Three years ago Lauren Warden was suffering from what she thought was common headaches. She walked into the doctor’s office expecting a prescription and walked out with a life-changing diagnosis. Idiopathic Intracranial Hypertension, otherwise known as a Pseudotumor Cerebri, which causes relentless pain, vision loss and memory issues. She would go on to have nine surgeries. And then No. 10, an operation she could never have imagined having. A surgeon would expand her skull to make more room for her brain, literally making her head bigger. At first she was terrified by the idea. But over time, she came to embrace it. She just wanted her old life back and she was hoping Dr. Rashid Janjua, a neurosurgeon at Novant Health Brain and Spine, would be the doctor who could deliver just that.
Rebel with a cause
When she was just six months old, Warden was adopted by her parents in the remote little town of Pulaski, Virginia, about 94 miles north of Winston-Salem.
“Little did I know at the time that my adoptive mother would end up being my school principal,” she joked. “I was a rebellious child, but I could never get away with anything.”
Warden recalls numerous in-school suspensions after she cut class and got caught smoking behind the building. But, despite her rocky adolescent years, she now credits her parents for providing her with a firm foundation built on honesty, hope and faith.
Warden went on to marry her husband Richard and together they have three boys Alex, 13, Stanley, 11, and Tanner, 10. She also works as quite possibly the only preschool teacher on the planet who has 22 tattoos.
Something didn’t feel right
Warden started getting headaches after a family tragedy in 2017. At first, she thought it was just stress, but the pain didn’t go away.
“I felt like someone was sitting on my shoulders and stabbing me in the head,” she said. “Then I started to lose my vision and decided it was time to ask for help.”
A quick assessment by her primary care provider led to one conclusion, a brain tumor. The worst part: Tanner, her youngest son, was with her in the exam room when the news broke.
“We left the doctor’s office and drove to meet my husband in Burger King’s parking lot,” she said. “As soon as the van door opened, my son popped out and told his father that mom has a brain tumor. For the longest time we just held each other in the parking lot.”
‘I don’t know if I’m going to like him’
This video contains images of brain surgery.
Warden’s local neurologist confirmed the pseudo tumor diagnosis. At that point, her vision was so poor that she had to start wearing glasses and her pain was constant.
“My neurologist said I needed to go to Winston-Salem to see Dr. Janjua,” said Warden. “Driving two hours from home to the big city of Winston-Salem was pretty scary. I had no idea how big Novant Health was, but I was told that Janjua was the best, so I went.”
Warden made her first trip to Winston-Salem with her mother-in-law. During the trip, she remembers loud bursts of laughter between long moments of silence.
And then, Warden met Janjua. She left the appointment with serious doubts.
“I wasn’t sure if I was going to like him,” she said. “He was very straightforward, like a guy version of myself. He told me that my weight was contributing to the problem and that I needed to lose weight. He also told me I needed to come back for a scan in two weeks to determine next steps. To be honest, that meeting was 30 minutes too long and I was irritated on the way home.”
‘A part of me died that day’
Alone with her thoughts, Warden started to lose faith and began to question what she had ever done to deserve this. Reluctantly, two weeks later she returned to complete her magnetic resonance venography (MRV) scan, an imaging procedure to visualize the veins inside her brain.
The results came back immediately. Warden held Richard’s hand as Janjua explained that because of the disease, her brain was like a pressure cooker in your kitchen. “Pressure, as it builds within a pressure cooker can release as steam,” he said, “but the mounting pressure inside her brain had nowhere to go.”
He went on to explain that there are three main parts inside the skull: your brain, spinal fluid and blood. And so in order to reduce the pressure inside of her head, he would have to have less of one of the three and a reduction in spinal fluid is the best option.
In order to do this Janjua recommended that a brain shunt, or narrow piece of tubing, be used to drain the excess fluid caused by the growth. The goal: relieve pressure to stop the pain.
Warden was overwhelmed by the news. “I nearly blacked out,” she said. “Being as young as I was, and then hearing brain surgery, I just went numb. A few minutes later we were talking about my surgery date and how I was going to lose my hair. Things got real, real quick.”
And so Warden returned to Winston-Salem for brain surgery at Novant Health Forsyth Medical Center in March 2017. The procedure went according to plan, but Warden will never forget looking in the mirror afterward.
“When I saw that my hair was gone and I had stitches up and down my skull, I just lost it,” she said. “I know I scared my husband as well as the nurse in the room.”
And when she got home, her normally eager-to-snuggle children, avoided her. “They were scared,” she said. “My youngest still wanted to sleep with us that night, but he stayed on dad’s side of the bed. As a mom, part of me died that day.”
From bad to worse
Warden’s pain persisted. Janjua performed a revision procedure two months later, with little effect. The pressure would not subside.
“Hours after my second procedure, I asked the nurse for a razor so I could cut the last bit of remaining hair off the top of my head,” she said. “It was something I could control, so I wanted to take it off myself.”
After returning home her memory worsened and depression ensued. On separate occasions she allowed the kitchen sink and bathtub to overflow. She had to put sticky note reminders all over the house to remember things like turning the stove off.
She also stopped going to church. “My boys kept praying for me and wanting me to go,” she said, “but I just couldn’t do it anymore.”
A different approach
Warden had a decision to make.
The logical next step was a lumbar shunt. There were also other more invasive options but those would not be feasible until all other options were exhausted.
“I decided to go with the lumbar shunt,” she said. But she chose to hold off on her next surgery until she could take the boys on a family beach trip.
“With everything else going on, my first job is to be a mom,” she said. “I wanted them to just enjoy being kids.”
‘Until I fell asleep’
Janjua performed Warden’s lumbar shunt in October 2017.
“For some reason, I was more nervous about the lumbar procedure than I was the brain surgeries,” she said. “Afterward, I had such a bad panic attack that they had to call Janjua up to check on me.”
That night he sat by her bedside in the hospital until she fell asleep.
I hadn’t seen that side of him before,” said Warden. That’s when she realized that she found the perfect doctor.
When asked about knowing when to be honest and forthcoming and when to show compassion, Janjua said, “My job is to take care of her like I would take care of my own wife. This is a mother of three children. This is somebody’s wife, and somebody’s daughter. They deserve to know the truth, and sometimes the truth is not always sweet. But when she’s having a panic attack, I’m no longer the doctor and she’s no longer the patient. There’s a fellow human being laying over there having a panic attack and in that moment the best thing I can do for her is to hold her hand and provide reassurance.”
In that moment her faith returned, but her pain continued.
“I decided to start going to church again with the boys,” she said. “I would drive the boys there, and then stay in the car, livestreaming the service from my phone. I just wasn’t ready to be seen by anyone.”
That was until Tanner recommended that she listen to “Scars,” a song by the group I Am They. “I realized I was ashamed of my scars, but I needed to embrace them.”
At that point, Warden decided to take things into her own hands. She grew tired of her trips back-and-forth to North Carolina and chose to spend the next six months closer to home where she had two brain stent procedures performed in Roanoke, Virginia. The result, no improvement.
Janjua had not offered her the brain stent surgeries as he did not feel that she would get any improvement from them. He was right.
“That’s when I decided it was time to try the cranial expansion procedure,” she said. Janjua had discussed this procedure as a last resort operation with her before and after many surgeries, he felt that the time had come to entertain this. “I knew this was my last shot, so she loaded up the car and made the first of 15 more trips back to Winston-Salem on Jan. 2, 2020.”
Janjua used an analogy to explain the series of procedures. “Imagine for yourself that in her situation, the glove is just too tight for the hand. In each of the first few procedures we essentially tried to reduce the size of her hand inside the glove, but when that didn’t work, we decided to make the glove – or in this case her skull – bigger to accommodate the size of her brain to relieve pressure.”
To do this Janjua worked with Dr. George Lawson at Forsyth Plastic Surgery to insert tissue expanders under Warden’s skull. Much like the tissue expanders used after a mastectomy for breast reconstruction, these expanders were used to stretch her skin over multiple weeks in order to make additional space in her skull for the last procedure.
“Think of it like a gift-wrapped box,” Janjua said. “Since we were planning to make the brain or box bigger, we needed more wrapping paper. That’s why the tissue expanders and stretching her skin was so important.”
Six days before her final procedure, Warden wore flip flops, blue jeans and a knit hat to hide how her skull has expanded like a cone on the left side of her head.
“None of this would be possible if it were not for the loving support of my family,” she said. “Richard was incredible and became Mr. Mom, when I wasn’t able to be much of a mom or wife. And my boys never stopped praying for me.”
When asked what she had learned throughout this experience, Warden said that she discovered who she is and why she was here. And that she wants to share her story to encourage others to never give up.
“When I was first diagnosed, I joined every support group,” she said. “Then I deleted them all. I got tired of seeing other people suffer. But I want to share my story to provide hope where there is none.”
In her final weekend before surgery she decided to write just-in-case love letters to her husband and children, and then go to church on Sunday.
“I want to make sure my boys know how much I love them and tell them that I’m sorry they had to go through this,” she said. “I hope they can forget these bad memories and that we can make some new ones together soon.”
Before heading home after her final pre-op appointment, Warden said that she had to go see her good luck charm, Diane Ayala. Ayala works as Janjua’s assistant and the two became close after Warden’s first procedure three years ago.
“Diane was there for me during the crying moments and the mad moments,” Warden said. “Now that we are at the end, saying goodbye to all of the people that I have grown to love and trust is bittersweet.”
“This surgery is not for everybody. This requires a lot of faith, courage and willingness to go through the process of expanding the skin and then undergoing the meticulous surgery. We have a lot of experience with this surgery and have the team that can do this safely” said Janjua.
Warden was nervous the morning of her surgery. Shortly after arriving at the hospital at 5:30 a.m., she met her nurse, the anesthesiologist, the video team that she agreed to let record the procedure and then Janjua.
“Dr. Janjua came in and gave me a big hug that felt like it was 20 minutes long and all my anxiety went away,” she said. “He told me that he was doing this procedure for my boys, for their lives to go back to normal.”
Lawson started the nearly four-hour procedure by carefully removing the spacers from Warden’s brain. Then, using his hands, Janjua carefully cut and readjusted nearly 80% of her skull on the left side of her head to “expand the glove” and relieve the pressure in her head.
For the first time in three years, Warden woke up with a no pain and no headache.
“I’ll never forget seeing Richard’s face,” she said. “He looked so calm and I was so calm. We both knew it was over.”
The following day, Warden held Richard’s arm as the couple made several laps around the neuro intensive care unit. “Throughout it all, Richard never left my side,” she said. “I can’t wait to go home and wrap my arms around my boys.”
Return to normal
Fearing the worst about her new set of scars, Warden waited until she got home to look in the mirror. And when she did, she was scared to even allow the boys to see her.
“At first, we actually used Google Home to talk back and forth in the house,” she said. “But then Tanner, who was with me when I was first diagnosed, insisted on coming in the bedroom. I’ll never forget that he took one look at me and said, ‘Mommy, you are beautiful.’”
Eight days later the entire family piled into the family’s minivan and headed back to Janjua’s office for a follow-up appointment.
“I feel great,” she said. “Besides the pain from surgery, the pressure is gone and so are my headaches.”
The joy was palpable in the exam room. After inspecting her incision, Janjua asked Richard if it felt like he had his wife back. A visible lump formed in Richard’s throat as he smiled and nodded his head yes.
“I absolutely think she is a fantastic woman,” said Janjua. “And I love her for everything that she brings to the table as a patient who has never given up. I will never give up if my patients don’t either.”
As for Warden: “I don’t care about my scars anymore. My scars are proof that I’m still here.”
Top photo: Lauren and Richard Warden bring their boys Alex, Stanley and Tanner to see Austin Beshears, AGNP, and Dr. Rashid Janjua at a follow-up appointment.