The Spinal CSF Leak Foundation’s CSF Leak Symposium in October 2017 was a world first on many fronts. Never before had the world seen a gathering of doctors with an interest in CSF leaks. Never before had there been a formal gathering of CSF leakers and never before had CSF leakers and doctors been side by side at the same event.

As someone who is fit and well and able to travel with a strong interest in CSF Leaks it was an event I couldn’t miss. As a trustee of the only other charity in the world for CSF Leaks, the CSF Leak Association, I also wanted to show our support for the work of the USA’s Spinal CSF Leak Foundation.

I was nervous on two fronts – one, I hate flying and two, meeting all these people who I sort of know in the leaker world (via Facebook). Getting the 11+ hours of flying out of the way turned out to be not too bad and as for meeting all these people… easy. Our ‘Leaker’ family is a very warm one no matter where you come from or who you are. I put many names to faces and also got to see some old faces too. It really was like a family reunion.

The day was split into two tracks – the Patient/Caregiver Track and the Doctor’s Track. Each had their own room with a plenary session in the afternoon for both groups to come together. Everyone mingled over coffee and lunch and many ideas were shared.

I attended sessions in both tracks as some were more American focused and given the distance I had come I wanted to get the most out of my time. The sessions were far ranging from self-care for patients to new techniques and advancements for doctors. All of these are now available to view here so have a look for yourself and see what you think.

The highlights for me were hearing about the new diagnostic and treatment techniques being tried. This gave me renewed hope. Seeing doctors sharing ideas and thoughts was inspiring. You could see new ideas developing there and then. I do believe that with more joint collaboration that diagnosis and treatment will become better and more mainstream across hospitals worldwide.

I was really touched to meet fellow CSF Leak ‘carers’. Whilst I’ve been honoured in the past to meet CSF leakers, I’ve never had the opportunity to talk to fellow carers about the unique challenges of caring for someone with a CSF leak. It really was like listening to myself talk and made me realise I’m not alone.

This was the key message for the day, and one I hope that those who couldn’t make it can take away; CSF Leakers and those who treat and care for them are not alone. There really is a leaker family out there. Whilst it is hard to travel and meet face to face, there are a good many doctors and other carers working to try and improve the future outcomes for CSF leakers. I hope that our wider leaker family can take strength for that.

If you would like to see what happened on the day for yourself or hear what the doctors had to say then tune into for videos of each session by clicking here.

The planning for the next Spinal CSF Leak Symposium is already underway. This will take place on the 13-14 of October 2018 in Los Angeles.

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