What is a CSF (cerebrospinal fluid leak) syndrome?

We know that about 150 milliliters of nerve water (called cerebrospinal fluid) wash around our brain and spinal cord. The nerve water is located between the meninges (membrane) and the spinal cord. Cerebral and spinal meninges (Dura mater) pack this closed system which is literally 'waterproof'. If the Dura are not tight, nerve water may leak. Even a tiny crack leads to the sudden and rapid escape from this closed space and thus to some dramatic consequences. The leakage of cerebrospinal fluid is less noticeable when lying down and more visible in an upright position. The consequences are enormous: it ranges from easily tolerated headache to unbearable headaches. Many sufferers are then actually unable to leave the bed or move their heads. Vomiting, nausea, irritability, blurred vision and other symptoms are also possible.

CSF syndrome has several names or synonyms: cerebrospinal fluid hypersensitivity syndrome, hypoliquorrhoea, spontaneous spinal cord fistula, intracranial hypotension syndrome, orthostatic headache syndrome, spinal headache, etc.

Women are more frequently affected by cerebrospinal fluid leak syndrome than men

The cerebrospinal fluid leak syndrome is not a widespread disease - but also anything but exotic. Every year, between 5,000 and 6,000 people are affected. Women are more frequently affected than men (2:1), and the average age of patients is around 40.

The cause of a CSF syndrome lies in the back

The cause of the loss of nerve water and the negative pressure that results from it can be a sharp edge (bone spur) on the spine - it drills a hole in the Dura, which actually protects the brain water. For example, wear can be responsible for bone spur - when joints or vertebrae rub against each other. This leak happens predominantly in the thoracic spine or lower cervical spine. Sometimes, after a (minor) trauma, there may be a small tearing of the spinal dura. The cause is in the back, but complaints and symptoms are in the head. Another cause of CSF syndrome is a leak following diagnostic Lumbar Puncture. It develops in 65% of patients within 24 hours. Many times the symptoms can even occur within 20 seconds. The syndrome may arise after spinal anesthesia and during or after spinal surgery.

Pay attention to these symptoms

The cardinal symptom is the so-called orthostatic headache. It is triggered or aggravated by changing position to the upright position because the brain is shifted downwards and creates a pull on pain-sensitive structures. Irrespective of this, there may be other symptoms that improve only when lying down: nausea, vomiting, neck stiffness, dizziness, threatening bleeding, tinnitus, photosensitivity, diplopia, hearing impairment, hearing loss, visual and visual field disorders, increased heart rate, difficulty concentrating, sensitivity to noise, gait insecurity and consciousness disorders. Occasionally, pain between the shoulder blades or in the neck precedes the actual headache by days to weeks.

Diagnosis

If there is a CSF-syndrome after spinal anesthesia or after a spinal surgery, the diagnosis is relatively simple, because it is a consequence of the procedure. It is different when the patient feels pain without recognizable interventions. If something indicates a loss of CSF, MRI (Magnetic Resonance Imaging) is performed from head to sacrum - this imaging technique can help identify the cause behind it.

Therapies - four levels available

Stage 1: Bed rest, at least three days.

Stage 2: Blood patch - this means: The doctor takes blood from your vein, thereafter injects it into the so-called epidural space. Usually, this method helps to permanently relieve the patient's pain. If necessary this application of a blood patch can be repeated several times.

Stage 3: The same procedure - with one difference: the autologous blood is injected under X-rays and CT control exactly where the dura fistula (opening) is located. This intervention should lead to formation of adhesion and thus to a closure of the liquor leak.

Stage 4: Surgery. As part of a microsurgical procedure, the CSF is surgically closed. This surgery should be carried out only if the above mentioned procedures did not work. This would be the case if dura split is large and if symptoms are severe. 

Important: Before the procedure, you should talk to the doctor so that he informs you about possible risks (for example secondary bleeding, nerve injury, infection).

Positive prognosis

The acute phase around a CSF syndrome can cause a constant worsening of pain. However, after successful therapy, you will be able to lead a normal life again! When the brain and spinal cord are well embedded and well protected in about 150 milliliters of fluid…

Dr. med. Munther Sabarini

Author
Dr. med. Munther Sabarini
Specialist in Neurosurgery

Hans-Heinrich Reichelt

Co-author
Hans-Heinrich Reichelt
Chief Editor of Medizin für Menschen

The Avicenna Clinic in Berlin is always willing to help you

Since the year 2001, the Avicenna Clinic is based in Berlin. Our doctors have at least 25 years of international experience in their respective fields (neurosurgery, spinal surgery, anesthesia, and orthopedics).

If you have severe back pain, a herniated disc or a suspected herniation, please contact us using the following information:

Avicenna Clinic
Paulsborner Str. 2
10709 Berlin

Telephone: +49 30 236 08 30
Fax: +49 30 236 08 33 11
E-Mail: info@avicenna-klinik.de

You can call anytime, write an e-mail or fill out a callback form. Each patient then gets an appointment with a doctor of our clinic, who is a spine specialist (neurosurgeon). Based on MRI images (brought or made in our clinic) and on an in-depth examination, the doctor will discuss with you all the different therapy options or possibly surgery. You can also use our specialists only to obtain a (second) opinion.

If you decide to undertake your therapy and/or surgery in Berlin, we would want to make your stay as pleasant as possible. In our clinic, you are at the center of our attention! You can expect state-of-the-art equipment in all areas - from the operating room to the patient bedroom.

The latest, gentle, minimally invasive treatment procedures are the focus of our clinic. Together we try to find a suitable treatment for your complaints. The actual therapy takes place only after a detailed discussion with the patient, examinations and the diagnostics.

For us, as important as medical care, it is the commitment we take to guarantee our patients a high level of personal care that can, in turn, ensure them a comfortable stay.

During the period of inpatient stay our team of nurses will take care of you 24 hours a day. They also offer services in several foreign languages, including English, Russian, Polish, Turkish, Spanish, Italian, Arabic, Bulgarian and French. We care not only about your safety but also your needs, respecting traditions and religions.

Our team is made up of a group of highly qualified specialists who work together to guarantee you a quick recovery.