I had an operation for a Subdural Haematoma 3 months ago. I can't fault the treatment in hospital

but received very little information about what had been done and the symptoms I was likely to experience on leaving hospital. This has caused me considerable anxiety. Obviously the hospital has realised there is a need to do better. I had a phone call from them saying they hoped in the future to

counsel patients on leaving and to have weekly follow up phone calls. However this service would depend on NHS funding and it is too late for me. The form that accompanied me only said I was to have the stitches out 6 days later and stop taking aspirin for 6 months ( I took 2 .75 a week). The pain is considerable and variable. You think you are getting better then have a really bad day. Even a leaflet telling patients what to expect would be helpful. It was only when I asked a pharmacist if I could take Ibuprofen that I found out this could cause bleeding. No follow up appointment is offered. The OT has been very helpful but I had to wait ages to see my GP and the reassurance of seeing a Consultant would have been good. My GP tells me the headaches could go on for a year.

11 Replies

  • Hi I was the same as you no imformation for 2yrs then I had atotal break down and phoned my local Headway. There was an angel talking to me , at last someone who knew. I went along and found that talking to others helped, we may all of got head injurey in different way but symtoms are nearly all the same.

    As for headaches they do stay with you, I'm 6yrs on and still get them. You need to talk to gp about pain killers and please remember if you take to many you can get rebound pain!

    Its along road to the new you but you will get there(can be really hard) so get support from the best people Headway

    All the best of luck jacxx

  • Many thanks - my GP said it would be a year of headaches which is bad enough! The cause of my Subdural haematoma may have been a car crash which happened two and a half months before I had brain symptoms, although I did suffer some injury from seatbelt/ airbags. I am seeing an independent brain consultant to see if the accident was linked to the haematoma but apparently I won't be able to ask him for advice. A large white van drove into the back of us writing off our car. We were not going to claim apart for the car but if it could have caused head injury we will as it was definitely not our our fault. I am glad to talk to others and be in touch with Headway.

  • The lack of aftercare is something many folks complain about. After being treated like royalty for 2 months ( the care was exceptional) I found myself discharged, along with all my strange symptoms and apprehension, into a sort of vacuum.

    I found my GP utterly clueless and, if I'm honest, not really interested. And I hadn't heard of Headway in those days.

    So we muddle along as best we can, despite some scary symptoms, knowing how cash-strapped NHS services are dwindling.

    You might try phoning the secretary of the consultant who treated you to ask if there's a 'specialist nurse' who you can speak to for advice on pain-management.

    Also, try the Headway helpline on 0808 80 2244, mon-fri, 9am-5pm.

    All best wishes, Cat x

  • Thanks very much. I was only in hospital for 4 days including a weekend so never met the consultant. However the pharmacist also suggested contacting the Consultant's Secretary and I will do that if the really bad headaches come back. I find recovery is very up and down. You think you are on the mend then have a few really bad days and worse still nights.

    Many thanks Hazel

  • Similar, Hazel. I had a subarachnoid haemorrhage due to a ruptured aneurysm, and was in hospital for two weeks. It was in the car on the way home that the husband told me they'd found two other aneurysms in there, and I'd probably need more surgery.

    The 'aftercare' was uncoordinated, some woman phoned me out of the blue to say there'd been a cancellation at the rehab centre, and I could have it... I didn't know I'd been referred for rehab, and was still in the 'denial' stage, where I thought I'd be back to my old self in no time.

    Good days, and bad, my follow-up with the Consultant was cancelled three times, and my GP has had to ask me what the operation was both times I've been to see him since. This group has been fantastic, though, and Headway are spoken very highly of.

    Talk to the girls and guys on this forum, they're incredibly supportive, and most of them have 'been there'. Brains are tricky things, and an injured brain does tend to play up, I've had anxiety, borderline paranoia, crashing fatigue, and lots and lots of headaches.

    My advice would be to eliminate the obvious, make sure you're eating properly, and hydrating properly, getting enough sleep, and avoiding any stimulus that causes headaches in you (for me, that's my husband.)

  • Thanks very much for your helpful advice. Hazel

  • Thanks very much for your really helpful advice. Hazel

  • Thanks very much for your really helpful advice. Hazel

  • I've been home almost 2 weeks now suffering the same thing. I thought the care start to finish was horrific. Mine was spontaneous and because I'm youngish and have had no trauma they are puzzled by this. And not really bothered in finding the cause after a couple of other options were exhausted.

    I am going to be forever paranoid given the percentage rate of return as I am still young it's going to be likely in my lifetime.

    When you mentioned that the pharmacist says ibropen can cause bleeding this made something click. My migraines which I don't normally suffer from I was using this painkiller to get rid of them. I wouldn't say I took them loads just the recommended dose once a day and the migraines were on average twice a week. This was continuous for just over 3 weeks till I was admitted. Starting to think this could be another thing to add to the list of my theories.

    I too thought I was doing good on recovery had few days of no pain able to get through a whole weekend with no paracetamol than after that I start getting pressure and aches and was like what is happening I was doing so well Is something wrong.

    3 days now I been waiting for my consultant to call me back. I have no faith in doctors. We just rely on Google.

  • Sorry to hear you are having such a difficult time. I have found the Neuro

    Occupational Therapist very helpful. It does help to have a rest during the

    day. I have found too much time on the computer is not good. Times without

    Radio or TV are also helpful. I have just spent three days in London and

    have a bad head today - will have to take some painkillers. Hopefully

    going to a party tonight. I just wish we were all given more information

    about what to expect before we leave hospital. Hope you feel better soon.

  • If you get migraines use migraleve pink and yellow,  ask your dr u can get theon pprescription xx

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