How my life changed in October 2015

My life changed in October 2015. I was at Euston Station, London, following a day of successful but exhausting meetings. The first sign that something was seriously wrong came when I couldn’t eat the bar of chocolate bought to enjoy on the train. Instead of experiencing the usual melt in the mouth moment, I found myself strangely disgusted by the cloying texture and sickly taste. I didn’t realise it at the time, but that was the last piece of chocolate (indeed the last sweet thing) I would eat to this day, and that moment marked the beginning of a CSF leak journey that is now in its fourth year.

Travelling home I battled waves of nausea, a neck and head ache like no other and stabbing back pain. I became convinced I’d pulled a muscle, was suffering from travel sickness or had contracted some strange bug. Things worsened over the next 48 hours to the point where severe pain in the back of my head meant I could not be upright and I was admitted to hospital. Four days later, after a seemingly endless round of examinations, blood tests, CT scans and lumbar punctures, doctors concluded that I was suffering from stress.

Over the next month I battled what I now know are classic CSF low pressure symptoms – postural headache, brain fog, neck and shoulder pain, nausea, dizziness, changes in hearing, vision and taste - before an MRI scan conducted privately and out of desperation highlighted the extradural pools of CSF fluid around my brain and the full length of my spinal cord, along with brain sag and all the other neurological signs of a CSF leak. In many ways I was lucky. My leak was obvious enough to show up using a relatively conventional diagnostic scan. Many of my fellow leakers are not so fortunate and face months or even years of non or mis diagnoses.

This is why the CSF Leak Association and its work is so important. In the months that followed my diagnosis I came to rely heavily on the information on the Association website as I sought to understand my condition and find the right doctors to help me. As most readers of this newsletter will know, CSF Leakers often have to become experts in their own condition. I have routinely referred family, friends and doctors (yes, even neurologists) to the research gathered on the CSF Association site. Without this information I would have faced a lack of understanding from those around me and from medical professionals. As my condition has improved (it has now plateaued and I can anticipate and manage the symptoms), I realise how the support and encouragement I received from fellow leakers in the Association Facebook group kept me going through the darkest of days.

Of course the CSF Leak Association charity can’t run itself. The webpages I found crucial as I sought to comprehend my experience need to be built and maintained. The Association’s social media presence grows only as a result of hard work. The Medical Advisory Committee that does so much to further awareness of the condition needs to be administered and managed. Research papers have to be reviewed and collated. And of course, the Newsletter you are reading right now needs to be written, edited and presented.

All this work is carried out by a small team of dedicated volunteers. Recently I decided to join this band of leak sufferers, healed leakers and family and friends of leakers by taking up the roles of Volunteer Manager and Trustee. Deciding to volunteer was easy. If the Charity did not exist, I would not be where I am now. In some very dark times, the volunteers and the work they did, provided me with vital answers and timely and informed support.

Recently my nephew was totally incapacitated by a CSF leak resulting from a back operation. I was able to point him and his family towards the right resources and they were able to advocate for themselves and receive a blood patch despite initial resistance from doctors lacking experience with the condition. The blood patch worked and he recently wrote these words to me:

I really wanted to say the biggest ever thank you for all you did helping me when I was literally at the worst I had ever been in my life. Before my surgery I had never even heard of CSF let alone a CSF leak. I really mean this when I say it, you will never know how much you helped me.’

His heartfelt thankyou brought me to tears. The real thank you however belongs to the CSF Leak Association and the work they do to help hundreds of people with this condition. Without them I would not have been able to help my nephew. For me at least, knowing what both he and I experienced and having read people’s stories on Facebook, volunteering becomes a no-brainer (I’m sure you will excuse the pun!).

If you would like to volunteer with the CSF Leak Association, please email me on susan.iacovou@csfleak.info Even if you can only manage half an hour a month, there are suitable tasks that need to be done. One off volunteering with things like website design or focus groups is also welcome. And if you can’t volunteer, maybe a friend or family member would like to help out. I hope to hear from you.

Get Involved

You can support the mission of the CSF Leak Association in many different ways. If you want to help you can find out how by following the links and deciding which method fits you best. We appreciate any help you are able to give..

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