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Johns Hopkins Hydrocephalus and Cerebral Fluid Center

doctors looks at scans of brain
 

The experts at the Johns Hopkins Hydrocephalus and Cerebral Fluid Center evaluate and treat patients with all forms of disorders affecting cerebral fluid (also called cerebrospinal fluid, CSF or spinal fluid), including conditions related to the accumulation of CSF in the brain (hydrocephalus). We offer a unique environment where neurosurgeons, neurologists, pain experts and therapists work together to provide patients with well-rounded treatments. People who experience hydrocephalus since childhood find a comfortable transition from pediatric to adult care at our center.

 

Our Cerebral Fluid Disorders Experts

Our multi-specialty team includes neurosurgeons, neurologists, a geriatrician, as well as advanced practitioners (physician assistants and nurse practitioners) who work together to develop a custom treatment plan for each patient.

Tests and Procedures

As part of evaluation or treatment, we may perform multiple diagnostic and therapeutic procedures. We hope to eliminate misdiagnosis that commonly happens in patients with hydrocephalus, and to provide the best medical and surgical treatment so you can regain health and continue to lead a productive, meaningful life.

Exams

  • Neurologic evaluation, including gate and balance testing
  • Neuro-ophthalmological examination, including testing of the vision function

Stenting for Pseudotumor Cerebri

  • Stenting helps open up narrowed passageways that carry blood and CSF from the brain to the jugular veins and eventually to the heart.

Shunts

  • Shunt placement to help drain cerebrospinal fluid and redirect it to another location in the body where it can be reabsorbed.
  • Shunt patency study to evaluate shunt performance

Lumbar Puncture and Drain

  • Lumbar puncture to measure CSF pressure
  • Removing a larger volume of CSF to assess and temporarily relieve symptoms of hydrocephalus
  • Lumbar drain for extended CSF drainage to assess a potential benefit of a shunt

Intracranial Pressure Monitoring

  • Helps detect changes in pressure over time and can be done in two ways:
    • Lumbar via a lumbar catheter
    • Direct via a small pressure-sensitive probe inserted through the skull

 

Patient Stories 

Normal Pressure Hydrocephalus: Patricia's Story

Pseudotumor Cerebri: Ashley’s Story

  

Appointments and Referrals

  • When you call to schedule your appointment, we may ask you to prepare and send us the following items to help with scheduling:

    • A referral letter or recent clinic note from the referring physician stating your diagnosis and why they would like you evaluated at our center.
    • All medical records pertaining to your diagnosis, including clinic notes, radiology tests, operative notes, discharge summaries and any blood/lab or other tests from the last three years. To share your records with us, please complete the Authorization for release of health information and send it to your referring physician or the medical records department of the hospital that has your records. You can also send it to us and we will help with this process.
    • Recent MRI/CT films or a CD of these tests, unless they were completed at Johns Hopkins. We need to review these records to make sure all appropriate tests are completed.

    · If you have a shunt, pacemaker, stent or any metallic implant, please forward operative notes from your surgeon with details of the make and type of the device. The device type determines if an MRI is safe for you. Knowing the type of shunt also helps us choose the best way to assess if the shunt is working as it should. Please complete the MRI screening form for your safety.

    • If you have HMO insurance, please send an insurance referral from your primary care physician for your visit to our center.
    • A completed new patient questionnaire that we will send to you. The questionnaire provides information that helps us choose the most appropriate specialist for you.
  • Please complete the Physician to Physician Request and return using the contact information below.

  • Use the following information to send records and referrals to our center. After we receive all the requested information, a physician reviews it to determine if additional studies are needed during your visit. This review can take up to 7 days.

    ATTN: Tammy Counts
    Cerebral Fluid Center
    The Johns Hopkins Hospital, Phipps 126
    600 North Wolfe Street
    Baltimore, MD 21287-1454

    Phone: 410-955-7482
    Fax: 410-955-9126

  • We generally schedule new patients within 3 to 4 weeks for routine appointments. We can see some patients within 7 to 10 days if an urgent assessment is needed. If you need tests in addition to your clinic visit (such as MRIs, shunt patency studies, lumbar punctures, ICP monitoring or extended CSF drainage), it may take longer to coordinate all appointments so you can complete them in a single visit.

  • Evaluating cerebral fluid disorders requires certain sequences to be performed during the MRI procedure to ensure accurate diagnosis and appropriate treatment. If the MRI you had does not provide the level of detail necessary, we may recommend further MRI studies. Occasionally, based on findings on your neurologic exam, an MRI of the spine may also be recommended.

    If your insurance permits, we prefer that MRI is done in our facility using special protocols developed for CSF disorders by our experts. If you make an appointment with us, we will download these images into Johns Hopkins electronic system so our experts can view them. The fee for this download ranges from about $13 - $133 depending on the complexity of the exam, and most insurance companies will cover their portion of this charge.

  • Some test results will be available the same day as your clinic visit, while other radiology exams may require a specialist review and can take up to 5 days for a final report. Certain blood tests are sent to specialty labs and can take up to 3 or 4 weeks. Please call the ordering physician to confirm the reports.

    • Please confirm the date and time of your appointment a few days before the appointment especially if you have multiple tests (x-rays, MRI, CT, shunt patency, physical therapy) scheduled on the same day. These appointments may be at different locations.
    • Please arrive 30 minutes before your first scheduled appointment to allow enough time to park and register.
    • If you cannot keep your appointment, please call 410-955-7482 or 410-550-1470 to cancel the appointment at least 48 hours in advance so we may schedule another patient from the waiting list.
    • We encourage you to bring a book or snack with you so that you are comfortable before and between appointments.
    • In addition to the physicians, you may be assessed by physician assistants, nurse practitioners and physical therapists. They may administer multiple tests to assess your balance, gait and memory before you see the physician.
    • If you already have a shunt, don’t forget to bring your shunt card with you to the appointment.
 

Clinical Trials

The Cerebral Fluid Center continually advances medical understanding of hydrocephalus and other conditions affecting cerebrospinal fluid through basic science, translational and clinical studies.

  • Hydrocephalus Studies

    Browse hydrocephalus studies in the Johns Hopkins Institute for Clinical and Translational Research database.

  • CSF Trials

    View CSF trials active at Johns Hopkins on clinicaltrials.gov

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