Frame came off on Tuesday and now my eyelids are puffy and going purple. Is that the pins or the BRAIN?

I posted yesterday sounding very pleased with myself about my packing and how uneventful the day was, and this morning I have walked past the bathroom mirror and had to sit down on the edge of the bath.

Treatment was Tuesday. Wednesday I had the tight headband headache everyone describes and the four little dots and that was it. This morning (Friday) my forehead is puffy right across, the left eyelid is swollen enough that the eye is half shut, and there is a purple stain coming down from the hairline into the corner of the eye like I walked into a door. It does not hurt exactly, it feels tight and heavy, but it looks like something has gone badly wrong INSIDE and is leaking out.

The discharge sheet says "mild swelling at the pin sites" which I took to mean a bump the size of a pea, not this. Is this the pins or is this the treatment? Nobody mentioned my face. Do I ring the unit on a Friday morning or am I being one of those patients?

Diane, breathe. I had exactly this and it is the pins. Mine came down the right side, day three, eye almost shut by the Saturday, and I had already convinced myself the tumour had burst or something equally impossible.

Rang the unit anyway because it was frightening me and the nurse was completely unbothered, said the fluid from the front pin sites drains down under the skin and lands around the eyes because that is where the skin is loosest. Mine went yellow then green over about a week and then was simply gone. Ring them regardless, that is what the number is for, but I would put money on them telling you the same thing.

Same in June, though a milder version, both eyes a bit puffy and one greenish bruise rather than the full prizefighter. Sleeping propped up on two pillows seemed to help the mornings, and I stopped looking in the mirror before nine, which helped more.

The thing nobody says is that it is a skin thing, not a head thing. Once I understood that I stopped panicking about it.

Diane, what you are describing is periorbital swelling from the frame pins, and it is a skin-level effect of the fixation, not of the radiation and not of anything happening inside the head. The two anterior pins sit near the frontal hairline. A small amount of fluid and blood from those sites tracks downward under the loose skin of the forehead with gravity over the first day or two and collects in the eyelids, which is why it appears on day two or three rather than on the day itself, why it is often one-sided, and why it looks so much worse than it feels. It usually peaks around the second or third day, changes colour through purple, yellow and green as any bruise does, and is largely gone within about a week; ten days at the outside for a heavier bruise.

What it is not is a sign of the treatment leaking, swelling the brain, or going wrong. Brain oedema after radiosurgery is a real and separate effect, but it is a delayed one, arriving in the window of months rather than days, and it shows itself as headache, drowsiness or a return of the original symptoms rather than as anything visible on the face. The site's guide to recovery after Gamma Knife covers both in their proper places.

The pin sites themselves are the thing to keep an eye on, and the signs that warrant a call are the ordinary signs of a small wound not settling: spreading redness or warmth around a pin site, any discharge, or a fever. A purple eyelid on its own is not one of them. That said, Mark is right that ringing is never being "one of those patients"; your unit would rather hear about a bruise than not hear about an infection, and I cannot see your forehead from here. If your team have told you how to look after the sites, theirs is the guidance to follow.

Mine went so spectacularly black that a man at the bird hide asked if I had been in a fight, which I have dined out on since. Gone in eight days. Cold flannel in the mornings was pleasant if nothing else.

Mr Edward Halloran said:

it usually peaks around the second or third day, changes colour through purple, yellow and green as any bruise does, and is largely gone within about a week

Reporting back a week on because I would have wanted someone to. Rang the unit on the Friday, the nurse asked three questions about redness and heat and temperature, said "that is the pins, love" and I could hear her not writing anything down. Saturday was the worst day, eye properly shut, then it went exactly the colours listed above and today you would not know. Two of the four dots have vanished entirely and the other two are tiny scabs.

Lesson for anyone reading this the night before: the sheet should say "you may look like you lost a fight for about a week and this is fine". Would have saved me a very bad Friday morning.