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Papillidema -long NHS wait

2 replies

Springiscoming12345 · 10/02/2023 13:32

Has anyone any experience of papillidema (swollen optic discs )
My husband had an ache in his eye about 6 months ago 24/7. Went for an eye test last year, saw swelling so referred him to opthalmology. Had to wait 17 weeks for the appointment which was in January. Consultant confirmed swelling of both discs, worse in one. Plan then was need a brain mri, further tests etc then treatment. Heard nothing so I called the mri department, there is a minimum of a 10 week wait for the brain mri.
I am obviously concerned about the length of time this is taking as 1. God forbid he could have a brain tumour and 2. Untreated papillidema can cause permanent vision loss.
The wait for the scan will take us to April. Then however long after for results etc.
I don't understand why there is no urgency when this is a serious condition. We have received a copy of the consultant notes to the gp today and it makes for scary reading. Yet nothing is being done. I rang the consultant secretary and explained about the lengthy wait & they just said there's nothing they can do! Can anyone reassure me? I'm considering making him go up to a&e but this is not the right way to do things and is why a&e is so busy

OP posts:
Bedusa · 10/02/2023 13:42

I had this quite severely with a huge amount of pain twenty years ago, GP wrote a letter whilst I waited (no idea what was in it!) and I was admitted via A and E. I had quite severe double vision and quite reduced peripheral vision. Horrendous headache. I had an MRI in the middle of the night and then treatment including a lumbar puncture and medication. Good news is that my vision recovered and no lasting side effects as far as I know.
In your shoes... Hmmm I'd probably see how he feels and go to A and E. Especially if he has a headache.

Bedusa · 10/02/2023 13:45

By the way, I'm not medically qualified. My other remark would be that the swelling doesn't sound too bad. Mine was very bad, the fluid from the lumbar puncture was under huge pressure apparently. I was in A LOT of pain, walking around holding my hands in front of my eyes as I could feel them being pushed out of my skull. Obviously I haven't seen your husband but my point is that he doesn't sound toooo bad.

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