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Brain Aneurysm Support

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advice needed please

burtongal profile image
6 Replies

hello all hope you are all well ,im new to this page its great to find a space for brain anuersyms as there is not enough information out there for us , i did not know there was such a thing as a brain anuersym untill last may when i collapsed at work woke in a and e next day was told i had a brain anuersym , went to notts hospital in september last year had open skull op it didnt go as planned , going in next ween for endovascular operation has anyone on here had it if so what can i expect post surgery , no help off hospital , my mental health is not good and i feel noone understands how im feeling from drs to some of my family anyhelp greatly appreciated thank you xx

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burtongal
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Jelly0206 profile image
Jelly0206

Hi I had never heard of them either until 10 yrs ago when I was 37 weeks pregnant and callapsed at home. I woke up days later in hospital after Dr's had delivered my baby by " section and performed brain surgery to clip the aneurysm that had already ruptured whilst I was in a coma. My little girl is 10 this Yr and wasn't affected thank goodness. I have recovered well being as they told my family I would never walk again. I was walking and home from hospital after 6 weeks. And now 10 years on I still get really tired and have the odd headache but I am thankful every day to be here to see my little girl grow up. Recovery doesn't happen over night but it does happen more quickly with patience and positivity. Good luck. Hope everything goes well and you make a full recovery xx

jacxx profile image
jacxx in reply to Jelly0206

Hi I'm 10 yes on from BA, sounds like you need to phone Headway. Main one or a local group.

Just be kind to yourself and don't push yourself, if tierd then put your feet up fall asleep or just sit quietly.

drink plenty of water (tea in my case).

Tiny steps, don't pressure yourself.

Unfortunately a few hospitals have no real idea how to help or advise even gps struggle. Reason for this is we who survive are in a minority, we are a hidden disability

BE KIND TO YOURSELF, LAUGH, TINY STEPS

jacxx

Contact HEADWAY

MsSJones profile image
MsSJones

Hi Burton gal, I can only speak about endovascular treatment for an unruptured aneurysm which is not much help to you but anyway, I was in hospital 15 days after coiling treatment and stent and now 3 months later I feel fantastic. I had been told to expect 2/3 days in hospital but i had a few complications though the effects were only temporary (in partic, dysphasia - that is, I wasn't making much sense for about 5/6 days). Thing I am shocked about, is that your hospital is being unhelpful. I would write down any questions you can think of, then ring and tell them you need more information. Perhaps best face to face with the consultant. Some of it inevitably is unpredictable - we are all different and will respond differently, so they can give only statistical evidence on many aspects of what to expect, but at least they can give you more on what actually happens during the procedure and what generally happens afterwards. My feeling is that endovascular treatment, while very serious indeed, is fantastic and clever because it is so minimally invasive, and I must say that my hospital, the Walton Centre in Liverpool, could not have been more helpful and honest about what I should expect.

Collibob profile image
Collibob in reply to MsSJones

I'm three days after my coiling I was discharged after an overnights stay. Whist in hospital no pain at all since being discharged a day ago the headaches are terrible and my vision seems to have dipped slightly. Hoping both will improve with time

SAH-survivor profile image
SAH-survivor

Hi burtongal

I knew nothing neither until I collapsed in August 2018 and had a sabarachnoid hemmorage followed by coiling surgery. This site is fantastic for advice but the american brain aneurysm foundation also has lots of patient experiences. It is nowhere near as the same support you get from headway but you can read patient stories.

MsSJones profile image
MsSJones in reply to SAH-survivor

gosh, poor you. I am sure it will all get better. Lots of luck and stay well, and keep in touch with yr consultant xxxx

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