Your Healthcare Team

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    Hydrocephalus is a complex condition and the long-term effects and other related symptoms or conditions can vary greatly from person to person. Therefore, your doctor will tailor a treatment plan for your overall health and specific needs. Living well with hydrocephalus often requires a team of healthcare providers working with you. Together, you’ll monitor your condition and each specialist will work to ensure you or your loved one can live a full and active life.

    Finding the right team of doctors is key to receiving optimal care. All of these professionals specialize in different aspects of treatment and ongoing management of care. It’s important to note, depending on how hydrocephalus is affecting you or your loved one, some people may only see one specialist, while others are referred to additional medical professionals. Let’s meet the different specialists you may interact with and a short explanation of their role in your care.

    Who is Part of Your Healthcare Team?

    Neurosurgeon is a specialist in surgery of the brain and nervous system. The neurosurgeon is usually the principal care provider, offering operative management, but also diagnosis, evaluation, and critical care. In the case of hydrocephalus, the neurosurgeon will order and review CT and MRI scans and often will work in consultation with a neurologist or family practice physician on other diagnostic tests. It is the neurosurgeon who will place the shunt, or perform the ETV or ETV/CPC surgery. Your primary care physician, your child’s pediatrician, or in many cases with normal pressure hydrocephalus (NPH), a neurologist, will provide primary healthcare and will consult your neurosurgeon if a problem with the shunt or ETV is suspected.

    Neurologist is a doctor who specializes in the study of the structure and function of the body’s nervous system. This includes the brain, spinal cord, and peripheral nerves. Often in adults, a neurologist makes the diagnosis and then will refer you to a neurosurgeon.

    Primary Care Physician (PCP) for most, even those with hydrocephalus or related conditions, the main medical professional they see is their primary care physician. Your family’s primary care physician or pediatrician may be involved in your medical care. Your family doctor may receive reports from your neurosurgeon and oversee long-term care.

    Nurse Practitioners (NPs), Clinical Nurse Specialists, and Physician Assistants (PAs), referred to as Advanced Practice Providers, are specially trained to provide you with medical care ranging from physical exams to ordering tests, prescribing certain medications, teaching you about your condition, providing postoperative care, and assisting with surgery. They work with your doctors to check on your overall health, your response to treatment and ongoing management of care.

    Neuro-ophthalmologist is an ophthalmologist who has a subspecialty in neurology and specializes in treating visual problems that are caused by neurological conditions such as hydrocephalus.

    Neuropsychologist is a psychologist who specializes in determining where the brain is damaged through a battery of tests and by monitoring the physical and emotional reactions of the patient to the tests.

    Neonatologist is specially trained to care for the most complex and high-risk situations for newborns. These doctors coordinate care and monitor newborns born prematurely as well as newborns with congenital conditions that may or may not require surgery.

    Occupational Therapists have the training to help patients reach their highest level of independence in daily activities. They will work with you to help improve the way your nervous system functions, including assisting in developing or improving functions of daily living, fine motor skills, hand-eye coordination, reasoning skills, and communication.

    Physical Therapist is a licensed healthcare professional who helps reduce pain and improve or restore mobility. In children, physical therapy can help children reach physical milestones as well as improve coordination, balance, and motor skills. In adults, physical therapists often evaluate the level of care needed during recovery to help improve balance and the ability to walk.

    Speech or Language Pathologists, also known as speech therapists, assess, diagnose, treat, and help prevent communication or swallowing disorders in children and adults. They also are trained to provide cognitive therapy even in the absence of speech problems.

    Headache or Pain Management Specialists are doctors who focus on the evaluation, treatment, and prevention of pain.

    Social Worker A social worker is licensed to help people deal with the impact of chronic conditions on their lives. Usually, this involves helping people connect with social services and other types of assistance. Social workers also can help find solutions to social and financial problems related to your condition.

    Child Life Specialists help children cope with their feelings about being in the hospital, their illness or disability, and having surgery or medical procedures. They use dolls, pictures, and medical equipment to prepare children for surgery, procedures, and other tests.

    Psychologist usually has an advanced degree, most commonly in clinical psychology, and often has extensive training in research or clinical practice. Psychologists treat mental disorders with psychotherapy and some specialize in psychological testing and evaluation. A psychologist can refer you to a psychiatrist if they believe you could benefit from medication, but they help support individuals through who are struggling with anxiety, depression, PTSD, and other psychological symptoms.

    Psychiatrist is a medical doctor (completed medical school and residency) with special training in psychiatry. A psychiatrist is able to conduct psychotherapy and prescribe medications and other medical treatments. While some psychiatrists conduct weekly therapy sessions, others strictly provide medication management through brief (15-30 min) appointments/check-ins every few weeks.

    Physiatrist is a doctor who specializes in physical medicine and rehabilitation, who restore optimal function to people with injuries to the muscles, bones, tissues, and nervous system.

    Anesthetist is the healthcare professional whose job it is to make sure you do not feel any pain during your surgery. You will actually be sleeping throughout the procedure and wake up after it’s over. Your anesthetist may be a doctor (called an anesthesiologist) or a certified registered nurse anesthetist (CRNA).

    Endocrinologist is a physician that diagnoses and treats conditions of glands and the hormones they make.

    Pharmacists are healthcare professionals that are licensed to dispense medicines. Pharmacists fill your prescriptions and can explain how medications work and counsel patients on drugs’ actions and side effects, as well as evaluate the potential for interactions among other medications you take. They can answer questions about both prescription and over-the-counter medications.

    Find a Doctor

    Finding a healthcare provider is not always an easy task. To help you in the process of building your healthcare team, HA has developed the online Physicians Directory. This first-ever physician finder tool allows you to search by location, specialist, and/or age served.

    What’s Your Role?

    Most importantly, you are an integral member and active participant in your healthcare team. It is your responsibility to participate in the decision-making process regarding your treatment and ongoing management of care. You know your body better than anyone else. Don’t be afraid to ask questions and advocate for your needs. Playing an active role in your care can also help reduce stress.

    Managing Your Healthcare Team

    It is not unheard of for people living with hydrocephalus or NPH to have other symptoms or comorbidities (conditions). These could have preceded the diagnosis or appeared well after. This means many people have to manage other health effects, including, but not limited to, headaches, chronic pain, and epilepsy. This means many individuals living with hydrocephalus are working with a variety of doctors or other specialists.

    An important part of managing your long-term health is building a team of doctors and specialists that work hand-in-hand and are in direct communication with one another. Allowing members of your team to share test results and other vital information regarding your health helps them gain a holistic view of you, your needs, and the approach they should take in managing your care.

    Benefits of Great Provider-Patient Communication

    “Medicine is an art whose magic and creative ability have long been recognized as residing in the interpersonal aspects of patient-physician relationship.” ~Hall JA

    Break-down in patient-provider communication is the top cause of patient dissatisfaction and many people (including healthcare professionals) have a tendency to overestimate their ability to effectively communicate. Effective communication is a vital component of delivering and receiving high-quality healthcare. Moreover, establishing a healthy relationship as a team relies heavily on effective patient-provider communication.