Eight months after AVM treatment, two weeks of headaches, and they have put me on steroids for "swelling". Has it gone wrong?

Some of you know me from the fatigue thread in the spring. The afternoons did eventually get better, for anyone who was wondering, so that is the good news out of the way.

Here is the other news. About a fortnight ago I started getting a headache that was not like any headache I have had before. Dull, right across, worst when I woke up and better by lunchtime, and by last week it was there most of the day. I did the thing everyone here told me to do and rang the nurse instead of googling, they brought the scan forward, and the consultant rang yesterday to say there is "radiation induced change with surrounding oedema" around the AVM and he is starting me on a course of steroids. He said it calmly and I nodded calmly and then I put the phone down and fell apart a bit.

Because eight months ago I sat in that frame for a treatment whose entire selling point was that it does not touch the rest of the brain. And now there is SWELLING in the rest of my brain. Nobody has said the word failed, but nobody has said the word working either, and I have been told repeatedly not to expect anything on scans for two to three years, so what exactly is this scan showing them? Is the swelling the treatment doing something or the treatment doing damage?

Susan, I am the meningioma person whose scans "kept looking swollen through about month nine", which I have said on here more than once, and what I did not say is that at month seven I had a fortnight of exactly your headache and a three week course of tablets for it. Worked within about four days. Report language at the time was almost identical to yours.

Two years on, smaller than it started. So from the far side: it was not the thing going wrong, it was the thing going, and I only understood that afterwards.

Acoustic neuroma rather than AVM, and mine was the silent version, swelling on the twelve month scan that I never felt and they never treated, just watched. So it is worth knowing there is a whole group of us who have the swelling on the picture and no symptoms and no tablets. Yours got symptoms, so yours got tablets. That is the only difference I can see between us.

Susan, the direct answer first, because I remember how much I needed one: swelling around a treated target is one of the expected delayed effects of radiosurgery, it is the tissue at the edge of the target reacting to a dose that landed where it was aimed, and the standard response to it when it causes symptoms is exactly what your team have done. It is not the treatment failing and it is not evidence that the beams went somewhere they were not meant to. The margin of any target gets a lower dose than the centre, and that margin is where the reaction shows up.

The timing is also textbook rather than alarming. The early after-effects run for the first couple of months; oedema and radiation necrosis are the delayed ones, most often arriving somewhere between a few months and about a year after treatment, which is why the scanning goes on so long. Radiation necrosis, the more serious cousin of what you have, affects roughly 5 to 25% of people depending on the size of the target and the dose, and AVMs get some of the higher margin doses in radiosurgery, around 18 to 25 Gy, which is part of why AVM patients see more of these changes on their scans than acoustic neuroma patients like Pete and me. What that scan is showing your team is not obliteration one way or the other; that is the two to three year question and it is answered by angiography at the end of the latency, not by an MRI at eight months. What it is showing is a reaction they were watching for, at the time they were watching for it, in a place they expected.

I did not have symptomatic swelling myself, but my consultant put me on notice for it at the one month visit in almost the words you have used, and I wrote up what the whole thing looks like from the patient side, including the steroids and the reasons a headache that builds over days gets a phone call rather than a wait, in swelling after Gamma Knife. Paul's timeline above, headache, tablets, better within days, scan settling over the following months, is the ordinary shape of it. The steroid side effects, the sleeplessness and the appetite and the puffy face, are worth being warned about; they fade as the course tapers, and the tapering is your team's to set, not the internet's.

The one thing I would not do is fold this into the fatigue drawer the way you very reasonably tried to in the spring. You did the right thing ringing, and if the headache changes character on the tablets, gets sudden, or brings anything new with it, that is a same day call and not a next appointment one. Your team can see the pictures and can tell you what the change around the nidus actually looks like. This forum can only tell you that the sentence you have been given is one a great many of us have been given, and that most of us are posting from the other side of it.

No swelling story here, just wanted to say the "nobody said failed but nobody said working" limbo is the entire experience of this treatment and it does not mean anything sinister. Nobody said working to me for two years either.

Ruth Alderman said:

What it is showing is a reaction they were watching for, at the time they were watching for it, in a place they expected.

Two weeks on the tablets and the headache went in three days flat, which was almost annoying after a fortnight of it. I am now on the reducing part and sleeping badly and eating everything in the house, as promised.

Saw the consultant in person and asked the question straight out, is this the treatment working or the treatment damaging, and he said, more or less, that at eight months those are the same picture, and the angiogram in 2028 is the only thing that separates them. Which is not the answer I wanted but it is at least an answer, and the sentence above is the one I have written on the fridge.