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Colleen Lorig’s AVM Story

Wednesday, July 10, 2019 was just a typical day for the Lorig household — a dedicated, hardworking military family stationed in North Carolina. Colleen Lorig’s husband, an Army soldier, was preparing for a deployment. As part of that preparation, he left for work at 5:00 a.m. His wife, Colleen, also got up early to help him get off to work. Colleen gave her husband a kiss goodbye and then nestled back into bed with their two young children — who were both fast asleep.

A Bomb Goes Off

In a dream state, Colleen felt what she described as a bomb going off in her head. She was jolted awake and met with intense pain unlike anything she’d ever felt in her life.

Colleen says, “I looked to one side and saw my son sleeping next to me and on the other side, my daughter asleep in her bassinet, but I could not go back to sleep.”

Colleen’s excruciating pain grew in intensity, so she decided to call her mom who was living in another state an hour behind.

Colleen says, “It was the wee hours of the morning for my mom, but when I called her, she was already awake. I asked her why she was up, and she said she didn’t know. She just had me on her mind. I told her that I was in so much pain and didn’t know what to do, so she said to ask the neighbor to watch the kids and call 911.”

Embarrassed to bug the neighbor, Colleen waited until 6:30 a.m. to ask for help. “I knew my neighbor had a job, and I felt horrible to ask her.” Yet, Colleen’s neighbor stepped right up to help and also enlisted her own mom who came over, took care of the children and drove Colleen to the WakeMed Cary Hospital Emergency Department. “My neighbor’s mom was very kind, and I owe a lot to her for sure.”

The WakeMed Cary Hospital Emergency Team Goes to Work

Once in the hospital, Colleen was admitted as doctors worked hard to figure out what was wrong.

Colleen says, “In the emergency room, everything just started to get more painful to hear, to watch, to listen. I just wanted everyone to go away.”

As her pain mounted, clinicians ran multiple tests to determine the cause of her pain.

“I’ve heard that an aneurysm is the worst pain a human can take, next is childbirth and kidney stones. This was way worse than giving birth or having a kidney stone. I know. I’ve had both.”

Unable to find an immediate cause, the medical team decided to keep Colleen overnight for pain management and additional diagnostics. The night nurse administered morphine through Colleen’s IV to reduce the pain. The morphine did not alleviate the pain, but as it entered her blood stream, another bizarre symptom began.

Things Go Haywire

Her arm began moving wildly all on its own. At first, it was funny, but then Colleen grew fearful. “The nurse called someone to come check on me. It started to get really scary.”

The clinical team raced into Colleen’s room aware that her situation was grave. One physician asked Colleen her name. She knew her name but was unable to state it. “I said ‘Caitlin,’ which is my sister’s name.”

Colleen’s husband, by her side since early that day, was in agony over his wife’s condition, and in that moment, he could not contain himself. “The look on my husband’s face was pure terror. My body suddenly went cold and numb, and my husband later told me that my face started to droop.”

Another clinician asked Colleen the date. She was unable to think of the date and burst into tears. “I was like, ‘What’s happening?'”

Knowing that every minute was precious, clinicians rushed her in for a CT scan. Colleen began vomiting during the process. She says, “They sedated me, and I woke up a week later.”

It’s All In Her Head: An Arteriovenous Malformation Diagnosis at WakeMed Raleigh Campus

While she was sedated, Colleen was transported to the WakeMed Raleigh Campus Neuro Intensive Care Unit where she received treatment for an Arteriovenous Malformation (AVM).

According to Tonya Disorbo, a WakeMed Neuro ICU Clinical Supervisor, “AVMs are like a mass of arteries and veins that look like they are all tangled up together. The two systems arterial and venous usually join by capillaries where arteries bring oxygen to the tissue. It is exchanged at the capillary level and then carried away from the tissue back to the heart to reoxygenate by the venous system. In an AVM, there is not a capillary bed system to transition the flow from arterial to venous which is a high flow system directly to a low flow system. Without that barrier, the AVM can grow and eventually rupture from high pressures. Patients may or may not ever have any pre-warning symptoms depending on where the AVM is and what type of pressure it may be causing. AVMs can also develop in the spinal cord.”

A very serious and complex diagnosis, WakeMed community neurosurgeon, Dr. Brandon Burnsed performed her brain surgery. He temporarily removed part of her skull to gain access to the AVM.

With the help of a high-powered microscope, Dr. Burnsed then sealed off the AVM with special clips. He carefully removed the AVM from surrounding brain tissue and closed the incision in her scalp.

Recovery at the WakeMed Rehabilitation Hospital

Colleen says, “I felt like a stranger to myself when I woke up. I didn’t realize a huge part of my skull was missing. They wanted me to talk, and all that would come out was ‘I am.’ That’s all I could say for a couple weeks even though my thoughts were clear. I also couldn’t move for a couple days after I woke up. My arm did not work until a month later.”

Colleen spent 22 days in the hospital when she was initially admitted. She went on to inpatient rehab at WakeMed Rehabilitation for 35 days. She was discharged home August 6 to await a follow-up surgical cranioplasty (bone flap replacement), removed in the original surgery. After her cranioplasty, Colleen stayed three days and was discharged, thereafter, to WakeMed Rehabilitation for 13 days to complete additional rehab that she was unable to participate in prior to the second surgery. She spent a total of 73 days at WakeMed.

So Much to be Thankful For

Today, Colleen is back at home with her husband, son and daughter.

Tears in her eyes, she credits a huge community of people for loving her and being there during the most harrowing experience of her life.

She says, “So many people made such a huge difference. The nurses were amazing. Even nurses not assigned to me would walk by and see me crying, and say, ‘It’s okay. It’s going to be okay, honey.’

“My family from Chicago was always there. There was no time that they weren’t there, and I was in the hospital for months.

“My therapists were the most amazing people. I was in therapy for two years and always felt like ‘Wow. Everyday, I can do something new.’

“My surgeon was amazing.

“My husband was about to be deployed, but instead he was there for weeks — even with the kids.

“My mother and father were there throughout the entire journey, high fiving each other in the airport and just switching off. When my mom got the call from my husband, I think it broke her a little bit. Being a mom, that is like a worst nightmare. It’s the worst case scenario.”

A Blessing in Disguise

Despite the horrors of her AVM, Colleen sees it as a blessing in disguise. “It made me realize that everyone has their struggles internally, and you cannot base an opinion on how someone physically looks.”

About WakeMed Neuro ICU

WakeMed’s Neuro Intensive Care Unit (Neuro ICU) provides the highest level of care to patients who have had a complex neurosurgical procedure, complications from a stroke or a related traumatic brain or spinal cord injury. Our Neuro ICU is Wake County’s only intensive care unit designed specifically for neurosurgical and neurotrauma patients. Each year, more than 500 patients from across our region are admitted to this highly specialized unit.

About WakeMed Rehabilitation

When an adult or child has a stroke, brain injury, spinal cord injury, orthopaedic issue, trauma or limb loss, it’s a comfort knowing that a full continuum of care is available. The WakeMed Rehabilitation Hospital, a 103-bed nationally accredited rehabilitation hospital, in Raleigh, N.C. provides services to help restore patients to the highest level of functioning possible.