Resources and support
Here at the Boston Children's Hospital Department of Neurosurgery, we consider you and your child integral parts of the care team—not simply recipients of care. We specialize in family-centered treatment, which means that from your first visit, you’ll work with a team of professionals who are committed to meeting your child's medical needs while providing emotional, psychosocial and educational support for your family.
At Boston Children’s Hospital, we know how difficult it is—for everyone in the family—when your child has an injury or disorder that may require neurosurgical care. We are always available to offer a second opinion for your child and to set up a consultation with one of our specialists. Please call 617-355-6008 or use our “Request an appointment” form to request a second opinion or consultation.
So that we can make the most accurate assessment possible, please be sure to have a full summary of your child’s initial diagnosis on hand. In addition, please gather as much of the following information as you can:
your child’s full name, address and date of birth
your (or, if you are not the child’s parent/legal guardian, the official guardian’s) full name, address, phone number and relationship to the child
your insurance provider’s name (for example, Blue Cross Blue Shield of Massachusetts), the name of the specific plan covering the child (for example, HMO Blue), and your subscriber identification number
the name, address and phone number of your child’s primary care physician
the name, address and phone number of your child’s referring physician (if different from the primary care provider)
your child’s diagnosis (or working diagnosis)
a list of your child’s presenting symptoms
previous x-ray, MRI or CT scan films
previous labwork reports
operative notes (if your child has undergone prior surgery)
Frequently Asked Questions
Q: How can I schedule an initial appointment with the Boston Children’s Neurosurgery Department?
A: You may request an initial appointment by calling 617-355-6008 or by using our “Request an appointment” form.
Please be sure you have the following information on hand:
- Your child’s full name, address and date of birth
- Your (or, if you are not the child’s parent/legal guardian, the official guardian’s) full name, address, phone number and relationship to the child
- Your insurance provider’s name (for example, Blue Cross Blue Shield of Massachusetts), the name of the specific plan covering the child (for example, HMO Blue), and your subscriber identification number
- The name, address and phone number of your child’s primary care physician
- The name, address and phone number of your child’s referring physician (if different from the primary care provider)
- A basic summary of your child’s symptoms and medical history, including any prior surgeries or treatment procedures
Q: What if I don’t have a referral for my child’s appointment?
A: If you don’t have a referral from your child’s primary physician, you may be asked to reschedule your initial neurosurgery appointment until the referral comes through.
Or, you will have the option to sign a waiver and pay a $250 waiver fee. (We recommend that you pay the waiver fee by check or credit card, as this will make stopping payment easier should you get a referral by the next business day after your child’s appointment. We are able to refund your waiver fee if you call us at 617-355-6015 with the necessary referral information by noon the next business day).
If you get a referral more than 24 hours after your child’s appointment, you will have to wait for your insurance company to pay for the claim. This may take up to 90 days. Your waiver fee will be automatically returned to you once the insurance company pays the claim. (Unfortunately, since this process is fully automated, we are unable to expedite the return of the fee.)
If, after 90 days, you still have not received your refund, please call our billing company at 1-800-853-8110.
Q: What should I bring to my child’s neurosurgery appointment?
A: When you make your initial appointment, a member of the Boston Children's Neurosurgery Department staff will go over everything you’ll need on the day of your visit. A good checklist of take-along items should include:
- The name of the doctor you will be seeing
- The name and floor of the Boston Children’s building you will be visiting
- The name and telephone number of your referring physician
- Co-payment for your insurance, if applicable
- Referrals or authorizations from your child's primary care doctor's office, if applicable
- All medical or personal records, such as x-rays or lab tests, pertaining to your child’s condition
- A list of your child's medications
- A list of questions you have for the doctor and staff (if appropriate for your child's situation and maturity, you may want to have him come up with questions that he is curious about)
- Your child's and your Social Security numbers (for insurance purposes)
- Any forms mailed to you by the Neurosurgery Department
- Books, games, snacks, formula, diapers, a change of baby clothes or other necessities (please do not bring food if your child must fast for testing)
Q: I would like copies of my child’s x-rays, MRIs or CT scans taken at Boston Children’s. How can I request this?
A: All requests for films taken at Boston Children’s need to go through the hospital’s film library. You may be charged a fee, depending on the number of copies you need. Please call the film library at 617-355-6283 to place an order.
Q: What if I have to reschedule my child’s neurosurgery appointment?
A: If you need to reschedule an appointment, please use the list below to call the designated number for your child’s neurosurgeon. (Please give at least 24 hours’ advance notice whenever possible.)
- Dr. Alan Cohen: 617-355-1484
- Dr. Liliana Goumnerova: 617-355-6364
- Dr. Joseph Madsen: 617-355-6005
- Dr. Mark Proctor: 617-355-2403
- Dr. Dody Robinson: 617-355-1485
- Dr. R. Michael Scott: 617-355-6011
- Dr. Edward Smith: 617-355-8414
- Dr. Benjamin Warf: 617-355-6005
Q: My child’s illness can be overwhelming for me sometimes. Does Boston Children’s offer a service that can help me get the information and additional support I may need?
A: Our Center for Families is dedicated to helping families find the information and resources they need to better understand their child’s medical condition and take part in their care. All patients, families and professionals are welcome to use the center's services at no extra cost. The Center for Families is open Monday through Friday from 8 a.m. to 7 p.m., and on Saturdays from 9 a.m. to 1 p.m. Please call 617-355-6279 for more information.
For brain tumor survivors
The majority of children and adolescents diagnosed with pediatric brain tumors will survive into adulthood. However, many will face physical, psychological, social and intellectual challenges related to their treatment and will require ongoing assessment and specialized care.
To address the needs of this growing community of brain tumor survivors, Dana-Farber/Boston Children's Hospital Cancer Center established the Stop & Shop Family Pediatric Neuro-Oncology Outcomes Clinic.
Today, the Outcomes Clinic monitors more than 900 pediatric brain tumor survivors of all ages. The clinic is a multidisciplinary program designed to address long-term health and social issues for families and survivors of childhood brain tumors. Some of the post-treatment services provided by the Outcomes Clinic include:
- MRI scans to monitor for tumor recurrences
- intellectual function evaluation
- endocrine evaluation and treatment
- neurological assessments
- psychosocial care
- hearing and vision monitoring
- ovarian dysfunction evaluation and treatment
- motor function evaluation and physical therapy
- complementary medicine
As a result of treatment for brain tumors, children may experience changes in their intellectual and motor function. Resources addressing these needs include the School Liaison Program and Back to School Program, which provide individualized services to ease children's transition back to school and maximize their ability to learn.
In addition to providing thorough and compassionate care, our Outcomes Clinic specialists conduct innovative survivorship research and provide continuing education for health care staff, patients and families.
For more information or to schedule an appointment, please call 617-632-2680.
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condition that develops during childhood (as opposed to being present at birth)
injection of a special dye into the blood vessels to make them visible on X-ray films
defect (often congenital) of blood vessels in the central nervous system, causing an abnormal “tangle” between the veins and arteries
defect in, or absence of, an opening in the body (for example, aortic atresia—the absence of the normal valvular opening into the heart’s aorta)
treatment for spasticity and pain caused by cerebral palsy. The pump, implanted by a neurosurgeon, delivers precisely measured dosages of the drug Baclofen directly to the child’s spinal fluid.
removal of a piece of tissue for sampling and analysis purposes
grouping of cells and blood vessels that acts as a protective shield between the brain and the blood flowing toward it
congenital defect of the blood vessels in the central nervous system, creating a compact mass of lesions
clear fluid, produced in the ventricles (cavities) of the brain, that circulates throughout the brain and spinal cord, serving to nourish and cleanse the nervous system while cushioning it from trauma
Choroid plexus cauterization
procedure to treat hydrocephalus, using an electrical wire and minimally invasive surgical tools to burn away tissue in the brain's first and second ventricles and reduce production of cerebrospinal fluid
research study designed to gather new information about specific conditions, treatments, diagnostics or devices
Computed Tomography (CT)
non-invasive imaging method, using special X-ray technology to take detailed, three-dimensional pictures of bones, organs and other tissues
condition that is present at birth
muscle shortening in the limbs, often occurring in neuromuscular conditions such as cerebral palsy
tear within the wall of a blood vessel; may also refer to spinal cord dissection, a tear in the spinal cord
leakage and accumulation of fluid (for example, a subdural effusion, the accumulation of cerebrospinal fluid or pus underneath the brain’s outer lining)
device (usually a small medical disk with attached wires) that transmits electric current to measure or record specific activity in the brain or other bodily tissue
procedure that records and analyzes brain wave patterns through electrodes placed on the scalp, transmitting data to a computer
Endoscopic third ventriculostomy
minimally invasive procedure that uses an incision in the third ventricle of the brain to drain excess cerebrospinal fluid, providing an alternative to shunt placement for some children with hydrocephalus and spina bifida
the brain’s natural creation of electromagnetic energy through its living cells
small sensor placed into the epidural covering of the brain to monitor intracranial pressure
sophisticated radiation therapy tool that delivers high-energy bursts of radiation to a very specific area, sparing the healthy surrounding tissue
using a grading system that measures the progression of tumors, a high-grade tumor is the most malignant and aggressive type
pressure naturally occurring within the skull and in the balance of cerebrospinal fluid and brain tissue
thin, flexible tube inserted into one of the brain’s ventricles (cavities) for the purpose of measuring intracranial pressure
machine using high-energy x-rays to effectively attack and shrink cancerous tumors
using a grading system that measures the progression of tumors, a low-grade tumor is the least aggressive type
Magnetic Resonance Imaging (MRI)
technology that uses magnets, radio waves and computers to produce high-resolution images of bones, organs and other tissues
Minimally invasive techniques
medical and surgical procedures that use miniaturized tools and cameras or telescopes, resulting in less pain, less scarring, and a quicker recovery time for patients
imaging technique that uses a needle inserted into the spinal canal to inject dye that is visible in real time, allowing the space around the spine to be photographed on X-ray film
combined bodily tissues that transmit, record and “decode” electrical and chemical messages
Partial Dorsal Rhizotomy (PDR)
a specialized neurosurgical procedure used to treat spasticity caused by cerebral palsy. The surgery involves selectively cutting a section of the problematic nerve roots in the spinal cord.
space between the abdomen’s organs and the abdominal wall
space surrounding the lungs
Positron Emission Tomography (PET)
imaging technique that uses an injected isotope (a radioactive molecule); once the isotope begins to break down, it sets off a molecular reaction that allows for 3-D visualization of bodily processes
condition that grows worse in severity over time
Proton beam therapy
use of a beam of protons (subatomic particles) to efficiently “blast” tumors while sparing surrounding, healthy tissue
Radiation therapy or radiotherapy
use of radiation to control and stop the spread of cancerous cells
thin tube installed under the skin to drain off excess fluid and reduce pressure
screw or bolt inserted into the space between the skull’s arachnoid membrane and the brain’s cerebral cortex; used to measure intracranial pressure
narrow field within a certain medical discipline
a clot within a blood vessel, impeding the flow of blood through the body’s circulatory system
Transient ischemic attack (TIA)
sudden change in the supply of blood to a particular part of the brain, causing neurological symptoms that last for less than 24 hours; also referred to as a “mini-stroke”
one of ten cranial nerves, and perhaps the most important; originates in the medulla oblongata of the brain and furnishes nerve fibers that help control the throat, lungs, heart, esophagus and most of the intestinal tract
one of four cavities in the brain, connecting with the central spinal cord canal