What to expect?

Hey everyone, my name is Chelsea, I am 19 years old, andI found out Wednesday that I have AVM on the left side of my brain. I just saw a neurologist this morning and even though he explained everything very well, I would like to have information from people who have already experienced it. I’m scared and I don’t really know what to expect. I’m going to be scheduling an angiogram soon… what is that like? And is there anything I should avoid doing to not damage my brain anymore (I’ve never had any symptoms or anything like that, we just happened to have found it during a ct scan)

Thanks for the help

You will be in my prayers, thank goodness you have family to help you. The search bar at the top, type in questions for Dr. Alot of people have shared alot of great questions. Every AVM is different, but I think all brain AVMers are supposed to monitor heart rate and blood pressure. Keep yourself as calm as possible. Don’t put your head below your heart, I get dizzy bending, but your Dr will be specific for you. Do not lift more than twenty pounds. Good luck! I will be praying for you :slight_smile:

Hi Chelsea, I know how unnerving finding all this out can be, but really it all sounds a lot worse than it actually is. At least that was the case for me.

The angiogram isn’t pleasant but it is not the end of the world. Some specialists will offer to sedate you, that’s a personal choice but I preferred not to have the drowsy feeling. The worst part from a pain perspective is the local anaesthetic at the site in your groin ready for catheter insertion. The machine looks a little intimidating that actually does the X-rays as it is large and has a multijointed arm so it can move and get pictures from all angles. One hell of a Kodak moment eh!!

They will inject some contrast throught the catheter before taking the snaps and this can be a little unnerving. I can only describe it as an extremely specific version of the feeling you probably had when they put contrast in for your ct scan.

My avm was quite large and causing me acute headaches, so I kinda went from normal life to a&e in the space of a couple of weeks! As a result I didn’t get much counselling on what not to do. My avm was cured with a single embolisation procedure and I have been given the simple instruction to live my life to the full. I have just had an angiogram checkup and all looks good (there is a small aneurysm that we may decide to treat later or may leave, in a different part of my brain).

After the angiogram, your groin will be sore for a few days, but the recovery is really quite quick and you have youth on your side so don’t panic. If they decide to treat it with an embolisation procedure like mine, then that is basically just like an angiogram, except they put some special glue in to block blood supply into the avm. You will be put to sleep for that one. I don’t have any ongoing side effects from my procedures so don’t get too scred by it. Nerves is normal but don’t panic it will be ok. If you have any questions, just let me know and I’ll try to help.

Best if luck