My name is Merl I’m a member of the modsupport team on Ben’s Friends. I see you’re in Sydney, I’m in Adelaide, so I have an idea of some of the systems you’re trying to navigate.
You’ve been given some really good info here by the other members, some I’d like to expand on.
Totally agree. A catheter angiogram is like putting a camera inside of the vessel and following along the vessel. Where an MRI is scanning from the outside.
The magnets in MRI’s are rated in Tesla (T). T1 can view tissue, T2 can see fluid, T3 can see the flow of fluid. I’m a neuro patient and I too have been told I need a minimum of T3 with contrast.
Within the neurology field ‘Wait and watch’ is common. Let’s face it, nobody wants brain/spinal surgery and if it can be avoided, that would be even better. I too was given the ‘wait and watch’ line, but my symptoms were chronic bad already and getting worse, waiting wasn’t going to improve the situation. I tried to explain just how bad my symptoms were, but it was all minimised “ohh it can’t be that bad…” I was told. Then I was told I simply had a low tolerance to pain. Others cannot see your pain, they cannot feel your pain, so how would they know? I became a VERY strong self advocate.
These are both strong opiate medications. Presently, here in Australia, there is lots of fear being spread around regarding opiates and addiction. This has been fed by the U.S. opiate crisis, to the point that rather than being a reliever these meds are often identified as a cause of ongoing issues with pain. And it is true, addiction to pain meds is real BUT to be labelling people as addicts rather than trying to manage symptoms discredits genuine patients with genuine need. But don’t be surprised if this is identified as a contributing factor.
There are a few variables that all need to be taken into account here such as size, location, surrounding structures, risk of rupture, severity of symptoms etc. This all needs to be assessed by a neurologist or neurosurgeon often in collaboration with a radiologist. It isn’t something we can answer. Some people can have an AVM their whole lives but have no symptoms, with it only being found incidentally via another scan like a dental scan, but then for some there can be no end to symptoms.
NEVER apologise for asking questions. NEVER. When I first arrived here I had nothing but questions and they were all running through my mind at a million miles a second. If I apologised for every question, I’d still be apologising today. Our information hasn’t come from a textbook. We know just how scary it all can be. We know because we’ve lived it too, and who better to ask than people with a lived experience. The members here are more than willing to share, so ask away.
Merl from the Modsupport Team