Life After AVM

From Moderator Suzy E:

When the doctor first told me they found this thing called an AVM in my cerebellum and that if it ruptured I might stop breathing, my first response was “what’s an AVM?” After the reality of the situation sunk in I thought my life was over. It was, but not in the awful way that I imagined it. Let me explain.

At the end of 2006, I chose to have a craniotomy to remove the AVM. Yes it was scary, but so was dropping dead in front of my teenage daughter. It was a long trip (recovery) and I remember very little of it which is probably a good thing. Before the surgery, my biggest concern was continuing what I was currently immersed in, my job. So my first question was “when can I go back to work?” Even then, the doctors, surgeons, etc. really didn’t know the answer to that question but they saw my concern and told me “about three months”. That worked for me and my calculations (as crazy as that sounds now).

But three months rolled around and I wasn’t fully recovered and my employer decided to lay me off to “better accommodate getting long-term disability”. Long story short (we all have our own story with our own circumstances but this is mine) the long-term disability provider stop paying me long-term disability a year or two later. Although I thought I was cutting back, I had still had financial obligations and a daughter who was going into her senior year in high school. I needed income. So off to work I went in anything I could find. That was hard on me physically and mentally for a variety of reasons and I found myself completely spent doing things (physically and mentally) that used to be nothing for me to achieve.

In the meantime, I was pursuing my MBA online (yes, post AVM) in the hopes that I would someday return to the position I once had or at least something similar. That never panned out. I still earned the MBA in 2010 but so much within me, as well as within the industry, had changed. This AVM journey sparked adapting to that change in a way that may never have happened otherwise. I can see this now (sparking adaptation to change) looking at the big picture, but had little to no perspective of what was happening when it happened. I learned (and am still learning) patience with myself and others.

Today, I am completing my second master’s degree in counseling (again, post AVM) and enjoying all the “aha” moments or “so that’s what that life experience means”. Again, I may never have been able to adapt to the change needed without having had this AVM experience. Oh and that daughter who was going into her senior year in high school? She’s now a graduate student at UT Austin. Life has a funny way of going on despite it all.

Now I cannot say that anyone else's journey is similar, in fact it may be extremely different (some AVMs remain active and some are inoperable), but I do believe some things are global for people with AVMs, and patience may be one of them. But I really don’t know. All I know is that healing takes a long time and patience along with a healthy sense of humor has helped me along the way. Find and do what works for you to get through the many challenges associated with this journey.

On my Facebook page I have a shot of a mouse doing presses on a rat trap and the caption reads “that which does not kill you, makes you stronger”. I believe that. Best of luck to everyone on this journey (in all your circumstances) and be kind to yourself (and others) along the way. :)


Good for you to hang in there! Its the journey of life.