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The other PTSD: When memories of the ICU won’t go away

Nine months after her brain surgery, a clinical psychologist diagnosed her with a condition often thought to affect battle veterans and victims of violence.

Claire Snyman is a brain tumor survivor helps other patients be better advocates for themselves.
Claire Snyman is a brain tumor survivor helps other patients be better advocates for themselves.Read morePhotobin Photography

As I close my eyes to rest my weary brain, I hear the beeps of machines monitoring my body. I feel the cool air of the operating room brush over my skin. Bright lights shine on my fragile body, prone on the hard metal of the operating table. I taste the metallic anesthetic in my mouth.

When I open my eyes, I'm in a bed with monitors all around me. Noises. I can't move. I'm in the intensive-care unit (ICU).

Then I really open my eyes.

I'm in my own bed. In my own home. There are no monitors, no operating room, and I'm not in the ICU. It's just me and the haunting film reel that starts every time I close my eyes.

It's been six months since my brain surgery for a non-malignant brain tumor that became a rebel.

There is nothing "normal" about having brain surgery. But the circumstances that led to my surgery were especially far from normal.

Two misdiagnoses followed by a cross-country flight for life-saving brain surgery. Five days in ICU, post operative chemical meningitis, and two weeks away from home.

I didn't realize I could expect a psychological challenge during my recovery.

Post-traumatic stress disorder (PTSD) is often thought of as a symptom of warfare, major catastrophe,  or assault.

Yet in a recent study, researchers found that nearly one-quarter of ICU patients suffer from PTSD. It's now defined as part of post-intensive care syndrome (PICS) or PICS-Family (PICS-F), the relatively new terms for the physical, neurological, and emotional  consequences that linger for patients and family members long after leaving the ICU.

Research also shows that a majority of patients diagnosed with critical illnesses, such as breast cancer, can go on to develop symptoms of PTSD.

I didn't realize I had PTSD until I visited a clinical psychologist nine months after my brain surgery.

A film reel played each time I closed my eyes, and each time a scent or sound connected to those surreal days in the hospital triggered those images and overwhelming feelings. It was PTSD. I experienced feelings of inadequacy, vulnerability, and a lack of confidence. I thought this was due to my short-term memory loss and extreme fatigue. It was PTSD.

Nine months after my amazing brain had undergone the injury from the brain tumor, surgery and meningitis, I needed to help it heal in a different way. My brain was in "fight and flight mode"; it thought it still needed to survive. I had to let it know "You are OK; you have survived."

The way out from PTSD

My treatment involved regular counseling and meditation, which continued for months. Eventually, the symptoms lessened. The film reel was no longer playing and the noises were gone.  There was silence.

Another part of my treatment started, unbeknownst to me, straight after my brain surgery. I was writing to deal with the flurry of emotions I was experiencing. I truly believe that writing was instrumental in helping me deal with what had happened, to make sense of this very intense time in my life.

Getting in front of PTSD

I was inspired to learn that hospitals, such as Johns Hopkins and Penn Presbyterian Medical Center, based on experiences at European hospitals, were using ICU diaries to help prevent PTSD and improve patient recovery. ICU diaries help patients, families and staff chart goals, milestones, and what actually happened during an often surreal, drug-induced and sleep-deprived time.   These diaries help patients and families both during and after the ICU stay to improve health-related quality of life.

It's often when the crisis of illness is over that we breathe a sigh of relief. I know I did. Unfortunately, that can be when the next battle comes. The battle of the mind.

As more people survive critical illness, the incidence of PTSD becomes greater.  However, if we are prepared and proactive, we can be equipped and ready.

Claire Snyman is an author and speaker who is a volunteer in the brain tumor community. Twitter: @clairehsnyman. This guest column appears through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for more than a million patients and caregivers.