10 year "Anniversary"

10 years ago today my life took a turn when I attended the ER with a crushing headache, and learned that I had an AVM, what an AVM was and that mine had bleed. I really don’t remember that day, or the next several as I was in the Neuro unit. My memory goes to sporadic and over the course of a few weeks and then almost back to normal. I had a few other impacts, no control of emotions, super light sensitivity, not being able to lay flat due to pressure, aphasia to name some! 6 months later I had Gamma Knife, and then 27 months after that my AVM was confirmed obliterated.

All seemed well until January 2023 when I had a seizure, only one, but am now on medication, Brivaracetam for the past 6 months after a switch from Keppra.

I haven’t been here as much as I would like lately as I am living away from home after a work promotion, but retirement is now on the horizon. I plan to be finished up within the next year and will be staring down 60, so it will be time for new adventures.

All this to say, it has been a journey, very challenging at times, frustrating, progress is not a linear path, but forward is forward. This group, which I consider family, has helped me so much, particularly in the early days. Life changed on a dime, and it was difficult to accept, to navigate and to keep pressing forward. The fact I am 10 years past “that day” is really difficult to fathom, but I am now looking forward to the next 10! I just hope the next 10 don’t go by as fast as the last 10!

Thank you to our entire community, you likely don’t realize how much your involvement and support mean. Take Care, John.

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Thanks for sharing, I find this group a huge comfort too. I had gamma knife a year and a half ago but still have seizures. They said it is the brain changing. Do you know why you had one recently even though your AVM has been obliterated? Claire

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Not sure on the reason but certainly can’t rule out the fact I do have some scarring from GK. They refer to it as an artifact. John

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Happy Anniversary! It’s wild how time flies. In November it will be my 20 year anniversary of the first bleed and the discovery of my AVM… and I was only 10 years old at the time. Keep thriving!

Love, Julia

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