Hi all
Really hoping for some reassurance during a stressful time…
I attend an eye hospital for images and routine check up every 12-18 months due to a freckle (naevus) at the back of my eye. At my most recent appt (end June) I only had images done and didn’t see a doctor due to COVID. They called afterwards to say I had some swelling in my right optic disc and asked if I’d had any headaches or visual disturbances (no, I hadn’t and still haven’t).
I went back the following week to see a consultant to discuss this and I had a little eye scan done. Consultant said she thought the swelling was not just down to the optic disc drusen I have been previously diagnosed with in both eyes. The swelling was outside normal boundaries but not really, really high. Was told I’d be referred to another consultant - specialist in eye/brain issues - in a couple of weeks and that he would want an MRI so they were going to get on and book that in the meantime. Mention of Acetazolomide (a diuretic) as treatment and lumbar punctures and shunts potentially down the line (as all possibilities given) which lead me to see that they were looking at idiopathic intercranial hypertension.
Roll on two weeks later. Unfortunately the consultant I was due to see was on holiday so they should have changed my appointment but as I was there they checked/rechecked the following:
Vision via standard eye chart - fine
Pressure - fine
Visual fields - fine
Another scan - showed no change in swelling from two weeks previous
Saw a doctor who said she wanted to try to get as much info off me as poss. Was unsure about IIH diagnosis as although I have the risk factors (female, very overweight) I wasn’t showing any other symptoms. Also said she wasn’t even sure if it was papilledema. Wanted to press on with more diagnostics (lumbar puncture) in the meantime before having rearranged appt with the consultant I was actually supposed to see! MRI appt had come through by this point, for later on the following week.
A few days later (this was the start of last week) I had a CT V scan of the head with contrast as a prerequisite for the lumbar puncture. The CT scan showed ‘normal configuration of the ventricles and CSF spaces, no mass lesion, haemorrhage or infarct and no evidence of CVST. No retro-orbital abnormality’.
As the CT was fine I underwent a lumbar puncture that afternoon and had normal opening pressure (21).
The doctor who did the LP didn’t seem too concerned after he’d finished it saying he thought the swelling was just the way I was. But said to keep the MRI appt anyway.
I had the brain and orbit MRI done three days later - last Thursday.
My next appt was due to be the 19th with said consultant but hospital rang today to move it forward to next Tuesday. I asked why the appt was moved forward as I was panicking about the MRI results being more urgent and any other diagnosis it could be (as I gather it’s not IIH with a normal opening pressure). The person that was calling said he didn’t know why, it could just be rearranging clinics etc.
I know that throughout this there are positive things - no vision issues, normal pressure, clear CT scan, etc - but I am just so worried. It doesn’t help that I have bad anxiety, particularly health anxiety, and that my appointment next week is on the first anniversary of the death of one of my parents - I lost both last year and am struggling with grief. Throughout my appts I think my anxiety and emotional state have been noted, so I do wonder if they don’t want to make me wait until the 19th if I’m worrying so much, and are bringing it forward for a good reason? But then I’m also worried about the MRI picking up something that the CT didn’t. Would anything really bad definitely have shown up on the CT?