HOW CAN I MAKE A DONATION TO HELP WITH ONGOING RESEARCH TO BETTER UNDERSTAND AND TREAT SPONTANEOUS CSF LEAKS?
To make a contribution to this important work, please click the “Donate Now” button at the top of the page. For donors looking to make continuing contributions, or to establish a fund in the name of a patient or loved one please contact:
Evan Frazer, Associate Director of Development
Duke Health Development and Alumni Affairs
300 W. Morgan St., #1200, Durham, NC 27701
Durham, NC 27701
Ph: 919-717-1968
HOW CAN I GET SCHEDULED FOR AN EVALUATION/TREATMENT FOR A CSF LEAK?
Call our scheduling office at 919-684-7214 (Press Option 2). and let us know you would like to be considered for evaluation/treatment for a CSF leak. Please leave your name and phone number and we will return your call within 1-3 business days.
WHAT IS REQUIRED PRIOR TO AN EVALUATION/TREATMENT FOR A CSF LEAK?
- MRI of the brain with contrast performed within the last 6 months- An MRI brain with contrast is required because certain signs of spontaneous intracranial hypotension (SIH) are only demonstrated on contrasted images. See article here
- CT Myelogram/MRI spine: (not required, but must submit if performed)
- ALL IMAGES CURRENT AND OLD (all brain, spine, and myelograms performed) must be sent. The report is not sufficient. The Duke Radiology Image Library encourages electronic share. See form.
- Referral from a neurologist or a headache specialist (MD/DO/NP/PA) on our form.
- Copies of clinic notes and imaging reports related to your symptoms
- Copy of front and back of insurance card
We suggest you work with your neurologist’s office and your imaging facilities to see that all pre-consultation requirements are sent.
Please call our coordinator to obtain a medical record number (MRN) and if a CD of your images must be mailed.
*Please do not mail anything without speaking to the coordinator
WHY IS AN MRI OF THE BRAIN WITH CONTRAST REQUIRED?
An MRI brain with contrast is required because there are certain signs of spontaneous intracranial hypotension (SIH) that are only demonstrated on contrasted images. See article here
DO YOU ACCEPT IMAGING ELECTRONICALLY?
Yes, if your imaging center is a participating member of Nuance PowerShare, we can request your imaging electronically.
HOW WILL I KNOW IF I’M A CANDIDATE FOR EVALUATION/TREATMENT FOR A CSF LEAK?
Images and clinical notes/reports will be loaded to our electronic medical record system and sent to one of our radiologists for review.
Due to the volume of requests we receive, and the complexity of many patient’s symptoms and medical history, the review process may take several weeks. We appreciate your patience as we strive to give each patient the time and consideration required for this complicated and debilitating medical condition.
After reviewing your medical records, the radiologist will discuss a plan of care via a phone consult. If further evaluation/treatment is needed, our coordinator will contact you to schedule an appointment.
HOW LONG WILL IT TAKE TO GET AN APPOINTMENT ONCE I AM APPROVED FOR EVALUATION/TREATMENT?
If the radiologist determines you need to be seen for evaluation and treatment appointments, it may take up to several weeks to be scheduled. This is due to the high volume of patients needing this specialized service. Please understand we want each patient to get the time and individualized care they need.
WHO PERFORMS THE EVALUATION/TREATMENT FOR A CSF LEAK?
A neuroradiologist and/or a highly experienced neuroradiology PA who specializes in using radiology imaging and procedures to diagnose and treat CSF leaks will perform the evaluation/treatment.
WHAT SHOULD I EXPECT AT MY APPOINTMENT FOR THE EVALUATION/TREATMENT OF A CSF LEAK?
Day 1 appointment: “Diagnostic Procedures”
The diagnostic imaging performed to evaluate a possible CSF leak is unique for each patient. Typically a CT guided lumbar puncture is performed to obtain a baseline opening pressure. This is followed by a CT guided myelogram of the spine. The results of the myelogram will determine if treatment is needed the following day. You must have a driver with you at this appointment. Day 2 appointment: “Treatment Procedure”
The treatment for a CSF leak typically consists of bloodpatching. We use your own blood or a combination of blood and fibrin glue to seal the leak. Conscious sedation may be used for comfort during the treatment. You should not eat or drink for 8 hours prior to this appointment and bring a driver.
WILL I BE ADMITTED TO THE HOSPITAL FOR THESE APPOINTMENTS?
No, these are outpatient appointments.
WHAT SHOULD I EXPECT AFTER TREATMENT FOR A CSF LEAK?
After treatment you will go to our recovery room to be monitored for two hours. If you live out of town (more than 2 hours), we suggest you stay in the area for 1-2 days in case further treatment is needed. Local patients may go home after being discharged. Our staff will follow up with you over the next few days.
WILL MY INSURANCE PAY FOR THIS EVALUATION/TREATMENT?
Duke University Medical Center accepts a variety of health insurance plans. You should check with your insurance company for specific questions related to your coverage and what (if any) co-payments, co-insurances and deductibles will be your responsibility.
HOW DO I OBTAIN MY MEDICAL RECORDS FROM DUKE
Call 919-384-7119 for instructions on how to obtain your medical records from procedures performed at Duke.
IS THE PROCESS DIFFERENT IF I LIVE OUTSIDE THE UNITED STATES?
Yes. Please follow the link below to submit our international patient form so we can register you in the Duke system and issue you a Duke Medical Record Number (MRN).
https://redcap.duke.edu/redcap/surveys/?s=YFJMN37T3T
Once submitted, please disregard the automated response you will receive requesting medical records and explaining the process. We will forward your information to our CSF-leak coordinator to contact you with further instructions on how to move forward with your request. International Patient Services Center
International Patient Services Advisor- Ali Hamdani
Office: 919-684-5191
Fax: 919-660-0146
Email: internationalpatientservices@dm.duke.edu