Advice needed!

I'm in recovery from SAH and oiling in September.I had hydrocephalus and double pneumonia post coiling. It's been a bumpy ride so far with stinking headaches, short term memory loss, nausea, forgetfulness and a few other minor side effects.

In the last 5 days my headache has become worse, I've been vomiting and I have a really stiff neck. My occupational therapist told me I had to see my GP and she ran there herself. I saw the GP who wanted to send me to our local hospital, only there was no beds. I must admit my heart sank!

I feel I've done something really bad. I'm so sore and I couldn't face a night I a draughty hospital corridor on a crappy uncomfortable trolley being ignored all night. So I didn't go to the hospital. My GP had even spoke to the medical team on call to try and arrange admission.....I'm not even sure there will be a bed tommorow......

My GP thinks the hydrocephalus might have come back. I think I'd be pretty upset if it has. On my last admission they did 7 lumbar punctures on me! I'll go in the morning to the hospital and find out for sure

I just feel I've done something stupid by not going to hospital tonight.

Am I so crazy for wanting to spend the night in my own comfy bed?

10 Replies

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  • What a shame to be denied the care you need when you're feeling so poorly. My last A&E visit was a 6 hour wait before admittance and I was in dreadful pain the whole time with an inflamed gall bladder.

    I personally can understand your reluctance to subject yourself to such discomfort when you're already feeling rotten ; hospital care USED to be about relief of symptoms but so many people are denied medical care owing to poor access to GPs and crumbling A&E departments.

    I do hope you'll get the help you need tomorrow m'dear. I'm sure some would say you're risking your health but there are times when we simply can't take any more discomfort. (and those trolleys are torture).

    I hope you're resting now. Best wishes for tomorrow. Cat x

  • No you aren't crazy but maybe a bit unwise. Do hope they have a bed for you today and that you are soon back home and well again. Very best wishes. Jan

  • No you haven't gone mad. None of us want more hassle than necessary. And I'm sorry to hear about your troubles. But Hydrocephalus can be serious if not treated so I would urge you to get to the hospital when you can. I suffer from recurrent hydrocephalus and was an emergency admittance the first time I got it as it may have caused a brain haemorrhage. Best of luck.

  • I've been told that if I ever think I've developed hydrocephalus again or that my shunt is failing, to attend the A&E department where I had neurosurgery, rather than my local one, and get them to bleep the neuro ward. Is this something that you could do which may help?

  • Just wondering whether you were lucky enough to get a bed Sil ? ...................scary that healthcare should be down to luck !

    Please let us know how you're getting on. xx

  • Thanks for your concern Cat, see below

  • I got a bed! For all the good it has done me!

    It turns out I have really high blood pressure. They did a CT scan (using the ancient CT scanner which they missed my aneurysm on prior to it bursting) and a lumbar puncture which showed high pressure.

    They gave me some oramorph for my severe neck stiffness/headache which partially fixed it, enough to let me function. They discharged me without rechecking my blood pressure....and the started me on ramipril. My severe headache and neck stiffness has now come back as the oramorph has worn off and they've only sent me home on the mild painkillers I was on before.

    They gave me the choice of sitting in a waiting room for 6 or 7 hours so I could collect my take home medication prior to going home or I could go home and travel the 15 miles back to the hospital after 6pm. It costs £25 for a taxi one way.

    They told me I didn't need to be in hospital anymore as I am not at risk of bleeding because I've had my aneurysm coiled in the past. I voiced my concerns about having a coiled aneurysm and being discharged with a blood pressure of 178/118. My normal BP is only 110/60. The high blood pressure is a new thing since last week.they still insisted I wasn't at any risk because it's been coiled in the past. She told me she was at more risk of a cerebral bleed than me.

    I'm so angry. I'm back at home with a severe headache. They made me start ramipril and I have no way of checking my blood pressure. I only have mild analgesia and I'm in agony. I'm not sure what to do! I'm pretty upset !

  • High blood pressure can take several days to settle down and, until then, your headaches will probably persist.

    Keep up the Ramipril and the pain killers ; the pain should gradually subside as your BP stabilises. And do what you can to reduce your stress levels as stress is certain to exacerbate the problem.

    I suffered with severe headaches for 3 months after coiling so I'm not surprised you're still struggling with pain, especially since your added hydrocephalus and pneumonia.

    Forgetfulness, fatigue and headaches are common after-effects of brain injury I'm afraid ; it's mostly a matter of managing the symptoms in whatever way suits us personally.

    I hope you'll see some improvement by the weekend Sil ! x

  • They're also querying pseudotumour cerebrum ( idiopathic benign inter cranial hypertension) they're arranging a referral to a neurologist

  • Pseudotumor cerebrii even opps

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