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Four-time bladder cancer survivor is finally cancer-free
New Story has been published on https://enzaime.com/four-time-bladder-cancer-survivor-finally-cancer-free/
Four-time bladder cancer survivor is finally cancer-free
https://www.youtube.com/watch?v=a5TdEwYmIqU
Steve Winick was diagnosed with noninvasive bladder cancer, a slow-growing but tenacious form of cancer. He had tumors removed twice, each time the cancer returned. His third tumor removal surgery was followed by chemotherapy and radiation. He and his doctors believed at this point that he had beaten the cancer. Three and a half years later, his tumor returned. It was at that point that his doctor referred him to Mark Schoenberg, M.D. at Johns Hopkins, the best in the field. Dr. Schoenberg removed Winick’s bladder, successfully removing all traces of cancer as well. Winick has been cancer-free for almost eight years now and is able to do everything he was able to do prior to his diagnosis.
About the Johns Hopkins James Buchanan Brady Urological Institute
The Johns Hopkins James Buchanan Brady Urological Institute offers comprehensive treatment options for all urological conditions, including bladder cancer. There are new treatment approaches being developed and the collaborative effort of clinicians and researchers here have led to many advances in the treatment and understanding of the urinary tract and urinary tract cancer.
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Breast Cancer Survivor Uses Her Experience to Help Other Women
New Story has been published on https://enzaime.com/breast-cancer-survivor-uses-experience-help-women/
Breast Cancer Survivor Uses Her Experience to Help Other Women
On a typical day at Johns Hopkins Medical Imaging at Green Spring Station, patients coming in for imaging tests such as MRIs, ultrasounds and mammogramshave a comforting advocate available in the waiting room. Kate Pisano is a patient liaison — there to meet the needs of the patients by providing resources and support.
With Kate’s smile and cheerful attitude, it’s not obvious that recently she too was a patient sitting in the waiting room confronting her own major health challenges.
Two years ago Kate was fighting breast cancer and facing it alone as a single working mother of two teenaged sons.
Months after a painful divorce, Kate noticed a lump in her breast while getting undressed.
“I was afraid of what the lump might mean, so I waited several weeks before finally making an appointment with my doctor,” she said.
That appointment led to a mammogram followed by a biopsy. In April of 2012, Kate’s greatest fear was confirmed: She had breast cancer.
“The diagnosis was a complete surprise. I ate right, exercised and no one in my family had cancer,” said Kate.
Finding Hope at Hopkins
After exploring many options in Baltimore and beyond to find what she felt was the best treatment team for her, Kate decided to receive treatment from Johns Hopkins. Kate’s medical team combined specialists in imaging, surgery and oncology to help her fight breast cancer.
“Everyone from imaging and surgery through radiation treatment took great care of me,” she said. “I feel like they really cared about meeting my individual needs both medically and emotionally.”
Kate says this was especially critical for her given the lack of adult family support. Her oldest son was away at college and she did not have family nearby who could help.
“Facing cancer is a rugged process and I didn’t have another adult at home I could turn to,” said Kate. “At night I would lie alone in the dark, crying.”
Kate had surgery to have the lump removed, followed by chemotherapy and radiation for the next four months. Two weeks into treatment, her hair fell out.
“It was daunting being newly single, nearly fifty and bald,” said Kate. Months of surgery, chemotherapy and radiation came to an end and Kate is now considered a survivor in remission.
At Kate’s first post-breast cancer mammogram, she said a conversation with Dr. Lisa Mullen helped her achieve a sense of peace.
“Dr. Mullen helped me feel confident that today there is no cancer, and that is the best answer I can have,” she said. “The only way I can be a 20- or 30- or 40-year survivor is to be a survivor today.”
From Surviving to Thriving
Kate’s story of being a single mom facing cancer is not unique, but it is often an untold story.
“There are more women than you know who face this alone,” she said. “I have wonderful friends who came to appointments and supported me. There is no way I could have gotten through this without them, but the reality is going through the process with a child to raise and no adult support at home is overwhelming.”
As she rebuilt her life, Kate wanted to use her experiences to help others. In July 2013, Kate began a position at Johns Hopkins Imaging as a patient liaison.
“My own incredible experience as a patient at Johns Hopkins informs how I do what I do each day,” she said. “I want every patient to feel they are the most important person in the room, so that in addition to having top medical care, they feel cared for on an emotional level.”
Kate says radiology and imaging are an important piece of the cancer treatment process because so often that is the place where patients find answers about what is happening inside their bodies.
“Patients either get launched or sunk by what they learn. Whether it’s for a mammogram, a MRI or any other imaging test, it’s scary until you get the answers,” said Kate. ���I know that in that moment, finding an answer is the patient’s whole world while they wait.”
Kate wants all women, especially single moms, to know they can overcome a breast cancer diagnosis and that life can be good again.
“Getting through breast cancer showed me the strength I had inside. Today I know I am not just a survivor, I am a ‘thriver .’”
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A heart murmur and a leaky heart valve
New Story has been published on https://enzaime.com/heart-murmur-leaky-heart-valve/
A heart murmur and a leaky heart valve
https://www.youtube.com/watch?v=UbnFmqxbi5Q
Jim Watkins closely monitored his health after learning that he had a heart murmur and a leaky heart valve. After exploring his options at several hospitals, he chose to come to Johns Hopkins for a robotic mitral valve repair with Kaushik Mandal, M.D., a cardiac surgeon. He tells his story about the procedure, recovery and experience with The Johns Hopkins Hospital.
About the Johns Hopkins Robotic Cardiac Surgery Program
Minimally invasive robotic surgery may be used to treat many cardiac conditions with increased precision and safety. Our advanced robotic system allows us to perform complex operations through incisions that are much smaller than those used with traditional surgical approaches. Mandal and his team are dedicated to offering robotic cardiac to patients that are approved candidates for these procedures.
#cardiac conditions with increased precision#Kaushik Mandal M.D.#recovery and experience#Heart/Cardiac
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Having pancreatic cancer a suspicious tumor on your pancreas
New Story has been published on https://enzaime.com/pancreatic-cancer-suspicious-tumor-pancreas/
Having pancreatic cancer a suspicious tumor on your pancreas
https://www.youtube.com/watch?time_continue=15&v=QDwctWY-DOQ
Joseph “Cook” Edens III doesn’t let pancreatic cancer get in the way of living a full life. Edens was diagnosed with pancreatic cancer and underwent a Whipple procedure at The Johns Hopkins Hospital. Unfortunately, a bout of pancreatitis returned, and in 2015, surgeon Christopher Wolfgang and his team performed a total pancreatectomy on Edens, removing his entire pancreas and spleen. The Arlington, Virginia, resident is now cancer-free and back to a busy lifestyle of work, sports and family time.
About Johns Hopkins Pancreatic Cancer Care
Having pancreatic cancer — or a suspicious tumor on your pancreas — is a frightening diagnosis. Johns Hopkins experts, some of the most experienced pancreatic specialists in the country, are working to dispel fear and create hope in patients with pancreatic disease. Pancreatic cancer, tumors and cysts are being treated with dramatic success at Johns Hopkins.
The first step when dealing with suspected pancreatic cancer is accurate imaging and diagnosis, followed by determining whether or not you are a candidate for surgery. Our internationally recognized physician-scientists are dedicated to delivering state-of-the-art treatment planning and innovative, expert care to our patients.
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Pilot’s Training Helps Him Navigate Double Diagnosis
New Story has been published on https://enzaime.com/pilots-training-helps-navigate-double-diagnosis/
Pilot’s Training Helps Him Navigate Double Diagnosis
The way commercial airline pilot Terry Broderick describes it, his life was at cruising altitude when he learned he had stage III colorectal cancer.
Terry, 52, was on the verge of buying an airplane so he and his wife could fly to visit their five grown children. But before getting a chance to sign the paperwork, he had a routine colonoscopy. Then came the diagnosis that grounded his plans.
After receiving his diagnosis of colorectal cancer, Terry remembered that he had been impressed with the treatment his daughter received at The Johns Hopkins Hospital for a lower gastrointestinal ailment a few years earlier. That was when he had first met colorectal surgeon Jonathan Efron, M.D.
As a professional pilot, Terry was trained to deal with changing circumstances and to react in a way that achieves the best outcome. Terry decided that his best chance to beat colorectal cancer meant making the three-hour round-trip drive from his home in Virginia to be treated at Johns Hopkins.
“There was never any question about where I was going to go,” Terry recalls.
Unique Case with Colorectal Cancer
Terry’s colorectal cancer wasn’t the only challenge he faced. Soon after learning of the cancer in August 2015, Terry received a second life-threatening diagnosis: During a pre-surgery MRI, doctors discovered an aneurysm on the aortic artery in his chest.
In consultation with Terry’s cardiac surgeon, Efron recommended that they watch the aneurysm and treat the cancer first. This meant giving Terry chemotherapy and a radiation therapy called brachytherapy before undertaking a two-step sphincter-sparing surgical procedure that aims to prevent patients from having a permanent colostomy bag.
Advanced Therapy Before Surgery
Johns Hopkins was the first in the United States to use a new form of brachytherapy in the treatment of colorectal cancer. Brachytherapy is a radiation technique that delivers the radiation directly to the site of the tumor. It reduces treatment time from five weeks to four days.
While the procedure isn’t new, some recent advances in treating tumors before surgery have given doctors the ability to decrease the size of tumors significantly and to spare the anal muscles while removing the tumor, Efron says.
After the radiation therapy, Efron performed a sphincter-sparing procedure on Terry that involved removing the rectum and cancer and reattaching the colon to the anus with a temporary loop ilieostomy. This allows time for the bowel connection to heal. Then Terry had a second surgery to restore gastrointestinal function.
“In the last 10 or 15 years, we are a lot more aggressive at trying to prevent a permanent colostomy because of the ability we have to give people therapy before surgery,” says Efron.
Making Plans Again
Terry is blunt about the grueling nature of his treatment, which included open-heart surgery to repair his aorta, but he is grateful to have come through it.
Terry is among the 20 percent of patients who complete colorectal cancer treatment with no cancer left, Efron says. Having the opportunity to help—and getting to know—people like Terry and his family is immensely satisfying, he says.
“It’s really the reason we do what we do,” says Efron. “There are all kinds of rewards that comewith treating patients, but for me, the greatest satisfaction is seeing people do well and continue to do well and hopefully be cured.”
After a year and a half, Terry says it’s nice to be able to focus on his future instead of his treatment. Eventually, he hopes to be cleared to resume flying commercial jets. And for the first time in two years, he and his wife, Patti, are planning an extended trip to to visit their five children and three grandchildren.
“I’m just now getting my bearing about what it is I want to do,” he says. “It’s pretty neat to be able to plan a couple of months ahead.”
#aneurysm on the aortic artery in his chest#brachytherapy#Colorectal Cancer#colostomy bag#MRI#Cancer
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Experience with Aneurysms Comes into Play
New Story has been published on https://enzaime.com/experience-aneurysms-comes-play/
Experience with Aneurysms Comes into Play
Everything was going right for Laurie Jean Cannady in June 2015. An English professor at Lock Haven University in central Pennsylvania, Laurie Jean was planning a party to celebrate the publication of her new memoir, Crave: Sojourn of a Hungry Soul. Then, something odd happened: She noticed an unusual lump on her left cheek, below the cheekbone. Although it wasn’t painful, her primary care physician referred her to a local specialist for more tests.
Brain Aneurysm Diagnosed
A CT scan at an outpatient clinic confirmed that the lump wasn’t serious. However, the scan revealed another issue that was very concerning: Laurie Jean had an unruptured brain aneurysm, a weak and ballooning area in the wall of a brain artery that required immediate care. If left untreated, a life-threatening rupture of the brain aneurysm may occur.
Laurie Jean says she had trouble getting needed follow-up appointments and tests scheduled, which lulled her into a false sense of security about the urgency of her diagnosis.
“I figured if it were serious, they’d be moving more quickly,” she says.
Finally, a second scan confirmed the aneurysm diagnosis, and her primary care physician referred Laurie Jean to a neurosurgeon at a hospital less than two hours from her home. But Laurie Jean couldn’t get an appointment for two months. When she finally did have her appointment, the team recommended a craniotomy, a type of open brain surgery.
“All of the emotion and fear I’d had from the beginning rushed in at one time,” Laurie Jean recalls. “I was so scared about what I had been told; I considered not doing anything.”
While Laurie Jean waited to learn more about the treatment process from her physician, she turned to the internet. She joined a brain aneurysm support group on social media, where she learned she had other options.
“I unloaded on the group about how scared I was and asked people where they had gone for treatment,” says Laurie Jean. “One woman said she had been through the same experience and told me I needed to meet her doctor.”
Laurie Jean took the woman’s advice and called to schedule an appointment a neurosurgeon at The Johns Hopkins Hospital, over three hours away.
“I’ll never forget the woman who answered the phone,” says Laurie Jean. “Her name was Anna, and she was an angel. I just started crying, telling her how scared I was.”
Just two days later, Laurie Jean and her husband met with the neurosurgery team, an appointment, she says, that went a long way in easing her fears.
“When I met with the doctors I could feel the kindness and warmth,” she says. “[They] spent a lot of time just talking with us, showing us the scans of the aneurysm and explaining what troubled [them].”
The neurosurgeons knew from experience that the aneurysm’s size, location and shape were a dangerous combination.The Johns Hopkins team not only sees more aneurysms than any other facility in the area, but it’s one of the top facilities in the country. Many aneurysms they see that have ruptured are located in the same area Laurie Jean’s was. Although hers was considered small, there was still a risk for rupture, and its shape and bumpy surface increased the risk even more.
Innovative Technique to Treat Aneurysm
After further testing, Laurie Jean, her husband and three kids sat down with the surgeon, who explained that the best treatment option was not open surgery through her skull. Instead, the group would use a minimally invasive procedure to reach the aneurysm with an innovative combination of an embolization device and endovascular coiling. Using a minimally invasive approach rather than open surgery can result in shorter recovery time and faster healing.
In the procedure, microcoils were placed inside the aneurysm to help prevent blood flow to it, providing immediate protection from the aneurysm rupturing. The embolization device, which is a stent or tube, was placed into the blood vessel the aneurysm arose from, and over time, cells grew on the stent, sealing off the opening to the aneurysm for good.
It was an untraditional treatment, and probably only a handful of surgeons around the country could have offered it to Laurie Jean. The neurosurgeons recognized that as a young woman, Laurie Jean needed a solution that would last through her lifetime. In this case, the best approach was a minimally invasive procedure that the team knew could be both effective and safe.
Laurie Jean says that her trust in the team outweighed any hesitation she had about undergoing a cutting-edge procedure.
“My doctors saw me as a mom, a wife, a writer and a professor, not an unnamed, unknown patient. They promised they would do everything they could to get me back to my family.”
Laurie Jean Cannady, holding cake, celebrates the launch of her new book three weeks after surgery to treat her brain aneurysm.
She was also told to plan on celebrating at her book launch, which was only three weeks away.
Thanks to her decision to go with the minimally invasive treatment , Laurie Jean was only in the hospital one night and had a much quicker recovery than she would have had with an open procedure. Family came from far and wide to celebrate her book launch, which went off as scheduled without a hitch.
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Unique, minimally invasive surgery offers teen her one chance at living a normal life
New Story has been published on https://enzaime.com/unique-minimally-invasive-surgery-offers-teen-one-chance-living-normal-life/
Unique, minimally invasive surgery offers teen her one chance at living a normal life
Life was busy for 17-year-old Brianna Atkins. In January 2015, the Apple Valley, California, high school senior was ready to start her final season of soccer, focused on maintaining her spot in the top 10 of her class and working part time. But it all came to a sudden halt when she learned the headaches that she’d been having during the past month were caused by a brain aneurysm.
Instead of taking the field at the season’s first soccer game, Brianna was in the emergency room at the local hospital with her parents, Angel and Santos Adams. The headache pain was so bad that Brianna couldn’t play.
“I was on my way to her game when she called me crying,” recalls Angel. “She’s not one to complain about anything. We knew something wasn’t normal.”
A CT scan showed a mass on Brianna’s brain. After further testing by her primary care physician and a referral to a local neurologist, they learned the mass was a giant brain aneurysm, a weak and ballooning area in an artery wall.
Brianna’s aneurysm was in the part of her brain that supplies blood to areas that control functions like heart rate, eating, balance and speech. The aneurysm’s size and location meant it was only a matter of time before it ruptured, something Brianna likely wouldn’t survive.
Aneurysm Puts Normal Life on Hold
With this diagnosis, Brianna’s life came to an abrupt stop — no school, no soccer, complete bed rest — to reduce the risk of rupture.
“She lived in a makeshift bubble,” says Angel. “Her dad and I spent the next two weeks on the couch with her, taking turns watching her sleep.”
Within days, she and her parents had an appointment with a neurosurgeon close to her home. The doctor told them there was nothing she could do — common treatments for aneurysms weren’t an option. The aneurysm’s location made microsurgical clipping, a procedure that blocks blood flow to the aneurysm, too risky. Another option, endovascular coiling, uses platinum coils inside the aneurysm to clot the blood and block blood flow to the aneurysm. Unfortunately, the opening to Brianna’s aneurysm was so large that the coils would fall out.
However, the neurosurgeon recommended that the family contact the Aneurysm Center at the Johns Hopkins Department of Neurosurgery.
Hoping for an Option
After reviewing Brianna’s medical records, the surgical team believed her only chance was a minimally invasive procedure using an innovative combination of endovascular coiling and flow diversion with an embolization device. The coils would provide immediate blood clotting and block blood flow to the aneurysm. The embolization device, a stent (tube) placed in the blood vessel, would close off the opening and solve the problem of the coils falling out. Over time, cells would grow over the stent, sealing off the opening for good.
But using an embolization device in this particular location had only been done a handful of times, and there was concern about trying the technique on an aneurysm as large as Brianna’s.
The surgeons were honest with Brianna and her parents about the surgery’s risks. With the aneurysm located deep in the part of the brain that controls the body’s most basic functions, the margin for error was none.
We promised her we’d get her the best care we could, no matter what or where we had to go to get it.
One thing the family could count on was the experience of the team at the Johns Hopkins Aneurysm Center. The team treats an average of 350 aneurysms each year and has performed over 600 embolization flow diversions.
Fulfilling Promises
Three days after talking with the Johns Hopkins neurosurgeons, Brianna and her parents were on a flight to Baltimore.
“We promised her we’d get her the best care we could, no matter what or where we had to go to get it,” says Angel. ”We were excited for what was to come, knowing Brianna had a fighting chance, thanks to Johns Hopkins.”
Brianna spent the next week in the hospital, undergoing tests and taking medication to prepare her for surgery. She admits she was scared but says the staff and environment at The Johns Hopkins Hospital helped.
“The nurses were super patient and kind,” she says. “Everyone was amazing from the moment we got there.”
Angel says the surgeons helped ease their fears too. “They were real with us and talked to us so we understood. Their confidence really made us feel comfortable,” says Angel.
Brianna, right, and her sister Aubrey
Although the procedure involved complex manipulations the team didn’t expect, the surgery was a success. When Brianna left the hospital the next day, there were only two signs that she’d had brain surgery: the tiny incision needed to reach the aneurysm and a headache. Two weeks later, she was back in school, and that spring, she graduated with honors.
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Leader in Appendix Cancer Treatment
New Story has been published on https://enzaime.com/leader-appendix-cancer-treatment/
Leader in Appendix Cancer Treatment
In September 2015, Mike Douglas checked into a hospital near his Virginia home for what he thought was going to be routine hernia surgery. As things turned out, the doctor performing the procedure instead did a biopsy when he discovered something unusual inside the abdomen of the then 54-year-old software engineer, husband and father of two.
After an agonizing week of waiting for results, Mike got a call from his doctor with bad news. The tests indicated he had a very rare and potentially deadly tumorous condition in and around his appendix. Called pseudomyxoma peritonei or PMP, the condition is not curable, but it is treatable, Mike recalls the doctor telling him.
“It was quite a surprise,” he says of the diagnosis.
Treating Appendix Cancer
A series of referrals from local doctors brought Mike to The Johns Hopkins Hospital, where he met with an experienced surgical oncologist specializing in the treatment of appendix cancer.
Of the six subtypes of appendix cancer, PMP is one of the most serious, she says. The tumors, known as low-grade appendiceal mucinous neoplasms or LAMN, don’t typically spread beyond the abdominal cavity. They do, however, secrete a jelly-like substance that slowly interferes with the function of the organs and digestive tract, and if left untreated, can lead to death.
In Mike’s case, the LAMN had perforated, spreading tumors throughout his abdomen.
What Mike didn’t know is that the tumors had been slowly growing inside his abdomen for five to 10 years.
Nicknamed “jelly belly,” the condition is known for the inner tube-like roll it produces around a patient’s midsection. Mike chalked his bulging belly up to middle-age weight gain, but Ahuja knew immediately it was something else.
“You could see it was very disproportional,” she says. “He’s a very fit guy .”
“The reputation of Johns Hopkins, and having Dr. Ahuja overseeing in my treatment, just reassured me that everything was going to be okay,”
– Mike Douglas
The only treatment option for patients with PMP is cytoreductive surgery and HIPEC (heated chemotherapy), Ahuja says. The procedure takes about 12 hours, during which the surgeon removes all visible tumors and impacted organs. Mike’s surgery took place in January 2016 and involved removing his gallbladder, spleen, part of his intestines, half of his colon and his diaphragm.
Surgery is immediately followed by a one-time, 90-minute dose of chemotherapy. Unlike traditional intravenous chemotherapy, HIPEC involves delivering chemotherapy solution to the abdominal cavity through a network of catheters (narrow tubes). Heating the drugs allows for better penetration in areas with remaining tumors, Ahuja says.
Johns Hopkins is a leader in appendix cancer treatment, seeing 100 to 200 patients each year. The surgical oncology team performs a combined total of about 70 cytoreductive surgeries with HIPEC each year.
Mike remembers being immediately impressed by the direct, no-nonsense approach Ahuja took with his case. After looking at his CT scan, she presented her plan for the surgery and treatment details ranging from how long Mike would be in the hospital to when he could expect to go back to work.
There is no screening for appendix cancer, and it’s easy to mistake symptoms for something else, as Mike did with his protruding waistline. The most common warning signs, Ahuja says, are unexplained loss of weight, loss of appetite—cancers often secrete toxins that make people not want to eat—and gastrointestinal symptoms, such as abdominal discomfort and fullness.
Mike also had a dry cough that he later learned was caused by a tumor growing on his diaphragm. Interestingly, his sister was diagnosed with appendix cancer the year before, though doctors still don’t know if the condition has a genetic component.
“If something is not right in your day-to-day, go to your internist and have them look at it,” Ahuja recommends.
Also important: getting treatment at a center that regularly handles cases of appendix cancer, if cancer is suspected. The wrong diagnosis can lead to the wrong treatment, Ahuja says.
“The appendix has all these different types of cancer that can affect it, and getting to places with experience dealing with this is critical,” she adds.
During his treatment, Mike’s weight dropped from 200 pounds to about 150 pounds. A year after the surgery, he is back up to a healthy 190 pounds. With the help of physical therapy, he has regained much of his core strength and stays in shape doing three- to five-mile walks. He knows at some point he will need surgery again. In the meantime, he has checkups with Ahuja every four months.
Mike working out during a recent physical therapy/fitness session near his home.
Knowing that Ahuja and her team had experience treating his rare form of cancer helped him stay positive and calm after his diagnosis, Mike says.
“The reputation of Johns Hopkins, and having Dr. Ahuja overseeing in my treatment, just reassured me that everything was going to be okay,” he says.
Learn More About Appendix Cancer
Appendix cancer is very rare, with fewer than 1,000 Americans diagnosed each year. It occurs when healthy cells in the appendix change and grow out of control. Appendix cancer can be challenging to detect and is often found incidentally. There are six subtypes of appendiceal cancer. Mike had pseudomyxoma peritonei (PMP), a rare and very serious iteration of appendix cancer. PMP typically develops in the appendix and often goes undetected because there are no symptoms. Left untreated, the tumor grows and eventually bursts through the wall of the appendix and into the abdominal cavity, where more tumors develop.
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Susan, back to her active routine after her chordoma surgery
New Story has been published on http://enzaime.com/susan-back-active-routine-chordoma-surgery/
Susan, back to her active routine after her chordoma surgery
November 4th was Susan’s wedding anniversary, and she and her husband Tim were in the car on their way to The Johns Hopkins Hospital. Just two weeks earlier, Susan had been diagnosed with a chordoma, a tumor that was growing at the base of her spine.
“As an active, lifelong health, nutrition and fitness practitioner who has never been hospitalized, I was in shock.” says Susan. “For the first time in my life, my world suddenly felt like it had spun out of control.”
On the way to Baltimore, Tim asked one more time: “Do you want to keep going, or do you want to just go to the airport and fly someplace wonderful?”
Susan, thinking of future trips and adventures she wanted to share with him, said, “Keep going.”
Chordoma: A Rare Diagnosis
Chordoma is a rare tumor. In Susan’s case, the doctors had caught it early. But she says the diagnosis sent her reeling.
Her general practitioner recommended a specialist in surgery for chordoma tumors: Dan Sciubba, M.D. After the consultation, Sciubba recommended a surgery called distal sacrectomy that would involve removing a section including several bones — along with the tumor — from the base of Susan’s spine.
Sciubba says, “Chordomas affect literally one in a million people, about 300 each year in the U.S. The Johns Hopkins Neurosurgical Spine Center is a popular place for patients with chordomas, and as a result, I operate on these tumors regularly. Chemo and radiation don’t work effectively with chordomas; often the only way to address them is to operate.”
Essential Expertise
Surgery for chordomas is complex. Complete removal is a must, since the risk of recurrence is high. At the same time, the neurosurgeon must take care not to harm the delicate nerves branching off of the spinal cord that give the patient the ability to walk and experience sensation in her lower body. The team must include a skilled plastic surgeon to reconstruct the lower back and close the large incisions associated with sacrectomy.
Knowing the kind of skill required to address the chordoma was what kept her on the road to Johns Hopkins. Susan says Sciubba had the communication style she was looking for: direct, informative and compassionate. She and her husband left the first consultation with a realistic view of what they were facing, along with a good measure of hope.
Susan says, “I had immediate peace of mind knowing I had made the right decision with Dr. Sciubba and [Johns] Hopkins.”
Johns Hopkins saved my life. I told Dr. Sciubba that the women in my family live well into their late 80s, 90s and beyond, and I didn’t want to be the one to break that streak. Now I have every hope and confidence that I will carry on that family record.
Sciubba says, “Susan had read up on these tumors, and I was very clear with her about the risks involved in this major surgery. We would have to amputate several bones in Susan’s sacrum (lower spine) and include margins of healthy tissue to ensure we remove all the cancer. She was understandably afraid. There was a chance that the surgery can leave a patient with loss of lower body function, including the ability to walk.
“But once she made the choice to go ahead with the surgery, she went for it and was super tough. Her courage paid off. We were able to preserve the important nerves in her pelvis and got a terrific result.”
Skill, Compassion and a Touch of ‘Zen’
Susan is also grateful for coordination among the members of her entire care team. She writes, “Dr. Sciubba and his surgical team, including [physician assistant] Reese Rosato and [medical office coordinator] Valerie Buxton-Punch were empathetic and responsive to any questions and concerns that I had. I’m sure Reese fields a multitude of emails daily, yet her thoughtful, informed and speedy responses made me feel like I was her only patient!”
She notes that her anesthesiologist, Dr. Thai Tran Nguyen, and her plastic surgeon Dr. Oluseyi Aliu took time to comfort her and her husband before, during and after surgery.
She says, “My first night in the neuro-critical care unit, [nurses] Carly Martini and Katie made me comfortable and reassured me. Carly was able to quickly discern that the pain meds were too strong for my body, which was not used to anything stronger than an occasional [naproxen]. She quickly ‘downgraded’ me to less powerful medications.”
Susan appreciated the details that went into her care at the NCCU. “When Carly came in, she’d always gently turn me and rearrange the sheets so they were more comfortable. She called it ‘Zen-ing’ the bed.”
Susan recovering from her surgery, with the support of her Johns Hopkins nurses and technologists.
Coaches for Recovery
“I have no words to express my gratitude for the care of the nurses and techs on the neurological floor. Shannon, Brittany, Angela, So’Nita – I’m grateful they were there. They not only did their work efficiently, they listened, laughed and communicated with me.” During one procedure that Susan feared, she writes that So’Nita managed to help her relax and actually laugh.
The team’s support continued as Susan got better. “As I made my laps around the floor, first with shuffling steps, then with longer, more confident strides, the nurses and techs behind the desks or walking by cheered me on like I was an athlete.”
As she acknowledges everyone who helped her, Susan has the most gratitude for her neurosurgeon. She writes, “Dr. Sciubba worked meticulously to save the nerve roots and minimize long-term nerve damage. And the best news is that he excised the entire tumor with clean margins! They got it all. It may be a rare tumor, but not for Hopkins.”
The Way Onward
On December 13th, Susan celebrated her birthday, and on that day Aliu, her plastic and reconstructive surgeon, removed the last of the drains, sutures and dressings. Susan says he gave her a hug, wished her well and asked her to keep in touch.
Susan’s homecoming was triumphant. “Tim took all the signs down in our home that read ‘No bending, no lifting, no twisting, no sitting, no steps’ and replaced them with ‘Bend! Lift! Twist! Sit!’”
“I am back to work, the gym, my painting, my causes, my life,” Susan says. “I never needed to open the bottle of pain meds they sent me home with. I am fully functional and have none of the long-term damage that can accompany this type of procedure. I know that not everyone is as fortunate as I was, but I believe my great results had a lot to do with early detection, taking good care of myself and the wonderful care I received from my Johns Hopkins team.
“I feel great, and know that I’m only going to get stronger and feel better with additional recovery time.”
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Osteosarcoma: Jaliyah's Story
New Story has been published on https://enzaime.com/osteosarcoma-jaliyahs-story/
Osteosarcoma: Jaliyah's Story
https://www.youtube.com/watch?time_continue=3&v=sZ1ZmGQ2irI
At age 9, Jaliyah was diagnosed with an osteosarcoma. After swelling from an ankle sprain did not subside, a visit to Jaliyah’s primary care physician revealed that her ankle pain was caused by a tumor. When local specialists recommended amputation, Jaliyah’s mother, Joyce, searched for a second opinion to save her daughter’s leg.
Joyce found Carol Morris, M.D., M.S., chief of orthopaedic oncology at The Johns Hopkins Hospital, who offered an alternative. Morris and her team performed a complex limb-sparing surgery, allowing Jaliyah to keep her leg. Learn more about Jaliyah’s story and the care team that gave her the chance to continue dancing.
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Parotid Salivary Gland Tumor: Jubenal's Story
New Story has been published on https://enzaime.com/parotid-salivary-gland-tumor-jubenals-story/
Parotid Salivary Gland Tumor: Jubenal's Story
https://www.youtube.com/watch?time_continue=10&v=RkrR0opalwQ
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Robotic Surgery for Head and Neck Cancer
New Story has been published on https://enzaime.com/robotic-surgery-head-neck-cancer/
Robotic Surgery for Head and Neck Cancer
After leaving her doctor’s office in Taiwan, Esther Wong knew she needed a second opinion.
At a routine physical in September, Esther’s doctor noticed something concerning under her tongue and sent her to see a specialist. The otolaryngologist she saw attempted a biopsy but had difficulty gaining access to the affected area. She was diagnosed with salivary gland cancer, and her doctor recommended surgery.
Esther was told to expect a very invasive procedure that would leave scars on her face. She might even need to have some of her teeth removed for the surgeon to access the tumor.
The last straw for Esther was the news that the surgery could damage her voice box and leave her without the ability to speak. This was unacceptable to the middle school teacher at Taipei American School, who wasn’t willing to risk ending her teaching career, her true passion.
Traveling to Johns Hopkins
Knowing Esther spent 15 years living in Maryland, the principal of her school asked why she didn’t go to Johns Hopkins for a second opinion. After consulting with her husband, Esther quickly made an appointment in the Department of Otolaryngology-Head and Neck Surgery.
By December, Esther was back in Maryland for a second opinion. She walked into the offices at Johns Hopkins and was quickly met with a hug by Tanya Bridges, with whom she had corresponded and coordinated with from Taiwan. Esther felt at ease and knew she was in the right place.
Tanya knew Esther had traveled a great distance and was eager to return to the classroom, so she organized Esther’s visit to ensure that she had all of her appointments on the same day. Here she met her treatment team — including salivary gland cancer expert David Eisele, M.D., director of the department.
The team agreed that the tumor was in a challenging place and told Esther that she was a perfect candidate for robotic surgery. She eagerly agreed to the treatment plan. The Johns Hopkins Hospital was one of the first American medical centers to offer robotic surgery as an option for certain head and neck cancers, and patients like Esther have greatly benefited from the technology.
Recent advances in technology allow the head and neck robotic surgery team to access tumors in difficult-to-reach areas such as the back of the tongue, tonsils or throat. The robotic surgery team uses a guided endoscope to provide a high-resolution image of the area around the tumor. Then, using two robotically guided instruments that act as a surgeon’s arms, our experts are able to safely access and remove the tumor. After successful surgery, Esther, like most patients who have robotic surgery, only spent one night in the hospital — compared to a week for patients who undergo traditional surgery.
Back to the Classroom
Esther was relieved that her recovery would be quick because she was eager to return to her students, who were rooting for her from across the globe.
“Teaching is very important to me,” Esther said. “Teaching is my life.”
Esther began counting down the days until she could return to her class, and after only two weeks, she was on a plane bound for Taiwan where her students eagerly awaited her return.
For Esther, robotic surgery was a gift. It removed the cancer without harming her voice and got her back to her family and students sooner.
“Robotic surgery,” she said, “is definitely a wonderful thing.”
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Always the 'tough as nails, nothing can hurt me
New Story has been published on https://enzaime.com/always-tough-nails-nothing-can-hurt/
Always the 'tough as nails, nothing can hurt me
I was always the ‘tough as nails, nothing can hurt me’, kind of guy,” Steve recalls. But stress at work had taken its toll and his weight ballooned from what he calls his “fighting and playing weight.” Steve often didn’t feel well.
In November of 2007 he developed a sore throat. “I didn’t pay much attention to it because it seemed like I always caught a cold or lost my voice around that time of year,” the life-long northern Virginia resident says. A week later, he not only experienced a sore throat but felt like something like a piece of food was stuck in his throat. After several trips to his primary care physician, he was referred to an otolaryngologist (also known as an ENT).
Using a scope (a small thin camera) to see down his throat, they discovered a golf ball-sized tumor at the base of his tongue. Biopsy results a week later confirmed the worst — Steve had cancer.
Stifling Cancer’s Stronghold
It took a while for that to sink in. My first thought was, ‘Holy crap, I’m going to die. I’m too young for this,’” Steve says. He thought of his wife and their two children, and then his thoughts transitioned to action. “OK, how do I fix this?” he recalls. This entire thought process flashed through his mind in a matter of seconds while he sat in front of the ENT who was delivering the news of his diagnosis.
Steve, who had never smoked, had HPV+ cancer at the base of his tongue. Under the care of a radiologist he underwent chemoradiation and had a feeding tube and medical port installed. His treatment consisted of three double doses of chemotherapy (one treatment every three weeks) and 35 radiation treatments (20 minutes a day, five days a week).
Steve lost 85 pounds during the four months of chemoradiation and couldn’t swallow. He was referred to speech-language pathologist Kim Webster, M.A. “After the treatments, it looked like the tumor was gone,” Steve remembers. But sadly, by that summer, the cancer returned.
Nine months after receiving his cancer diagnosis, Steve’s ENT and radiologist referred him to head and neck cancer specialist Christine Gourin, M.D. Steve’s only option for survival was to remove his tongue and several lymph nodes that had become consumed by the cancer. Together, Dr. Gourin and facial reconstructive surgeon Kofi Boahene, M.D., removed his tongue and replaced the tissue with a flap from muscle in his thigh.
Steve spent several days in recovery, where he was cared for by Carol Maragos, M.S.N., C.R.N.P., C.N.O.R., and Alyson Stolba, R.N. “They along with the rest of the staff were just wonderful to both myself and my family,” Steve remembers.
Two weeks later, after reviewing Steve’s test results, Dr. Gourin delivered unfortunate news: Steve would also need his larynx (voice box) removed. “This was a tough one to take. Knowing I’d never speak or sing again was pretty hard,” Steve says. He had always been the one with a story, joke or a song.
He underwent additional surgery to remove his larynx. “Recovery was hard,” he recalls. Going from a man who could bench press 320 pounds to not being able to lift his arms above his head — and at times, even hold his head up straight — was taxing. It was also difficult for his wife and kids. “I hated to see them have to see me that way,” he says. But it was only a matter of days before his family was back to making fun of him and giving him grief for his terrible handwriting — a welcome return to normal.
A New Normal
Over time, Steve regained much of his strength. “I did my therapy and walking and slowly got back to what I call the new normal.” A lot has changed, but mostly life is the same. “I feel healthier than before,” he reflects.
Old friends remained and Steve made many new friends along the way. He lost his voice but gets across his words with ease using an app that turns typed text to speech, “And when I’m mad I just type in all caps,” he jokes. He’s still able to eat all his favorite foods as long as he takes very small bites and washes every bite down with fluids. However, he prefers to pulverize most of his foods in a blender because he is able to eat more. Steve eats everything from steak to cereal this way.
Steve’s had to make other modifications to his life as well. “I can’t create suction to drink from a straw and can’t blow my nose,” he says. He breathes through a stoma, so he can’t go swimming without risk of drowning, “but I don’t snore and Kim loves this,” he says, referring to his loving wife of over 30 years. His golf game has improved and Steve plays guitar for a band. They play shows for more than 200 people in the Washington, D.C. metro area. Steve and his son Peter even went skydiving together last year. “I truly believe getting cancer saved my life — I know that sounds strange, but I believe it did,” Steve says.
“[Dr. Gourin] and Hopkins saved my life for which my family and I are forever grateful,” he says. Steve regularly talks to patients with head and neck cancers: “It’s the least I can do to pay it forward or pay it back.” He’s developed friendships with many of these people, along with his care team at Johns Hopkins, with whom he’s often texting or emailing. He is a regular fixture in Dr. Gourin’s office, offering guidance, compassion and humor to those undergoing treatment. “He is amazing,” Dr. Gourin beams.
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A Family's Hope Is Restored!
New Story has been published on https://enzaime.com/a-familys-hope-is-restored/
A Family's Hope Is Restored!
https://www.youtube.com/watch?time_continue=5&v=_a33x5XgznI
After a fall, 9-year-old Danica was left with metal rods, which had been implanted years before to stabilize her spine and had broken in the accident, floating dangerously close to her brain stem. Danica and her family traveled from Ohio to Johns Hopkins to receive life-altering, complex reconstruction surgery from Neurosurgical Spine Center Director Nicholas Theodore, M.D. Danica is now able to ride a bike for the first time ever.
The first sign of something wrong with Danica Snyder’s spine came at age 13 months, when she cried out in pain when turning her head a certain way during diaper changes. Then, while posing for a family portrait at 18 months old, Danica’s head kept falling to one side.
Danica and her mother share a special moment.
“Everyone said she had torticollis,” says Danica’s mother, Monica Kaye Snyder.
Torticollis, or “twisted neck” in Latin, which can occur due to positioning in the womb, can be corrected with stretching exercises at home. But physical therapy recommended by Danica’s pediatrician was not only not improving her condition, “she was getting worse,” says her mom. She then took Danica to a neurologist near their home in Uniontown, Ohio, who ordered a CT scanof her neck, which offered no clues to her problem. Then, she took her child to another neurologist, who ordered an MRI scan that revealed the culprit.
“We saw the Chiari malformation,” says Snyder, referring to a congenital defect in which brain tissue extends into the spinal canal.
Danica was referred to an Ohio hospital, where pediatric neurosurgeons were surprised to see excess bone along the right side of her cervical spine pulling her head to one side, signs of a rare condition called atlas assimilation. Indeed, vertebrae C2 and C3 were starting to fuse with the base of her skull, a condition no amount of physical therapy could fix. Complicating matters more, her brain stem and cerebellum had already started to drop into her spinal canal, compromising the flow of cerebral spinal fluid (CSF) surrounding and protecting Danica’s skull. The bones at the base of her skull needed to be opened up, a procedure called decompression, to allow for proper flow of CSF.
“There was no flow at all on the right side of her brain,” says Snyder.
Surgical Intervention
Surgeons successfully decompressed Danica, then age 2, but her crossing with Chiari malformation was far from over. Neurosurgeons scanning her six months later found further descent of brain tissue into her spinal canal and instability where the spinal cord meets the brain—the craniovertebral junction (CVJ). She needed to be decompressed again and have her spine stabilized with spinal instrumentation.
Danica underwent another decompression operation, but surgeons recommended she wait until she reached age 6 for fusion surgery. Seeing 3-D imaging of Danica’s Chiari, Snyder says: “I knew that wasn’t the answer. Part of the brain that had fallen was already dead.”
She found a neurosurgeon and spine surgeon who together would do Danica’s fusion surgery. After the surgeons stabilized the CVJ with metal rods and sewed in a cerebellar sling to keep her brain from falling again, they restricted her to a wheelchair and no physical activity for at least six months. Also during that time, she would have to wear a brace 24/7 for at least six months to help immobilize her spine. She ended up wearing it for a year.
“That was a very long journey for a young child to have no motor development activity,” says Snyder. “But we see now how that shaped Danica into who she is—a reader, musician, a functionally bright kid.”
But Danica also wanted to be like other kids, to play with them on the school playground when she was told she would have to sit on the sidelines. One day she said no, walked toward the playground and fell.
“I believe that’s when the hardware broke,” says Snyder.
Indeed, Danica and her mom then heard clicking and popping sounds of metal on metal when Danica moved her head. She lost stability in her spine and, worse, the broken rods were endangering her brain. To further complicate matters, Danica’s last two surgeons had retired. Snyder tried to remain hopeful but knew there were few experts in the country who could manage a very complex patient like Danica.
“I didn’t know where else to go, where to get another opinion,” she says. “We were worried no one would take her case.”
Technological Advancements Guide a Complicated Case
Then, she learned that one of those experts, neurosurgeon Nicholas Theodore, was moving from Arizona to Baltimore and The Johns Hopkins Hospital, which she knew well from working for many years in the Baltimore-Washington area. But he had just arrived and had not even settled into an office.
“He didn’t even have paper clips,” says Snyder. Nonetheless, Theodore’s longtime assistant, Julie Zeuch, said, “Send me Danica’s files.” Then Theodore, who had deep experience treating patients with motor vehicle-related traumatic spine injuries in Arizona, called. “He said, I’m honored and humbled to take this case. This is what I do,” recalls Snyder.
Indeed, Theodore had performed some 150 of these high-risk procedures. But as confident as he was, Theodore knew this revision spine surgery would be no walk in the park. He would be operating on the CVJ, the holy grail of spine surgery, what Theodore calls “high-priced real estate.” And this anatomy had been altered by broken rods and previous surgeries, obstructing his visual field.
“If you haven’t seen this before, from a surgical perspective, it’s kind of daunting,” says Theodore. “It’s like being in the middle of New York City and someone takes your map away and you don’t know where you are.”
To navigate this terrain, he took advantage of intraoperative imaging advances at Johns Hopkins, positioning Danica in an O-arm CT to obtain real-time 3-D images during the procedure.
“In this case, the technology was critical in determining the location of the broken rods, spinal canal and other critical structure all covered in semihealing bone,” says Theodore. “The imaging gave us immediate feedback where everything is.”
The imaging and Theodore’s surgical expertise were important in another regard too. In a previous surgery, the end of a spinal drain catheter had broken off and now threatened Danica’s brain stem. Using the intraoperative CT, Theodore knew exactly where it was and was able to neatly remove it instead of making a large opening in the dura—the membrane covering the spinal canal and brain—exposing the spinal cord and fishing around for it.
“We were able to make a very small opening, dissect the catheter away from the brain stem and take it out,” says Theodore.
To stabilize Danica’s severely unstable CVJ, which posed a risk of pinching her spinal cord and incurring severe neurologic deficits, Theodore meticulously removed and repaired the broken hardware in the six-hour operation. He also harvested a 3-inch piece of the girl’s top rib for additional support. This is natural bone, explains Theodore, which gives patients a higher rate of healing than cadaver bone.
“Also, the rib has a nice curve to it and fits perfectly between the base of the skull and the upper cervical spine,” says Theodore. “It’s as though God invented it as a piece to fill in this piece of the jigsaw puzzle.”
A Collaborative Win
Danica’s outcome?
“The pain she was having before is gone; she’s doing quite well,” says Theodore. “If she does end up having a solid fusion and everything heals perfectly, I think the future is bright for her. I think it is now. I’ve had pretty good luck in these revision operations.”
Theodore adds that the credit for such outcomes goes to the diverse skills and collaboration of Johns Hopkins’ surgical teams.
“This case underscores our different expertise and team approach history. It’s not one guy doing everything,” says Theodore. “This is one of those areas—complicated spinal problems—where we come together for the benefit of the patient. That type of collaboration is another reason I’m here.”
For Snyder, Danica’s recovery “was everything we had hoped for. She had zero pain after her surgery, and now she’s doing so well. We’ve had amazing support in the community and at school. She’s very loved.”
She attributes her outcome not only to Theodore’s surgical skills, but also to the way he interacted with Danica and infused her with confidence.
“The day before her surgery, Dr. Theodore came into Danica’s room and went right to her and spoke to her like there was no one else in the room. He asked her how she was feeling and talked about her operation, which gave her a lot of confidence going into the surgery,” says Snyder. “He made all the difference in restoring a childhood that she honestly never had.”
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Surgical Approach Saves Teen from Lifetime of Violent Seizures
New Story has been published on https://enzaime.com/surgical-approach-saves-teen-lifetime-violent-seizures/
Surgical Approach Saves Teen from Lifetime of Violent Seizures
Ryan Bigelow’s parents were concerned when at age 3, his right leg began to shake a bit for a day or two. What Ryan jokingly called his “wiggly leg” showed up again a month later, a pattern that would repeat itself over Ryan’s early years. Then, at age 10, Ryan’s wiggly leg spread to his entire right side in a violent, minute-long seizure. The Pasadena, Maryland, family called 911.
“He was given Ativan at the emergency room to ‘break the episode,’ a term we would become very familiar with over the next five years,” says Ryan’s dad, Sonny Bigelow.
Ryan was diagnosed with epilepsy—the idiopathic form, in which the cause is not known. Like many children with epilepsy, he would be managed with anti-seizure medicines that reduced the frequency and severity of his partial seizures but did not eliminate them. For Ryan’s parents, life became a continuous cycle of adjusting and changing medications, giving him multiple drug cocktails. However, no matter what combination doctors tried, Ryan’s seizures continued to get worse—confining him to a wheelchair because even the slightest pressure on his right foot would trigger seizures. The parents were distraught, Ryan in despair.
“I remember telling him when he was 10, as tears started rolling down his cheeks, that it’s OK to cry,” says Sonny. “Then, he said, ‘I hope this is not a lifelong condition.’”
That, however, appeared to be the prognosis. Indeed, at what Sonny calls Ryan’s “first and last day at high school,” he collapsed from another violent seizure that paralyzed his right leg and sent him to the Emergency Department at the Johns Hopkins Children’s Center. But that visit turned out to be serendipitous, as physicians noted that Ryan was not presenting as a patient would with idiopathic epilepsy. He was no longer having “episodes” of seizures but continuous seizures—60 or more a day—a condition called epilepsia partialis continua. The good news was Ryan’s epilepsy was reclassified as refractory epilepsy, or drug-resistant epilepsy, which meant that it could be treated surgically—but only if a lesion in Ryan’s brain triggering the seizures could be located. As it turned out, that would be no easy feat.
For the next six days, under the direction of pediatric neurologist Sarah Kelley, who has extensive experience treating children with refractory epilepsy, Ryan’s seizures were captured by EEG and video in the epilepsy monitoring unit. But while the EEG suggested a possible area of abnormality in the brain, the MRI scans did not reveal anything structurally wrong in Ryan’s brain. The culprit lesion was still in hiding, and Kelley felt it might take a needle-in-the-haystack search to find it.
Enter pediatric neuroradiologist Bruno Soares, who was asked to review an earlier MRI scan of Ryan that had been interpreted as normal. Correlating Ryan’s clinical picture and EEG, he knew almost immediately where to look for the lesion on the scan.
“I went to the patient’s chart and saw that the seizures start in the right hip and leg, so it’s something in the motor area of the brain on the left side,” says Soares. “And the spikes in the EEG suggest the seizure focus is near the vertex, the top of the brain, in the primary motor cortex that controls movement.”
From there, Soares scanned the convolutions and folds in the cortex, where there should be a clear demarcation between gray and white matter. There, at the bottom of a sulci, an enfolding in the brain, was “a little bit of blurring between the junction of gray and white matter,” says Soares, what he knew was a shadowy sign of a certain type of lesion. In his mind, the search for the source of Ryan’s seizures was over.
“I said it’s very subtle, but this patient definitely has a focal cortical dysplasia,” says Soares, noting that the literature shows up to 40 percent of these very faint lesions can be missed on conventional MRI scans. “Now, suddenly everyone in the epilepsy conference is excited and hopeful because there is a lesion, something to address.”
Doing the addressing would be pediatric neurosurgeon Shenandoah “Dody” Robinson. But first, both she and Kelley wanted additional imaging to confirm that this lesion was indeed the culprit. To determine the extent of the lesion, they ordered a magnetoencephalography and a higher-magnification MRI scan using neighboring Kennedy Krieger Institute’s 7 Tesla research MRI scanner, which produces higher-resolution images than those generated by the 3 Tesla MRI scanner used by most academic medical centers. Ryan would become the first patient under a new clinical protocol using the 7 Tesla, which depicted the lesion in greater detail.
“It looked like a teardrop of cells at the bottom of a sulcus folding in the cortex of the brain, very close to the left motor strip, the area that controls the movement of the right side of the body,” says Kennedy Krieger pediatric neurologist Michael Johnston.
Now the team, knowing that removal of a focal cortical dysplasia can result in a seizure-free outcome, was really excited. But knowing where the lesion lived did not mean removing it would be risk-free, as the lesion was a few millimeters away from the area in the brain responsible for language and motor movement. Ryan was at risk of losing the function of his right arm and leg, as well as his speech.
Intracranial monitoring in the epilepsy monitoring unit helped reduce that risk, and subcortical motor brain mapping was used during the operation to ensure vulnerable areas were not injured. With advanced neuro navigation at her side, Robinson was able to remove the lesion last November.
The patient’s outcome?
Immediately after surgery, Ryan was able to speak, and 24 hours later, he gave his family a high-five with his right arm. Two weeks later, Ryan was walking with a slight case of drop foot, which with physical therapy was improving.
“I do not know how Dr. Robinson was able to successfully perform this difficult and delicate surgery so close to these motor control areas without any noticeable impairment—it’s a miracle,” says Sonny. “There are no words to describe how wonderful Dr. Kelley and Dr. Robinson are, or how wonderful the epilepsy monitoring unit, the surgical team, the PICU staff, the pediatrics ward staff and the physical therapists at the Kennedy Krieger Institute are. I can only tell you that the Johns Hopkins Children’s Center pulled out every stop to make sure that Ryan received the best care possible.”
Kelley adds: “We received an email from the family over Christmas saying Ryan’s wheelchair is collecting dust in a corner. He’s walking everywhere, and the family is very happy we gave them their son back. They said it’s the best Christmas present they could ever have.”
For the Johns Hopkins Children’s Center and the Kennedy Krieger Institute, this case was the catalyst for the shared evaluation and treatment of patients like Ryan, as well as those with cerebral palsy and neurodevelopmental disorders.
“Historically, we’ve drawn more severe patients who may be eligible for a surgical approach, but because of the number of problems they have, surgery has not always been accessible to them,” says Johnston. “With Dr. Robinson, there’s a real collaboration in seeing these patients.”
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Gives the Gift of Life!
New Story has been published on https://enzaime.com/gives-gift-life/
Gives the Gift of Life!
As part of a 16-patient kidney exchange, Pamela Paulk’s kidney donation ensured her friend would receive a life-saving transplant.
Pamela Paulk, vice president of human resources at The Johns Hopkins Hospital and Johns Hopkins Health System, took her work to the next level June 22 when she joined an elite group of humanitarians and donated a kidney to a needy recipient.
Paulk was part of the four-state; 16-patient kidney exchange orchestrated by Robert Montgomery, M.D., Ph.D., chief of the transplant division at Johns Hopkins. It was the largest such multiple donor-recipient exchange to date. These exchanges—so-called domino kidney paired donation—enable multiple donors and recipients to interchange kidneys so that each recipient can receive the kidney that best matches his or her blood and tissue type, thus helping to ensure that the kidney will have the very best chance of long-term survival.
The ultimate beneficiary of Paulk’s generosity is Robert Imes, who received someone else’s kidney because of her donation. Imes is a painter at The Johns Hopkins Hospital whom Paulk got to know nine years ago during contract negotiations with Imes’ local union.
“We have been good friends for a long time,” says Imes.
Paulk says Imes’ kidney had failed three years ago but she only learned about it recently when he had to take 10 months off from work. She said Imes is a soft-spoken, kind and polite man, not the type who would complain a lot about his problems.
“When he returned to work,” says Paulk, “I asked him if there was anything I could do. He said, half joking, that if only I could give him a kidney. To his surprise, I told him I would—I don’t think he believed me.”
Imes says he was touched by her kindness. “Although, to be honest, I kind of shrugged it off. It is one thing to say you want to give a kidney and another to go through all the work it takes to actually donate one,” he says.
Paulk said she first thought of donating 10 years ago after meeting Montgomery at a party. They talked about the need for organs and that most people carried around a spare kidney that could save someone’s life. Montgomery even invited Paulk to witness a surgery, which she did.
“There is a magical moment in the procedure when you can actually see the kidney begin to function. It had a powerful effect on me,” says Paulk.
She was so moved by this experience that she became a supporter of kidney donation and began speaking at small events at Hopkins to raise awareness. The incongruity of a national kidney shortage when, theoretically, there is ample supply, compelled her to want to donate some day. She says she was just waiting for the right time.
“I felt like, if you believe in this, you have to be willing to do it yourself,” she says.
She says there was no defining “aha” moment when she decided she was ready. “I just reached a point where I thought that I should do it while my kidneys are healthy,” say Paulk. “And then I met Robert and I guess it was just time.”
Shortly after Paulk learned of Imes’ desperate need, she went to the Johns Hopkins Comprehensive Transplant Center and said she wanted to donate her kidney to Imes. Testing soon revealed the she and Imes did not have the same blood type and he could not receive her kidney. When she called Montgomery and asked if there was any way she could help Imes, he told about domino kidney paired donation. When he explained that this procedure not only guaranteed Imes the best kidney but would also benefit a lot more recipients, she did not hesitate to sign up.
“As strange as it might seem, my only real fear was the anesthesia,” says Paulk. “My mother was in nursing training back when anesthesia was very risky, and she always warned me against anesthesia.”
Paulk says what helped her make the final commitment was a conversation she had with her friend John Ulatowski, chairman of the Department of Anesthesiology.
“When I told him my fears, he laughed and said, ‘You’re about to have major surgery, and you’re concerned about the anesthesia? Get over it.’”
It might not have been the most comforting of responses, but Paulk says it did the trick.
Paulk joins roughly 100,000 Americans since 1988 who have generously donated a kidney to needy recipients, according to data from the United Network for Organ Sharing (UNOS) Web site. As encouraging as that sounds, 84,000 people in the United States alone are listed in 2009 by UNOS as needing a kidney. With only 6,000 people donating kidneys in 2008, we are a long way from eliminating this problem, says Montgomery.
Paulk says she is happy and at peace with her decision and plans to continue to be a vocal advocate for kidney donation.
“I am already telling everyone I see, do you know you have two kidneys and only need one?”
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I was scared, confused, quite irritable at times
New Story has been published on https://enzaime.com/scared-confused-quite-irritable-times/
I was scared, confused, quite irritable at times
Within five weeks, Dan Lineberger went from being to completely healthy to being told he had one week left to live. A drug toxicity from a dietary supplement caused fulminant hepatic (liver) failure, which lead to fulminant renal (kidney) failure. When his health began to deteriorate, Dan was spending Thanksgiving with family in Maryland. He was taken to Johns Hopkins where he met with a hepatologist and, eventually, the transplant team.
“I was scared, confused, quite irritable at times, but only in relation to the sheer torture of the effects of the liver and kidney failure,” Dan says. “I probably remained in denial until the night I got a call in my hospital room telling me they had a donor…I was glad to have a chance to live, but upset another young person had to pass away and her family changed forever.”
Within roughly five weeks I literally went from being 100% healthy and never having been to a hospital to being told I had a week to live.
-Dan, on learning he needed a transplant
Dan improved immediately after receiving his new liver.
While Dan was in the hospital, his family would come visit him, which boosted his morale more than anything else. A cell phone and laptop were important, enabling him to stay in contact with the outside world and his friends who lived several states away.
During the transplant process, Dan relied on the transplant coordinators, nurses and social worker. He suggests asking many questions and gathering as much data as possible to be more informed and understanding of what will happen. The social worker was helpful with things like disability, social security / medicare and COBRA paperwork.
One year after his transplant, Dan is grateful for every day.
While Dan recovers, he is actively taking college courses and hopes one day to be able to work in a medical-related field.
Since Dan’s experience, the dietary supplement that caused his liver and kidney failure has been recalled by the Food and Drug Administration. While he acknowledges that he is not quite at the level of health he was before the experience, Dan says, “Although I still have many limitations, I try to live every day as normal as I can. Mainly I am grateful to be alive and I owe both Hopkins and my donor’s family a great debt of gratitude.
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