Hi everyone. I am a suspected UK leaker who has been through 5 different hospitals and neurologists, neurosurgeons and trauma surgeons and am being diagnosed left right and centre with 'migraines' 'physcological issues' and much more. No one here in the UK is prepared to carry out the correct diagnositic testing that IS available on the NHS to prove or discount a leak. My history has been posted on here before but briefly, I had two huge CSF leaks after spinal surgery L5/S1 in Spain. I had two repair surgeries, and am absolutely convinced that as the high pressure was not addressed after the repair surgeries I am still leaking 4 years later. I am a member of CSF leak page on facebook and also www.****.org and I am trying to gather up as many people in the UK as possible who are going through the same problems I am. My aim is to get everyone who is able to help me get Dr. Linda Gray from Dukes Medical Centre to come to the UK and diagnose and treat as many people as possible. But I cant do this alone. im very sick, cannot be upright for long, now have the same L5/S1 disc out again and cannot walk at all. I have been flat since 27th November 2011. Is anyone interested in helping? Is anyone struggling with this as I and a few other are? i would be very grateful to hear from you.
So far Ive written to BSNR - British Society of Neuro Radiologists and sent them this letter. Lets hope we get some advances forward.......
I am researching neuroradiologists that may be willing to work with the renowned Dr. Linda Gray of Dukes Medical Centre, Durham, NC, USA whose speciality is locating and fixing spinal CSF leaks. http://www.dukehealth.org/physicians/linda_g_leithe
I am a UK leaker (4 + years), and there are a fair few of us on a facebook page and www.csfleak.org who are getting together to try to locate facilities where Dr Linda Gray would be able to come over with a few of her team to help us. All of us have been through so many doctors, hospitals, specialists, etc and almost all of us have been cast aside with 'migraines' or 'physc problems' Yet most of us have proof that we are leaking.
On a personal basis, I am almost bedbound, have terrible headaches all day every day that worsen on being upright pressure behind the eyes, pain and stiffness in neck, muffled hearing with occasional tinnitus, vision deterioration, pressure like tightening and hot in my head and my brain feels like it is being sucked down into my neck. My CSF leaks were a result of spinal surgery L5/S1 decompression, two surgical repairs both of which blew out, meningitis, and another leak. I also have had a radionucleartide cisternogram showing a leak. Yet despite all this evidence I am getting no where and have been discharged by many doctors and specialists. I also have the same disc now herniated again and trapping the nerves causing numbness in my right lower leg and intense pain in both legs. I cannot walk more than a few steps with crutches and use a wheelchair. And yet no one will touch me because I am too high risk.
Here is the last email I received from Linda Gray which points out what she would need.
Sarah,
So glad that you emailed me..I have been thinking...I think there is one other person in the UK who is having problems...would the health service at all be amenable to having us come there to treat some patients and to show others how to do what we do???? We would need a hospital with a CT fluoro unit and I am not sure what all the medical privileging restrictions are..if you decide that you might want to ask about this, I'm sure they could let us know about that!
Wish I could help you..not sure if this is an option but it might be worth looking into!
Hang in there..there was a recent paper from Germany where they did targeted patches like we did..i will try to find the link and send it to you!
Ciao
Linda
We would then of course need to find a way to get the NHS to agree to this. I have written to her again asking her for a more formal letter on headed notepaper and for her to send some articles she and her team may have had published.
I would be very grateful if you could help us in any way, even if only to advise us which way to go next. We are writing to our MP's and asking for a meeting with the Health Secretary, and are hoping that there is a unit somewhere in the UK that would be willing to work with Dr Gray and her team, possibly learn something and maybe in the future there would be more support and diagnostic availability for people with dificult to diagnose CSF leaks.
Thank you for taking the time to read this email.
Regards