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- AVMsurgeon@bwh.harvard.edu
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Every patient’s story is unique, but they all share one thing in common: the hope and healing found through expert AVM surgery and compassionate care. These testimonials highlight real experiences, showcasing the journey from diagnosis to recovery.
Nicole Haight (pictured above with her family) is a patient of Dr. Nirav Patel, MD, Director of the Arteriovenous Malformation (AVM) program. Most importantly, Nicole is a mother, wife, and daughter whose life changed when diagnosed with an Arteriovenous Malformation (AVM). Nicole was told by several physicians that her condition was inoperable and that she needed radiation, offering a 40% chance of even touching the AVM before damaging bad tissue. After finally finding a doctor to operate, Nicole had a stroke which delayed her operation. She was sent home where her craniotomy procedure was rescheduled five times. At this point Nicole states that she “felt defeated” and couldn’t find much hope. She got her life insurance ready, her will, and wrote notes to her kids for all their big days. After years of searching for answers and seven doctors later, she found Dr. Patel.
After hearing about Brigham Women’s Hospital and Dr. Patel from a client at her job, Nicole had a call with Dr. Patel where he told her that her AVM was operable and that he could start treatment right away. Nicole describes Dr. Patel as a confident, and “different” kind of doctor that works with his patients and knew what was best for her. That following weekend Nicole and her mother drove 16 hours to Boston, MA. Shortly after arriving, she was admitted to BWH with symptoms of a bad headache and vomiting of blood. Nicole didn’t remember much until after she woke up from surgery.
Today, Nicole feels much better. She is taking her kids on vacations and using her time more wisely. “I owe everything to Patel and his team,” she stated, as she thought that her life was going to end before she met Dr. Patel. Nicole claims that this experience and diagnosis of an AVM was a blessing in disguise as, “you never think that something can happen to you”. She is now more health conscious because this experience opened her eyes to the fact that “you truly have one life, and it can end any second”. Nicole’s biggest advice to others is to not put your life into numbers, and advocate for yourself no matter how hard it is.
In the face of an ominous diagnosis and a prognosis of just six months to live, Cam Beaulieu refused to yield to despair. Diagnosed with glioblastoma in 2019, Cam confronted the daunting reality of mortality with unwavering determination. Today, five years post-operation, Cam stands as a testament to resilience, defying the odds, and embracing life with renewed vigor. In this patient feature, Cam shares his extraordinary journey from the brink of mortality to a life filled with love, hope, and the promise of a growing family alongside his fiancée.
Cam Beaulieu is a 28-year-old father to a beautiful 3-and-a-half-year-old girl, with another on the way in July! He had been a baseball player his entire life and even got to play for two years in college before deciding to hang up his cleats. He loves to work, especially with his hands which guided him to leave his office job and become a plumber. He recently moved to Exeter, New Hampshire from Newburyport, Massachusetts with his fiancée.
In August 2019, at the age of 23, Cam began to encounter mild neurological symptoms, including difficulty swallowing, coordination issues, and slightly elevated blood pressure. As these symptoms manifested, he became aware of a suspicious mass on his head, prompting him to undergo a head CT scan for further investigation. “I was transferred from Lowell General Hospital to Beth Israel in Boston where I was initially diagnosed, after some further testing with venous varix in the pons of my brainstem.” In the ensuing months, Cam’s condition deteriorated steadily. He experienced paralysis on the right side of his body, along with the onset of a neurogenic bladder, necessitating intermittent catheterization. His ability to swallow deteriorated, leading to the eventual necessity of a peg tube for nutrition. Moreover, he found himself unable to verbally communicate effectively, restricted to mere mumbled words. On October 31st, Cam received the diagnosis of glioblastoma, further compounding his challenges.
“The doctor recommended no treatment,” Cam said. “They provided a prognosis of less than 6 months to live and recommended a hospice service at home.” His now fiancée began the search for other doctors and care teams to get a second opinion. “We spoke with doctors ranging from Pennsylvania, New York, and Germany, all who provided a similar prognosis, based on the scans and medical notes we were able to provide.” They managed to swiftly secure an appointment with a few neurosurgeons in Boston, including Dr. Nirav Patel, to address Cam’s urgent medical needs. “Our appointment with him [Dr. Patel] was the first experience in months where we did not leave feeling completely hopeless,” Cam shared. “This was the first experience with a doctor that had felt genuine and like he truly cared and had sympathy for our situation.” Shortly after their consultation with Dr. Patel, surgery was promptly scheduled for Cam. Although gripped with fear, Cam recognized the imperative need for action; he couldn’t endure his current circumstances any longer.
After surgery he was transferred to the ICU. “Almost immediately, I could speak clearly — it was the first time anyone could understand what I was saying in over a month,” Cam said. His urological symptoms also disappeared. “The care I received from the nurses and other medical staff while at Brigham is something I will never forget and think about regularly, they truly cared”, Cam reflects. After a few days he was transferred to Spaulding rehab where he continued to learn and regain what he had lost.
Following a month of intensive inpatient rehabilitation, Cam achieved significant milestones in his recovery. He regained the ability to consume a regular diet, leading to the removal of his feeding tube. Additionally, he achieved the remarkable feat of walking independently, free from the need for assistive devices. With these milestones achieved, Cam was discharged to continue his rehabilitation journey at home, supported by outpatient therapy. “I have since finished with my outpatient services and am back to working full time. I am able to be a partner and father with minimal residual effects,” he said.
Cam expresses nothing but admiration and gratitude for Dr. Patel and his dedicated team for their exceptional care and handling of his case. “When I met Dr. Patel for the first time, I knew there was something different about him then any of the doctors we had spoken to or met with,” Cam explained. “That’s saying a whole lot due to the fact that I was glued to a wheelchair and couldn’t speak one word if I wanted to. There’s not a day that goes by where he doesn’t pop into my head, I will be forever grateful for him and he has changed the way I look at life and how I treat my body.”
When asked for advice for those facing similar challenges, Cam shares his wisdom: “I know it sounds cliche, but don’t give up. Don’t give up on yourself, on your family and your team around you. This was the scariest situation I’ve ever found myself in, but I knew in one way or another this was going to get figured out. Maybe it does not work out in the time frame you’d like it to, but that does not mean you should go and call it quits because that’s when you will find yourself in a deeper situation; you’ll start to get a lot of self-doubt and that can take a huge toll on your mind and physical health. Don’t give in.”
Five years post-operation, Cam’s journey stands as a testament to the power of resilience and determination. Celebrating milestones alongside his fiancée, they eagerly anticipate the arrival of their baby in July, while also marking the purchase of a new home. Through it all, Cam’s unwavering spirit and gratitude for each day serve as an inspiration to all who encounter adversity. With resilience as his compass, Cam continues to navigate life’s challenges with grace and optimism, proving that even in the face of adversity, there is always hope for a brighter tomorrow.
Joshua Banner, a 23-year-old student at the University of North Carolina, Chapel Hill, embarked on a remarkable journey of self-discovery and healing. Amidst the challenges of navigating a diagnosis of an Arteriovenous Malformation (AVM) in the Right Occipital Lobe of his brain (bordering on visual cortex), Josh’s path intersected with that of Dr. Nirav Patel, a beacon of hope and expertise in the field of neurosurgery. Through candid reflections and heartfelt accounts, Joshua and his mother, Amanda, invite us into their world, sharing the highs and lows of their transformative journey.
From the initial uncertainty and fear to the decisive moments of hope and determination, their story resonates with the universal themes of perseverance and the power of human connection.
Follow Joshua on his journey from diagnosis to finding treatment, undergoing surgery, and healing.
Joshua first experienced health issues when COVID-19 struck during his freshman year of college. Initially attributing his symptoms to anxiety, he later discovered he was actually suffering from partial seizures. These episodes manifested as loss of motor function, elevated heart rate, speech difficulties, and partial loss of vision. Joshua said, “I was mad at myself and was a tough self-critic because I struggled a lot in school. My grades declined as the health condition worsened and I judged myself immensely for that. My life was so amazing: I was at a great school, had great friends, a loving girlfriend, and I was the vice president of my fraternity — I had a fantastic base of support around me — the pieces of the puzzle didn’t fit together, why was I struggling so much? There was something that needed to come to light.”
Joshua remained unaware of the underlying disease damaging his health, but he couldn’t ignore the worsening symptoms. In October 2022, Joshua was driving when he began experiencing strange sensations — later identified as signs of a seizure — just 30 minutes into his 2.5 hour trip. Losing consciousness behind the wheel, he veered into oncoming traffic then crashed into a tree. Miraculously, he emerged with only a minor concussion, yet subsequent CT scans revealed nothing unusual.
Labor Day weekend of 2023 marked a turning point in Joshua’s life when he suffered a Grand Mal seizure. Regaining consciousness in the ambulance en route to the hospital, he had no recollection of the events that transpired. Despite undergoing a second CT scan that showed normal results, the ordeal left him bewildered.
Amanda, Joshua’s mother, and a physician herself, reveals that aside from the Grand Mal seizure, none of his other symptomatic episodes were witnessed. Fainting episodes, attributed to vasovagal incidents, were not uncommon in the family and Josh had experienced them since childhood. However, following the Grand Mal seizure, Josh’s parents decided it was best for him to return home to Philadelphia in order to pursue a more comprehensive medical work up.
Amanda recounted her emotional journey upon receiving her son’s diagnosis. Initially grappling with the news of his seizure disorder, she found it difficult to come to terms with the situation. However, within a mere 48 hours of learning that, all along, Joshua’s “episodes” were seizures, their understanding took a drastic turn. Just two days after being home, an MRI revealed an AVM and evidence of a brain hemorrhage, a revelation that added complexity and urgency to their search for effective treatment. They were no longer looking at a seizure condition, but the diagnosis of a cerebrovascular disease.
Blessed with parents who are physicians, Joshua had access to a wealth of connections in the medical field. Most of them advised against a surgical approach and recommended that Joshua undergo radiation therapy. A few of the doctors were willing to perform open surgery to remove his AVM, but could not assure Joshua that he wouldn’t lose up to half his vision. A neuro-ophthalmologist advised Joshua that if that occurred, he would not be able to drive and could have significant difficulty reading and navigating through space for the rest of his life. As a 23-year-old college student, the prospect of such a loss was daunting. Unable to drive, read, or engage in many typical activities, Joshua faced the possibility of profound limitations that would greatly impact his daily life.
The initial advice that Joshua received from several doctors was disheartening. Driven by a conversation with his cousin, however, Joshua found inspiration to persevere: “It gave me the strength and courage to think maybe I shouldn’t listen to the first doctor or even the first few doctors or options. Why not see if there are other things out there that can help me more.” As an economics major with a background in data science, he approached most decisions analytically, recognizing the potential risks and benefits. Despite the logical appeal of less invasive options, such as radiation therapy, Joshua held onto the belief that there was a surgeon out there who could offer him the help he needed.
“The journey we went on to find Dr. Patel included seeing 11 other doctors” says Joshua. On their first meeting, Dr. Patel explained that the special surgical technique would allow him to resect Joshua’s AVM without damaging any healthy brain tissue and therefore preserve his vision.
Joshua expressed unwavering confidence in his decision to choose Dr. Patel for his surgery. Driven by Dr. Patel’s meticulous attention to detail and his ability to address all concerns raised by Joshua and his family, Joshua felt reassured. Reflecting on his initial skepticism, Joshua acknowledged that Dr. Patel’s exceptional qualities surpassed mere competence. Beyond his analytical prowess and effective communication, Dr. Patel also established a genuine emotional connection, earning his trust on a personal level. Joshua says, “It felt like Dr. Patel genuinely cared about me holistically as a person — he wanted to get to know me and wasn’t taking anything lightly by joking around and having social time, but he wanted to make me feel comfortable. On top of that, he was the only doctor that gave me every possible reason to believe that surgery would go the way I wanted it to go.”
Joshua believed that any alternative would pale in comparison, Dr. Patel was a “needle in a haystack in the field of neurosurgery.” Following their initial meeting, Joshua was unequivocal in his conviction: “That’s my guy, no one else even came close.” Amanda recounted that Joshua’s clarity and courage arrived before the rest of the family. They were anxious to have Joshua undergo an approach that no other surgeons were using. Joshua vividly recalls the “magical moment” after their third meeting when his whole family unanimously agreed that Dr. Patel was the ideal surgeon for his case. The collective relief and positivity that permeated the room affirmed their decision. Amanda gives her son credit for coming to his conclusion early on: Dr. Patel’s unique method wasn’t a reason to be scared, but rather the opposite, it was precisely the reason to choose him.
Following their decision, Joshua and his family encountered very few roadblocks. Within two weeks, they had a surgery booked and began preparations to temporarily relocate to Boston. They were fortunate to receive assistance from a nonprofit called Hospitality Home which provided housing for individuals requiring an extended stay in a different location after surgery. This support helped alleviate some of the logistical challenges associated with their upcoming journey.
On the day of surgery Joshua felt “very at peace.” As he waited, he engaged in deep introspection, contemplating the impact of his existence and envisioning a future world without him. Watching the movie It’s a Wonderful Life provided him with solace and a renewed sense of purpose. Joshua says, “After grappling with the purpose of life and why I feel like I am on the earth — my meaning, what I can provide to people, and what I can add to society — how I could heal the world really speak true to me.” He continues, “It’s also something I think Dr. Patel really feels the same way about. We talked about his experience with the Peace Corps, and his mission, explaining the dedication to his work, and it was really something that I took to heart. In a lot of ways, it brought me through the process of that morning thinking, and relying back on those things made me feel at peace.”
The day after surgery Josh was fully alert, sitting in a chair and had the same visual function that he came in with. Amanda, expressed, “Without trying to sound melodramatic, we felt like we were part of a miracle that only Dr. Patel could have provided. Not only in terms of his technical skill but his humanitarian connection with us and with the world.” Joshua says his experience at Brigham was characterized by the exceptional care and warmth shown by every individual he encountered, contributing to an overall positive and memorable experience. “Every single person I met at Brigham, from the receptionist to the different nurses, to people reading labs, even the other patients — every single experience was incredible,” Joshua enthused.
As we sat down with Joshua two months post-operation, eagerly anticipating his return to school in six months, we asked him what advice he has for patients who find themselves in similar situations. Joshua reflected on his journey and shared, “There is always a solution to a problem. Just keep going and keep looking until you find something that will really help you.” His words encapsulated the essence of perseverance and determination in the face of adversity, reminding others to remain steadfast in their pursuit of solutions and to take action even when it feels challenging. Additionally, Joshua says, “Allow all your emotions to come out. It’s important to lean on others for strengths you don’t have.”
When asked about her advice to caregivers in a similar situation, Amanda highlighted the importance of setting clear roles and creating a dynamic that works for your family’s unique circumstances. Joshua and Amanda emphasized the importance of entering appointments ready with questions and research. They shared that ultimately, being prepared and knowing the type of care they were seeking helped them find their perfect match, and they couldn’t be happier.
Two months after surgery, Joshua is flourishing and eagerly anticipating his return to North Carolina for his final semester of college. He is working as a Project Manager Intern at Centene Corporation, and is exploring his creative outlets by writing a newsletter on LinkedIn, playing music, and working on sports data science projects. Josh’s future looks exceptionally bright, a testament to his determination and perseverance that led him to Dr. Patel, and a permanent cure for his dangerous and scary neurological and cerebrovascular disease.
This patient feature recounts the captivating journey of Sean Manning (pictured 6 years after his surgery), a resilient survivor of an arteriovenous malformation (AVM) rupture, chronicling his journey from the onset of the rupture to his extraordinary recovery and eventual career trajectory. Drawing from an insightful interview, Sean generously shares the intricacies of his experience, ranging from the emergence of initial symptoms, the pivotal diagnosis, the ensuing treatment, and the triumphant recovery journey. Throughout his narrative, Sean’s unwavering trust in his medical caregivers, coupled with his optimistic perspective and unyielding resilience, shines brightly, serving as a beacon of inspiration and counsel for those navigating similar adversities.
At 22 years old, Sean was on spring break during the final stretch of pursuing a master’s degree in accounting. Amidst his break, dedicated as ever, he delved into preparation for his third CPA exam. Having successfully navigated all his midterms and conquered his second CPA exam just the week before, Sean’s determination was unwavering. However, fate took an unexpected turn one Friday while he was at the gym.
“I came up from my ninth squat, 135lbs on my shoulders and it just burst,” Sean recalled. It felt as though a water balloon had burst inside his head, a sensation unfamiliar to him. Despite the initial oddity, Sean pressed on, only to find himself losing control over the left side of his body as he made his way across the gym floor. “I started tripping over my left foot and then my left hand went numb and I couldn’t move it,” he recounted.
Reaching a bench, Sean’s last clear memory was of someone dialing 9-1-1 as he struggled to comprehend the unfolding events. Soon after, his consciousness faded, and he slipped into a coma. “I have one coma memory,” Sean shared, “It felt like my dad was yelling at me, but he was, I’m sure, saying in an even toned voice, ‘squeeze my hand with your right hand Seanie’.”
In a marathon 10-hour surgery, Dr. Du’s expertise was pivotal in saving Sean Manning’s life during his stroke. Through meticulous procedures including a craniotomy, AVM resection, and precise vessel clipping, Dr. Du navigated the complexities of Sean’s condition with skill and precision. Sean is forever grateful for her remarkable talent and commitment to his well-being.
Upon regaining consciousness, Sean was met with confusion and fear, questioning his surroundings and the sudden loss of mobility in his left side. Yet, with his family by his side, particularly his mother sitting with him in his hospital bed, Sean found solace amidst the uncertainty.
At Brigham and Women’s Hospital, Sean had to wait three weeks until the swelling in his brain subsided enough for Dr. Du to perform a critical cranioplasty. Following his surgery, Sean embarked on an intensive eight-week inpatient rehabilitation program at Spaulding in Charlestown where he relearned how to walk and regained basic motor skills in his left arm and hand.
Throughout his recovery journey, Sean credits the skill and care of Dr. Du, whose expertise not only facilitated his physical rehabilitation but also inspired him to pursue his academic goals. Sean, while in outpatient rehab completed his master’s program, despite the challenges. “I was super lucky though, I am sure this had to do with Dr. Du’s talent,” Sean reflected, “I am sure partly, if not all, was due to Dr. Du’s skills in my brain”.
Reflecting on his experience, Sean offers invaluable advice to others facing similar challenges: trust in medical professionals and diligently adhere to their recommendations. He acknowledges the fear associated with surgery but emphasizes the transformative outcomes that can result from placing faith in the expertise of doctors. “To the people who know they have an AVM, just do everything the doctors tell you to do. Like absolutely everything,” he advised. When asked what advice Sean had for patients who may be afraid he explained “I have had seven brain surgeries and yes, they are scary but I’ve come out the other side of all seven better than I went in”.
Seven years post-stroke, Sean has found fulfillment in an unexpected career path as a Career Coach at Genius Within, a UK-based company dedicated to neurodivergent awareness and empowerment. Despite the physical limitations imposed by his stroke, Sean’s journey epitomizes resilience and post-traumatic growth, serving as an inspiration to others. When asked what some of his hobbies are, Sean responded, “So well, I can’t run but that’s okay because running sucks.” He is a self-proclaimed “TV fanatic” and suggests to everyone reading that they should watch season one of “True Detective” with Matthew McConaughey.
Lastly, Sean shared the story behind his tattoo (pictured), which serves as a constant reminder of his resilience and inner strength. The tattoo, a simple “S” inked on his wrist, symbolizes his belief in himself as a superhero [Superman], capable of overcoming any obstacle. It serves as a powerful reminder not only to Sean but also to those around him facing similar challenges, that they possess a strength within themselves akin to that of a superhero.
Jenn Murff is a wife, mom of 4 daughters, and the leader of a Christian ministries’ organization out of the greater middle east. Just over a year ago, she was speaking at a conference in Sweden when she got called up on stage to be recognized as one of the top future female leaders for ministry in the Middle East. As she walked off stage, she developed the worst headache she’d ever felt; however, she attributed it to adrenaline and carried on with her trip.
Upon returning home with a worsening headache, Jenn’s husband and mother-in-law rushed her to the emergency room. After many tests and scans, Jenn was diagnosed with a grade-5 arteriovenous malformation (AVM). Jenn immediately began seeking out the best care she could find. She met with numerous specialists at the top medical institutions in the country, almost all of them telling her that they anticipated a rupture but that her AVM was too large and complex to operate on. Jenn recalls her fear saying, “The thought of an imminent fatal rupture made me feel like I was wearing a bomb strapped to my head that could go off at any moment.” Despite receiving discouraging news time and time again, Jenn was determined to heal her brain: “My brain has always been the hallmark of my success…I’m a PhD, I communicate and use cognitive skills every day in my job. So, it was very scary to trust anyone with the very thing that I value on a human level the most: my intellect.”
After almost two months of searching, Jenn came across Nicole Haight’s story on NBC Nightly News through the Brigham and Women’s Patient Features. Nicole, an AVM patient, had been operated on and saved by Dr. Nirav Patel, director of the Brain AVM Program at Brigham and Women’s Hospital. Finding out that Nicole too was a wife and mother who was told by countless specialists that her AVM was inoperable, Jenn decided to reach out to her. Jenn and Nicole talked, and hearing that Nicole was healed and back to her former life, Jenn decided to reach out to Dr. Patel.
Jenn remembers the reassuring confidence of Dr. Patel saying he “immediately started connecting dots and making things happen. He and his team were completely open-handed.” Additionally, Dr. Patel understood why she wanted to take the risk of surgery and fight to get better, she said, “When I met with other institutions, number one, they didn’t have full confidence that they could do it. Number two, the other institutions that did say they would treat me never actually set up a time to connect with me as a person. Dr. Patel took a tremendous amount of time to have conversations to get to know me. I didn’t feel like just another a patient. I still remember he said, ‘I’m going to treat you because you are resilient, and I think you’re a fighter. There are things you want to live for.’” On August 8th, 2022, Jenn underwent her first surgery with Dr. Patel. Jenn’s AVM was complex, leading to a series of complicated surgeries in order to completely treat it. After 10 surgeries and many hours of physical therapy to re-learn to walk and talk, Jenn was healed.
Jenn and her husband with Dr. Patel and her care team after her hydrocephalus shunt surgery.
When reflecting on her journey, Jenn wanted to express to other patients that it is ok if your healing journey doesn’t feel easy, in fact, it is okay if it’s “really, really hard.” But, more importantly, she wanted to emphasize that from where she stands now “it’s a journey she’d take a million times over.” When asked what helped her throughout her journey, Jenn highlighted the importance of having a strong support system saying, “The healing journey was difficult. And I hate to even say that because I want to say it was easy. But with the help of supportive and medical professionals who were there and present, I was okay. It’s very important that any patient has a good support system around them, whether its family or friends. I was lucky to have such a wonderful support system around me. My husband never left my side.”
Additionally, she stated the importance of Dr. Patel’s focus on “healing” rather than merely “treatment” saying, “What I love about Dr. Patel is that he told me, ‘Jenn, your physical healing is just the start.’ He let me know that there were things we were going to have challenges with both physically and mentally, but that we were going to fight to overcome them. He opened up doors to make sure I had all the care that I needed.”
Lastly, Jenn wanted to give some advice to others who may find themselves in a similar position. First, she said, “Do your due diligence. Make sure you seek out the best of the best. Now I believe that the best of the best is Brigham and Women’s… Dr. Patel is the best surgeon in the world to have been able to treat my AVM!” For her second piece of advice, she shared, “Today, I talk with many other AVM patients prior to their surgeries, and I find that fear grips their hearts. I talk to patients that could be completely healed, but the thought of going into surgery paralyzes them. And so, I want them all to know that getting this surgery was the best decision that I have ever made. What do you have to be afraid of? Being cured will give you freedom! You’ve been bound to this disease and this fear, and now you get to be free. You don’t have anything to lose, just everything to gain.”
As we talked with Jenn in November of 2023, just 8 months after her final surgery, she has returned to working full time, being a full-time mom, and is heading on a three-week trip to Europe with her family – “a trip to mark the end of a tough chapter!” When signing off, Jenn added, “You guys truly changed my life. I’m able to do everything I did before. Brigham and Women’s team is by far the most loving, caring, and genuine team.”
Jenn hiking the Swiss Alps post-operation!
One night, Talia woke up to feed her 10-week-old daughter, only to find that the entire left side of her body was numb. When the numbness didn’t subside, she and her husband, Ryan, decided she should go to the emergency room. But being young, healthy, and busy parents-of-two, they weren’t too concerned and tried to maintain a typical day. Ryan dropped her off at their local emergency room so that he could bring their son to school and drop their daughter off with Talia’s mom. Although Talia was able to walk herself into the ER, it became clear that this may be more serious that she had thought. By the time Ryan got back to the hospital from dropping off the kids, Talia was told that she had a brain bleed.
Talia was then transferred to a different state hospital. They ran many tests; however, they couldn’t find a reason as to what caused the bleeding. Feeling unsettled without answers, Talia and Ryan sought out a second opinion. They saw a Brigham neurologist, Dr. Roy, who then referred them to Dr. Nirav Patel.
Talia describes meeting Dr. Patel as “a blessing.” She said, “Our first appointment he deep dove into everything, explaining things that were never explained like why I was never numb on my face or my arm because of the way in which the bleed happened. He made us feel very
comfortable in the way he approached what was going on. It’s the brain, it’s so complicated. But leaving the meeting, we felt like… we were experts on what was going on.” Although they would still need an angiogram to confirm, Talia remembers Dr. Patel saying, “I have a strong feeling about what this is and we’re going to fix it and we’re going to get you on with your life.”
The angiogram confirmed that Dr. Patel was right. Talia had been born with an Arteriovenous Malformation (AVM); however, she never knew about it because it had never caused any symptoms until then. Talia said Dr. Patel pulled out images and showed her exactly what his plan was. She emphasized the value in these conversations with Dr. Patel saying, “I think as I’ve been processing things, what I realized is that it was so comforting that Dr. Patel and his team humanized everything. That was really important. Because things move fast, there’s a lot of information and steps that need to be taken. The team was just world class.”
On Tuesday, February 21st, Dr. Patel performed a successful surgery on Talia. She looked back on her speedy recovery saying, “I think also as a mom, you power through. I had surgery, I spent a day in the ICU, then I walked myself down to the Neuro floor,” she laughed, “I was discharged on Thursday, and I was sledding with my son by Friday. Which is not advised… I promise it was a very small hill! But my point being, my experience at Brigham was pretty amazing.”
Today, Talia says she is feeling “great.” She is back to working full time as a strategist for an advertising agency and is kept busy with her now 2.5-year-old and one-year-old. She feels called to share her story and to bring more awareness to AVMs. She hopes that she can provide hope and comfort to others that may get a scary or unexpected diagnosis.
In sharing her story, Talia passed along a few pieces of advice from her experience. First, she said, “Ask a lot of questions and advocate for yourself. If you don’t feel like you have the answers you need, don’t be afraid to seek a second, third, fourth, or as many opinions as you need to find someone you trust.” Lastly, Talia emphasized the importance of prioritizing your emotional well-being throughout the process. She said it is crucial to have a support system – whether it be family, friends, or a medical team — that will be there for you. Additionally, she said, “Make sure you feel the feelings. I remember many times at the end of it, I would just start crying and Dr. Patel would say ‘Talia, if you’re not crying in front of me than we may a bigger problem here. This is heavy stuff, big stuff, real stuff. Let’s feel all those emotions so you can heal.’” She said she is infinitely grateful that Dr. Patel not only ensured that she was healed surgically, but also emotionally so that she could return to her family, friends, work, and life.
Although Luting Qiu doesn’t have many memories from the days surrounding her ruptured AVM, she does recall how lucky and touched she felt to have received great care by Dr. Patel and his team. Recently, we met with Luting to hear about her experience with an AVM and learn more about her life since she left Brigham and Women’s Hospital.
One night in September 2021, mother and former lawyer, Luting Qiu started having a bad headache. Throughout the night, her symptoms worsened. Her head pain became unbearable, and she began incessantly vomiting. By morning, Luting was in an ambulance headed to her local Mass General Brigham Hospital, Newton-Wellesley. Upon arriving at the hospital, it became clear that this was a more serious issue and that she would need to be transported to Brigham and Women’s Hospital in Boston. “When I needed surgery, we were so close to one of the best hospitals and some of the best doctors in the world. That may be the luckiest thing I’ve had happen in my life,” said Luting.
Luting recalls meeting Dr. Patel shortly after arriving at Brigham and Women’s. Luting was told that she had an Arteriovenous Malformation (AVM) – a tangle of blood vessels that interrupt blood flow and oxygen circulation in the brain – that caused vessels in her brain to rupture. He explained everything to her and her husband about her current situation, pulling up images of the vessels stuck together and showing them how he would repair it. Luting and her husband weren’t familiar with AVMs prior to her diagnosis, but it was clear that with time ticking, there wasn’t time for researching other options. She says she is so grateful that Dr. Patel was both “professional and confident,” as it allowed her and her husband to feel more comfort in a time where they had limited knowledge and control. Dr. Patel performed a successful Biparietal Craniotomy for Ruptured AVM.
Looking back on her experience, Luting says, “I was not lucky to have an AVM in my brain, but I feel that I am the luckiest person that I had Dr. Patel and his team and that everything went so well.” Today, she feels that “everything is great and back to normal” as she is back to a busy life, helping her son with many everyday activities like tennis, piano, violin, math, swimming, and homework. She hopes that with her story, others can be encouraged that the surgery is worth it and that she is proof that you will be able to return to your former lifestyle.
Most importantly, Luting wanted to express how moved she was by her experience. First, she was grateful for Dr. Patel’s skills saying, “He is experienced. He is truly the expert in this area. I feel so lucky to have been seen by him. I remember at that time, I thought… what if I didn’t have Dr. Patel and I had a different doctor that may have done something wrong. I may have been alive but maybe lying in a bed forever. That would have been a disaster for my family. I am so lucky that I had the right team and doctor.” Next, she commended his positivity and humbleness. She recalls right after surgery when she felt concern about not having much memory of any of her time in the hospital. Dr. Patel reassured her saying, “It’s ok. You don’t need to remember the bad memories. Now you only have to focus on the good memories going forward.” Additionally, she recalls that each time she thanked Dr. Patel, his immediate response was to make sure she knew it was the whole team and that they all worked closely together to make this successful. She was inspired by the support and help from the entire team of doctors, nurses, and staff.
Luting left off with sharing a few pieces of advice for others who may find themselves in her position: “Listen and trust your doctors. The surgery is totally worth it in my opinion. Life is so important. Go for the operation.”
Have you undergone AVM treatment with Dr. Patel and his team? Sharing your experience can offer hope to others facing similar challenges. Your journey could be the encouragement someone else needs.
