Spinal CSF Leaks

About Us

Clinical Staff                                                                              

Linda Gray-Leithe, MD

Peter G. Kranz, MD

Timothy J. Amrhein, MD

Michael Malinzak, MD, PhD

Jeff Taylor, PA

 

 

 

 

 

Spinal CSF Leaks  

Spinal cerebrospinal fluid (CSF) leaks, also known as Spontaneous Intracranial Hypotension, is a debilitating medical condition in which a small tear or hole forms in the outer membrane containing the fluid surrounding the spinal cord, often for no apparent reason.  This tear leads to leakage of the fluid that cushions the brain and spinal cord.  As a result of this leakage, patients with this condition suffer from debilitating headaches. Other causes of CSF leaks may be due to surgery or trauma.Once thought to be rare, we now recognize that this condition is much more common than previously thought. Although classic symptoms of CSF leaks are severe headaches that improve when lying down, a wide range of other symptoms that mimic other conditions can occur, making diagnosis difficult.  Patients are often misdiagnosed with other headache conditions such as migraine, or even conditions like fibromyalgia or stroke.

Patients can be of any age, but are often young or middle-aged and in the midst of the most productive years of their lives.  They can become bedridden, consequently losing their jobs and becoming financially destitute. Some may become suicidal because of the excruciating pain. Even when the correct diagnosis is made, few physicians have experience in finding the source of the fluid leak and sealing it. This lack of experience oftentimes means that patients are told to lie in bed indefinitely, with little other prospect for treatment.

The Duke Difference

Duke is one of only three centers in the country that has been working continuously on this problem over the past ten years. Having treated more than 1,000 people with suspected or confirmed cerebrospinal fluid leak, patients travel to Duke from across the country and from Canada, Europe, the Far East, Africa, New Zealand, and Australia.

Four Duke diagnostic and CT interventional neuroradiologists devote all of their time and energy to improving diagnosis and treatment for this debilitating disease.  Having extensive experience with this condition, the team has conducted groundbreaking research that has advanced understanding of the disease and revolutionized the way CSF leaks are treated.  Specifically, we have developed innovative imaging techniques to detect and localize leaks, including ones that are difficult to detect by standard means; developed new treatments to seal leaks using minimally-invasive procedures; and furthered the understanding of long-term effects of CSF leaks and how to manage them.

Every patient is different and needs highly personalized care.  At Duke, our experience, techniques, and technologies allow us to specifically tailor a treatment plan for each individual.  We also understand how disruptive this condition can be and are committed to undertaking  treatment with care, patience, and attention to detail.

Clinical Staff
Linda Gray-Leithe, MD
Peter Kranz, MD
Timothy Amrhein, MD
Michael Malinzak, MD, PhD
Jeff Taylor, PA
 
Nurse Coordinator 919-684-7770
Charles Mandelin, RN, BSN

Appointment Coordinators 919-684-7214 (Press Option 2).
Amy Harward, RT(R)(CT)

Appointment Location
Duke Medicine Pavilion
Department of Radiology, First Floor
10 Duke Medicine Circle
Durham, NC 27710

Mailing Address (for mailing images on CD)
Duke University Medical Center
Department of Radiology, Box 3808
C/O CT Spine Therapy
Duke North, Room 1402C5
2301 Erwin Road
Durham, NC 27710

Fax:  919-681-9914 (for sending us copies of your clinical notes/reports/insurance card)

International Patient Services
Ali Hamdani, Advisor International Patient Services
Office:  919-684-5191
Fax:  919-660-0146
Email:  internationalpatientservices@duke.edu

Gifts or Questions

Sally Schatz, Director of Development
Office: 919-385-0034
Fax: 919-385-3103
Email: sally.schatz@duke.edu
Location: Development and Alumni Affairs
710 W. Main Street, Suite 200
Durham, NC 27701

Scheduling Process

                                                                                                                                           
If you are interested in a phone consultation concerning whether or not you are a candidate for a CSF leak evaluation and treatment:

  • Call our scheduling office at 919-684-7214 (Press Option 2).
  • M-F 7:30am-4:00pm
  • We will return your call within 1-3 business days.

Pre-Consultation requirements:  

  • MRI of the brain with contrast performed within the last 6 months- We MUST have a copy of the images on a CD mailed to our office.  The faxed report is not sufficient.
  • Copies of clinic notes and reports related to your symptoms
  • Copy of front and back of insurance card
  • OPTIONAL: Any additional imaging of the brain and spine (mailed to our office on CD)

We suggest mailing your images on CD by Fed Ex or UPS with tracking.
We have electronic access to imaging for sites using POWERSHARE.

Mailing Address for Images on CD
Duke University Medical Center
Department of Radiology, Box 3808
C/O CT Spine Therapy
Duke North, Room 1402C5
2301 Erwin Road
Durham, NC 27710
Fax: 919-681-9914 (for clinic notes, reports, and insurance card)

STEP 1: Send Pre-Consultation requirements

  • Obtain a copy of your MRI brain with contrast and mail to our office. Fax copies of your clinic notes, reports, and insurance card to our office.

STEP 2:  Review Process

  • Your records will be uploaded to our electronic medical record system and assigned to one of our four radiologists for review. The upload and review process may take up to several weeks from the time we receive your records.

STEP 3:  Phone Consultation

  • Once the radiologist reviews your medical records, he/she will contact you to discuss a plan of care. If further evaluation and treatment is indicated, the radiologist will notify our scheduling office of this plan.

STEP 4:  Schedule Appointments

  • After your phone consult with our radiologist, our office will call you to schedule the appointments. Due to the high volume of patients requesting this service, please allow our scheduler several days after your phone consult to contact you.

 

My Procedures

                                                                                                                                           
The imaging procedures performed to evaluate and treat a possible CSF leak vary among each patient.  Some patients may have the entire procedure in CT and others may have parts of the procedure in other areas of radiology.  The radiologist will decide the best plan of care for you.  Below is an example of what a patient may undergo for the evaluation and treatment of a CSF leak. This is typically done over a two day period.

Day 1 appointment:  “Diagnostic Procedures”
EXAMPLE: Lumbar Puncture, Myelogram with Total Spine Imaging
Before the procedure:

  • Discontinue blood thinners – See blood thinner list here. The amount of time you need to stop the blood thinner prior to the appointment depends on the medication you are taking. Please contact our nurse at 684-7770 at least 7 days prior to your appointment to discuss. You should also contact the physician who prescribed the blood thinner to make sure it is safe for you to stop for this procedure.
  • Complete the Headache Questionnaire Form and bring with you to your appointment
  • Arrive 45 minutes prior to your appointment time
  • Bring a driver who must stay in the department until you are released
  • Signed consent will be obtained prior to the procedure  (inform us of any allergies)

The Procedure:

  • Lumbar Puncture is performed by placing a needle in your lower back to obtain a CSF pressure
  • Myelogram is performed by injecting an iodinated contrast agent through the existing needle
  • Images of the entire spine are acquired

After the Procedure:

  • You will be monitored in the recovery room for approximately 2 hours
  • The radiologist will review all the imaging performed on Day 1
  • The results of the Lumbar Puncture and Myelogram will determine what course of treatment is needed the following day

Day 2 appointment:  “Treatment Procedure”
EXAMPLE: CT-Guided Bloodpatch
Before the procedure:

  • Do not eat for 6 hours prior to this appointment, you may have something to drink up to 2 hours prior
  • Continue holding blood thinners if held for day 1 appointment
  • Arrive 45 minutes prior to your appointment time
  • Bring a driver who must stay in the department until you are released
  • Signed consent will be obtained prior to the procedure (inform us of any allergies)
  • An IV may be placed in your arm if sedation is necessary

The Procedure:

  • CT-Guided Bloodpatch is performed by injecting your own blood into the epidural space to form a seal at the leaking site(s)
  • Fibrin glue may be used in combination with your blood to seal the leak in certain circumstances, depending on what type of leak you have

After the Procedure:

  • You will be monitored in the recovery room for approximately 2 hours
  • Our staff will follow up with you over the next few days
  • If from out of town, plan to stay in the area for approximately 1-2 days in case further treatment is needed
  • If local, you may go home after being discharged from the recovery room

 

FAQs

                                                                                                                                           
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:
Sally Schatz, Director of Development in the office of Development and Alumni Affairs
Office: 919-385-0034
Fax: 919-385-3103
Email: sally.schatz@duke.edu
Location: Development and Alumni Affairs
710 W. Main Street, Suite 200
Durham, NC 27701

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?
We need a copy of your MRI of the brain with contrast performed within the last 6 months.  We need a copy of the images on a CD mailed to our office.  Additional imaging of the spine or brain should be sent if available.
Fax or mail a copy of your insurance card (front and back) and any pertinent radiology imaging reports/clinic notes related to your headache to 919-681-9914.

Mail the CD of your radiology imaging tests to:
Duke University Medical Center
Department of Radiology, Box 3808
C/O CT Spine Therapy
Duke North, Room 1402C5
2301 Erwin Road
Durham, NC 27710

We suggest sending CD via Fed Ex or UPS with tracking.
We have electronic access to imaging for sites using POWERSHARE.

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 office 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 6 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 contact international patient services for registration and to discuss financial responsibilities.

International Patient Services Center
International Patient Services Advisor- Ali Hamdani
Office: 919-684-5191
Fax: 919-660-0146
Email:  internationalpatientservices@duke.edu

 

Research

                                                                                                                                           

How You Can Help – Although this condition is being recognized more frequently, much more work needs to be done. With your help, we can continue our groundbreaking efforts to:

Understand the disease better.  There still remain many unanswered questions about why this condition develops, how the symptoms develop and change with time, and how the process of recovery occurs after treatment.  Research requires teams of collaborators, scientists, statisticians, and research assistants, and the funding to support them.

Find the most effective treatment.  There are very few studies in the medical literature that look at the different treatment options for this condition and which ones work best.  We need this information desperately. We are currently conducting high-quality trials of treatment outcomes, but these trials are expensive, labor-intensive, and need financial support to be successful.

Train more physicians to treat the condition.  As more and more patients are diagnosed , more centers are needed to provide high-quality treatment.  Although we currently teach physicians-in-training and host visiting practicing physicians, greater funding could establish dedicated training programs such as a fellowship in this area.

Educate physicians around the country and world.  We need to educate other healthcare providers on how to recognize this condition.  One of the best ways to do this is provide education and share our experience by traveling to meetings, conferences, and hospitals as well as through educational information published in highly respected medical journals.   We have already seen the benefits of programs such as these and are often asked to consult with physicians from inside the US and around the world.  We need your help to continue this outreach.

Discover.  Every day we make new discoveries about this condition, and often these discoveries are unexpected.  We treat patients differently today than we did 10, 5 or even 2 years ago as a result of these discoveries.  We need help to follow these leads when they arise, as they often result in giant leaps forward in our knowledge.

Publications

1: Kranz PG, Amrhein TJ, Gray L. CSF Venous Fistulas in Spontaneous Intracranial Hypotension: Imaging Characteristics on Dynamic and CT Myelography. AJR Am J Roentgenol. 2017 Oct 12:1-7.

2: Kranz PG, Malinzak MD, Amrhein TJ, Gray L. Update on the Diagnosis and Treatment of Spontaneous Intracranial Hypotension. Curr Pain Headache Rep. 2017 Aug;21(8):37. doi: 10.1007/s11916-017-0639-3. Review. PubMed PMID: 28755201.

3: Kranz PG, Amrhein TJ, Choudhury KR, Tanpitukpongse TP, Gray L. Time-Dependent Changes in Dural Enhancement Associated With Spontaneous Intracranial Hypotension. AJR Am J Roentgenol. 2016 Dec;207(6):1283-1287. Epub 2016 Aug 24. PubMed PMID: 27557149.

4: Amrhein TJ, Befera NT, Gray L, Kranz PG. CT Fluoroscopy-Guided Blood Patching of Ventral CSF Leaks by Direct Needle Placement in the Ventral Epidural Space Using a Transforaminal Approach. AJNR Am J Neuroradiol. 2016 Jul 7. [Epub ahead of print] PubMed PMID: 27390315.

5: Kranz PG, Amrhein TJ, Schievink WI, Karikari IO, Gray L. The “Hyperdense Paraspinal Vein” Sign: A Marker of CSF-Venous Fistula. AJNR Am J Neuroradiol. 2016 Jul;37(7):1379-81. doi: 10.3174/ajnr.A4682. Epub 2016 Feb 11. PubMed PMID: 26869470.

6: Kranz PG, Tanpitukpongse TP, Choudhury KR, Amrhein TJ, Gray L. Imaging Signs in Spontaneous Intracranial Hypotension: Prevalence and Relationship to CSF Pressure. AJNR Am J Neuroradiol. 2016 Jul;37(7):1374-8. doi: 10.3174/ajnr.A4689. Epub 2016 Feb 11. PubMed PMID: 26869465.

7: Kranz PG, Luetmer PH, Diehn FE, Amrhein TJ, Tanpitukpongse TP, Gray L. Myelographic Techniques for the Detection of Spinal CSF Leaks in Spontaneous Intracranial Hypotension. AJR Am J Roentgenol. 2016 Jan;206(1):8-19. doi:10.2214/AJR.15.14884. Review. PubMed PMID: 26700332.

8: Kranz PG, Tanpitukpongse TP, Choudhury KR, Amrhein TJ, Gray L. How common is normal cerebrospinal fluid pressure in spontaneous intracranial hypotension? Cephalalgia. 2015 Dec 17. pii: 0333102415623071. [Epub ahead of print] PubMed PMID: 26682575.

9: Kranz PG, Amrhein TJ, Gray L. Rebound intracranial hypertension: a complication of epidural blood patching for intracranial hypotension. AJNR Am J Neuroradiol. 2014 Jun;35(6):1237-40. doi: 10.3174/ajnr.A3841. Epub 2014 Jan 9. Review. PubMed PMID: 24407273.

10: Kranz PG, Stinnett SS, Huang KT, Gray L. Spinal meningeal diverticula in spontaneous intracranial hypotension: analysis of prevalence and myelographic appearance. AJNR Am J Neuroradiol. 2013 Jun-Jul;34(6):1284-9. doi:10.3174/ajnr.A3359. Epub 2012 Dec 6. PubMed PMID: 23221945.

11: Kranz PG, Viola RJ, Gray L. Resolution of syringohydromyelia with targeted CT-guided epidural blood patching. J Neurosurg. 2011 Sep;115(3):641-4. doi: 10.3171/2011.3.JNS102164. Epub 2011 Apr 29. PubMed PMID: 21529136.

12: Kranz PG, Gray L, Taylor JN. CT-guided epidural blood patching of directly observed or potential leak sites for the targeted treatment of spontaneous intracranial hypotension. AJNR Am J Neuroradiol. 2011 May;32(5):832-8. doi: 10.3174/ajnr.A2384. Epub 2011 Feb 24. PubMed PMID: 21349964.
 

Current Clinical Trials

Randomized trial of CT fluoroscopy-guided targeted autologous blood and fibrin glue patching for treatment of cerebrospinal fluid leaks in spontaneous intracranial hypotension (SIH). 

Duke investigators are conducting the first prospective randomized clinical trial assessing the efficacy of CT fluoroscopy-guided targeted blood and fibrin glue patching of confirmed CSF leaks in patients with spontaneous intracranial hypotension.  An outcome of equivalent or inferior efficacy would result in a paradigm shift for SIH treatment (i.e. targeted patching would no longer be considered optimal therapy). Demonstrated superior efficacy would validate this procedure leading to a substantial increase in the performance of targeted patching and would provide the basis for future research comparing its efficacy with other epidural blood patch techniques.  Patients interested in enrolling may contact our team for further information.

Contact: Timothy J. Amrhein, M.D. (Principal Investigator) 919-684-7770
Assistant Professor of Radiology
Division of Neuroradiology
Department of Radiology
Duke University Medical Center

Gifts or Questions

Sally Schatz, Director of Development
Office: 919-385-0034
Fax: 919-385-3103
Email: sally.schatz@duke.edu
Location: Development and Alumni Affairs
710 W. Main Street, Suite 200
Durham, NC 27701