Daily severe headaches/botched spinal surgery
I also have headaches all day every day, starting as bearable when I get up and increasing during the day until I can hardly open my eyes in the evenings. My vision gets blurred as the day goes on and sitting agravates it. Going from sitting to standing is awful as I get a huge surge in pain for a short period.
I have undergone all sorts of tests. My headaches started after spinal surgery in Tarragona, Spain that went wrong leaving me with a huge csf leak. The leak site was repaired in further surgery during which I contracted meningitis in theatre. The leak site then burst open again and I had another huge csf leak. Again further surgery to repair the leak. They claim this worked however after three months I returned home to have another severe headache that grew and grew and at the same time I large liquid filled lump developed in the scar site on my back. I believe that this was another csf leak but did not leave my body as the scar had healed up.
I had a series of scans 12 hours apart for 72 hours after they had inserted dye into the csf to see if and where it was leaking. This came back with a probably leak. A hospital in Barcelona attempted a blood patch but were unsuccessful due to scar tissue. This was a very traumatic experience.
I then managed to get accepted by the top team of europe in London, Queens Square who have done caffeine infusions, POTS testing (Postural Ortostatic something or another) This came back as inconclusive. They then put an ICP bolt into my skull at the point where the fringe finishes and joins the main hair. This was in place for a week to test the levels of the csf fluid. This also came back inconclusive. Now they do not know what to do, continue to say that it cannot be csf linked however I still believe it is.
They have diagnosed chronic Migraines. I do not suffer from light sensitivity, noise sensitivity, nausea (other than when the headache is terrible at the end of the day)or any of the other symptoms described by chronic migraine sufferers. My pain is more constant tight burning type pressure which is completely dehabilitating. Driving is horrid as is in the sitting position causing the headache to increase.
I wonder if anyone can help me/us? I am in the UK. I am going for an injection in the nerve at the back of the head on Monday and am dreading it and have read far too many stories where it just doesnt work or has small amounts of success.
I have an apointment to see a guy in Harley street on 19th of March. He is of the Migraine Surgery Centre and does a test where he injects botox between the eyebrows to paralyse the nerve between the eyebrows. If this helps the headaches then they can operate to permanently disable that nerve, no more frowning but that cant be a bad thing can it!
I have also been in touch with a Dr Shevel of South Africa who has a completely new take on constant head pains. I truly believe his approach would work for me and I would love to be able to afford to go and see him but until I go to court with the case I have against the original hospital that performed the botched surgeries I cannot even consider South Africa.
Anyway I hope some of my information will help someone and in the mean time would love some feedback on this nerve injection in the back of the head if possible please.
Thanks for reading