So my 2cm right Temporo parietal AVM got picked up on the 18th June after an MRI scan which showed up the right occipital bleed which occurred on 20th May. Admitted to hospital and had CT with contrast and angio. Bleed was due to aneurysm within the AVM and that was embolised & coiled fairly quick and felt normal practically straight away. I went home for a week and returned for further onyx embolisation on Monday. The neuroradiologist tried really hard to get it all but was only able to get 90%. He also had to leave the micro catheter in my groin as it had traction when he tried to remove it. After the operation I noticed a tingle in my left finger and my vision occasionally goes a bit cloudy but it passes. I will have to have a craniotomy now to remove it all but as I’m on aspirin due to the micro catheter being still in the femoral artery and to prevent clotting, a craniotomy is not possible whilst I am on aspirin and required to be on them for 2 months. so hopefully find out tomorrow what the plan is.
I’m in the UK, at the John Radcliffe in Oxford.
Best wishes for you, Nichola. Hope they can get a good plan set for you. Keep us updated!
Good luck, I hope it is good news.
Thanks. I’ve been told I’m going home today. Will be back for my craniotomy in November.
Im glad you’re going home
Wow that is crazy about the catheter how does something like that hppen or why? Rest up til November at which time I pray they get it all out for goog
Yeah it’s mad. Basically the end of the catheter gets a build up of glue so it then becomes stuck and causes traction which is why it has to be left in. Pulling it would cause too much damage. When they do the craniotomy they will remove the micro catheter.
Good luck Nichola! I had an emergency craniotomy when my AVM burst without knowledge of having anything wrong with me. Happy to say it's been 21 years since then, had a pretty funky haircut for a while, but all is well for the most part. Luckily I didn't have to live with the knowledge of having this inside my brain. Mine was a 4 cm bleed, causing an aneurism in my occipital lobe, lost all vision to my left at the time of the aneurism, but slowly gained most of it back. Other than taking seizure meds, I am seizure free, enjoy a life of climbing, mountain biking and swimming, 2 of the things I picked up AFTER I endured all this mess! I am hoping you have a similar outcome as I have! I've had many years of this and it all gets better, just have a super positive mindset, and strive for how you want to live life!!!!
I had a AVM surgery on the 18th of June at Charing Cross hospital in London. Previously I also had a bleed back in January.
I had my AVM removed completely.
I am very sorry to hear about your bad experience, I had two Angiograms done without any problem. I found the doctors in Charing Cross hospital very Profesional.
I recommend Charing cross if you considering having your treatment in London and I can’t recommend enough to Dr Ramesh Nair.
What a crazy experience!!! Best of luck to you