Isolation, pain, small fits, lymphoedma

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bluelady18
bluelady18 Online Community Member Posts: 2 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
hello
i have a rare condition, I have three major operations within a short space on time,  one was to remove a tumour on my spine, which has left me in chronic pain the other was to remove another tumour in my throat, which caused swallowing difficulties and an accident during surgery damaged the carotid artery, which resulted in having blackouts and TIAs for seven year, then 2 years later a brain tumour. This caused major depression, isolation issues and attempted suicide. The problem with the carotid artery was picked up by another hospital for another complicated tumour, long sad story. After that I had a vein taken from my ankle all the way up to my knee and grafted into my chest to brain. The vein removal left me with further problems, lymphoedma, I had to give away all my shoes, the swelling and scar is ugly. The lack of mobility and medication has made me put on weight. I am very unhappy with my life, very loney, I can not drive cause of the fits and decreased blackouts. I am unsure what to do. Please help. 

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  • [Deleted User]
    [Deleted User] Posts: 728 Listener
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  • bluelady18
    bluelady18 Online Community Member Posts: 2 Listener
    No, an artery in my neck was damaged during surgery to remove a tumour, the surgeon did not repair it properly and as I result for 7 long years before a corrective operation was put in place, I had tias or transient ischemic attacks. I shake down the left hand side , I can’t see out of my right eye and sometimes I would black out and fall unconscious on floor. The corrective surgery reduced the eye problems and helped reduce the fits but they did a repair abit like a loop around the damaged part, which runs up the side of my face. I don’t keep a record anymore as I have got too a very low point. If I’m honest, I like a degree of negligence runs here but I didn’t have the more or the guts to take them on. With all the operations so close together and the spinal one causing terrible pain, I am very depressed. It is a one in a million chance for such a host of calamities to happen to one person but it has. Thank you for your reply it was very kind. I understand a lot about epilepsy as initially they treated me for it until I had proper tests and the results changed everything , then after the repair more problems with the leg they carefully dissected the vein from! I can not drive or never will be able to. I don’t have any family to support me and friends have got on with their lives. Sorry so negative

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