Tuesday, June 20, 2017

Pressure and Time

     My husband and I are under crushing amounts of the first, because we are rapidly running out of the second, and I'm beginning to panic, just a little. I rarely admit that, because I'm a firm believer that panic helps absolutely nothing. Besides, there's always been an answer for every situation I've ever come up against. I like to think of myself as pretty clever, and more than that, stubborn, which is a quality that has by turns saved my ass, and placed it firmly in the fire. Depends on the situation. This time, though, I just don't know if we're going to be able to sort this out without some outside intervention. Even then, I don't know that it will be enough.

     We've known for awhile that my husband needs a second spinal fusion. He had a 24-inch fusion of the thoracic and lumbar spine when he was twenty-two, and since that mess of titanium and solid bone is now over two decades old, it's not surprising that the fusion itself has caused some additional damage to his lumbar (lower) spine. It's essentially crushing it, which means it's playing all kinds of hell with the nerves and the spinal column. None of this is news, and it's also the reason why he went to seen his spinal specialist last week. He'd already had to reschedule the appointment twice due to work commitments, so by the time he finally got there, I was more than anxious to hear what the doctor would say.

     It was nothing good, which we were prepared for, but it was worse than we thought, we were decidedly not prepared for. I suppose that's shame on us, for not anticipating the worst, but living like that is beyond draining, and I realized a long time ago that I can't live my life dreading every doctor's appointment. So, I will admit to being somewhat taken aback when my husband just handed me his phone yesterday with his radiology results pulled up on it - Tarlov cysts. Large ones, and more than one of them. Fuck.

     I think I've mentioned this before, but one of the things to remember about Marfan syndrome is that it's a disorder, not a disease, and for a diagnosis to be made, you have to exhibit a certain amount of symptoms, of which my husband has a frightening number. There are also different levels of severity when speaking of Marfan syndrome, and unfortunately, my husband is on the severe end. All this time, we've thought he was going to be lucky enough to avoid these cysts, even after that scare we had in the summer of 2013, but it appears we were mistaken.

     We're still waiting to hear from his doctor to see how this changes his immediate treatment plans, because he is long past the asymptomatic stage of living with Tarlov cysts. Now we know that these, along with the severe spinal degeneration, are what's responsible for the sometimes-white hot pain that burns in his bones. Of course, as soon as I found out, I did what I always do when faced with an issue of any type, and started reading. As far as I can tell, there's really no agreed-upon best method of treatment for these little bastards. and with everything else my husband has going on health-wise, I have no idea what options are even available to him.

    I do know, though, that he can't go on like this. I mean, this is the problem that we always circle back to - how do you keep someone going when the natural order of things says they should have been out of commission a long time ago? Marfan's is a genetic disorder, and no one, not the best doctor in the world, can change his DNA; that's impossible. And so we're left with this, a mad scramble to try and manage the fallout as best we can. It's starting to really pile up, though, and it feels more like we're running and running, as fast as we possibly can, but there's a huge dark wave that's gaining on us, no matter how hard we push ourselves to move, run faster. I'm terrified it's going to drown us.


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