The Winter of Recovery

An update on my Venous-fistula CSF Leak Recovery

The first month after the new endovascular therapy at Mayo clinic was amazing, after six disappointing blood patches, for the first time in a year I actually felt substantial improvement that lasted longer than a week. I still had some vaguely headache-like feelings, but it was the first real sustained improvement I’ve felt in a year.

Not only that, the doctor placed no restrictions on my activities as I had before. The first thing I did when I got home was pick up my son and daughter and give them big hugs. I could now pick up my kids and fly them around like airplanes. I could give piggyback rides. I could do basic tasks like take out the trash. I could help my wife with our living-room renovations.

It felt like I had my life back and so, armed with the knowledge of a “90% chance of recovery”, and having had my position eliminated while out on disability, I immediately wanted to set out to understand what my work situation was. I did a couple of low intensity meet and greets and confirmed to my relief that once I’m back at it my problem will be more of what to pick than not having options. However, not long after this initial push though I had a sharp reminder to slow down.

Because it is such a new procedure I understand the doctors aren’t all that great at understanding and communicating what comes after yet. They didn’t volunteer much information about what recovery will be like and so I assumed it would simply be over after a short period. However, as I came off of the medication for rebound hypertension it became clear that I still had some ways to go.

And so I started to get a new kind of headache, nowhere near as bad as before, but including some dizziness and sometimes substantial enough that I need to sit and recover for 10 to 15 minutes, usually occurring in the late afternoon to evening. Of course this scared me, I want so badly for things to return to normal and I could feel my life slipping through my fingers again.

The doctors say to take it slow, and that it’s likely to be my body readjusting from a long period of low pressure. Another couple of months won’t make a big difference and for now we need to monitor. The key is in if I need to return to laying flat again, which so far I thankfully don’t.

So for now I’m spending time with my family, tooling around with some coding projects, and waiting for my three-month post surgery MRI and evaluation in mid March.