How my CSF leak started
I am 56 years old and 5 years ago I had routine disc surgery in my lower back. Unfortunately it went wrong, as my dura was cut.
I have had 7 procedures to try to repair it, 3 blood patches and 4 surgical repairs – surgical glue, stitching, a fat patch and a muscle patch.
I have gone from at my worst being able to be up for 15 minutes every two hours, to being able to be up for 6 hours then lying down for 2 hours. I have been told that one day my brain might just adjust and be able to cope with the CSF pressure changes and that thought makes me feel positive.
My life now
I suffer from low blood pressure and travel sickness and I think that this body-type makes my symptoms worse. The deconditioning from the CSF leak and all the procedures has resulted in difficulty sitting or standing still, without feeling nauseous and my head going bang.
I know there is a lot of overlap of symptoms with people that have POTS. I do feel better if I put cotton compression socks on (pretty hot in the summer!) and keep on the move.
Apart from when lying down, I feel at my best when walking in the river with the dog, as the cold water on my feet sends the blood to my brain. I also feel better when I am exercising. I am lucky that I can exercise freely, as my leak was caused by the surgery. I know that if you have a spontaneous leak, you are allowed to swim, walk and exercise gently, but you have to avoid strong exertion.
Things I find hard include going out for the day – having to lie in the car like a dog! I also miss spontaneity, as you have to plan your day carefully to reduce symptoms. My friends let me know that if I have to cancel an evening, it’s no problem to them. This reduces the pressure on me, otherwise I think I wouldn’t bother arranging anything! I find travelling very difficult and as a result, I will always miss a day when I get there and a day when I return because I have to go to bed due to increased head pain/pressure. Again, it would be tempting to never go anywhere!
I know it’s not my fault, but I feel sorry for the effect this leak has had on Clive and the boys - who are now 17 and 19.
Finding my 'people'
Dr Matharu encouraged me to join the CSF Leak Association – I had totally the wrong idea of self-help groups before I joined. It just goes to show how wrong you can be!
It has been a revelation meeting other people - at a conference and on Zoom Volunteer meetings - who understand the limitations and who are fighting to get research and better treatments for CSF Leaks. I found it very heartening too, meeting people whose CSF leaks are repaired - it is amazing that they are so passionate about helping others that still have a leak.
The Volunteers are a really fun and dedicated band of people from all different walks of life - we are so lucky to have them gunning for us.