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In April 2022, Richard Wayne was diagnosed with Normal Pressure Hydrocephalus (NPH). NPH is a brain disorder in which excess cerebrospinal fluid accumulates in the brain’s ventricles, causing disruptions to everyday functioning. Although skeptical to undergo surgery at first, Dr. Golby and her team made him feel safe and performed a life changing Ventriculoperitoneal Shunt Placement. Richard reached out to share his story in hopes to reach other future patients:
I want to share my personal journey and experience with undergoing surgery for Normal Pressure Hydrocephalus (NPH) in the hopes it may offer valuable insights for those considering a similar path.
Allow me to introduce myself - I am Richard Wayne, a 70-year-old man, who until recently enjoyed a relatively healthy and active lifestyle. Engaging in activities like hiking, traveling, walking my dog, and attending family events were integral parts of my life. However, approximately five years ago, I began noticing troublesome changes in my physical and cognitive abilities.
The simple act of walking became a challenge as I shuffled my feet and I struggled with balance. I fell more than once hampering my confidence. Cognitive issues such as clouded thinking and poor short-term memory compounded my difficulties. I was often confused. A loss of bladder control, particularly upon standing from a seated position, added to my frustration. I exercised five days a week with absolutely no improvement. Following visits to multiple neurologists, I was eventually diagnosed with NPH in April 2022.
The recommended course of action was surgery involving the insertion of a shunt device in my skull. This device was designed to alleviate my symptoms by draining extra cerebrospinal fluid to my abdomen. I was extremely hesitant fearing the surgery would not achieve its goals and perhaps I would be worse.
A turning point came during an overseas family vacation in August 2022. I struggled to keep up while walking (even with the help of a walking stick) and I faced the constant fear of falling. My family was alarmed by my condition and often sat me in a wheelchair. I realized the impact of NPH was rapidly interfering with and deteriorating my quality of life. Upon returning home, I made a decision to proceed with the surgery.
In mid-September 2022, I underwent surgery and the immediate post-surgery results were astounding. My balance was considerably improved, and I could walk without the previous shuffle in my gait. It was evident that my thinking had become clearer. My memory showed a significant improvement, and my bladder control was recovering. The transformation was so profound that both my family and friends were astonished by the overnight changes.
I had a renewed sense of confidence. I now walk my dog without fear of falling. I go to the gym which has shown immediate results; my leg strength continued to improve. By February 2023, I traveled with my wife to Iceland which a few short months ago would have been impossible. Walking on glaciers and exploring ice caves was like a dream, especially considering the five-year ordeal I had been through. The transformation was nothing short of a miracle and I feel a new sense of purpose.
I know everyone’s condition and circumstances are different and results may vary. However, based on my experience, I highly recommend considering surgery as a viable option to alleviate NPH symptoms.
Gavin Davis, a 35-year-old father of two (with one more on the way!) has had quite the year in 2023. In February, he auditioned for a production of Rock of Ages. In March, he was cast as a lead in the show. And in April, he took a life-altering slip, ultimately ending him here at Brigham and Women’s Department of Neurosurgery.
In April 2023, Gavin and his wife went hiking in the Berkshires. When it started to rain, they decided to turn around and head back down the hill. With his wife being pregnant, Gavin decided to go first so that he could help her get down the hill; however, just as he began his descent, his left foot slipped, and he fell backwards. Gavin managed to get up and go home, attributing the intense pain in his neck merely to soreness. With no improvement by the next day, however, Gavin decided to drive himself to the nearest emergency room in hopes to get a muscle relaxer or pain reliever.
Upon arriving at the hospital, Gavin was given a CT scan to check for a fracture. However, after the scan he was told he would need an MRI. When the MRI was completed, he began to worry as the staff now wouldn’t let him walk on his own. The care team informed him that his C2 vertebra (the second vertebrae from the top of the cervical spine) may be fractured and that “there may be something else wrong, but they would need to refer him to another hospital.” Gavin recalls being told, “You’re getting in a helicopter and going to Boston.” Due to inclement weather, they ultimately decided it would be best to take an ambulance immediately instead.
Gavin arrived at Brigham and Women’s hospital where he would undergo five days of CTs, MRIs, and a biopsy. His care team discovered that there was never a fracture, but rather found an aneurysmal bone cyst, a rare, benign lesion in the bone that tends to expand and grow, causing bone deformity, pain, and fracture. Dr. Liu referred him to Dana Farber so they could begin to develop a plan to stop the growth of the cyst.
On August 4th, Gavin was able to perform in the opening night of Rock of Ages: “I can’t believe that 4 months ago I was in the back of an ambulance in a neck brace and now I’m on-stage doing rock and roll music.” When asked how he was feeling today, he said, “I feel so much better. I feel great. I have a path forward with a treatment plan and just received my first infusion today.”
Gavin gave two pieces of advice for those who may find themselves in a situation like his. First, he says, “Just go to the hospital. I waited 24 hours to go to the hospital. Don’t do that especially when it’s your head, your neck, or any major joint. Who knows how long it would’ve been before I found out and what size the cyst would have grown to and limited treatment options.” Second, he says, “When you’re in the hospital, don’t be intimidated. Don’t be afraid to ask what may feel like a dumb question. Be your own advocate, know what’s happening, know your options, and engage in a dialogue. It’s so important to understand your body and know that you’re doing what’s right for you.”
Lastly, Gavin shared a few shout-outs to the department. He said, “The nursing staff on the Neurosurgery floor is unbelievable. Not just in the quality of care that they give, but they would just come in and sit down and talk about how I was feeling, both physically and mentally. Especially after visiting hours, your people aren’t there anymore and its lonely and you’re sort of scared. The care that goes beyond the boxes they have to check to do their job was just incredible. The residents and staff, in a very confusing time, were giving me all the information, they had at every point. They were so reassuring in just hearing me out. The incredible detail coming form the physicians involved was really comforting.”
Gavin Davis performing on stage in Rock of Ages
In March of 1999, Joseph C. Salvo, a 47-year-old computer teacher started to experience many strange symptoms. Over the following couple days, the symptoms became more frequent. Shortly after visiting his primary care provider, an MRI result revealed that Joseph had an orange-sized meningioma tumor in his brain that needed to be removed immediately. He was referred to Dr. Peter Black, a highly regarded Neurosurgeon-in-Chief at Brigham and Women’s Hospital in Boston. On March 23, 1999 he had an appointment with Dr. Black and scheduled surgery for the next day. Knowing that he would be operated on by the world-renowned Dr. Black made him and his family feel comforted during a time where everything else felt out of control.
The operation for the removal of the tumor took approximately 12 hours. The tumor started in his head, continued to his neck and then down to his spine. When it had nowhere else to grow it attached itself to the nerve in the right side of his head which controlled the left side of his body. There was nerve damage during the operation which left him totally paralyzed on the left side of his body and partially paralyzed on the right. During his first night post-surgery, Joseph became agitated and was diagnosed by Dr. Black as being in a steroid psychosis which caused significant lack of control.
Joseph’s care team in the rehabilitation home stated that he would never regain the ability to walk again. The doctor at the rehabilitation home was the most positive, stating that Joseph may possibly progress to walking with a walker at the age of sixty. Knowing this, Joseph became very determined to beat this and spent every waking moment trying to regain control of his body. Rehabilitative nurses suggested to Joseph that instead of setting a goal of walking again, he learn how to regain normal life functions from a wheelchair. Joseph disagreed and kept his sights on walking out of the rehabilitation home. He saw no other option and would do whatever he could to walk. On his second and third days of rehabilitation he was already taking inch size steps, where he quickly progressed from a wheelchair, walker, 4-legged cane, regular cane, brace, and then eventually nothing. This was deemed a miracle, one that his doctor explained as “totally and medically impossible”.
With much effort and hard-work, Joseph is currently walking and enjoys all that life has to offer on his two feet. He still has repercussions and a slight limp, but “there is nothing that I don’t do, it just takes me a little bit longer” he says. Joseph enjoys golfing, going to the gym, and has dedicated much of his time to sharing his story and helping other people recover from brain surgery. I Wiggled My Toes… Hallelujah! was written by Joseph to share this story, which is sold on his website, eBay, Amazon, Barnes & Noble, as well as some bookstores on Cape Cod. He also has donated his book to every Library on Cape Cod. His best advice when going through something difficult is to simply trust yourself. Do not say “poor me” and let it ruin your life, your health, or your overall happiness. You have to be an advocate for yourself and realize that being diagnosed with a tumor can happen to anybody.
Today, Joseph has helped individuals through their tough times and has done so by giving them hope when they cannot find any. He has walked three people through a brain tumor operation and is dedicated to helping many others. Whether it be personal connections, or through his book, Joseph has had a positive influence on many people and has guided them to change their perspective on the ability to overcome difficult situations. If you are looking for support and motivation to change your trajectory, Joseph C. Salvo could be your resource and is willing to lend a helping hand.
Pauline has been a patient of Dr. Laws for 11 years. Pauline met Dr. Laws in a difficult time in her life as her brother had recently died from a brain aneurysm. She had just been diagnosed with a pituitary tumor and was frustrated that symptoms of her tumor had continuously been dismissed and ignored by previous doctors. During a time where she didn’t have much hope, she met Dr. Laws who renewed her faith, telling her she was not going to die. This gave Pauline much reassurance and made her feel healed from having to burden her mother with the loss of another child.
Before Thanksgiving that same year, Dr. Laws completed a surgery on Pauline to remove her tumor. After her initial surgery in 2012, the tumor grew back and five years later she had a second surgery with Dr. Laws. Pauline believes that Dr. Laws has changed her life for the better. Her annual appointment with Dr. Laws and Shery Iuliano, NP is always something she looks forward to as the team is always “very encouraging.”
Dr. Laws gave Pauline a new chance at life and in return she gifted Dr. Laws a painting inspired by her renewed hope.
The painting, pictured above, is described as having two interpretations, one mimicking the functional pituitary processes with the flow of water between jars. The other is a Christian interpretation, ‘Whoever brings blessing will be enriched, and one who waters will himself be watered’ (Proverbs 11:25). Pauline believes that “people who are good and kind, always get good things and Dr. Laws is a good and kind man, and that is why he gets good things.”
Pauline and Dr. Laws have continued to have a great relationship and continue to send each other Christmas cards and handwritten letters every year. The picture above was taken at her recent follow up appointment, five years after the second surgery.
Eric Romero, pictured above, is a 25-year-old male who underwent a traumatic fall in March of 2023. He was life-flighted to our Emergency Department where he had a right hemicraniectomy surgery with Dr. Arnaout, and later placed into a coma for ten days. After waking up from the coma, Eric remembers being worried that he couldn’t walk or go to the gym again. He was concerned that he would lose everything and may not be able to go back to work. For these reasons and being just 5 weeks out from a bodybuilding competition when his accident happened, he was determined to get back to his active self.
While being at Brigham and Women’s Hospital for two weeks and at Spaulding Rehabilitation Center for three weeks, Eric began walking on his own after only a week and a half of using a wheelchair. He also had to wear a helmet for his brain injury, which he did not like and caused people to stare. For anyone that must wear one of these, Eric shares that "it is temporary and will go away, at the end of the day it is your story."
During such a frustrating and unfamiliar time, he relied heavily on his family and friends to recover from his injuries and recommends that others in his position, "seek motivation even when it’s not around." Family was a major part in Eric’s ability to recover, especially his fiancé, whose voice was the only one Eric would respond to when in his coma. He learned that it is important to be vulnerable, honest, and to seek help if you need it, especially in times of traumatic health.
Today, just 4 months post-traumatic fall, Eric feels like himself again. He expressed that he learned a lot about himself throughout this experience and hopes to share with other people in the same situation. He recommends for anyone worrying about the financial concerns that accidents and surgeries bring, to create a GoFundMe page, as this helped him and his fiancé greatly and allowed him to focus solely on recovery. A month ago, Eric had a cranioplasty procedure done by Dr. Arnaout where a 3D printed skill was placed onto his head, making him much more comfortable. He is now able to drive a vehicle, hit the gym again, and is looking to share his story to help people overcome a trauma like he did.
Sarah Dreshaj, pictured above, is a mother and business owner. She found her way to Brigham and Women’s Hospital after an MRI and CT scan found a tumor known as ‘clementine’ on the top of her spinal column. After arriving, she met with Dr. Arnaout who was eager and confident to perform surgery on the benign tumor. Sarah described Dr. Arnaout as being very open and truthful as he communicated the risk of surgery and positioning of the tumor. He encouraged Sarah to put trust into him and his team. Her experience was described as honest and respectful with all of her questions answered.
Dr. Arnaout finished her surgery in 32 hours, removing the entirety of the tumor and leading Sarah into a healthy recovery.
Sarah is an owner of The Dam Brewhouse, LLC a brewhouse located in Campton, NH. She describes it as a 3-barrell, small place where people can come together, meet people, and make friends. They have 10 beers on tap with flavors that are different and constantly changing. During a visit with Dr. Arnaout, joked in asking if she could make a special beer for the BWH team. They decided it should be an IPA that wasn’t too bitter or high in alcohol, with the name unknown. Following Sarah’s surgery it was agreed that the name of the beer would be 32 hours, honoring her surgery and the amount of time it took to complete. They had a release party on the first day that the beer was available, inviting doctors and nurses from the local area that were a part of her journey, as well as inviting Dr. Arnaout and his team to the brewhouse.
Sarah is one year out from surgery, she is still recovering and healing, but overall healthy and happy. Her advice to others going through surgery or a tough diagnosis is to have faith, trust in the technology and the doctors, and to be open with your family members.
In this video created by the Focused Ultrasound Foundation, a patient of Brigham and Women's physician Rees Cosgrove, MD, with Parkinson's disease describes his life-changing focused ultrasound experience.
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.
Kenneth Correll (pictured above), a patient of Dr. G. Rees Cosgrove, Director of Epilepsy and Functional Neurosurgery, recently underwent a milestone treatment known as a Focused Ultrasound (FUS); a non-invasive, highly therapeutic treatment technique. This was the 300th Focused Ultrasound to be performed by Dr. Cosgrove and his team at Brigham and Women’s Hospital.
The treatment is incision-free and often results in great therapeutic effect that involves minimal complications. Guided by real-time MRI, the treatment technique provides patient-specific treatment planning as well as continuous temperature monitoring. With great flexibility and the ability to adjust parameters to ensure optimal response, patients typically get to go home the very same day as their procedure.
Kenneth was able to celebrate with the team immediately after the treatment concluded. Dr. Cosgrove is Insightec’s 3rd site in the country to reach this milestone.
James (Jim) Wierzbicki (pictured above with his family) is a husband and father who found himself envisioning the things that he wanted to do with his family. After years of excruciating pain and great resistance to surgery, Jim and his wife met with Dr. Michael W. Groff, Vice Chair of the Neurosurgery Department, who made them feel very comfortable and “certainly never overpromised anything.”
Jim had a lumbar fusion surgery to join two or more bones in January by Dr. Groff and his team. In the procedure, two or more spinal bones are fused together to stabilize the spine and stop the movement between bones that is causing pain. Jim’s experience consisted of a 2-hour preop period that felt like 15 minutes because, “Dr. Groff and his team were fun and kept it alive.” 2 weeks post-surgery James states, “the way I feel now is exponentially better,” and couldn’t believe that he was able to feel his legs immediately after surgery.
Jim’s wife was able to stay the whole time with him while recovering and noted that “the food was fantastic, and the nursing staff was amazing on the 16th floor.” “I have a lot of life left,” Jim explained, as he discussed his experience and how incredibly thankful he was to Dr. Groff and his team. He was amazed at how long he had put surgery off because of the magnitude of the operation. Jim says that the biggest preventative factor for him before surgery was the fear factor of undergoing a procedure and he would like to share with anyone currently experiencing fear of surgery that “the outcome is life-changing.”
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