Wednesday, November 23, 2011

Oh No, Not You Again!

     He's been getting head rushes with ridiculous frequency lately, has my husband. It's not that he's not used to them, since they've been a constant in his life for the past ten years or so, but they're not fun and they're starting to make their presence known in a more insistent manner. It was particularly bad a couple of weeks ago, when he felt as though he was going to fall over nearly every time he stood up from his desk. I know he really doesn't enjoy it when they happen this insistently, but there's nothing much to do about it except wait them out. Actually, scratch that - he doesn't enjoy them when they happen ever. 

    The most accurate description he's been able to come up with to describe them to me is that it's like having  a regular head rush, like when you stand up too fast after you've been sitting awhile, combined with a brain freeze from eating something cold too fast. It's painful for him and he's unable to see for a few seconds because his vision suddenly becomes nonexistent. At that point, my husband has to sit down before he falls down and wait for the badness to run its course. Though he's suffered from this nonsense for years, it took awhile to figure out what exactly was going on, because like damned near everything else with his Marfan's, it wasn't easily recognizable for what it was.

     Dural ectasia, while not present in every person with Marfan's Syndrome, does effect more than sixty percent of those who do have the disorder, including my husband. I shouldn't be surprised, really, since he's got just about every aspect of Marfan's present in varying levels of severity. What did surprise me was when my husband revealed that it wasn't identified as dural ectasia until sometime in 2006, a good decade after his spinal surgery. Given that he had to have all kinds of tests and CT scan-type things prior to going under the knife, I thought it would've been detected at some point and made it clear that he had some serious shit going on back there in addition to the scoliosis that he was there to have corrected.

     I think I'd heard of the term "dural ectasia" before I met my husband, but only because I'm a complete bookworm and read anything and everything I can get my hands on. I'm full of random knowledge because of it and if you're looking for a trivia partner, I'm your girl. In any case, knowing what the word is and knowing what the condition is are two completely different things. The short version, in the best summation I can manage, is that dural ectasia is the enlargement of the membrane that surrounds and protects my husband's central nervous system, i.e. his brain and spinal column. While not always problematic in the people it affects, my husband is one of those lucky ducks that suffers from headaches, head rushes, intense lower back pain and numbness in his legs as a result.

     Based on the (limited) information I've been able to find about it, it seems that dural ectasia can pop up at any time along the way, so perhaps that's why it wasn't found when my husband went in for spinal surgery all those years ago - it hadn't arrived on the scene yet. I've read that a CT, a mylogram or a spinal film all might clue the doctor in to what's up, but none of those are fail-safe methods. I'm still not completely sure why it took as long as it did to properly diagnose, since he's got what seems to be a textbook case. Not that I hold it against the medical community for taking awhile to figure it out; Marfan's is classified as a rare disorder, after all, and one can hardly expect their general practitioner to know every possible aspect of it.

     Truthfully, having a name for what's going on doesn't really change much. Granted, now that he knows what's causing the head problems, he can stop worrying that it's something more dire, like a tumor. That's a relief, but as there's no cure or really effective treatment for the issues caused by dural ectasia, it's just giving a different name to frustration. There's pharmacological pain management, of course, though I've mentioned before how ineffective that course usually is due to my husband's ridiculously high tolerance of all things narcotic. Beyond that...there's nothing else.

     I don't know how this is going to affect things when he does have to have his second spinal fusion, because in addition to thinning the dura itself, dural ectasia also thins the vertebrae. So that's exciting. With that part of it, the worrying about how it's going to affect him when he has his next spinal surgery, I feel like I'm borrowing anxiety because it's not something that's a reality at the moment. We've got enough actual things to worry about, most of them the mundane problems that everyone I know has to deal with, that I have no business looking for more. I know that, logically, but sometimes I find myself looking without realizing what I'm doing. Ugh.

     It'll get better soon, the frequency and intensity of the head rushes; they always do. This is just one more aspect of the whole that ebbs and flows as it pleases. It pisses me off every so often, but that's simply a manifestation of my frustration at seeing him in pain and being able to do nothing. It's not a new sensation and while I hope I get better at dealing with the frustration, at the same time I wonder if that's wrong. (Come on, becoming desensitized to your husband's pain? Does that strike anyone else as being more than a little fucked up? Thoughts for another day...) The best I can hope for at the moment is to drill the phrase, "Sit down before you fall down," into his head and hope it sticks.

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