Friday, May 20, 2011

Stuck in the Middle With You

     Today was the first time in two years my husband has seen the doctor who looks after his spine. I was the one who pushed him to go, since he doesn't like this particular doctor very much and therefore isn't overly enthused to make appointments with him. Added to the personal dislike is the fact that this doctor, who is actually a surgeon, is the one who referred my husband to the ineffective and difficult-to-get-ahold-of pain management doctor that he currently relies on to help him alleviate the near-constant pain in his back. This appointment was the result of me trying to find a starting point from which to begin charting a new path in pain management for him. It's thus far been nothing but frustrating and we've only just begun.

    I figured we had to start here because we needed to know where he stood, so to speak, with regards to the level of spinal deterioration that he's currently at. As I mentioned, it had been a solid two years since anyone had looked at his spine, so we both figured he was due. It seemed like things had gotten worse in the past eight months or so, and my husband was musing about the possibility of another spinal fusion. He's known for awhile that it's somewhere on the agenda in the future and it seemed like the time might have come.

     On the one hand, a major surgery like that would suck phenomenally, for a multitude of reasons. At the most practical level, it would require a fair chunk of time to be taken off work and that's time he simply doesn't have. Even if I were allowed to transfer all my sick days and all my vacation days, it wouldn't be enough. That would leave us in that pesky no-paycheck area, which is just unpleasant all the way around. Then there's the emotional weight to consider; the knowing that my husband was laying on a cold steel table in some operating room, laid open like a damn science project while they add to the hardware he's already sporting, is something I don't like to dwell on. It's not like I'll go to pieces or anything (not my style at all), but it's just something that doesn't sit comfortably within my brain.

     The other side of the argument is that if we can just go ahead and get it over and done with, things would improve significantly for my husband in the long run. Once the initial recovery period was over and he's mobile again, I really believe the number of days that he finds himself incapacitated due to back pain would be significantly reduced. As someone who has a tendency to not be able to see the trees for the forest (meaning I miss the immediate details sometimes due to being so focused on the BIG PICTURE), I kind of want this to happen sooner rather than later. I know it would be awful to see him suffer through that surgery and recovery period, but I could stomach it much easier knowing that he won't be hurting so much during normal life.

     However, there will be no scalpels in the near future for my partner in crime. The doctor ordered a full-body x-ray today (which my husband thoroughly enjoyed, geek that he is) and, upon viewing it, opined that there really wasn't a significant change in the condition of my husband's spine, certainly not enough to warrant another fusion. Instead, he talked with my husband about more pain management (I'm really getting sick of that phrase...) My husband was at least able to voice his concern with that plan, namely that while the pain management doctor was very nice, she wasn't exactly ideal to deal with the Marfan's Syndrome stuff.

     She's really hard to get into, for one, and that just doesn't work for someone in his situation. My husband needs someone who is more accessible than she usually is, due to the nature of his disorder. Added to that is the fact that the plan of action up until now has been to simply give him more muscle relaxers (they don't work), and you see why there's an issue. The surgeon listened to what my husband had to say and said that he'd talk to the pain management doctor's office about the uniqueness of the situation and see what could be done to improve it. So it appears that, once again, my husband and I are to simply wait and see what happens.

     I've noticed that I use the word "frustration" in all its forms quite often in when I write and while some may think it redundant, I would argue that I can't emphasize that emotion enough. My husband and I are so often stuck in the in-between, that place of non-action. It's no one's fault, particularly, because that's just the nature of Marfan's. No one, including the experts, know exactly what it's going to do or how fast it's going to do it. It makes it hard to combat and, I imagine, hard to treat from the doctor's perspective. I want to bang my head against the wall sometimes because I just don't know what else to do for my husband. He's still in pain, there still aren't any answers, I'm still angry at the doctors for not having those answers and I'm still infuriated by my own uselessness. That anger is futile, though, and gets us absolutely nowhere. (That's what the good voice in my head tells me, anyway. The bad one just laughs and gleefully stokes the fires of frustration.)

     And so we'll wait and see how bad it gets, and hope like hell that we're not stuck here too much longer, waiting...

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