“Hope is the thing with feathers”, is a campaign dedicated to tell the stories of a battle well-fought, the challenges of an uphill recovery or even the bitter sweet saga of going down swinging. This the chronicling of the experiences of the patient, their family and/or friends to remind us to keep hope and reinforce our resilience.
The goal is not to heroize (yes that is a word) or glorify the Neurointerventionalists but rather to acknowledge daily struggle of the patients or their loved ones.
Debra Born: Swift recovery – thanks to a swift response
Debra Born, 25, awakened feeling off about 4 a.m. on Aug. 6, 2019. The new college graduate was nauseous and extremely dizzy. “I thought I was just exhausted and figured that was why I could not move. I kept trying to say that I was fine, but I had a hard time talking.”
Her father, Frank Born, says it’s fortunate she couldn’t speak. “She was trying to tell us, ‘I’m OK. Just let me sleep.’ And we might have.”
Instead, he dialed 911.
An ambulance brought Debra Born to the hospital closest to her home in Rome, New York. The physician in the emergency department of Rome Memorial Hospital, via a teleconference with stroke specialists at Upstate University Hospital, arranged for a helicopter to fly Born to Upstate in nearby Syracuse.
She had a blood clot in her brain that was swiftly removed by Hesham Masoud, MD, an interventional neurologist with specialization in vascular neurology and endovascular surgical neuroradiology. Eighty percent of strokes are caused by clots, when an artery that feeds the brain becomes blocked. The other main type of stroke happens when a vessel bursts and bleeds. The treatment options are different for each type of stroke, and care is tailored to each patient based on the size and location of the clot or bleed, and the patient’s condition and medical history.
Masoud explains that Born’s stroke developed from an arterial dissection, a small tear in the lining of an artery at the base of her neck. This likely happened when the artery rubbed against her vertebrae, perhaps when she lifted something heavy or twisted in a certain way during physical activity. A clot developed, which caused an ischemic stroke when it obstructed blood flow to the brain.
The clot retrieval is performed in an operating suite, using micro catheters (tubes) and X-ray guidance. Born was feeling back to normal within hours of the procedure. When Masoud came to her bedside, she remembers, “he was thrilled to see how well I was doing.”
She was hospitalized overnight and able to go home the next day, with no lingering deficits from her stroke. Born says she appreciates the prayers of loved ones. “The skill of Dr. Masoud and my whole stroke team was impressive, and I am grateful to them for doing their best to ensure that I walked away alive and well.”
September 23rd, 2019, I was at the beginning of my 27th year of being a music teacher. I had been in Nogales, Arizona for 26 years and taught multiple bands including marching bands of close to 200, jazz bands, concert bands, symphonic bands, and mariachis all at the middle school level. I was now moved to Tucson and working in the Marana School District. I loved my job completely. There is nothing elseI would rather do in life.
The four years before this I had been walking daily, sometimes twice daily, and was in the best shape I had been in since I was in high school. On September 21st and 22nd I had a dull headache. I felt like it was allergy related and didn’t think to be alarmed by it. On the 21st I had hiked Tumamoc Hill in Tucson and on the 22nd I had hiked Picacho Peak, even with the dull headache.
On the 23rd, I taught the entire workday. After I got home I didn’t feel like doing my daily walk, so I went to bed early. About an hour after I laid down I felt a shooting pain through my head, one like I had never felt before. I knew this wasn’t normal so I yelled out to my son’s girlfriend, who was the only one in the house at the time, to call 911. I had never felt pain like that before and surely thought I was going to die.
The details that follow this become a little bit foggy as I went in and out of consciousness. I remember the EMTs checking my vitals and they did not find anything alarming, so they were trying to convince me to get driven to the hospital instead of taking the ambulance. I told my son’s girlfriend to not tell my children, because I didn’t want to worry them, thinking it wasn’t a serious situation. Once I got to the hospital I was left in a wheelchair in the waiting room by myself to be seen by a doctor since my vitals were normal. I was by myself for a little under an hour until my two daughters, Ciara and Hailey, arrived. We then sat in the waiting room for about 4 and a half hours. It took over 2 hours to get a CT scan of my brain. My oldest daughter, Ciara, said “I was very upset with the care my mom was receiving and made that very clear to everyone working in the emergency department (ED). I even considered calling an ambulance outside to get her expedited treatment.”
My children told me I had a seizure in the ED while waiting to be seen. Ciara had to bang on the door to the doctor’s area; Hailey had to push my wheelchair in and my son, who is the youngest, Sam, had to hold my feet since I was seizing. They finally got me a room and started working on me. Ciara had a “mental breakdown”, as she describes it, in the hallway when they explained to her what happened. Hailey was the calmest and Sam was walking around with his fists balled up – he’s a big kid, so some people were afraid, but he is a gentle giant. A social worker was assigned to them since they looked so young – but Ciara was 22, Hailey 20, and Sam 17. They finally called my mom who I wanted to avoid calling because she had lost a son in that same hospital 4 years prior. They then took me up to a room in the Neuro-Intensive Care Unit (NICU) and placed the drain in my brain. No one got a wink of sleep that night.
The next thing I remember was waking up a day later with a drain coming out of my head that drained the cerebral fluid (CF) when the pressure in my head grew too high. My head hurt and I was very confused about what had and what would happen. I was informed that I had a brain aneurysm rupture and that they suspected I had been bleeding in the brain since my headache started 2 days prior. They also determined that I had 2 pseudoaneurysms on each internal carotid artery.
I knew that this was a dire situation. The relatives from New Mexico had arrived and were shuffling in and out of my room. I knew that they wouldn’t have shown up unless they thought I wasn’t going to make it. Nobody said “goodbye” but I knew why they were there.
They attempted to perform surgery 4 days later, however, they could not complete it due to vasospasms. Five days later the doctors would try again but were not able to due to the same reasons. The next day, they placed a shunt that redirected the blood/CF from my brain to my abdomen so I would not need an external drain anymore. Three days later, they attempted surgery again and were unsuccessful.
FINALLY, eight days later they were able to perform the surgery successfully. They placed a stent over the aneurysm behind my eye. However, my two pseudoaneurysms blew during surgery which caused strokes. After stabilizing me two more stents were placed over them. I remember waking up to Dr. El-Ghanem sitting on the side of my bed saying that they almost “lost me in there.” He was concerned and I was scared.
Three days later one of my stents moved and I had a stroke. I thought I was reacting to the powerful pain meds because I felt kind of “loopy”. I could not butter my toast that I had ordered for breakfast and when Caroline, the nurse, came in and started talking to me I was unable to verbalize an answer. She immediately called a stroke code and was testing my various body parts. I was unable to move the entire right side of my body. I was asked to say my name and I could not reply at all. The most frustrating part of what was happening was that my brain was very lucid. I understood everything I was being asked to do but could not respond. People seemed to be asking questions louder and slower as if I didn’t understand them, but I did. It felt like they just needed to give me more time to respond to questions but there was no time to waste. I had to get to the surgery room. Stephanie was an amazing nurse, completely dedicated to the complete care of her patients.
Dr. El-Ghanem kept me awake during the surgery. I had pain meds and could hear the tapping of a hammer. He was going in through an artery in my groin and trying to place a longer stent over the one that had clotted. About twenty minutes into the surgery Dr. El-Ghanem asked if I could move my right hand and I COULD! Then a few minutes later he asked if I could speak and I COULD!! I kind of felt as though he was reconnecting me. It was amazing and incredibly SCARY! Afterward, I could talk and move like nothing ever happened.
The next day I had a Transient Ischemic Attack, or “mini-stroke” that was resolved quickly with medication. They were trying to wean me off the IV blood thinner and onto oral medication, but my body resisted it and the medication was proved to be ineffective. Four days later (Oct. 23rd) I had another stroke. Since my body was rejecting the stents placed, my whole left carotid was blocked with clots that they were unable to remove. It was a very somber night. My oldest daughter Ciara was set to graduate from the University of Arizona with a Bachelors of Science in Chemical Engineering that May and she worried that I would not make it to her graduation.
It took them an additional 2 weeks to find the meds that worked with my blood to prevent me from having a stroke. After 50, yes FIFTY, days of being in the ICU, I finally got to go home! During my time in the hospital, I learned a lot about not only strokes and aneurysms but also about myself and my mortality. Life is so very fragile. It can change in an instant.
I got to know the nurses while I lived there. At night Dave was our favorite nurse and we remain in contact with him still. He was funny and a veteran nurse who knew exactly how to deal with me in every scary situation and was also a ton of fun in lighter situations. Ciara and I have visited the nurses in the NICU on the third floor at Banner University Medical Center, taking some sweet treats for them. Caroline, Dave, Jasmine, Taylor, Melissa, Luis, Ryan, Chris, James, Troy, Annabell, Peggy, and countless more on the third floor who took care of me and my family during some of the scariest times we have encountered, they pulled us through.
Through all of this my oldest daughter, Ciara, was able to complete her Bachelor’s degree and I got to celebrate her graduation with her, alive and well. My son, Samuel, who had struggled with his Senior year in high school throughout this trauma, graduated this May as well! Their perseverance and dedication brought them through in their education even faced with the possibility of losing their mother. I am very proud of them!
One of the most memorable times in the hospital was when Dr. El-Ghanam had explained all that had happened, what we needed to do, how we would get me off of the IV, and also what post-hospital appointments I would need. It was all very overwhelming. After all the explanations I had one last question for him “Then what happens?” His answer was unforgettable “You live your life.”
I have been out of the hospital for six months now and just celebrated my forty ninth birthday! I will be returning to teaching music at the end of July. Nobody knows how that will work with Covid-19 and social distancing but I am confident I will meet that challenge with strength! I am grateful for the second chance at life I have been given. I plan on LIVING MY LIFE to the fullest!
Thomas Pope: The Journey to Forge New Memories and Recover Lost Skills
My story begins on Saturday, October 21, 2017, when I suffered a ruptured brain aneurysm of the anterior communicating artery which caused a subarachnoid hemorrhagic stroke. When our local ER detected the bleeding, they immediately contacted Mercy St. Vincent’s Hospital, Toledo, Ohio, and they dispatched a LifeFlight helicopter to transport me there. From what my wife Carolyn has told me, I was not given much chance of survival. When she and our sons Nick and Evan arrived, they saw me lying on a gurney prepared for coil embolization surgery and being given last rites as I was not expected to survive the surgery. Yet, here I am. Dr. Eugene Lin and his surgical team saved my life, but that is not the end of my story. It is merely the beginning. There was my six-week hospitalization with subsequent surgeries and spinal taps. I was finally released shortly after Thanksgiving 2017.
When I returned home, Carolyn asked how I felt mentally and physically. I responded that I felt like a potty-trained toddler. The stroke had nearly caused a complete reset of my brain. I had to relearn everything from basic personal hygiene to the more advanced skills of reading, writing, and mathematics. I was still very weak, underweight, and unbalanced. I would spend the next few months continuing physical and speech therapies. The physical therapy strengthened my underweight body and helped me recover balance so that I would not be a danger to myself as I navigated around our two-story home. I still had some memory issues so Carolyn prepared one of her business cards and she wrote on the back that I had suffered a stroke and that if I was wandering aimlessly that they should call her or 911. It would take many months for me to regain access to all the memories in my brain as I relearned the area in which we live. It may seem somewhat silly, but I had to relearn our city, county and neighboring areas. It took several months to regain access to that information. Carolyn and I spent many days driving around our area so that I could relearn where we lived.
I could not have made the journey back to reality had it not been for Carolyn and so many other people. Brianna Missler was my speech therapist and she pushed me to recover my mental faculties. I am a high school history and math teacher. My friend Brianna helped me recover the abilities I needed to return to my occupation. Carolyn and I also attended Brianna’s stroke group prior to the pandemic. The Margaretta Board of Education and the Margaretta Teachers Association created a sick day bank that I could use while I recovered. I had over a year of sick time, but the seriousness of my stroke caused me to miss over two years of work. The Ladies Auxiliary of Eagles Post 2295, Port Clinton, Ohio, hosted a spaghetti dinner that alleviated many medical bills and various student groups at Margaretta High held similar fundraisers. Carolyn and my family also helped us emotionally and financially.
As you can see, there are so many people that are needed in the recovery of a stroke survivor. In this space, I have only scratched the surface of how many people play an integral role. It takes a complementary effort of the medical, local, and familial communities to help stroke survivors become contributing members again.