Living after Aneurysm

[ABouvier]

I had a craniotomy for a aneurysm clipping in 2007 and have never been the same since then. Over the years I have been developing multiple "medical issues" that are unexplainable and I am starting to feel like my family and even some doctors are beginning to look at me like a hypochondriac. I've been diagnosed with Meniere's Disease, Fibromyalgia, Angioedema, costochondritis, I suffer from migraines, I'm irritated in an overstimulated situation and cold weather is extremely intolerable to me, painful even...these are some of the things that surfaced over the years. The pain is real and a lot of it is so hard to even begin to describe. The more I research I'm realizing it all leads back to my craniotomy. When I came out of my surgery the first thing my mom said was "my daughter's not the same person" and I wasn't. Doctors need to help patients understand their issues more and offer more support for it. I think people need to be more educated on aneurysms, how to live with the after effects....because your life will never be the same!

[sca2013]

The reason doctors don't help their brain patients understand what has happened and is happening is that they themselves have never been through what you have been through and have virtually no training about it. So they really are incapable of doing that, which makes it extra frustrating for those who are going through it. Best places to get understanding and support are places like Health Unlocked or headway.org.uk/ or The private Facebook group "The personal side of traumatic brain injury" and many others. I wish you luck on finding the support you deserve.

[Gaia_rising]

Good morning ABouvier and welcome.

I doubt that many of us here will disagree with the point you've raised, about the cumulative stack of side-effects and symptoms we all find, over time. From the initial "Oh, what's THAT?" when a new one shows up, to the slow slide of the creepy-up ones that we auto-compensate for, because that's what we learn to do. (I'm smiling, but it's not funny, I have 25 pages of 'impact statement' ready to go, for my PIP tribunal, NOBODY would want to read 25 pages of 'me', much less live 24 hours as it, but, the systems are what they are.)

We fall into something of a gap once the initial surgeries are successful. They ARE successful, because we come through the other side, but what comes through isn't the same as what went in, and that's what can be difficult to articulate to others. If we'd lost a limb, it would be obvious, it would be visually apparent to others, but our loss, our damage, is internal, we look 'the same', and for every other type of surgery, there's a recovery period, then the expectation that, after a certain period of time, you're 'better.'

Not to detract in any way from the emergency care I was given by the NHS, they did manage to save the majority of my functionality, it's the what-happens-next where things, in my opinion, fall short. (Botched discharge, fragmented and then non-existent after-care, having to chase up re-referrals...) We 'walking wounded' tend to end up doing all the leg-work ourselves, and I DO feel a pang of guilt even stating that, because, on good days, I can walk a fair distance, before I have to stop, and pretend to tie my slip-on shoes, when my head decides that the footpath is moving...

No answers, only ever more questions, because we all 'recover' at different rates, to different extents, there's no universal 'What to expect' handbook for us, but a lot of "That might improve over time." answers from medics. (Side-rant, that type of approach massively compounded the guilt that I, personally felt, about not getting 'better' straight away.)

This forum is an excellent resource, non-judgemental, and with masses of lived experience between us. (Not blowing my own trumpet there, I'm relatively fresh, I only had my brain pierced in February 2015.) We're not medics, but we've lived it, you'll probably find a lot of "Oh, I get that one, too!" (Worst game of 'snap' ever.) 'We' know that un-injured people don't understand, they can sympathise up to a point, but they don't live 'in' this new weird-wonky world, and some of them can be less than charitable. "Another headache? Just take a couple of paracetamol!" "Yes, I'm tired too, you're ALWAYS tired." (I very quickly stopped telling other people when I felt unwell, because I didn't want them to think I was weak/whining... BAD strategy.)

Strategies are what we build, over time, and, while we're not medics, we're always happy to share experience, or suggest routes you might not have investigated yet. You are not alone on your journey.

[neilhapgood]

Hi there, I also had an aneurysm clipped, in the end I put a website together with the kind of advice that would have been really useful to me in the early days as it was such a lonely experience, you can read the website here braininjuryftp.com

[lcd8 in reply to neilhapgood]

Thanks Neil. I love your website.

[cat3]

Sadly A, the aftermath of brain injury is where the real issues begin. We were saved ; we're alive, but the after effects are a lifelong myriad of so many different challenges, some painful, some antisocial and others plain infuriating.

We're all here for each other, and I hope you'll find some reassurance and comfort from spending time amongst us.

Cat x

[fredikins]

Pesky craniotomy who'd have one eh. I never gave consent for mine ( I was found to lack capacity) as this has to be the absolutely most invasive surgery imaginable, having your skull cut open and then your very being poked around with is the reason I have an advance directive in place to stop this a ever being done again, all your natural attributes, its my guess, have been affected or even destroyed, its no wonder your mom said what she said. I totally empathise with the cold thingy, I never really felt the cold, now I shake on the inside which is very uncomfortable and even fear the cold. Wishing you well Abouvier, Fredikins.