Odd, finding this site today, after spending most of today reading the Survivor Stories on the Headway site from the BBC News article. It's odd, because the review I'm waiting for is tomorrow.
I'm approximately 12 weeks post-surgery after Subarachnoid Haemorrhage following a ruptured aneurysm on my Anterior Communicating Artery 28/2/15. I'm alive and well, but my discharge notes state there are two more aneurysms. My original consultant review was supposed to be two weeks ago, but he was called into emergency theatre, I'm not going to complain about that, because it was emergency surgery that saved me.
My gripe, my whinge, my moan, is about the general lack of communication while I was in the hospital, and afterwards. I've made up my own care plan, and written my own risk assessment. I was discharged from rehab after two visits, and my poor old GP had to ask me what I'd been in hospital with, before hurriedly signing me a fit-note to go back to work, just to get rid of me.
Does anyone else have any issues RE medics talking to them? I have a sneaking suspicion they might have spoken to my husband, but it's not his head, it's mine, and I'm more than a little frustrated.
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Gaia_rising
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The appointment today didn't happen, this being the second time my review appointment has been cancelled, so I'm still no wiser about the potential or care of the little aneurysm-babies I'm nursing in my skull.
I have emailed a complaint to the hospital, not so much about the appointment being cancelled, as about the lack of communication in general.
I'm aware that there are two aneurysms inside my brain, that could, at any point, enlarge, rupture, and kill me. I've made up my own risk assessment and care plan, the rehab lady said she couldn't do a thing for me that I wasn't already doing myself, but I've made it all up.
I'm down, today's a bad day anyway, and now I'm exceptionally frustrated, that I STILL don't know what the plan is for the remaining aneurysms.
Waiting, for a phone call from the hospital, or a letter with a new appointment date.
Lol ! Not a sign of madness - just frustration : )
It seems to be a common theme that medical communication can be sadly lacking in some cases.Of course you are worried and would like to know what plans are in place.I'm afraid I don't have any personal experience of your condition but others on here may be able to help.
Sorry to hear that your appointment has been cancelled again-must be so frustrating.
Many thanks, Angela. Some days I do feel like I'm shouting into empty space, having two aneurysms noted inside my brain, and no clue what the plan is for them. I'm hyper-vigilant for every little ache and pain, and 'wrongness', but, by the same token, I don't want to bother people. If I'd made a fuss over every headache I'd had, I would have my own seat in A&E by now, it's been 12 weeks since the ruptured aneurysm. I'm trying very hard to be 'normal', but the 'I-can't' is getting me down, especially given that I've made up my 'Care Plan'.
Here we go again, today is the third re-schedule of my review with the Consultant Neurosurgeon, fourth, if you count the time they phoned to say they'd sent a letter out for an appointment on the 18th of this month, but to ignore it, because he wasn't actually at the clinic that day.
Hopefully, I'll get to see someone today, hopefully, I'll get some answers, about what's going on inside my skull, and hopefully, the husband won't try to talk over the top of me, and I won't be asked to sit in the corner, with some wax crayons, while the 'grown-ups' talk about my brain.
It happened! My review appointment, after my traumatic emergency surgery, following a ruptured cerebral aneurysm at the end of February happened.
My Consultant Neurosurgeon is also an aesthetically pleasing human male, so there's a bonus. He did use the 'special' voice, and the short words at first, but I either looked at him like I might defenestrate him, or he realised there was no functional cognitive impairment, and started speaking to me like an adult.
MRI scan will be scheduled, then a further review with the brain-surgeon who doesn't look old enough to have had his hands in me, then a decision will be made on the remaining aneurysms. It's not ideal, but at least I know what's happening, and they know not to patronise me.
Well, the hospital cocked up again, just a little bit, and I got a little bit cross, and sent an email, and then my mobile rang, and it was the brain surgeon.
I had the MRI scan last week, I had thought that the Consultant had specified MRA, and was quite insistent with the booking clerk, and then the radiology-bloke, that MRA had been requested. No, they insisted, MRI would be sufficient. Then a letter plopped onto the doormat this morning, via the dog's mouth. "Please telephone to book your MRA (Head.) scan."
Little bit cross. Tiny, weeny, disproportionate rage. I stepped back, took a breath, and carefully composed an email, asking why I had undergone a no-doubt quite expensive MRI scan, despite stating that the Consultant had requested MRA, only to have another letter, just over a week after the MRI, asking me to book in for the MRA. I do whinge, but it's a two-hour trip on public transport to the hospital, because I refuse to have the husband take me, with his stinky aftershave, and his deaf-volume 1980s synthesiser CDs on in the car. Set aside the fact that I thought I'd be having an appointment with the Consultant four weeks after the scan, to advise on treatment or not for the remaining aneurysms...
Anyhow, the Consultant phoned my mobile. Not his secretary, or a booking clerk, the Consultant.
The repaired aneurysm is stable, and there has been no significant change to the next-largest aneurysm, which is suitable for surgery. The third aneurysm is too small to consider surgery on at this point, and is located 'close to the brain stem', so they don't really want to poke it if they don't have to. They'll send out an appointment for me to have my scan results interpreted by a radiologist, and I will be scheduled in for surgery on the second aneurysm, there'll be less recovery time, because it won't be emergency trauma-surgery, just a routine operation, with one, possibly two nights in hospital. I'm packing my own pyjamas.
Gaia can you find out if it is advisable to go home on public transport after an MRA.. i am not sure if it is or not. i was just thinking that the consultant may have initially thought MRA, then changed his mind to MRI for specific reasons but found that it didnt reveal as much detail as he wanted, so then he may have changed his mind again because MRA as you'd know shows more. if i could give a bit of advice, admittedly i dont know much about this, but try to take it steady with all things, try not to get so worked up that your blood pressure might be quite raised. take care.
Thanks, Eleanor. I am taking care, and I will go on public transport, I made sure I had enough money on me for a taxi home, just in case.
The MRA is not required, there was sufficient detail on the MRI to assess the aneurysms, the doubling-up of letters, the Consultant explained, was that one was a routine follow-up, and the other was the one he had requested after my last appointment with him.
Now I'm waiting for another appointment, with the radiologist, to interpret the scan results, that does strike me as odd, as I had thought I would be back in to see the Consultant, but who am I to argue? I don't particularly want the intrusion-invasion of surgery again, but it's better than the alternative, of waiting for the aneurysms to enlarge sufficiently to cause other issues, and the jumping-at-shadows anxiety that comes with 'knowing' they're in there.
My blood pressure is a joke, I have to get worked up into a state that would probably kill other people to raise it to 'normal', the last time I logged my blood pressure on my 'Pacer' thing, it was 81/47 with a pulse rate of 61bpm.
thank-you for explaining what is happening. i see now.
i just didnt know about the public transport. (sleepless night.. it'll be interesting today).
hope the radiologist appointment will be A1 but if you have any concerns id ring the consultants secretary (probably not very good advice to be fair, i mean thats probably obvious). best wishes for the appointment and upcoming surgery.
I have loads of concerns, most of which are entirely pointless, and based on irrational anxiety. I need to keep stepping back, and THINKING, instead of stressing, I genuinely am my own worst enemy most of the time.
most of the concerns are based on irrationality you say, but if you did want to speak to the consultant about anything contact him, (i did this, it was no bother to them). but maybe the radiologist could answer some questions. sorry i havent had surgery (i had an encephalopathy with such fantastic medicine in hospital that made for a very good outcome considering whati had. i try to keep an eye on nhs medicine, and by god they knew what they were doing- enough about that - just mentioned it to try to give you a bit of faith.) but i dont think you are your own worst enemy. the rational can be included to a greater extent, and be included to outweigh the irrational. youve said it better than i could what needs to be done, step back think, dont stress. this is obvious from me again but factor in a bit of time for yourself .
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The deed is done. Now the wait
Long wait until neuro appointment normal?
I've been waiting 8 months...
Im Petrified for upcoming surgery
