Hi
I was wondering if there are any UK leakers, past or present on here that would like to talk to other UK leakers, both healed and sealed, new leakers and those, like me, struggling to get a diagnosis.
I have found amazing support on this site and others but would love to be able to talk to UK people too.
I am struggling to get a diagnosis, I had spinal surgery in Spain in 2007 followed by large fast CSF leak at operation site, surgery to repair, meningitis, further large fast leak, more surgery to repair, in patient for 3 months, home, loud pop in my back and large grapefruit size fluid filled lump appeared. this gradually disappeared but I still have all the symptoms of leaking. I have had a cysternography in 2008 in Spain which showed a leak followed by an attempted but failed blood patch as neuro couldnt get the needle through the scar tissue.
I relocated back to the UK and have been through 4 hospitals in the UK. London have finally said I have migraines. I completely disagree as does a private doctor for migraines on Harley street.
I cannot get any help from any where and do not know where next to turn. I have no quality of life, headaches all day every day worsening throughout the day until I have to go to bed at tea time in tears. Once laying down the relief is very welcome although my headache doesnt completely go away it is a lot better. Sitting is horrendous and going from sitting to standing always produces a thunderclap throbbing headache with the associated nausea, dizziness, blurred vision and lots more. This settles after a minute or two to the normal awful headache.
Anyway I would love to meet people from the UK if there are any out there.
Best wishes
Sarah
I was wondering if there are any UK leakers, past or present on here that would like to talk to other UK leakers, both healed and sealed, new leakers and those, like me, struggling to get a diagnosis.
I have found amazing support on this site and others but would love to be able to talk to UK people too.
I am struggling to get a diagnosis, I had spinal surgery in Spain in 2007 followed by large fast CSF leak at operation site, surgery to repair, meningitis, further large fast leak, more surgery to repair, in patient for 3 months, home, loud pop in my back and large grapefruit size fluid filled lump appeared. this gradually disappeared but I still have all the symptoms of leaking. I have had a cysternography in 2008 in Spain which showed a leak followed by an attempted but failed blood patch as neuro couldnt get the needle through the scar tissue.
I relocated back to the UK and have been through 4 hospitals in the UK. London have finally said I have migraines. I completely disagree as does a private doctor for migraines on Harley street.
I cannot get any help from any where and do not know where next to turn. I have no quality of life, headaches all day every day worsening throughout the day until I have to go to bed at tea time in tears. Once laying down the relief is very welcome although my headache doesnt completely go away it is a lot better. Sitting is horrendous and going from sitting to standing always produces a thunderclap throbbing headache with the associated nausea, dizziness, blurred vision and lots more. This settles after a minute or two to the normal awful headache.
Anyway I would love to meet people from the UK if there are any out there.
Best wishes
Sarah
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