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.
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General health
How long to get head CT results? I am worried
anonymous98 · 08/03/2024 22:27
KaySam · 09/03/2024 13:43
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.
KaySam · 09/03/2024 16:41
I’m ok got a couple of shunts,which are now broken,but seeing the neurosurgeon in a couple of weeks
Forhecksake · 22/03/2024 04:24
Not hearing is actually a good thing. If they had spotted anything worrying, you would have heard already.
Tilllly · 22/03/2024 05:37
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 🤞 😘
Tilllly · 22/03/2024 05:37
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 🤞 😘
Tilllly · 25/03/2024 01:52
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
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