How long to get head CT results? I am worried

[anonymous98]

I had my head CT today. I was quite distressed beforehand and I had to deep breathe to stop shaking so much from anxiety. They took a couple of pictures of my brain without contrast and then one with contrast.

The technicians/radiographers were very kind and offered me water and blankets beforehand because I was so shaky. I made the mistake of reading my handover note from the neurologist which described me as "very anxious" (true) but also said CT was needed due to "suspected event." I have had papilloedema for two years related to idiopathic intracranial hypertension (IIH) but recently it has got worse, hence why I was sent for CT. My neurologist says that he is fairly certain that my veins/sinuses are playing up (not necessarily a big deal). I asked if there was any suspicion of a tumour and he said no - but then I am horribly anxious and he probably didn't want to make me freak out.

After the CT, the technician/radiographer took my port out which I thought was a good sign. She also said not to worry- that these scans are essentially due to my doctor doing due diligence. She seemed quite happy to chat with us and the atmosphere was calm, although I'm aware they are professionals and can't show any signs of concern. She said it would be a 1-3 weeks before I heard back from the neuro. I would like to think (perhaps wrongly) that if anything alarming showed up on the scan, there would be immediate follow-up - but this is the NHS, so who knows.

Obviously I have to wait to hear back from the doctor, which is hard. I'm not sure how to feel. I thought I seemed safe after the scan but I'm scared that I'll get too relaxed and then get the "surprise! You've got a tumour!" call. My anxiety and general distress is unbelievably bad (resistant to basically all treatment) and I was in tears all day and even after the scan. I felt like I was going to be sick in the waiting room. I was also the youngest person there (25), which added to my sense of dread. I've had some symptoms I guess are worrying - my memory is worse and I have brain fog (although I am on amitriptyline, a strong SNRI, propranolol and Diamox, so could be med-related). I get frequent but mild headaches. Some nausea. The last few months have been hell waiting for the scan. I know I sound ridiculous but I have been so scared.

If there was something bad you’d know about it I was told the same day.

if you’re worried go to specsavers get an eye test with oct scan to see if there is any pappilodema.

they don’t really do much for iih except for medication like diamox or topirimate,they are interested in saving vision so if that is fine then they’re happy.

Sorry you've had to deal with that. I hope you are okay.

Neurologist is pretty good at sending me for OCT scans on the NHS but my initial symptoms were found during a routine eye test

I’m ok got a couple of shunts,which are now broken,but seeing the neurosurgeon in a couple of weeks

Hope it goes well for you

It's been 2 weeks today and I've heard nothing. Tbh I'm a bit scared to ring the consultant's secretary.

Not hearing is actually a good thing. If they had spotted anything worrying, you would have heard already.

Thanks- I would've thought so. Even with NHS delays, the brain is pretty crucial, so I would've thought they would have referred me for further tests by now if something showed up.

Hi,
I have multiple cancers - lung, brain, bone
Every test that has identified these, I've had the results at the speed of light
Where it's been clear, breast, cervix, it's taken about 3 weeks

Of course you're worried but try to manage that.

Worst case scenario is a tumour and they don't hang about

I'd also suggest OCT scan at specsavers and be brave - ring the secretary
Good luck 🤞 😘

😘😘hope you're doing ok @Tilllly xx

Sorry you're dealing with this - I hope you are doing okay and wish you all the best 💕

Thanks, I've had an OCT done as well as the CT and I think I will phone next week

Thanks ladies
The pain is largely controlled and I'm surrounded by friends
And a puppy ☺️

Hi @anonymous98 I’m sorry that you are going through this and understand how worrying the wait is, but I really need to put some misconceptions here to bed. You would not be told at the time if there was something bad on the scan - what do the pp think, that the Radiographer is going to pop out, say that they are sorry but you’ve got a brain tumour, and then send you home?? 🙄 You may be informed sooner if the Radiographer had spotted something untoward on the scan and put it through for an urgent report - this would depend on how obvious the abnormality was, bearing in mind that most Radiographers are not trained to interpret the scans. But I’m afraid there is a possibility that something may show up and you won’t be told any sooner than the 1 to 3 weeks timescale you’ve been given. There is a national shortage of Radiologists and reporting Radiographers and they have given you a realistic timeline of when the report will be ready. I see you are at 2 weeks now - you can contact PALS or the Consultant’s secretary but they are unlikely to be able to prioritise you without good reason. But do hold onto the thought that your Consultant told you he wasn’t worried, you weren’t on a fast track pathway ( which would get both a quicker wait to scan time, and quicker results) and you are under the care of a specialist already who will be well placed to treat you should anything show up. I really do understand your anxiety and wish you all the best, but am just trying to put to bed the false hope that you are being offered here.

I had a CT head nearly two weeks ago and saw the results after a week on my nhs app, no communication from GP as all was normal. I’d definitely take it as no news is good news.

I also work at the hospital and the person taking the scan has a look through it to pick out any obvious abnormalities. This is then flagged as a “red dot” so the formal report is completed much quicker.

I’m so sorry to the people on this thread who had abnormalities on their scans 💐

@Tilllly gorgeous puppy

What would constitute an "obvious abnormality", if it's okay to ask?

I guess fluid or a mass that changes the visual appearance of the brain in the scan.

The thing I'm really worried about is something aggressive like a glioblastoma. Am I wrong in thinking that would be fairly obvious on the scan?

I don't know @anonymous98

Thing is, in the gentlest way possible, you're asking us to reassure you, that it won't be X, Y or Z because of A,B and C

And I understand why but no one knows yet, until you see your consultant, no one has answers. We can share our stories and speculate on likelihood but the bottom line is, you just have to wait and find a way to get thru this most awful of times

And we'll hold your hand whilst you wait

That's true - and very kind of you, thank you :)

GP rang me today about my prescription and I did ask him if neurology have written to him at all since early March. They haven't.

I guess I'll give it the full 3 weeks and then ring

Left message for consultant's secretary as it's been 3 weeks. Not optimistic as it's nearly the Easter weekend but hey, I tried :)

Aware this is an old thread, but just wanted to update in case anyone else is going through similar.

So it took 5 weeks to get my results. As I am currently quite mentally unwell, I was an emotional wreck by the time the neurologist phoned me. In the end, we had to push to get the results because the department was so busy.

Scan was fine, so I feel a bit foolish.

Glad you've had the all clear ❤️

@anonymous98 its not foolish at all to be anxious, so pleased the results are clear for you.

Thank you both :) it's a huge relief