Quote:
Originally Posted by alieyers
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
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Hi Ali,
I read your post with great interest as you are the first person I have been able to find with symptoms like mine.
I have been under the care of Queen Square for the last 3 years and have had a whole barrage of tests and treatments with no success.
I too have EDSIII and am having a shunt inserted in the new year for exactly the same problem as you. My surgeon says he's only done 4 for this specific type of treatment, 2 have been successful in helping but 2 have failed. I wonder if you are one of the 4, and if so has it helped you?
I have found out that Dr S at Cedars Sinai does an operation to remove part of the dura in the lumbar spine in order to decrease the size of it allowing what csf one produces to 'fill up' the system properly. Is this something that you've had done there?
Sorry for so many questions, but, as I'm sure you know only too well, when you find someone that might be in exactly the same position as you, you have to grab the chance to ask questions with both hands!
Many thanks Ali, I hope you are not feeling too bad at the moment (I know you have 24hr pain like me, but you know what I mean!), and I look forward to hearing from you when you are able to reply.
Best wishes and many thanks
Sarah