About Your Craniofacial Health Care Team

Craniofacial treatment teams will often have large groups of specialists and doctors in many different areas of treatment.  Who is on the team may be different at clinics or hospitals in different places. The teams will probably be different for children or adults. Not all patients will need to see all specialists.

Below is a list of types of specialists you may meet when being treated by a craniofacial team.  Each entry gives the name of the type of specialist and the name of specialty. If you are searching for more information, you might need both of these names. Sometimes a common name for that type of doctor is also included. This list explains what they usually do for patients, although you should ask your own doctors what to expect from your own treatment team.

 

Airway Clinic  [Breathing Specialists]

Brief: Airway Clinics can help patients who sometimes have trouble breathing or who tend to get lung infections, such as pneumonia or bronchitis. They can help with safe options for breathing during surgery, during other treatments, while asleep, or other times.

Detailed: Airway Clinics are specialty clinics serving patients with problematic obstructive upper airways.  They typically provide a consultation service for the evaluation and management of individuals with a history of potential or failed endotracheal intubations or endoscopies.  They can treat a variety of diagnoses ranging from sleep apnea to amyloidosis, as well as the broad spectrum of the craniofacial dysostoses.  The latter include both acquired and congenital diseases of adults and children.  The goal of such clinics is typically to reduce the known risks for individuals with airway complications.

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Audiologist (Audiology) [Ear Doctor or Hearing Doctor]

Brief: The audiologist, or hearing doctor, will do tests of children with craniofacial conditions to see if they are having trouble with their hearing. It is important to find hearing problems as soon as possible. When possible, the hearing problem will be treated; when not possible, the child can be helped to learn other ways to communicate and understand other people.

Detailed: Audiologists evaluate hearing.  Individuals with craniofacial conditions are at increased risk for ear and hearing problems, so hearing should be carefully monitored throughout childhood and adulthood, starting as early as one month of age.  Audiologic assessment can include impedance studies to assess middle ear functioning, auditory brainstem response (ABR), computerized hearing assessment, hearing aid evaluation and fitting, as well as central auditory processing testing.  Untreated hearing loss can lead to problems with speech and language development, psychological and social development, and educational and work performance.  Some hearing losses can be addressed by the otolaryngologist with medication management or surgery.  When non-treatable hearing problems occur, diagnosis and hearing aid fitting by the audiologist at an early age can help with the development of communication and language skills.

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Craniofacial Team Coordinator

Brief: The Craniofacial Team Coordinator is the person who will help make sure you are seeing the right type of doctor at the right time. The Coordinator can also help you decide who is the best person on your team to ask about questions you might have about your treatment or health concerns.

Detailed: The team coordinator is typically the main coordinator of all service providers.  Craniofacial teams involve a complex set of specialists, and individual patients all have individual needs.  The team coordinator is responsible for connecting patients with the appropriate services during their visits, and coordinating communication between team members as well as patients.

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Dentist (Dentistry)

Brief: It is important for patients with craniofacial conditions to see their dentist on a regular basis. With children, the dentist will be able to tell if teeth are coming in the way they should and at the right times. For both adults and children, the dentist will also help make sure the mouth stays healthy, making sure that people can eat a healthy diet. Eating healthy can help with many other problems. The dentist will also work with the other members of your team to help them with treatments and concerns about your mouth and its health.

Detailed: Individuals with craniofacial differences often have unique dentistry needs.  The dentist on the craniofacial team has special skills in providing diagnosis and treatment for the oral health needs of individuals with craniofacial differences.  Primary and young permanent teeth are carefully observed to detect any absent or delayed development.  In addition to periodic oral health evaluations, introduction of preventive measures, and the detection and treatment of dental caries and space problems, the coordination of related services of other team members are also part of the responsibilities of the dentist. 

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Genetic Counselor (Genetics)

Brief: Some craniofacial conditions can be passed down from parent to child. The genetic counselor will help parents who have concerns about having more children or patients with craniofacial conditions who are considering having their own children.

 Detailed: Some craniofacial conditions may be inherited.  Although in some cases it is difficult to tell the mechanism by which the condition occurred, at other times the geneticist can sort out a constellation of features suggestive of a particular syndrome.  Some syndromes include less obvious yet serious medical complications.  Geneticists can help to identify individuals that have genetic risks for additional medical conditions in addition to their craniofacial condition.  This has implications both for families deciding to have other children, as well as the affected children who eventually might want to have children of their own.  Genetic counseling is available to discuss these implications with the families and advise them regarding the chance of recurrence. 

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Neurosurgeon (Neurosurgery)  [Brain Doctor, Spine Doctor or Nerve Doctor]

Brief: Some craniofacial conditions can put pressure on the brain or other nerves. This type of pressure can cause pain or numbness or other problems. A neurosurgeon can help to relieve this pressure. The neurosurgeon can also help to tell the difference between some types of nerve, spine or brain problems that sometimes show up in patients with a craniofacial condition. The neurosurgeon will be able to tell if surgery is necessary now, can be postponed, or might not be necessary at all.

 Detailed: Individuals with craniofacial differences may be seen by the neurosurgeon specializing in craniofacial surgery.  Neurosurgeons specialize in the brain, spinal cord, and nerves, and may coordinate surgical interventions for conditions such as craniosynostosis or Chiari malformations.  Individuals with some craniofacial conditions may have increased intracranial pressure and require the Detailedise of the neurosurgeon.  There may be co-morbid neuropathologies associated with some conditions that will require monitoring and treatment.  In addition, many abnormal head shapes occur because of deformational changes that are sometimes difficult to distinguish from abnormalities arising because of a pathologic process.  The neurosurgeon, along with other specialists, will help to confirm an accurate diagnosis and design a treatment plan.

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Nurse Coordinator

Brief: The craniofacial nurse coordinator is a special kind of nurse trained to work with patients who have craniofacial conditions. They help patients with day-to-day needs, like eating and sleeping enough. They also can be a big help in helping talk with doctors, asking questions, and being a support in many ways.

Detailed: The nurse coordinator is typically a registered nurse with a specific Detailedise in treating individuals with craniofacial differences.  They typically will monitor routine health needs, review medications, and ensure that patients are eating and sleeping adequately.  Importantly, they serve as a liaison between the family and craniofacial team.

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Nutritionist (Nutrition) / Dietician (Dietetics)

Brief: Patients with craniofacial conditions might not be able to eat the same foods as the rest of their family, or they might need the food prepared in special ways. The dietician or nutritionist can help plan menus and how to prepare food so that everyone is getting the kind of nutrition they need to stay healthy.

Detailed: Individuals with craniofacial differences may have unique challenges in eating and adequate weight gain, particularly during early childhood.  Craniofacial team nutritionists perform nutritional screening and assessment for each patient.  Education is provided when necessary regarding the appropriate choice of foods needed to meet nutritional requirements, and recommendations may be made regarding routes and forms of food consumption.

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Ophthalmologist (Opthalmology) [Eye Doctor] / Occuloplastic Surgeon (Occuloplastic Surgery) [Eye Surgeon]

Brief: The ophthalmologist or eye doctor helps patients in two ways. First, they can help with concerns related to vision – how well you see and what you might need to see better. They can also help with how your eyes look. Sometimes this will mean doing exercises that work with the muscles around the eyes, and sometimes surgery is needed.

Detailed: Craniofacial differences can affect an individual’s vision or the position of their eyes.  Ophthalmology and occuloplastic surgery are services that are often available to treat any problems with vision or eye alignment related to craniofacial differences, and to assist in the treatment of deformities around the eyelids. Opthalmologists can assess and treat vision, the action of the muscles controlling eye movement, the health of the optic nerve and the protection of the eye by the bony brow.   In most individuals with craniofacial disorders, a baseline ophthalmologic examination will be performed and a repeat examination will be carried out as necessary for follow-up of after any craniofacial surgery. 

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Oral & Maxillofacial Surgeon (Oral & Maxillofacial Surgery) [Mouth Surgeon]

Brief: Oral and maxillofacial surgeons help treat problems with the teeth, jaws, and lower face. This could mean help with chewing, swallowing, muscle pain in the jaw, or helping to make the face look more balanced. For example, this type of surgeon would be involved with repairing a cleft palate.

Detailed: Oral and maxillofacial surgeons specialize in the surgical treatment of the jaw, teeth, and lower face.  Many craniofacial conditions involve these areas and thus oral and maxillofacial surgeons work in tandem with orthodontists and other surgeons to improve facial function and appearance.  Common goals are to create facial symmetry, properly align the jaws for functional use, and ensure proper and/or functional placement of teeth.  Cleft palate repair involves special consideration of possible side effects of restricted upper jaw development and care for dentoalveolar surgical problems, such as the closure of oronasal fistulae and the removal of malformed or nonfunctional teeth in the cleft region typically involve the assistance of an oral and maxillofacial surgeon.  Patients with craniofacial differences often have associated jaw deformities or abnormalities of the temporomandibular joint (TMJ).  Oral and maxillofacial surgeons and plastic surgeons who specialize in craniofacial surgery often share in the treatment of these complex problems.

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Orthodontist (Orthodontics) [Braces Doctor]

Brief: Like oral and maxillofacial surgeons, orthodontists help treat problems with the teeth and jaws. Orthodontists do not use surgery for their treatments, but usually use braces and related tools to move teeth or jaws to a position that helps the patient’s mouth work better for chewing and swallowing. The orthodontist also helps decide whether surgery is needed.

Detailed: Orthodontists are members of craniofacial teams who manage the non-surgical treatment of the position of the jaw.  The goal of orthodontic treatment is to provide dental placement which is as functional as possible for health and appearance.  Correction commonly consists of movement of the teeth with braces and specialized oral appliances, and possible repositioning of the upper and lower jaw bony segments in order to establish a harmonious relationship between the mandible and maxilla.  The orthodontist also works with the plastic or oral surgeon in treatment planning for orthognathic surgery.  Orthodontists are integral members of the craniofacial team.  They diagnose dental and skeletal anomalies and provide Detailedise in aesthetic analysis of complex facial differences.  Together with the plastic surgeon and oral and maxillofacial surgeon they will formulate a treatment plan to address severe functional and cosmetic concerns.

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Otolaryngologist (Otolaryngology) [Ear Doctor] / Otorhinolaryngologist (Otorhinolaryngology) / ENT Specialist [Ear Nose & Throat Doctor]

Brief: An ear, nose and throat doctor can help find and treat problems with eyes and vision, ears and hearing, as well as speech and breathing. Sometimes they will also treat more general problems with the neck.

Detailed: The otolaryngologist (also known as an ear, nose, and throat, or “ENT” doctor) is a specialist in the medical and surgical treatment of ear, nose, and throat problems.  Individuals with craniofacial differences often have difficulties in one or all of these three areas.  Defects in the airway, middle ear and/or hearing, and speech deficits are all complaints that may be managed by an otolaryngologist.  Otolaryngologists typically assess and monitor an individual’s hearing, ears and ear formation, feeding, breathing, and speech development.  Some craniofacial differences also have a component of neck abnormalities that may be managed by this specialist. 

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Pediatrician (Pediatrics) [Children’s Doctor]

Brief: Because many craniofacial conditions are genetic (passed down from parent to child), often the first person to realize there is a problem will be the child’s doctor or pediatrician. The pediatrician is specially trained to work with children and to keep in mind what is best for the child. They can help the craniofacial team decide what treatments are best for the whole child, keeping in mind the rest of the body and how the child is growing or maturing in other areas.

Detailed: A large number of craniofacial conditions are congenital, identified during childhood, and thus the pediatrician reflects an important member of many craniofacial teams.  The team pediatrician serves as an advocate for the patient if they are a child.  They will frequently monitor a child’s growth, development, and general health and will be open to any questions regarding more general developmental issues. 

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Plastic and Reconstructive Surgeon (Plastic and Reconstructive Surgery)

Brief:  Plastic and reconstructive surgeons work with changing the shape of skin and muscles as well as bones and other tissues. Surgeries of this sort often are broken down into several small surgeries, rather than doing everything at once. Plastic and reconstructive surgeries can change both how a patient looks as well as what sort of things they can do in their daily life. When surgery is needed, plastic and reconstructive surgeons also help to decide if surgery should happen soon or should wait.

Detailed: Plastic and reconstructive surgeons who are members of craniofacial teams have specialized training in the treatment of craniofacial differences.  They have an Detailedise performing plastic and reconstructive surgery on both the soft tissues of the face and the bones of the face and skull (including skin, muscles, nerves, blood vessels, and organs such as the nose, eyelids, mouth, and ears).  Procedures are often multi-step, with a goal towards a functional and cosmetically acceptable outcome.  Surgeons may implant appliances that must be adjusted by patients over time in order to make gradual changes in facial structure.  Plastic and reconstructive surgeons will commonly work with other surgical specialists, such as the oral surgeon or neurosurgeon, to achieve a maximal outcome.  Some conditions (such as cleft lip or palate) are likely to be repaired quite early, while other surgical interventions may be delayed until bone growth has slowed or ceased.

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Prosthodontist (Prosthodontics)

Brief: Prosthodontists are dentists that are Detailed in making devices to go in the mouth. Sometimes a device will let a patient’s mouth work better while they are waiting for surgery, such as with children who are growing. Sometimes surgery is not possible for some reason, and a device might make chewing or swallowing much easier.

Detailed: Prosthodontists have an Detailedise in planning and fabricating intraoral prosthetics, especially obturators to close defects that surgery cannot close.  Some patients may require a dental prosthesis that can be developed by a prosthodontist.

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Psychologist (Psychology) / Neuropsychologist (Neuropsychology)

Brief: The psychologist or neuropsychologist help patients with coping, managing change, and mental health. This can include strategies to deal with bullies

Detailed: Psychologists on craniofacial teams often have two roles — the evaluation of psychosocial adjustment and the evaluation of neuropsychological status.  Individuals with facial differences may face difficult psychological adjustment, as may their family.  Psychologists can assist with coping, adjustment to facial differences, concerns with bullying and discrimination, preparing psychologically for surgical procedures, and adjustment to ongoing changes in facial appearance.  Some craniofacial conditions and syndromes carry an increased risk for certain neuropsychological deficits, and the neuropsychologist can administer comprehensive neurocognitive examinations and make recommendations for school and work settings.

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Social Worker (Social Work)

Brief: The social worker can give counseling and emotional support for the patient and their family. They are the person who can tell you what kind of non-medical help is available in your community, such as finding support groups or in-home help if needed. They can help with questions about school or work, insurance, and finding financial or travel resources.

Detailed: Social workers often provide guidance and counseling to families in dealing with the social and emotional components of a craniofacial difference.  They typically are the primary source for resources in the community and referrals to outside services.  The social worker will commonly work with families to ensure that insurance, school, and vocational services are all being optimally utilized by the patient.

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Speech-Language Pathologist (Speech-Language Pathology)

Brief: Facial differences can make it hard to talk in a way that is easy for other people to understand. When this is a concern, the speech-language pathologist can help decide if surgery will help or if  different types of therapy or exercises might be more useful.

Detailed: Craniofacial differences may contribute to speech difficulties due to structural differences, atypical air flow, surgeries of the nose and mouth which can interfere with development of speech during childhood, or removal of head and neck tissues (as in cancers) necessary for typical speech.  Speech pathologists evaluate and monitor speech development throughout childhood and into adulthood.  They may recommend regular speech language therapy, or may recommend a surgical intervention when necessary to improve speech skills.  Some syndromic conditions may include developmental delays affecting the language components of social skill development (eye contact, turn taking, etc.), and speech-language pathologists often will also monitor such pragmatics of speech.

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