Struggling 10 years after craniotomy for subdural haemorrhage and subsequent infection. now struggling with adhesions

Initially got back to work and struggled with daily headaches - in bed for 7pm but accepted that as my lot. now i'm struggling. For the last 3 months, i'm off work again with a dragging sensation from my plate - electrical buzzing sensation shooting through my brain, horrendous auditory stimulation, all worse when i'm upright. My own research finds minimal evidence that this is due to adhesions from the infection. I'm so desperate, i've been referred back to a neurosurgeon which scares the life out of me. I know more surgery would be massively risky but at the moment i have no quality of life. Has anybody else been in this position??????

4 Replies

  • Hello midirs. No, I haven't experienced these symptoms but you already know what you have to do. If it were me, with such poor quality of life, I would want whatever the neurosurgeon recommended to address the problems, even though that might involve surgical intervention. But it very well may not.

    I don't know the nature of your research but I would caution you against reaching conclusions from internet sites. A little knowledge is often misleading and alarming and, without your personal history, is not reliable. These symptoms may or may not be infection but believe nothing, other than a face to face diagnosis based on the appropriate tests.

    Try to fight the fear by seeing this as an opportunity to get your life back. I feel for you midirs and wish you all the very best. Please keep in touch. Regards, Cat.

  • Cat and others on this site have been a tremendous support to me. My problems with my son (TBI) are still ongoing but I hope you find the same level of empathy and support as I have. Take care.

  • Thanks Cat

    Its not infection, i'm almost certain scar tissue, but there's so little written about it. I am cautious with the research i've found. I've only found one piece that could be considered reliable, but was just hoping there might be somebody out there who'd had a severe infection post surgery and the effects it was having a few years down the line.

    So frustrating to have got back to work, and now gradually getting worse again. Feel like i'm falling apart. Can't sleep as the pains not being managed well. GP talking about patches, but not keen and i don't know why. Just want to get back to work again.

    I hate my head so much

  • I have to say midirs, craniotomies are not something I'm familiar with. I had my SAH coiled two years ago which resulted in headaches, memory issues, poor balance, etc.........but your procedure is obviously more invasive and I'm so sorry for the problems you're having.

    When was the referral to the neurosurgeon made ? But in the meantime you need to control the pain so why are you worried about using patches ?

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