Hi there, my names Ali and I live in Cornwall, UK.
I have been a long term sufferer of Spontaneous leaks and POTS since I was 13 (15 years ago).
Reading your stories are like hearing my suffering all over again at an early stage and I can totally sympathise with everything you both are saying.

I had a shunt fitted because the neurosurgeon in London thinks my pressure spikes at night and crashes during the day which causes the leaks because I have a weak dura due to Elhers Danlos, which gives me weak spots for some reason.

I have been for numerous surgeries both in the UK and in the USA (Cedars Sinai in LA under Dr Schievink and Queens Square Hospital, London). I am currently being treated for POTS at Bristol Heart Institute, Bristol where a specialist is providing me with excellent advice and care. It's a shame this is not being continued by my local NHS practictioners and funding is being refused for the trial drug I was recommended.

I don't want want to blabber on as this is my first post, but I have added both of you as friend contacts on here, as I would love to hear from your both in more detail. I know I have a long story to tell! I want to share information, experiences and knowledge as I feel I am stuck in a rut at the moment and that nobody else can sypathise with my condition. Constant, agonising pain throughout the day (every day), progressively worsening to a crippling pain throughout the day.

I am currently debating whether to begin fundraising for additional treatment in the USA, as the UK health service is failing me miserably. I do however have additional issues caused by MRSA following a leak repair surgery in the UK, which is significantly affecting the path of treatment as all the UK specialists are refusing to treat me due to the scar tissue formations from MRSA.

Hope to hear from you all soon.
Ali