Hi me again.
After a subarachnoid haemorrhage and Cvst I had a shunt fitted for IIH. I was discharged from hospital with little to no advice. I ended up back in hospital and had to have my shunt revised twice in 3 days. 2 abdominal surgeries. 10 days in hospital. This time when I was discharged there was a whole uproar about why I’d been previously sent home with no neurologist follow up, no mention of remaining blood clot and absolutely no physical or mental rehabilitation/support. I’m feeling a bit lost.
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I’m sorry to hear that. Do you have anyone who can advocate for you?
Hi @Elvie, it sounds like you’re having a tough time. You already know that there are many helpful folk here to support you, but it sounds to me like you need more personal advise. Have you looked at contacting a local Stroke Association group, or considered signing up for a regular support call?
https://www.stroke.org.uk/stroke/support/services
I’m becoming increasingly frustrated with the lack of professional emotional support after healthcare emergencies. This isn’t just stroke, any life threatening or life changing event is can you scared and confused and we all need our hands held at times like that. In my experience the NHS isn’t equipped to deal with that effectively. That has to change.
I hope that you start to feel less lost soon, and that your recent surgeries improve matters. Keep in touch and let us know how you are doing.
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After my stroke 15 months ago I was discharged from hospital having had a 10 minute interview with a heart failure nurse who told me I had heart failure/atrial fibrillation and cerebellum stroke. I live alone with no family or friends nearby. I went home with a stick to stagger about with on the days I could walk (fortunately the owner of the local kennels had gotteninto my house to rescue my dogs and kept them for a month), like you I felt completely lost. I had to set about trying to find what all this meant…Anxiety thro the roof!! However as the days passed, I managed to cope with the staggering around, little gains every day. Today, I have few physical effects altho sadness for my past life remains prevalent, plus fatigue. I try to treat each day as it comes, I can walk and still have my dogs. I say all this to give you hope for the future, there will be depths but that is all part of recovery…provision from health services is very much a lottery and I had no contact for the first two months…this is a magnificent supportive forum and there will be people here who will have more expert experience and advice than me so keep reading. Hang on in there xx
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I would visit your GP & get them to sort all the relevant follow ups if the hospital hasn’t done it again. You should also speak to them about how you are feeling…book a double appointment. They can offer support & reassurance.
There is always this community too. Keep posting There is usually someone who can help.