Has anyone got any experience of this with their DC? It was originally spotted by the optician in April but due to various errors the referral didn't get sent to the hospital. She had reassured me that it was highly unlikely that it would be true papilledema but my DD would need to be seen to rule it out. After a revisit to the opticians in October, the referral error was discovered and they moved quickly to ensure my DD was seen at hospital. After seeing the ophthalmologist, he arranged for an MRI which has shown swelling in the eye area, and they think this is due to intracranial pressure. Unfortunately the lumbar puncture to release the pressure was unsuccessful and we're back in next week to have it done under a GA.
I was just wondering if anyone had any experience of this? They don't know the cause at the moment, but there were no tumours or lesions on her brain, which is a good thing. I feel terrible that she's had this since April and nothing was done, and that I didn't recognise her symptoms (the optician advised that it would be a very dramatic event and that I wouldn't miss it, opposed to the headaches, nausea and tiredness that she's had). She did have a fainting episode last week but didn't lose consciousness, just screamed that she thought she was going blind and couldn't hear. The hospital are aware of this.
Any advice or experiences welcome. She's currently uncomfortable due to the lumbar puncture attempts, but she's been an absolute trooper through it all.