Neurosurgical Patient Stories
The goal of this AANS public outreach project is to help educate people about the role of the neurosurgeon in treating a wide range of medical conditions and diseases. The following are a few of the heartwarming stories patients have shared with the AANS. If you have a compelling story that you would like to share with readers, please click on Submit your Story.
Neurosurgeon: Alfredo Quinones-Hinojosa, MD, FAANS; Johns Hopkins Bayview Medical Center, Baltimore
Patient: Claire Snyman, 36, Colloid Cyst
In 2009, Claire Snyman began to notice she was having difficulty with her short-term memory. Things that she normally had no problem remembering became harder to recall. One day in 2010, at the age of 34, she woke to the room spinning. Claire was experiencing her first vertigo attack. Two days later, she developed her first migraine. Thinking this was the symptoms of a virus, or from working too hard, she contacted her doctor for advice. Worried that her symptoms might be caused by meningitis, her doctor suggested she go to the emergency room to get checked out, where she ultimately found out about her brain tumor for the first time. To read more about her story, click here.
Neurosurgeon: Costas G. Hadjipanayis, MD, PhD, FAANS, Winship Cancer Institute at Emory University, Atlanta
Patient: Jennifer Giliberto, 40, Astrocytoma
Shortly after having her second child, Jennifer Giliberto, then 32, began noticing that she started fumbling things more than usual, but assumed it was nothing serious. However, in February 2006, after shattering a glass in her kitchen, Giliberto realized that this problem had been going on for too long and called her primary-care doctor. An MRI scan later revealed a lesion on her brain, although at that time the cause was unknown. When Giliberto and her family moved to a new city, she later followed up with the care of a new doctor in Atlanta. In June 2007, she was officially diagnosed with a brain tumor; and in August 2008, Giliberto had a craniotomy to remove a Grade II Infiltrating Astrocytoma from her right temporal lobe. Giliberto, a writer and photographer, details her journey on her blog site, where she describes what life is like after recovering from a brain tumor. To read more about her story, click here.
Neurosurgeon: Charles B. Wilson, MD, FAANS(L), University of California, San Francisco
Patient: Dawn Evans, 48, Colloid Cyst
In 1973, after a series of grand mal seizures sent seven-year-old Dawn Evans to the hospital, doctors declared her seizures to be developmentally related. However, in 1980, an agonizing headache sent her back to the hospital, and she underwent brain scans that revealed a small spot on her brain below the third ventricle. Evans and her family eventually traveled to San Francisco to meet with Charles B. Wilson, MD, FAANS(L), who performed her colloid cyst removal in August of that year. Forty-two years after the seizures first began, Evans, a legal assistant, now 48, enjoys good health and lives with her family in Oregon. To read her full story, click here.
Neurosurgeon: Vikram Prabhu, MD, FAANS, Loyola University Medical Center, Maywood, Ill.
Patient: Anne Jenisch, 24, Craniopharyngioma
In late 2012 at the age of 23, Anne Jenisch, a cardiac ICU nurse at Loyola University Medical Center in Maywood, Ill., was diagnosed with craniopharyngioma, a type of brain tumor that slowly forms near the pituitary gland over time. The pituitary gland, although small in size, secretes a variety of hormones that control many of the body's important functions. Because of the position of Anne's tumor, it was preventing the proper drainage of cerebral spinal fluid, resulting in severe headaches for her on a consistent basis. With various setbacks delaying Anne's recovery, she found herself in the operating room a total of three different times. To read the full story from Anne's point of view, click here.
Neurosurgeon: Craig Johnson, MD, FACS, and Raymond C. Truex Jr., MD, The Reading Hospital and Medical Center, Reading, Pa.
Patient: Denice DeAntonio, age 44, Hemorrhagic Stroke
At the age of 42, Denice DeAntonio, a Health Occupations teacher at Pottstown High School, Pottstown, Pa. and an RN, suffered a hemorrhagic stroke. Denice had no known risk factors or family history of stroke. While stroke in general affects more than 795,000 people every year, the vast majority of cases (87 percent) are ischemic, with just 10 percent attributed to intracerebral hemorrhage, and 3 percent attributed to subarachnoid hemorrhage. Stroke is a leading cause of serious long-term disability, with an estimated 5.4 million stroke survivors currently alive today.
Click here to read Denice’s compelling story in her own words.
Neurosurgeon: Gary Magram MD, and Meredith Woodward, MD, Children’s Hospital Central California, Madera, Ca.
Patient: Luke Masse, age 2, Subdural Hematoma
On May 3, 2009, 9-month-old Luke Masse suffered what could have been a fatal traumatic brain injury (TBI) from a fall – a subdural hematoma. Luke was doing what millions of babies do without incident – standing and exploring the early stages of walking. In Luke’s case, he was standing on a carpeted surface when he fell and hit his head.
A subdural hematoma occurs when a blood clot forms underneath the skull and underneath the dura (the tough covering that surrounds the brain) but outside of the brain. While subdural hematomas are far more prevalent in people ages 65 and older, in children ages 4 and younger TBI is the primary cause of fall-related death and severe injury.
Kimberly Masse, Luke’s mother, was so profoundly affected by Luke’s injury and survival that she founded the Pediatric Brain Injury Foundation in honor of Luke and to help other parents. Click here to read Luke's compelling story in his mother Kimberly's words.
Neurosurgeon: H. Hunt Batjer, MD, FACS, and Bernard M. Bendok, MD, FACS, Northwestern Memorial Hospital, Chicago, Ill.
Patient: Janet Cahill, age 54, Cerebral Aneurysm
At the age of 52, Janet Cahill, a clinical research nurse specialist at Northwestern Memorial Hospital, was diagnosed incidentally with a cerebral aneurysm when she was undergoing an MRI for worsening multiple sclerosis symptoms. It is estimated that between 0.4 percent and 6 percent of people may harbor a cerebral aneurysm. Although most unruptured cerebral aneurysms go undetected, acute rupture resulting in subarachnoid hemorrhage can have devastating consequences. Observation is considered a reasonable option if the aneurysm is very small or in a location which is felt to present a low risk of growth or rupture. Repeated testing over time may be recommended and the risks of aneurysmal hemorrhage remain.
In Janet's case, the size and proximity of the aneurysm to the brainstem necessitated surgical intervention. In April 2008, Janet underwent surgery to clip the aneurysm.
Click here to read Janet's compelling story in her own words.
Neurosurgeon: Gail L. Rosseau, MD, Chicago Institute of Neurosurgery and Neuroresearch, Chicago, Ill.
Patient: Lisa Klok, age 25, Chiari Malformation
Lisa Klok has a condition called Chiari malformation. Since the age of 6, Lisa suffered from what doctors diagnosed as "classic" migraines. She lived with these headaches for 18 years until they became unbearable. The symptoms of Chiari can be very similar to a host of other conditions, making it challenging to diagnose. Patients with syringomyelia and Chiari Type 1 often present with an intense, burning-type nerve pain and/or chronic headaches, among other symptoms.
The prevalence in the general population has been estimated at slightly less than one in 1000. Chiari Type 1 malformation occurs during fetal development and is characterized by downward displacement by more than four millimeters, of the cerebellar tonsils beneath the foramen magnum into the cervical spinal canal. This displacement may block the normal pulsations of cerebrospinal fluid (CSF) between the spinal canal and the intracranial space. This form of Chiari malformation may be associated with syringomyelia/hydromyelia. It is diagnosed more commonly in adolescents or adults.
Surgical treatment of Chiari depends on the type of malformation. The goal of surgery is to relieve or stop the progression of the syrinx and/or symptoms by decompressing nerve tissue and restoring normal flow of CSF around and behind the cerebellum. Decompression provides more space for the brain stem, spinal cord, and descended cerebellar components. Click here to read Lisa's compelling story in her own words.
Neurosurgeon: H. Hunt Batjer, MD, FACS, Northwestern Memorial Hospital, Chicago, Ill.
Patient: Jody Bunzol, age 28, Moyamoya disease
At the age of 27, Jody Bunzol was diagnosed with a medical condition called Moyamoya disease. In May 2008, she experienced four transient ischemic attacks (TIAs) in the course of the month. A TIA is a temporary cerebrovascular event that leaves no permanent damage. However, TIAs can be a precursor to stroke, and in fact, about 30 percent of all people who suffer a major stroke experience a prior TIA, and 10 percent of all TIA victims suffer a stroke within two weeks.
Moyamoya disease is a progressive disease of the carotid arteries and their major branches that can lead to irreversible blockage. The name comes from the Japanese word for a "puff of smoke" due to the appearance of the lesions that form. In fact, it affects people of Japanese origin far more commonly than the rest of the population. It is a disease that tends to affect children and adults in the third to fourth decades of life. Children with the disease may have strokes, TIAs, slowly progressive cognitive decline, seizures, or involuntary movements of the extremities. Adults more commonly experience intracranial hemorrhages as a result of the disease.
Jody was admitted to the hospital for a series of tests on June 13, 2008 and diagnosed the next day. Due to the complexity and lack of blood flow to her brain, she had to undergo two separate surgeries. The first surgery was on the left side of her brain on June 24 and the second surgery was on July 22. Extracranial-intracranial bypass (ECIC) surgeries were performed to increase the blood flow to her brain in the quickest and most effective manner and reduce her risk of suffering a major stroke. Click here to read Jody's compelling story in her own words.
Neurosurgeon: Gary K. Steinberg, MD, PhD, Stanford University Medical Center, Stanford, Ca.
Patient: Patti A. Gilstrap, age 49, Cavernous Malformations.
Patti Gilstrap has experienced three brain hemorrhages caused by cavernous malformations and three surgeries to remove these malformations. Her saga with cavernous malformations began in late 1987 when she was in her 20s. She experienced her first seizure, one of the most common symptoms caused by this condition, followed by surgery in early 1988.
Cavernous malformations are clusters of abnormal, tiny blood vessels, and larger, stretched-out, thin-walled blood vessels filled with blood in the brain. These blood vessel malformations can also occur in the spinal cord, the covering of the brain (dura), or the nerves of the skull. Cavernous malformations range in size from less than one-quarter inch to 3-4 inches.
Angiograms cannot visualize cavernous malformations because blood flows through these types of lesions slowly. Thus, magnetic resonance imaging (MRI), with and without contrast and with gradient echo sequences remains the best means of diagnosing cavernous malformations. MRI scans may need to be repeated to analyze a change in the size of the cavernous malformations, recent bleeding, or the appearance of new lesions. Click here to read Patti's compelling story in her own words.
Neurosurgeon: Bruce A. Kaufman, MD, FACS, Children's Hospital of Wisconsin, Milwaukee, Wis.
Patient: Jordyn Landowski, age 5, Spina Bifida, Hydrocephalus, Chiari Type 2 Malformation
Jordyn Landowski was diagnosed with spina bifida at 17-weeks gestation. Her mother Sandi was told to terminate the pregnancy at the clinic she was attending. Today, Jordyn is a sweet, little girl with a remarkably upbeat attitude, despite physical challenges including undergoing 12 surgeries to date.
Spina bifida occurs during the third and fourth weeks of pregnancy when a portion of the fetal spinal cord fails to properly close. As a result, the child is born with a part of the spinal cord exposed on the back.
About 80 to 90 percent of children with spina bifida develop hydrocephalus. Hydrocephalus is a condition in which excess cerebrospinal fluid (CSF) builds up within the ventricles (fluid-containing cavities) of the brain and may increase pressure within the head. Most children will require a ventricular shunt to control the build-up of fluid.
Chiari type 2 malformation is characterized by downward displacement of the medulla, fourth ventricle, and cerebellum into the cervical spinal canal, as well as elongation of the pons and fourth ventricle. This type occurs almost exclusively in patients with myelomeningocele, a type of spina bifida. Click here to read Jordyn's compelling story in her mother Sandi's words.
Neurosurgeon: Alan R. Cohen, MD, FACS, Rainbow Babies & Children's Hospital, Cleveland, Ohio
Patient: Morgan McCracken, age 7, Acute Epidural Hematoma
It was just a bump on the head from a front yard game of baseball, but this bump could have been tragic for Morgan McCracken. Morgan, a 7-year-old Ohio girl is now recovering from the same kind of brain injury that led to the recent death of actress Natasha Richardson after a fall on a beginner's ski slope in Canada. Just like Richardson, Morgan sustained an epidural hematoma, and in fact, it was news of Richardson’s tragic injury that alerted her parents to the potential severity of Morgan’s injury. Morgan sustained her injury on March 17; just one day after the actress was injured.
An epidural hematoma is a blood clot between the skull and the dura, the tough tissue covering the brain. Many patients experience a lucid period and appear fine before rapidly deteriorating. Initially, there are often no obvious physical signs of injury, or only minor signs, such as a bump. Cognitive signs of injury appear later, and often, come on quite rapidly. Timely treatment of epidural hematomas is critical for outcome, and literally, can make the difference between life and death. Click here to read Morgan's compelling story in her mother's words.
Neurosurgeon: Marion L. Walker, MD, Primary Children's Medical Center, Salt Lake City, Utah
Patient: Azalea E. Butler, age 4, Chiari Type 1 Malformation and Syringomyelia
Azalea Butler is an adorable 4-year-old with Noonan Syndrome, which has caused a multitude of health conditions including Chiari type I malformation and syringomyelia, bone abnormalities, and heart disease, among others.
Noonan syndrome is a genetic disorder that prevents normal development in various parts of the body. Characteristics may include unusual facial features, short stature, heart defects, chest deformities, eye problems, other physical abnormalities, and developmental delays. The incidence of Noonan syndrome is estimated at 1 case in 1,000 to 2,500 live births.
Chiari type I malformation occurs during fetal development and is characterized by downward displacement by more than four millimeters, of the cerebellar tonsils beneath the foramen magnum into the cervical spinal canal. This form of Chiari malformation may be associated with syringomyelia. When cerebrospinal fluid (CSF) forms a cavity or cyst within the spinal cord, it is known as syringomyelia. As the fluid cavity expands, it can displace or injure the nerve fibers inside the spinal cord.
Marion L. Walker, MD, operated on Azalea for her Chiari and syringomyelia, in August 2005 and August 2007 at Primary Children’s Medical Center. Click here to read Azalea's compelling story in her mother Jazmin's words.
Neurosurgeon: Roger Hartl, MD, New York-Presbyterian Hospital, Weill Cornell Medical College
Patient: Harold F. Marcus, age 62, Lumbar Spinal Stenosis
Like an estimated 400,000 other Americans, most over the age of 60, Harold Marcus was suffering for several years from the symptoms of lumbar spinal stenosis. This condition is a narrowing of the spinal canal which compresses the nerves traveling through the lower back into the legs. Lumbar spinal stenosis may or may not produce symptoms, depending on the severity of the case. The inflammation of the nerves due to increased pressure, rather than the narrowing of the canal, causes noticeable symptoms to occur.
Harold was treated for a period of time through conservative, nonsurgical methods. After awhile, like many patients with chronic spine-related leg pain, he decided to look at other options. Harold was considered a good candidate for back surgery because his back and leg pain was limiting his normal activity and impairing his quality of life; he was having difficulty standing or walking; medication and physical therapy had proven ineffective; and he was in reasonably good health. After contemplating his choices, Harold decided to have back surgery, which was performed on December 7, 2007. Click here to read Harold's story in his own compelling words.
Neurosurgeon: Jonathan A. White, MD, University of Texas Southwestern Medical Center, Dallas, Texas
Patient: Les H. Duncan, age 59, Cavernous Angioma
Les Duncan has a genetic condition called cavernous angioma. It is the same condition that was attributed in part to the death of track star Florence Griffith-Joyner, and is related to the condition experienced by Senator Tim Johnson in December 2006, arteriovenous malformation (AVM). Cavernous angimoas are also referred to as cavernomas, cavernous malformations, cavernous hemangiomas, cerebrovascular malformations, or intracranial vascular malformations.
The incidence of cavernous angioma is estimated at one in 100-200 people. A minimum of 30 percent of people with cavernous angioma will develop symptoms. At least 20 percent of those with cavernous angioma have the familial form of the illness.
Les underwent a craniotomy to remove a cavernous angioma in the pons area of his brainstem on February 9, 2006. This was not the first time he experienced the effects of this genetic condition. Les has survived four brain hemorrhages and two brain surgeries in the past 18 years of his life. Click here to read Les' compelling story in his own words.
Neurosurgeon: William Chandler, MD, University of Michigan, Ann Arbor, Mich.
Patient: Bradley Thomas Horton, benign brain tumor
Bradley Thomas Horton was first diagnosed with a brain tumor on his 13th birthday, 27 years ago. His family was told it was cancer, but a second opinion and biopsy revealed that it was a very large, benign pineal region mass. It has been a long road of recovery and renewal for Bradley. He has undergone a total of 14 procedures over the course of 17 years, primarily involving shunt placement and revisions, caused in part by the size of the tumor, fluid build-up, and medication complications. He survived four comas in 1997, and feels lucky to be alive. His experiences have helped him reach a point in his life in which his future mission is clear: advocating for the rights of other people with life-altering disabilities. Click here to read Bradley’s compelling story in his own words.
Neurosurgeon: Jeffrey Elias, MD, University of Virginia Health System, Charlottesville, Va.
Patient: Christine Coles, age 43, Parkinson’s disease
Christine Coles was diagnosed with Parkinson’s disease (PD) at the age of only 39. While PD usually develops after the age of 55, the disease may affect people in their 30s and 40s, such as actor Michael J. Fox, diagnosed at age 30. The majority of PD patients are treated with medications to relieve the symptoms of the disease, but with varying degrees of effectiveness. After being treated for a few years with medication therapy, Christine’s neurologist recommended that she consider deep brain stimulation (DBS) to help alleviate her tremors.
Christine underwent subthalamic nucleus DBS surgery on June 23, 2005. DBS is presumed to help modulate dysfunctional circuits in the brain so that the brain can function more effectively. This is accomplished by sending continuous electrical signals to specific target areas of the brain, which block the impulses that cause neurological dysfunctions, such as tremors, slowness, and rigidity. Christine feels that DBS has made all the difference in the world for her. Click here to read Christine’s compelling story in her own words.
Neurosurgeon: Ralph G. Dacey Jr., MD, Washington University School of Medicine, Barnes-Jewish Hospital, St. Louis, Mo.
Patient: Elizabeth Erman, age 38, Ophthalmic Segment Internal Carotid-artery Aneurysm
In mid-September 2004, two weeks before her wedding, Elizabeth Erman was at work and suddenly lost her right field of vision. One week before her wedding, she had an MRI, which didn’t show anything abnormal. After returning from her honeymoon, she went to see a neurologist. The CT scan revealed a 6 mm aneurysm behind her left eye at the intersection of the carotid and ophthalmic arteries.
In January 2005, she was scheduled to undergo an endovascular coiling procedure to remove the unruptured aneurysm. However, this could not be done because the neuroradiologist determined that it would have caused a loss of vision. So Elizabeth had a difficult decision to make – take a "wait and see" approach or undergo surgical clipping and a craniotomy. After living with this anxiety-producing situation for several months, Elizabeth underwent surgery on April 25, 2005. Click here to read Elizabeth’s compelling story in her own words.
Neurosurgeon: Monica C. Wehby, MD, Emanuel Children’s Hospital, Portland, Ore.
Patient: Linnea Winters, age 9, Spina Bifida
Linnea Winters was born on June 9, 1997, with spina bifida, hydrocephalus, and club feet. According to the American Association of Neurological Surgeons (AANS), there are currently an estimated 70,000 Americans living with spina bifida. Linnea has a lot of fun, despite the fact that she is living with a physical condition that challenges her every day. It is because of her good nature, tenacity, and support of her family and neurosurgeon, Monica Wehby, MD, that she has been able to live as normal a life as possible. Click here to see this press release.