Called in to discuss results - neurosurgery, aneurysm, worried.

[Does1teverend]

In 2023 I had coil embolization surgery for a large brain aneurysm. I had a follow up scan done 6 months later which showed it was occluded (in layman's terms - surgery successful). They'll continue to monitor me over time.

I promptly received my results on MyChart and then by letter.

I had my next follow up MRI in January of this year and have been waiting for my results ever since. All post op neuro patient MRI's have to be discussed at MDT's and I was told there was a backlog and significant delay so I'd be waiting a while for results.

I chased it up in early July and was told they'd be discussing my case on 17th July and the results would be sent out to me afterwards. I still haven't had them and nothing is visible on my chart since my last MRI in 2024.

This morning I received a text about an appointment being made for me to see a consultant at neurosurgery outpatients next week. This will be my first in-person appointment with anybody from neurosurgery since my operation in 2023, so is by no means the norm for me.

I'm worried that it means something bad has shown on my latest MRI, such as the coils compacting or a new aneurysm developing, so they want to deliver that news in-person as opposed to me trying to decode the results myself or get said news in a letter.

I checked MyChart and this appointment has been added there and says "follow up - routine" which I guess should feel reassuring but this is not routine for me. I've waited so long for results I'd tried to tell myself that no news was good news.. so this feels like a curve ball.

To add to matters I'm due to go on holiday the day before this appointment and I can't get through to anybody at the hospital to discuss or reschedule. I don't know how urgent it is.

Would you be concerned? Should I go to the hospital in-person and speak to admin there about needing to reschedule the appointment? Do I even go on holiday now? Does "routine" mean I'm OK or would it say "routine" even if the results were bad?

Any advice welcome. My head is frazzled today and I'm trying to hide the worry from my 3 little DC 😞

I’m someone who freaks out worrying, so that’s what I’d be doing. But, it’s completely irrational.

The fact it says ‘routine’ almost definitely means it’s just that. And the fact you’ve not had any face to face consultations is probably why they have elected to do one as that’s good protocol.

I’d email or call the consultant’s secretary re your holiday. Hopefully, she’ll be able to offer you reassurance too.

I agree with PP, try and speak to the surgeons secretary and ask her to find out how urgent it is. If you can't get through to anyone try calling PALS (just Google the hospital name plus pals). They are usually very helpful and putting you in touch with the right people.

I think you would been called in a lot sooner if anything to worry about, might be worth calling their secretary to change appointments and finding out if it’s urgent or just a follow up. I hope the results are ok for you.

I think routine means just that.

I’m sure they have an early warning system so that a rapidly growing aneurysm wouldn’t wait 8 months for assessment and feedback.

My mum had a gigantic inoperable slow growing aneurysm in her brain and I know someone who had lots of little faster growing ones which were all operable. I found the after-care was really excellent so I wouldn’t necessarily think an appointment means bad news. Some doctors much prefer face to face even when there’s little “new news” to impart, just to check you are feeling fine.

I would keep trying to reschedule the appointment - I did exactly as pp said recently for a different problem, for myself on the phone to PALS who tracked down the right extension and for me put through internally.

And don’t worry, it will just spoil your holiday.

It's literally a check up. "Routine"

I would suggest that as they haven’t seen you in person for two years that’s why they want to now

Just to add balance, I have been called in on a "routine" post MRI appointment for bad news (not aneurysm related though). So it is possible there is some issue and it's frustrating how hard it is to find out what is happening. I agree with posters above who say try to contact the neurosurgery secretary - info may be available on the hospital website for contact details.

Just something on the holiday, Assuming you are in the UK if you have travel insurance check you are covered while waiting for results, for things like water sport if here and at all if going abroad. I know it’s a pain but better to sort out now, wouldn’t need to be brain related- broken leg and the company take longer looking at it.

The neurosurgeons I dealt with were cautious and called me in if at all concerned (many years ago now)
try not to worry- I know easier said than done

Thank you all, these help!

I finally managed to speak to somebody in admin about the appointment. They said I could cancel it and have one at the end of September instead. I said I'd only feel comfortable doing that if they could confirm it wasn't urgent in any sense and she said she couldn't, understandably, and I'd have to wait and see the consultant for any information.

I said I'd keep the current appointment and make it work somehow.

Its a UK holiday so I'm going to drop my family there then drive back the following day for the appointment, then join them again in the evening.

Unfortunately I havent been able to reach my surgeons PA at any point I've tried to, nor has another medical professional who needed my surgeons go ahead to treat me for something else. We never hear back despite multiple calls and emails.

That probably amplifies the worry, rightly or wrongly, as my experience to date is that you just can't see or speak to somebody until it becomes an emergency.

That said, the care I received in the hospital itself was top tier and I have nothing but admiration and gratitude for the surgeons and their teams.

I'm really sorry your mum dealt with that @WifeOfAGemini - I'm thankful that mine was/is operable, even so the worry is awful, so I can't imagine how she must have felt 💐