AVM - tumour

Jaylah,

Hi! Do you understand any of that? It’s very medical language, isn’t it? My reading of it is that they don’t know exactly what you’ve got just there but you’ve got an unusual looking artery and signs of a previous bleed. In common with everybody here, your next step is to have an angiogram, using a catheter. This means that they insert a tiny tiny tube in at your wrist or groin, navigate that up to the suspicious artery, inject some contrast material and take a bunch of pictures on x-ray. This will show where the blood is flowing through that artery and whether it is going somewhere unusual.

An AVM is a join from your artery directly back into a vein, without going through a set of capillary beds. The problem with an AVM is that veins are low pressure vessels and not designed to take arterial pressure blood, so can rupture, giving you a stroke. Your doctors believe you’ve already had a bleed, which is the “bloom” that they can see on MRI. However, there are other reasons for a bleed and it may be you don’t have an AVM, so they want to get you checked out.

I’m in the UK, so we have a free-at-point-of-use health care system, like you. Similarly, you have to wait longer for treatment. What I’d say is that we often think of these things as urgent as well as important but the neurosurgeons are probably looking at you as not urgent yet, so you end up waiting. I do think that since you have already had a bleed, you ought to be more urgent than I was and I would always say that if you get any sudden or severe symptoms you should go straight to Emergency. Meanwhile, if things change for you, keep on at the doctors to make sure that they are prioritising you appropriately.

My story of waiting is here, in two parts.

I hope this is helpful. If you are worried about anything, talk. Many of us have been through the same worries and found ways to cope.

Sending you very best wishes,

Richard

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