Spinal Epidural Arteriovenous Fistula

2017 has been a pretty crap year by my accounting. Politics and the world at large are crap, and I went from running 5 miles at a time down to having trouble walking a quarter mile. In hindsight it started getting noticeably worse in 2016, but slow long term changes are really hard to recognize. I kept thinking I was just being kinda pathetic and needed to be more consistent with exercise.

Instead, it turns out that for probably the last decade (at least) my spinal cord has been slowly dying and I have been slowly retraining my body to compensate for it. The past year or two the damage got bad enough that I couldn't (easily) compensate for it anymore. At one point a doctor who was meeting me for the first time after looking at my MRIs said that he wouldn't have been surprised if I was in a wheelchair.

On the plus side it hasn't gotten that bad though there was a week or two in September where I almost wanted a cane. But after two relatively minor surgeries and a whole lot of testing I'm reasonably hopeful that we've both found and fixed the root cause.

Year Max Distance (miles)
2011 2.75 running
2012 4 running
2013 5 running
2014 5.5 running
2015 8 running
2016 5.5 running
2017Q1  4.8 running
2017Q2 0 running, 1.5 walking
2017Q3 0 running, 0.5 walking
2017Q4 0 running, 0.25 walking
The blurry bit is 30-50% of my spinal cord being dead between T5 and T7.

A spinal fistula (just read the link) is a malformation of the arteries feeding blood to the spinal cord. They are very rare. About 5-10 per million people per year are diagnosed, so about 3,000 per year in the US. In my case, there is a system of arteries that run (in the wrong direction) from my pelvis up to somewhere in my thoracic spine. Occasionally that blood flow was probably disrupting the hemodynamics (such a great word) of the blood feeding my spinal cord which sometimes resulted in nerve cells dying.

In September I had a second spinal angiogram where the surgeon inserted glue at the start of the fistula which will hopefully block any blood from flowing into it and causing further damage. I'll have another angiogram in a few months to look again, and really I won't be sure until I haven't seen any further loss of function for a year or two.

Nerve cells don't regrow, but they can get retrained. I've probably been slowly and constantly retraining mine for years before I couldn't keep up with the damage. For the past three months I've been working on rehab and doing a lot of adjusting medications. Lots of odd pain, twitching, and ways in which my body doesn't work well. All the common impacts of having an incomplete spinal cord injury. I probably won't know for at least a year how much function I will get back. Most likely not all of it.

But yesterday I (briefly) ran on a treadmill at my physical therapy appointment.

So on to 2018 and having a better year.

4 thoughts on “Spinal Epidural Arteriovenous Fistula

  1. Dear Greg,
    Thank you so much for sharing your very difficult medical journey with us. We send healing thoughts and prayers that you are able to regain as much of your functioning as possible. You are such a wonderful father, husband and friend, you deserve the best. And, when we visit next, we look forward to your grilled chef specials and playing on the jungle gym in the pocket park!
    Love you,
    Janie and Eric

    1. We are very sorry to hear all of this. Wish you and your family be strong and for you keep up your rehab and hopefully this year we’ll hear some good news about your health

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