10% of my AVM remains

Hello Everyone,

Friday was my Angiogram and man was I nervous. Super weird being conscious throughout the whole thing. I remember at one point i felt like I was drooling and my face was warm in certain places when the ink was injected. Overall it wasnt as bad as I thought, felt like I was in Grey’s Anatomy. I was hoping for great or good news afterwards but the dr said 10% of AVM is still there but very superficial in my right side parietal lobe. After dealing with a rupture, emergency craniotomy, embolization, over 60 days of rehab hospital stay and 4-6 months of great recovery I was hoping for a break. Dr will be meeting with Neuro team next week to discuss my options. Another crainotomy to completly remove, radiation or another embolization. Anyone else go through this? What was the outcome? I am still sore and a bit beat up but I should be back to normal in a few days.

Thanks Everyone!

Part of mine 5% remains after 1 year after embolization and craniotomy. No new feeders though and it hasn’t grown. I was told if in 6 months-1year it doesn’t grow then you SHOULD be set. I only get monitored for my 2 ghost aneurysms, which also haven’t grown. I hate knowing they are there as well as that 10% in my parietal right lobe but :woman_shrugging:t2: I’ve learned to accept it and just focus on recovery in therapy. If my drs are not concerned and are shocked at how much I’ve recovered so fast so should I. I still have my moments though. So my recommendation, although Im sure it’s not what you want to hear, live life to the fullest and just be grateful like myself that we are still kicking :slight_smile:

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Can imagine the uncertainty en disappointment after such a intense treatment and rehabilitation traject. Wish you good luck on the outcome of the neuro team meeting. Btw i will have my angiogram on Tuesday, not looking forward either but hoping for at least some more clarity, though I am coming to realize that clear answers are rare when having avm.

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I can relate to this fear at the moment, welcome to read my post here which gives more detail:

My AVM has also been reduced to 10% remaining. I really want it home once and for all but at the same time I don’t want to have any more damage/deficits. Also the idea of having my return to independant life delayed further if I have need invasive treatment that has a long recovery time is also crappy.

Hopefully we will get positive news for a low risk low invasive and low recovery time treatment to get rid of the remaining AVM. Who knows maybe you AVM could be super low risk and recommended to leave it be and be regulary monitored.

For now all we can do is follow the motto “don’t worry about what-if, worry when there is something that has happened to worry about”

We will get through this :muscle:

Best of wishes,

Corrine

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This sounds very similar to my daughter’s situation. Rupture, emergency craniotomy, embolization 6 weeks later, clear MRI 5 months post rupture but then her angiogram one year post rupture (when we were expecting the all clear) they told us there was residual. They think it’s because ongoing swelling made it difficult to see until more time had passed. Because she’s young (11) we were told they don’t leave residual untreated in children. After another MRI they recommended a craniotomy. She had that this past May and recovered very well. Took about 8 weeks to regain her energy but she didn’t lose any functions. Hope this helps.

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