Transcript
Good morning. Welcome to the Netherlands and welcome to Amsterdam, where it’s a bit quieter now after the city’s 750th birthday celebrations on the Ring Road and with the NATO summit in The Hague just over as well. Anyhow, I hope you have time to enjoy your stay here in the Netherlands.
I’m honored to be saying a few words at this symposium. Thank you, Dr. Schievink, Wouter, and Dr. Brouwer, Matthijs, for allowing me to speak about my situation as a patient who has experienced a spontaneous spinal CSF leak. Oh, sorry, that’s quite a mouthful for me. I’m not a medical expert. Usually I would feel a bit uncomfortable speaking about my medical history to strangers, but today I’m standing here before neurologists, neurosurgeons, and other medical experts who either specialize in CSF leaks or have a professional interest in intracranial hypotension. So it makes complete sense that I should tell you something about my medical history as a patient.
It was exactly 14 years ago this June—actually, I think it was today, 14 years ago—that I woke up in the middle of the night and experienced a severe headache when I stood up. I knew immediately this was a different type of headache to one of my occasional migraines. The days that followed were painful, with various symptoms like dizziness, vertigo, not being able to stand up straight, neck ache, and more strange and frightening sensations.
I went to the hospital and was diagnosed as probably having a neck hernia. One neurologist did mention that the symptoms were very similar to a CSF leak, but that he was pretty sure that this wouldn’t be one. “We only see one person every five years with such a leak, so no worries. It won’t be that,” he informed me. “Anyhow,” he said, “you haven’t had an epidural recently, so the chances are minimal that you have a CSF leak.”
I left the hospital and went home in pain. A couple of weeks later, I had an MRI scan, and it was clear I did indeed have a spontaneous spinal CSF leak. After having had two epidural blood patches, I went to Cedars-Sinai in Los Angeles for surgery. There they discovered that my case was even more worrying because my leak was in front of the spine. This was also why my blood patches hadn’t stemmed the leak. Surgery was performed by Dr. Schievink, and fast-forward, I’m standing here today.
At that time, in 2011, there was still a lot of confusion and lack of knowledge regarding spontaneous and non-spontaneous CSF leaks, and that is unfortunately probably still the case. For instance, my general practitioner had no idea what a CSF leak was. Also, a spontaneous leak was often confused with a non-spontaneous leak caused by an epidural or surgery. Doctors did not know that performing an epidural blood patch procedure in the case of a leak in front of the spine would not heal the leak. Some radiologists thought I no longer had a leak, although in fact it was still a serious one.
As a patient, one is trying to put all the pieces together and do one’s own research at a time when one is in pain and can barely stand up. It was frightening that the medical world around me didn’t understand exactly what was going on. Thus, in order to try and heal my leak, I had MRI scans, epidural blood patches, the CT myelogram, CT scans, digital subtraction, and finally the surgery which actually did heal it. I hope that CSF leaks will soon be more readily diagnosed at an earlier stage and that treatment will be more specific for each individual case. It was mentioned to me that my connective tissue is a little abnormal. Biopsy revealed I have slightly unusual collagen and that an accident or trauma can cause a spontaneous CSF leak.
Months later, one starts wondering how to prevent a new potential leak. Are there ways to make one’s connective tissue stronger? Why hadn’t I had one before? Or had I in fact had one earlier without realizing? Why are women more prone to having a leak? And which enzyme do we lack that causes our connective tissue to be more vulnerable? And are there other reasons why this can occur?
On the bright side, are we less likely to develop diabetes or other diseases, for example, and could we therefore maybe contribute to further medical research? Perhaps some of my questions will be covered during this symposium. I don’t have a medical background, but hopefully some of these points are relevant.
This brings me to you, the medical experts here for this two-day symposium. I’m extremely thankful for your expertise in a field that is still not mainstream. And a special thanks to Dr. Schievink. I’m incredibly grateful for your kindness, expertise, and brilliant brain. You saved my life.
I wish you all a very meaningful time in Amsterdam, and thank you all for listening.