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Old 08-11-2011, 05:57 AM
hemyinspain hemyinspain is offline
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Join Date: Mar 2011
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Default No Help/acceptance Anywhere for my CSF leak Please help!

I had spinal surgury on slipped disc in my lower back in sept 07, a week later i had a severe fast csf leak, I was rehospitilised, operated on to fix leak, then suffered meningitis caught in theatre, then further severe leak. Further surgery followed again to repair leak. 3 months later i was sent home where 2 days later I suffered the same symptoms although the liquid could not leave my body at this stage as the scar had healed and a large grapefruit fluid lump formed under the scar. From this date I have been trying to get a diagnosis. I absolutely believe I still have a slow csf leak. In July 08 I had a series of nuclear scans which after 48 hours showed displacement of the dye and leakage and unexplainably the dye around the brain did not move or disipate at all during the entire 72 hours of scans. I have been under various neuros, Londons UCLH neuro department, Plymouth neuro and surgical departments, POTs testing, caffeine infusions, x rays, failed blood patch (failed due to inabiliity to get the needle through the scar tissue) ICP Bolt pressure monitoring etc. You name it, they have all done it. All inconclusive. Now I am at the end of the road and the end of my tether. No one will do anything. I have seen a Dr specialising in Migraines in Harley street who agreed that there is no way I have migraines. he gave me botox into my forehead above the eyebrows to numb a nerve that runs behind the eyes and I have to say that was incredible and almost completely stopped the pain behind my eyes for approximately 2 months. But my headache from low neck and all the rest of my head was still there.
I have severe headaches each and every day. I wake up with a level 2/3 and by mid afternoon the pain is at an 8/9. I find long conversations very difficult, causing my headaches to increase, I cannot concentrate well, I have ringing in my ears sometimes and struggle to cope with loud noise, my balance is poor, pain behind my eyes unbearable and vision seriously affected. One eye drooping more and more on a weekly basis (although the botox did help that for a while) Laying down eases my headache so long as I dont use too many pillows or tilt my head/neck too much. If I say on my tummy and arch up with my shoulders even a small amount my headache increases so rapidly! Also if I am stood up and I arch backwards a small amount the same happens.
I truly believe that i still have a leak or perhaps a movement of fluid blockage and I do not have migraines. Can anyone please please help me or advise me what I can do now? Where can I go? Who can I turn to? Who will listen? I lost my business and my home due to the original surgeries and am sueing the hospital in spain (Tarragona) where it was carried out but to be honest i would live in a tent if my head would stop. I have been seriously depressed and even attempted suicide twice in the last 18 months however thanks to an amazing counsellor who has seen me for 4 hours every week for 15 months I am mentally and emotionally stronger and much more stable, i just cant cope with the pain. Since all of this happened I now have a problem with my heart that no one knows what it is, inverted Twave apparently with skipping of beats and chest pain on any excersise, not that I can do any because of my head. It seems I am Sarah with no answers. I cannot go on like this and need so desperately to get rid of my headaches even if only for 3 days a week. I am so hoping someone here will have some advice that will help me finally get some answers.
Thank you for reading.
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