Lahey Patient Back to Spending Time With Grandkids After Being Treated for Debilitating Neurologic Condition

April 17, 2024

New Outlook on Life after Lahey Treatment

Patricia Chandler, a Maine native, liked being busy. Nothing gave her more joy than a packed to-do list and a day full of activity. But when she developed headaches while standing that quickly became so severe she was practically bedbound, she knew something was wrong and she needed to seek help.

Within 15 minutes of being up in the morning, the headache started. “It would begin in the front and, as the day progressed, it would end up at the back of my head,” she said. “Every single day was the same story.”

By Christmas 2022, her symptoms had become unbearable. In addition to the headaches, she started losing her balance and had developed a persistent ringing in the ears. As a result, she was no longer able to carry out her duties as an operating room technician, and even such simple activities as spending time with her grandkids had become impossible to enjoy.

“It was frightening,” she said.

‘Somebody Who Has a Plan’

After seeing several specialists in Maine, she was diagnosed with a syndrome called Spontaneous Intracranial Hypotension (SIH). SIH is a rare brain condition caused by a loss of the fluid that normally flows around the brain, resulting in severe headaches when standing, usually becoming intolerable as the day progresses.

This loss is usually at the level of the spine and can either result from a direct leakage or from a fistula, which is an abnormal connection between that fluid space and the bloodstream.

Many patients end up being bedbound for most of the day and, in rare cases, can develop dementia, coma and even die. Although SIH affects up to roughly 1 in 20,000 people (about the seating capacity of the TD Garden), the condition is underdiagnosed and not widely known in the medical community.

After her diagnosis, Patricia was referred to Dr. Emanuele Orru at Lahey Hospital & Medical Center for further management. The Lahey Neurointerventional team, which includes Drs. Neil Patel and Jonathan Pace, is among the few in North America with a consolidated expertise in the diagnosis and treatment of this highly debilitating condition.

Patricia’s SIH had taken so much joy from her life that when she was finally presented with a clear treatment plan, it was like a huge burden was lifted from her shoulders.

“Oh my gosh,” she remembered saying to herself. “Somebody that actually has a clue – and a plan. It was such a relief.”

Simple Solution to a Severely Debilitating Condition

Despite the severity of the condition and the intensity of her symptoms, Patricia’s treatment plan was clear from the beginning.

After a series of tests, Drs. Orru and Patel found several fistulas (abnormal connections) between the fluid space and the bloodstream that were the cause of Patricia’s symptoms. She then underwent a minimally invasive procedure in which a special liquid material was used to plug the holes.

As Dr. Orru explained, the most critical aspect in the management of SIH is to recognize the disease and direct the patient to a center with appropriate expertise in the management of this syndrome.

“At Lahey,” he said, “we have designed a protocol that allows accurate detection of the point of fluid loss and, once it is localized, definitive treatment with very safe and effective procedures. In most cases, patients will spend no more than a few hours in the hospital and usually don’t have to stay overnight.”

Patricia experienced a few hiccups, mostly due to the normalization of her head pressure after it being extremely low for a very long time, but within weeks of being discharged for the last time, she noticed a drastic improvement in her symptoms.

“It only took a couple of weeks, and I was feeling so much better,” she said. “It was amazing to not have a headache every single day for the first time in over a year.”

Good Health is a Gift that Shouldn’t Be Taken for Granted

Today, Patricia is immensely grateful for the care provided by the entire Lahey Neurointerventional team. They were attentive to her needs the entire time she was in their care, and even after she was discharged, they stayed in touch to make sure her recovery progressed smoothly.

“They were texting me and calling me just to check in and make sure everything was going alright,” she said. “I don’t know what I would’ve done if I hadn’t had their support.” Patricia is back to living her life. She returned to work full time, and she’s able to do things with her grandkids she thought she’d never be able to do again. Attending their school activities, having sleepovers and playing with them in the pool has given her so much joy back.

It’s also given her a new outlook on life.

“You should never take your good health for granted,” she said. Since getting better, “the things that are important really come forward, and all the other stuff just falls away.”