I’ve been reading this post with interest. Amazing the different approaches that different areas/neuro teams have! I’m ten years post 3 embolisations and then craniotomy to remove a large AVM. They fully obliterated it but I did have a severe haemorrhage during the craniotomy which lasted 15 hours. After these procedures I only had one follow up angio and an mri a few years later. They told me that it wouldn’t come back (or chances were v small) and that being subject to the angio again was an unnecessary risk.
I’m always worried it’ll come back as I went through such a horrific time as we all have. But I still live with the consequences of the haemorrhage as it left me with left sided weakness. I needed to go to rehab for 6 months to learn to walk again. For this reason I’m obviously glad I don’t need to have multiple angios as they scare me terribly due to the stroke risk having already had one during surgery.
BUT, when I see others’ getting regular two year Follow ups I worry. I know it’s a double edged sword: risk vs risk, but it does seem excessive to me? There doesn’t seem to be a ‘happy’ medium.
Basically, I was told it wouldn’t come back but I was sceptical at the time and I know from research they can. However an angio every two years seems overkill to me. Sorry if this is rambling - I haven’t posted/replied on here for a long time!
Definitely worth asking why necessary because I agree about the risks.
When I was looking for a checkup in about March 2018 (a year post op) I was seeking an MRI as way less invasive and (I felt) a more general scan of the area. However, I ended up having both MRI and x-ray angiogram.
I agree with you that it seems excessive. I might go for this one… Then not go every two years…
Firstly sorry to hear what you went thru
Possibly yours is different too as they may be VERY confident of it not returning due to having craniotomy and fully removing it as they can better totally fix it with a craniotomy than thru angios… But obviously it’s riskier but needed at times
Hopefully they don’t worry about yours as they are so confident it’s fixed
Thanks so you’re saying you had mri plus full angio?
I totally understand all they can see from mri ct etc is if it’s bad. They can’t see flows or direction of flow or very small vessels. But yeh every 2 years lol is a lot
The issues I was having the (useless) neuro agreed didn’t seem directly related to my original DAVF. It was on the opposite side that I was having issues. I was worried that if they did an angiogram, they would just look where they had fixed (i.e. take a narrow focus on the veins and arteries affected originally) and say “nothing found” when they had simply looked in the wrong place.
So we agreed MRI instead of angio.
Then, when it came to it, they did an angiogram.
So then we had a further look with an MRI.
My repeat tests were a complete farce but the conclusion was “nothing found” and I’ve accepted that since and no planned recall like you. But that might be the UK NHS for you. I don’t know.
I mentioned this earlier, but it’s incorrect - Onyx is not metal based, the Tantulum is used for it’s visual aspect contrast
for visualization under fluoroscopy of both Onyx & Trufil - the base is still a polymer/copolymer just like Truphil - which is just uses a different polymer - man, this brain “procedure” stuff is difficult
And, I kinda wanted to mention this - no case is typical. We’re all different - every neuro is also different - we try to relate, but the smallest change can make a world of a difference
