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The Hitherto Unknown Causes of Headache: Cerebrospinal Fluid Leak

Professor Jürgen Beck, Medical Director of the Department of Neurosurgery, talks about a possible cause of headache.

Common headaches include migraine-like ones but also tension-type ones, which often affect young people. But there is also a form of headache, not at all rare, that has only been known about for a few years, and these occur when cerebrospinal fluid is lost: cerebrospinal fluid leak (or CSF leak). Young, active and capable people are often those most affected by these headaches.

At first glance it is a rare disease. If you give the scientific numbers, then about 5 people per 100,000 inhabitants are affected. This makes it a rare disease. But one guesses, as a result, that the disease is not so well known, and only in recent years has been diagnosed more and more, so that there may be undetected cases, that perhaps many more people suffer from these headaches. It has been shown in recent years via intensive research, in which we also participated, that the cause of this disease is a small hole in the cerebral membrane. The cerebrospinal fluid, which is normally retained by the hard cerebral membrane (dura mater), escapes via this very small tear in the membrane and is lost in the back. We have found that often small tiny lime spurs are responsible for it, which at spinal disc height, in the back as I said, scrape this hard cerebral membrane like a small knife. Which then leads to this hole and then the cerebrospinal fluid comes out. The brain sinks down a little when getting up, and this causes these bad headaches. Most people even remember almost exactly the day or date when this special type of headache began. These are headaches that most people simply do not know about. These are headaches that in an upright body position are very clearly there, often quite bad, tearing, often searing in the neck, also with gurgling in the ear, with ringing ears or associated pain in the eyes, but which then quickly improve when these people lie down again. Clear symptoms while standing and significant improvements while lying - after lying down.

Neurology and the headache surgeries should be the first port of call. They filter out, so to speak, those headaches which may lead to findings that are due to CSF losses. Finding the actual exact precise location, where this little hole is along the spine - that's the difficulty that requires a lot of expertise. Then there is today good diagnostic equipment, which helps us to make the diagnosis. In the first position is magnetic resonance tomography of the head and also of the back. Then there are also special diagnostics at a few clinics, for example, here in Freiburg, where we can search for this small hole in the cerebral membrane. Then there are myelographies, CT myelographies, infusion tests, and also ultrasound scans that can be done. These are special examinations in order to be able to help the patient in the end.

The treatment is a bit more specialized: it requires some experience with so-called blood patches within a specific treatment. If nothing helps anymore you can also have surgery. Then there needs to be some specialized neuroradiological experience and a neurosurgeon who can perform this type of surgery. Overall, it is still rare worldwide for this to be done. It is above all performed in a few centers in America in Los Angeles, in Freiburg in Germany and in Bern in Switzerland.

We offer every treatment method available. And we also helped to develop them. The mainstay of treatment is the so-called blood patch, the epidural blood patch. It is done very often. Through our colleagues in neuroradiology, through Professor Urbach, a high level of expertise is achieved. We also developed the Liquorlex treatment. This is a precisely tailored minimally invasive surgical procedure of the dorsal (from the back to the spine). With a microscope we can target this small hole, without the need for large vertebral body replacement, or disc replacement, or removal. I personally developed this method of treatment, including the kind of access. If we've progressed far enough that we were able to find the hole in the hard cerebral membrane, then right now the numbers are such that the headaches disappear with ninety percent probability. So that's a very high cure rate.

I would divide the treatment process into two stages. The first stage is the diagnostics and the blood patch, which is two to three days. The second stage, if there are really stubborn symptoms and the patients cannot get rid of these bad headaches, is generally five to seven days until surgery. Of course, complications can occur. They are, thank God, very minor. We also have no permanent neurological complications. But you must not underestimate this. For one thing, if the illness has persisted for several weeks, months or even years, it can lead to so-called excess pressure headaches. It may be that the body has to adapt first, so in the first few days or weeks excess pressure headaches can occur, that are even worse when lying down. But that improves very quickly.

Otherwise, of course, there are complications that are theoretically possible in all types of surgical procedures: wound healing disorders, inflammations. But they are very rare. Luckily, most patients recover very quickly.

Professor Jürgen Beck, Medical Director of the Department of Neurosurgery