AIBU to feel I potentially have a max of 7 years of 'normal' left?

[OfMe]

So, long story short - fell down and hit my head at end of last year, had a partial seizure a week later, GP sent me for a scan, turned out I have a small brain aneurysm (4mm). Neurologist said they'll rescan in 6 months to see if it's grown, get me on the list at the nearest city Neurosurgery, and if/when it gets to 7mm, that'll be the point where I'll need surgery.

Stats on aneurysms rupturing aside, from what I can tell, aneurysms have an average growth rate of 0.34-1.63mm/yr, which means I'm probably looking at surgery in 3-7 years, yes? And the stats of post-surgical aneurysms aren't great either, so I've made DH and I make a will, and next month I'll be making a power of attorney online.

So, I'm probably overly worrying about this, but since I saw the neuro in February, the GP has been trying to get my blood pressure under control, but so far, the first medication had a minor effect, but gave me loads of side effects, so I've now stopped taking that, and of course, it's gone right up again.

I don't think I'll be getting another scan until August, so in the mean time, I've cut out all coffee, stopped vaping, and am on a VLCD to lose weight fast. Exercise isn't really much of an option with having a connective tissue disease, but when I come off the VLCD, I'm going to take up walking to see how I do with that.

Am I being a worrywart? Should I just be chilling out about it all, or should I be getting on the GPs back about this?

I'd tread very carefully with making a power of attorney. At least get plenty of good legal advice in the event that your and your DH split up.
and on that cheerful note....

There's very little chance of DH and I splitting up - he's the best person I've ever known, and he didn't want to get a Will because he doesn't like to think about me possibly dying before him - all in a good way! He's seriously the kindest, sweetest, most generous and lovely man I've ever known, and I'm seriously lucky to have him as my husband and father to the DCs. So I've no worries about having him as PoA - I was probably going to stick my oldest daughter in there as back-up, anyhow.

You can give 2 people POA and there are two ways they can make decisions. Jointly , where they have to agree , and separately where one make a decision without the other. So it could be worth while doing the jointly option so that the burden isn't placed on one person.

I don't think there's anything wrong with doing this. It's better to do it now rather than later as it will only come in effect if you get too ill to make those decisions. We didn't do it for my mum and it made sorting out her finances, etc, much harder by the time she was too ill to do it herself.

Have you been told yours is a particularly high risk aneurism? Because the vast majority never burst, do they? Some estimates are that up to about 1 in 20 of the population have aneurisms, and most are never discovered. Was yours basically discovered by chance? Or was it responsible in any way for your seizure?

Not all aneurysms are the same - your neuro-logist/surgeon is the best person to advise you about the exact risks/predicted timeframe for your particular aneurysm.

Well that's it - it's so difficult to say - it seems a bit weird that I slipped, gave myself concussion, but that the partial seizure didn't happen for a week. But the neurologist said it would be up to Neurosurgery to decide, but it didn't seem like I was going to get an appointment with them before having a second scan six months from the first - I think it's just down to them being overloaded and having a huge waiting list more than anything. I think a 4 mm Middle cerebral artery aneurysm probably isn't going to worry them too much, but the neurologist was concerned that i had high bp. It's that I think I'm worried about more than anything, as it's been 3 months since I saw the neurologist, and my bp is just as high now as it was then. I just feel like the NHS is so fucked that unless you're actually lying on the floor bleeding out (or in, in my case), everything else is being postponed as much as possible. When they said 'it'll be fine as long as you get your bp under control' I was thinking a couple of months to get it down, but I don't really know what they mean by short or long term!

Getting your BP under control is essential, even if you didn't have an aneurysm. Are you now taking another BP pill? It can take a while to hit on the correct dosage/combination to control BP. Go back to your GP to discuss this if you haven't already.

the first medication had a minor effect, but gave me loads of side effects, so I've now stopped taking that, and of course, it's gone right up again

So you need to be on another BP medication. There are many options - see your GP and get that BP under control. .

Yes, it sounds like you're feeling un-contained and that you're carrying the burden and responsibility alone (because you've not seen the specialists enough yet). Very understandable, and difficult. It's notoriously hard to cope psychologically with so much uncertainty - to the extent that often answers make people feel much better, even if the answers are not good news.

I agree you need to go back to your GP, and even if she/he can't give you definite answers, at least you can deal with the whole thing collaboratively.

I'm sorry it's so stressful

So sorry you are coping with this. I am also living with a small aneurysm. It was also after I had a severe concussion. I had seisures before the discovery. My neurologist does not think they are related. At time, he is choosing a very conservative approach. I have scan done every year to monitor growth. Their has been no growth in three years.

I still have neurological deficits from the brain injury, dropping or substituting words in written or oral communication. I’m on anti seisure meds.

Good luck, Op. I’m hoping your aneurysm will not have much or any impact on your life.

Dropped a word right there, meant to say it was also discovered after a concussion (sighs)

Have been reading through this thread with interest, which connective tissue disorder do you have OP? Is it one of the EDS syndromes?

Thanks everyone - and sorry to hear you have one too, SecretWitch. At the moment, Zakana it's kind of down as Undifferentiated Connective TIssue Disease - they thought it was RA for a while, but it didn't fit a specific pattern on the radioactive-blood-test-for-inflammation-that-they-do-that-I-can't-remember-the-name-of, I guess? Luckily the CTD isn't anywhere near as bad as it used to be, and I'm up to a point where I can function relatively normally, as long as I don't run, walk up steep hills, or walk for more than a couple of hours at a time - so I can at least go shopping and stuff - but the lights in supermarkets set me off a bit still.

It's really good that yours hasn't grown in 3 years though, SecretWitch! And that's made me feel a bit better, although obviously I still empathise with how it sucks to have one sitting in your head like a little ticking clock!

If you are looking at seriously changing your diet for health reasons, check out the Forks over Knives facebook group, it can be a bit much, but there is a lot of people radically changing their health.

OP, get back to your GP and start on a different blood pressure tablet immediately.
There are loads of different types, and there will be at least one that suits you.
Untreated hypertension and a cerebral aneurysm is a recipe for disaster - you are forcing high pressure fluid through a pipe with a weakened bubble in its wall - making it much more likely to burst.
Control your bp and the risk is much lower.
If they decide in a few years that your aneurysm does need surgery, it can often be done by coiling a silver wire inside it to block it off. This is done by interventional radiologists via a blood vessel, so does not require neurosurgery.
If you are sensible with taking your bp tablets and stopping smoking and vaping, you are giving yourself the best chance of a long and healthy life.

We did poa for both health and finances. I'm sorry you're in this situation, but it sounds line amongst the worry you're planning for a possibility none of us want but will be better off planned out somewhat.

I sympathise wth you OP, I had all sorts of weird and wonderful things happen to me and over the years, from joints dislocating, losing my memory for 72 hours, full blown tonic clonic tongue biting seizure and loads of other things, only once I was 47 I was diagnosed with ehlers danlos syndrome type 3, I wondered if you could have one of the other more serious EDS there are about 12 types maybe more in all. Good luck and look after yourself, big hugs.

Get on the GPS back about the things the GP can do for you - so BP medication at least. Have you done a home bp thing - a 24 hour check? Dh had to do that because he’d have high bp at the doctors because the doctor worried him!

I have a problem with my spine that gives me neurological problems. They won’t operate because it carries a 20-30% risk of paralysis from the chest down so I live with it until the symptoms are worse than the risk. The consultant told me not to fall over and jar my spine! I’m saying this because - I understand about living with the uncertainty of a potentially disastrous health problem, one that no one can really give you answers for. It might never happen. Or it might. It’s tough. You have to fix what you can and then stick your fingers in your ears and go “lalalala I can’t hear you” at the rest.

Thanks all for the replies. at the 'la-la-la' to the rest!
I will go back to the GP, and I do have a home bp thing - I do it every couple of days and it's gone from orange/flashing orange, up to red/flashing red. I did email the GP with the week's readings, but they've not got back to me, so I'll just take the initiative.

Thanks for the kind words though - it helps to know I"m not being overly precious about stuff.