Primary Care Provider/Pediatrician: Your pediatrician or primary care provider should be an integral part of your care team. Often times they can help with referrals for specialists listed here.  You should feel extremely comfortable with this team member as they are usually your first line medical provider.  Think of them as your "quarterback".

Neurosurgeon: A neurosurgeon will help guide what is the best treatment option and be your go to for any issues arising from either the shunt or ETV.  A neurosurgeon will follow you after surgery to manage you post-operatively.  Each patient is different but typically people are followed after surgery with an MRI every 3 months, every 6 months and then every 12 months after reaching stability. 

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Ophthalmologist: It is crucial those living with hydrocephalus should have yearly eye examinations – which include dilation of the eyes.  This is to ensure the optic nerves are intact as it can be the first sign on surgical failure and lead to permanent blindness.  If you or your child experiencing any vision changes please contact both your Neurosurgeon and Ophthalmologist.

Neurologist:  A neurologist will be able to assess what developmental or neurological effect, if any, hydrocephalus is having on you or your child. A neurologist will also be able to test and monitor, for seizures, fine and gross motor issues.  They will assess if there is any other neurological condition that may related to or aggravating by hydrocephalus.

Neuropsychologist: As your child grows you may have concerns with their cognitive and
behavioral development. A neuropsychologist will test your child’s ability to learn and grasp
concepts and can help to refer your child to the appropriate specialists.

 

In adulthood a Neuropsychologist can help you with work place, social and higher level education issues that are caused by your neurological condition. 

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Developmental Pediatric Specialist: – This is a special trained pediatrician that can work with children diagnosed with developmental delays.  This type of specialist is not available at all hospitals but seeing if you have access to one and have a child diagnosed with developmental delay.  They will become your quarterback with their specialized knowledge. 

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Therapists

Therapy is a crucial component to living with hydrocephalus.  There are many issues hydrocephalus itself causes but also the problems and recovery needs that arise after subsequent brain surgeries.  Hope for Hydro is a huge advocate for these therapies and cannot put a value on therapist.  Therapy is a dual effort and in order to achieve the best results, patients and parents need to work on therapy goals daily at home.

For children, ages 1-3 have the most neuroplacity (or the brain's ability to recover from damage).  There is neuroplasticity at any age but does decrease over time.  It is very important to fight hard and to understand that through therapy you can actually have some control over your own recovery. 

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Physical Therapist: Those suffering from  neurological disease such as hydrocephalus are at increased risk for various ailments including hypotonia, femoral anteversion, balance and coordination deficits and hyper-laxity of the ligaments. A physical therapist will help train you or your child to work the affected muscles to their best capabilities.  They can also make refferals for assisted devices such as walkers, braces, and other addaptive equipment.   Physical therapy is extremely hard work but the benefits are truly endless and can move mountains.  

Occupational Therapist:  People with hydrocephalus often struggle with their fine and gross
motor skills, these are skills used with your hands and fingers. An occupational therapist can help you or your child strengthen these important skills that are used on a daily basis. 

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Speech Therapist:  Hydrocephalus can suffer from delayed development, including speech. A speech therapist can help your child strengthen their verbal skills.

Speech therapy can help in adulthood with verbal skills as well.  This includes, pronunciation, name recall (finding the write words) and understanding of language. 

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Behavioral Therapist:  Those with a history of hydrocephalus are at risk for behavioral and learning disabilities not limited top  Autism and ADD.  A behavioral therapist will help you or your child mange these disabilities and help patients reach their best capabilities. 

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