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BRAIN WAVES

Brain Injury Alliance of Arizona Blog

Here Comes the Bride

By Ellen Fortini

Hosting a wedding in 2020 during a pandemic was not a dream scenario for any bride, but for East Coast businesswoman Ginger Tildon, her May wedding after a near-death experience was the perfect start to her next chapter.

“In 40 years, I have never talked to God so much in my life as I did throughout this,” she says. “It was like an epiphany that there has to be something that kept me alive. I was told by doctors that most people with this die within 48 hours or if they do live, they live a month, or they are blind.”

Here Comes the Bride

By Ellen Fortini

Hosting a wedding in 2020 during a pandemic was not a dream scenario for any bride, but for East Coast businesswoman Ginger Tildon, her May wedding after a near-death experience was the perfect start to her next chapter.

“In 40 years, I have never talked to God so much in my life as I did throughout this,” she says. “It was like an epiphany that there has to be something that kept me alive. I was told by doctors that most people with this die within 48 hours or if they do live, they live a month, or they are blind.”

In 2018, Ginger and Allen Tildon of Essex, Maryland, specifically chose their wedding date to be May 16, 2020. It would be their second wedding as well as the birthday of Allen’s mother, whose funeral the former spouses reconnected at several years prior. Of course, we all know now that Covid-19 affected more than a year’s worth of plans and the Tildons’ wedding was no exception. So, as they counted out the eight weeks from the onset of the pandemic to the end of the initial gathering restrictions, they found that their chosen date would be just after the local lockdown and they were relieved to think that they would be able to proceed as planned.

But on Sunday, March 29, everything changed, and the wedding date would soon be among the least of their worries. Late that night, Ginger, then 40, suddenly found herself feeling unwell. She describes feeling woozy and dizzy and with a “sloshy” sensation. A slight pain in her head quickly grew in intensity and shot from the base of her skull to behind her eyes. “It just dropped me to the floor,” she says. Writhing in pain, she screamed to Allen, “Something is wrong with my head!” She rolled onto her back and realized she could not move any of her extremities or her head.

She begged Allen to get her some ice. Before he returned, a wave of nausea came on and she projectile vomited. She laid down on her bed and now remembers, “It’s the weirdest thing and maybe unless something like this happens to you, you don’t know, but something said to me, ‘If you lie here, you’re going to die.’”

So, she got up and called 911 to request an ambulance, and then called her mother Nellie, who lives down the street, to come and watch the couple’s twin daughters, Olivia and Carolyn, who were five at the time. Ginger says she remembers reassuring her daughters, who had woken up, that she just had a bad headache but needed to go to the hospital.  

Ginger says she has little to no memory of the next couple of days, but that she was initially transported by ambulance to MedStar Franklin Square Hospital in Baltimore, about a 10-minute drive from her home. It was the early days of COVID-19, so Allen was requested to follow in his truck, and he was not allowed to enter the hospital with Ginger. Her memories of the next few days are mostly of sensations: being brought into the cold air outdoors, the sound of the CT machine, being in darkness, and lying in the hallway for five hours before being sent to the University of Maryland Medical Center (UMMC) in Baltimore.

“I remember sometime later that day, Monday or Tuesday, waking up in the neuro ICU at the University of Maryland,” she says. “Wednesday was the first day I was awake from morning to night.” In at least one way, Ginger was a fortunate patient. Her sister-in-law Erica, who works at the connected R. Adams Cowley Shock Trauma Center, was allowed in to see her for about 10 minutes at a time. “Every few days she would come and bring me Chapstick or a phone charger or whatever I needed, and she would fill Allen in on updates.”

One of those updates came on Day 9, when the pressure on Ginger’s brain was so great, she needed a lumbar puncture to drain some fluid. “My memory of the first week is foggy. I drank a lot of water and people came into ask me questions like what day it was and if I knew where I was. They also kept asking me if I could see, because they initially thought that I was going to go blind,” she says.

It was a slow progress to stabilization in the ICU as doctors were still investigating what was happening to her. Finally, she was diagnosed with nonaneurysmal subarachnoid hemorrhage (NASAH), which is bleeding in the layer surrounding the brain that contains cerebrospinal fluid. Generally, the bleeding comes from an aneurysm, but some patients, like Ginger, experience bleeding from a vein or artery at the base of the brain. Her symptoms of severe headache, neck pain, nausea and vomiting, and sensitivity to light were textbook for a NASAH diagnosis.

“The first week, I couldn’t open my eyes, I couldn’t have the TV on in my room, no lights on. I just needed my face covered and an ice-pack on my head,” she recalls. “I just laid still unless I took a drink of water, and I drank a lot of water. I was hungry, but I wasn’t eating because I didn’t have the energy to chew food and the pain was so bad I didn’t even want to chew. And when I did, it was applesauce. I lost 18 pounds in two weeks.”

By the second week, Ginger became more aware of her surroundings and her pain began to stabilize. “I remember the nurses sitting with me while I cried. I was able to call my mother and husband and kids every day, and I even called my work.” Having recently been promoted to vice-president of an association management company, Ginger maintained her strong professional integrity even while in the ICU, checking in on her staff and clients. The close-knit work community supported her throughout her illness and convalescence.

She describes the pain as coming and going throughout the week, and recalls being taken for more tests when all she really wanted was to sleep. “I had really bad spams in my back that would make me arch up off my bed. The doctor told me that it was an irritation because for the blood to drain out of my head, it was draining through my back.” The neurosurgeon had more concerning news for Ginger. A normal intracranial pressure (ICP) reading for an adult is 7-15mmHg, but Ginger’s was 35mmHg. The doctors needed to do a lumbar puncture immediately to get the pressure down below 15mmHg.

Ginger bristled at the thought, remembering the five times she was stuck with a needle for her epidural when her twin daughters were born. The anaesthesiologist convinced her, though. “He said, ‘I am not going to hurt you, but we have to do this and we have to do it now’. So I laid down and the next thing I knew, there was fluid running down my back. I didn’t even feel the needle go in.” That simple procedure not only gave Ginger relief from the pressure in her brain, but also the confidence for two additional lumbar punctures over the next several days. After the third procedure, when the pressure had gotten up to 45mmHg, the neurosurgeon gave her two options: to put a temporary drain in her spine, or a shunt in her brain. Ginger says she left the decision up to the doctor and placed her trust in him.

The next morning, the doctor let her know that the ruptured vein has stopped bleeding so he and his team had decided to put in the shunt. The plan was that they would shave part of her hair, perform the surgery, and she would be able to go home the next day. Exercising her right to be her own best advocate, Ginger let the doctor know that she would be going home to two active five-year-olds, so a next-day release would not be in her best interest. They agreed to give her an additional full day to rest.

The four-hour surgery took place that Friday and was successful, giving Ginger the relief she needed, as well as a close shave of nearly a third of her head of long, dark, wavy hair. Saturday evening, the nurses asked her if she had called someone to get a ride for the next day and handed her a stack of papers to sign and review, but the neurosurgeon never came back to see her. Ginger was uncomfortable with what felt like an abrupt discharge. “They said it’s not uncommon for a doctor to not come in on Saturday, and I said, ‘It may not be uncommon for you, but you just drilled a hole in my brain and I’d like to talk to somebody before I go home.’ But he never showed up. When I finally got to Zoom with him six months later, I realized he reminded me of Mister [Fred] Rogers and I got to thank him for saving my life.”

But even now, nearly a year post-op, Ginger says she is still not fully clear about what happened to her. “It’s amazing to me how little I know about what happened to me in the hospital,” she says. “I had a follow-up angiogram and the Zoom check-up with the neurosurgeon, but I have never been back to the hospital for anybody to look at me. They even told me to remove my own staples from my head. It was just a mess.”

She attributes the hands-off nature of her recovery to COVID concerns at the facility. “If you’re going to have brain surgery, the University of Maryland is where you want to go,” she says. “But I was using a walker just to take a shower, then suddenly I was handed a discharge packet and the staff were asking me if I called my ride. A nurse didn’t even wheel me out. Erica had arrived, so she put me in a wheelchair and took me to my brother’s truck, and that was it!” The day before Easter, exactly two weeks from the onset of the bleeding, Ginger was finally at home. The next morning, Easter Sunday, Nellie brought Olivia and Carolyn home to see their mom. “I was just so happy to be there. And I told Allen as I cried, ‘I am just so happy to be here.’”

So how did this happen? Was it something genetic? Stress-induced? “There really was no explanation as to what happened,” says Ginger, who is still hoping to track down her medical records from the event. “They just said that a vein had ruptured in my head and it was one of those rare things and I should never have any problems with it again, but there was no prelude to it and no cause of it.”

No cause, perhaps, but her lasting effects include post-traumatic stress. “I had quite a bit of depression and anxiety that hit me after all of this,” she says, “I had a terrible time getting to sleep because I was just afraid something was going to happen if I got a headache. I actually had a migraine on the six-month anniversary of the event and I immediately called my mom and went to the emergency room. I’d never had a migraine before in my life.”

It must be quite an unsettling coincidence to have your first migraine exactly half a year to the day after falling to the floor, and Ginger’s worries led her to ask her primary-care doctor to put her on an anti-anxiety medication. But she says the greatest lingering after-effect is the brain fatigue. “If I get worn out and tired, it’s like an ache in my brain. It’s not a headache, it’s just a different kind of ache like your brain is tired and you need to lie down and close your eyes. It sometimes causes a stiff neck.”

Her first days at home posed some challenges for the family. Ginger needed a walker to be mobile because she was unsteady on her feet, and she had to figure out a way to sleep sitting upright because the fluid continued to drain. With a makeshift bed in the living room, mama and her girls happily spent three weeks in close quarters. “They wouldn’t leave my side. They’d check on me and make sure I took my medicine.” Initially prescribed oxycodone, Ginger preferred not to take pain killers, so she opted for Extra Strength Tylenol. “I kept an ice pack on my head at all times and that helped a lot.”

Despite her pain and discomfort, Ginger was eager to return to work. “I jumped right back in because I don’t like other people to touch my stuff,” she laughs. “I am very organized, and I know what is going on.” The brain fatigue was her main obstacle at first, and with the company’s staff already working from home due to Covid measures, Ginger was able to log on remotely from home starting in June, Due to her sensitivity to light, she could only work sporadically, or she would get a headache.

At the end of August, the staff returned to the office and Ginger took the opportunity to get back to her regular routine. But the first month, she had to leave work early on a few occasions or shut off the lights in her office and close the blinds. “When I felt the brain fatigue set in, I’d pull up some meditation music on YouTube and close my eyes and relax and see if I could make it through the rest of the day,” she recalls.

It took a full month back at work for her to feel normal in her office environment again. “The anxiety medication really helped me not worry about every little tick and twinge,” she admits. Fortunately, the timing was convenient. In early November, due to an emergency staffing situation, Ginger was named the acting president of the company and she needed to perform at full speed. “I’ve been so busy ever since then; I haven’t had a headache and I haven’t had time to worry about a headache. If I get stressed or tired, I must take a break and rest or I’ll go home and say to my kids, ‘Mommy has to lie down tonight’, and they get it.”

While some things are back to normal, there are consistent reminders that there is a new normal for Ginger and her family. “I was a mess when I first saw my primary care doctor and I told him that I can’t mother my kids right and I can’t get myself together,” she says. “He said that I have post-traumatic stress in that I experienced something that really should have killed me.” She also feels that not having her medical records adds to her stress and she hopes to acquire them from UMMC.

“In 40 years, I have never talked to God so much in my life as I did throughout this,” she says. “It was like an epiphany that there has to be something that kept me alive. I was told by doctors that most people with this die within 48 hours or if they do live, they live a month, or they are blind.” She says she has had her eyes checked multiple times since the event and there are no lasting issues. “I’m just grateful. I joined a Facebook group for people who survived this and many of them have terrible, lingering effects for years and years. I feel so much better about myself. Once I got the anxiety under control, I am fortunate to just have some brain fatigue and a headache from time to time.”

Her good fortune got her back on her feet, back in the office, and perhaps best of all, back to planning her nuptials. The couple’s wedding happened on the meaningful date of May 16th, as they had originally planned. The outdoor ceremony took place at their home with friends and family in attendance, socially distanced, and with many more friends and family watching on Facebook Live. Olivia and Carolyn served as flower girls, the Tildons’ neighbor was the DJ, a friend was the officiant, and mother-of-the-bride Nellie catered a delicious meal for the guests.

“We call her Saint Nellie,” Ginger says of her steadfast supporter. “She’s always been my best friend and is my sole source for everything, even before I had kids and a husband. She supports me and cheers me on no matter what. All my life I have done whatever I could to make her proud and, in the end, I usually enjoy what I am doing. My mom drove a school bus for 36 years and my dad was a master machinist at Domino Sugar for 36 years. They are enjoying retirement and they are happy.

“I don’t know what happened, but I know I didn’t die, because I feel like someone would have told me,” Ginger jokes. “All I know is a vein ruptured in my head, it stopped bleeding, I got a shunt, and now I am fine, or mostly fine. My doctor told me he was going to request my records from the two hospitals, and he was shocked that there was no follow-up.” Turns out there was supposed to be a follow-up in May, but a nurse forgot to send Ginger the paperwork. So, when she reached out to the hospital in July, she got an appointment for August and the doctor reassured her that this should not happen again and that she can live a long, happy life. “And again, that was it!”

Despite the good care she received in the hospital over the two weeks of her stay, Ginger does feel that her follow-up could have been better managed. With the help of her primary care physician, she plans to see a neurologist annually to get a scan and to confirm that the shunt is in its proper place.

“Resilience is something I have learned from this,” Ginger reflects. “You think that if something happens to your brain, you’ll die or have serious, lasting effects, and then you have this monumental, life-changing thing that happens to you and your brain is bleeding. Then seven months later, you’re the acting president of your company and mentally able to jump in and pick up the pieces. I just assumed there were going to be all these terrible things wrong in my head after this, but here we are, just chugging along!”

*Ellen Fortini is a globetrotting writer, editor, and public relations professional. She currently resides in Las Vegas, Nevada.

ABOUT BRAIN INJURY ALLIANCE OF ARIZONA

The Brain Injury Alliance of Arizona (BIAAZ) is the only statewide nonprofit organization dedicated to improving the lives of adults and children with all types of brain injuries through prevention, advocacy, awareness and education. BIAAZ also houses the Arizona Brain Health Resource Center, a collection of educational information and neuro-specific resources for brain injury survivors, caregivers, family members and professionals.

What began in 1983 as a grassroots effort has grown into a strong statewide presence, providing valuable life-long resources and community support for individuals with all types of brain trauma at no charge.

The Brain Injury Alliance of Arizona:

  • Works with Congressional Brain Injury Task Force
  • Houses Arizona Brain Health Resource Center
  • Hosts Statewide Opioid Use Disorder & Cognitive Impairment Workgroup
  • Has Statewide Opioid Use Disorder & Cognitive Impairment Response team with peer support, training, and family wraparound services
  • Facilitates Brain Health Advisory Council
  • Manages statewide Neuro Info-Line: 888-500-9165

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