley could have the procedure done the way she wanted, and called his colleague, Dr. Brian Nicholas, Director of Hearing and Balance at White Plains Hospital.

Finally, the right doctors

“Dr. Nicholas was so nice," Berkeley remembers. "So many doctors rush you out, but he really took the time to discuss my problem.” Berkeley underwent more CAT scans to get an up-to-date look at the problem sites. Dr. Nicholas informed her she would require at least two surgeries, both of them aimed at sealing the leakages rather than shunting the vein, which in addition to raising the risk of meningitis would be less aesthetically pleasing.

He also told Berkeley she should not put off treatment any longer. “Her risk of meningitis was considerably higher than average because the spinal fluid space was exposed to the outside world, not to mention all the bacteria that live in the ear and nose,” Dr. Nicholas explains.

He then introduced her to the physician who would perform the initial procedure: Dr. Ameet Kamat, a specialist in sinus and endoscopic skull-base surgery. The doctors decided it would be best to begin with the leakage that involved Berkeley’s brain protrusion. “Dr. Kamat was so kind and concerned. I had a list of questions, and he didn’t just sit behind his desk and answer them. He got up and sat next to me and looked at them with me. Once I met him, I was sure I was in the right hands,” Berkeley says.

Because White Plains Hospital is part of the renowned Montefiore Health System, a neurosurgeon could be brought in to assist in the operating room, just as Berkeley wanted. Dr. Vijay Agarwal, Director of Montefiore Einstein Skull-Base Tumor Center, would be present and make sure Berkeley’s brain was safe every step of the way. Yet another doctor would be on hand, too—Dr. Samuel Helman, an Otolaryngologist who specializes in head and neck surgery, as well as sinus- and skull-based surgery. “Bernadette had the full court press,” Dr. Kamat says.

Dr. Nicholas checking on Bernadette.
Dr. Nicholas checking on Bernadette.

“I was ready to go”

In April 2024, Berkeley had the first of her two procedures, and a great outcome. “I was scared right up until the surgery,” she remembers. “But I knew I was happy with the team I had. I was ready to go.”

First, Dr. Kamat opened her sinuses to make sure there were no other sources of leakage. Next, he concentrated on the sinus the brain was bulging into, causing the CSF leak. It was in a very tricky spot. “If you drew a line from your ears and met in the middle, that’s where that sinus sits. It’s behind and in between the nerve that gives us sensation on the face, as well as one of the nerves that helps our eyes tear,” Dr. Kamat explains. He would need to work delicately.

He carefully entered through her right nostril, removing a small bone near the eye to access the area where her brain was protruding. Then he went through the left nostril and removed part of her septum for a better view.

“The brain was even more herniated than it had appeared on the scan,” Dr. Kamat says. Dr. Agarwal cauterized and removed the herniated brain tissue so it was no longer in the sinus cavity. (That portion of tissue was no longer essential to the brain anyway, since it basically had been pinched off and was non-viable). To fix the defect in the skull base, Dr. Kamat then took the lining of the septum from the left side of her nose and placed it through the septum hole, covering the entire part of the nose/sinus cavity where the skull base eroded and the brain tissue was bulging. After a multi-step procedure, the five-hour surgery was finished.

Five months later, Berkeley had the second procedure. Dr. Nicholas operated since he specializes in that area of the skull base. The affected bone is very thin, so Dr. Nicholas needed to exercise the same caution and finesse Dr. Kamat had when performing Berkeley’s earlier operation. Dr. Nicholas approached the problem site from beneath to minimize disturbance to the brain, and checked for brain herniation into the leakage site; fortunately, there was none.

Next, he repaired the defect in the bone using a durable bone-substitute material. Repairing the bone covering sealed off the spinal fluid, Dr. Nicholas explains. He also put in cartilage taken from the front of one of Berkeley’s ears to provide extra stability to the base of the skull and prevent the possibility of further brain herniation. After recovering in the hospital, Berkeley returned home, both leaks repaired at last.

A cure that was worth the trip

During Berkeley’s recuperation from both surgeries, she was impressed by the care and attentiveness of the hospital staff. “The nurses, in particular, were so kind and accommodating,” she says.

She continues to have frequent check-ups with Dr. Kamat: three times in the first month, and monthly since then, both to make sure the leakage seal is holding fast and to do any clean-up of nasal debris as needed. She also sees Dr. Nicholas regularly. “She’s doing beautifully,” he says, an assessment that Dr. Kamat wholeheartedly agrees with. At a future point, Berkeley may be treated by an interventional neurologist at White Plains Hospital to either divert some of her spinal fluid in some way, or to boost drainage.

Gone are the feelings of malaise, Berkeley says; she’s back to shopping and her daily activities. Although she’s a Brooklynite, she’s glad she went the extra mile and got surgery at White Plains Hospital. “This hospital could go to the end of the world and I will follow it. I want to receive all my healthcare here from now on.”