Saturday, July 26, 2008

Ignatius, the friendless fibroid

Like me, Ignatius is a loner.
As I reported earlier, I decided to explore the possibility of a UFE, or uterine fibroid embolization, procedure. On Tuesday, July 22, I took the first step with an MRI scan and a consultation with Dr. V., an interventional radiologist.
Despite my best efforts to be late, I arrived a little early. After I'd been chided for standing in the wrong line (I was supposed to intuit the process) and after being asked for the insurance card I'd handed over three minutes earlier, I found myself with a pager. I wondered if I was in a hospital or the Cheesecake Factory.
I'd settled into a chair and cracked a book for the wait when it dawned on me I didn't know where to go when called (in hindsight, it was very obvious, but I wasn't thinking straight that morning), so I backtracked down the hall to the information desk. Just as I was asking, the pager buzzed and lit up impatiently. That was quick! Mr. Information told me to retreat the way I had come and to go to the double doors. "If you don't respond to the pager, they call you, and then . . ."
I was slightly panicky because, according to the paperwork, I should have verified with the [new] insurer that the MRI scan had been pre-certified. Now they tell me. Or remind me. I think that I will never master the art of adulthood and responsibility, and wonder how many hundreds this particularly dimwitted oversight will cost me.
A young man, the first of many people whose names I didn't catch or remember, told me how and where to undress and stash my stuff. When he called me, now fashionably dressed in matching back-and-front gowns and green booties. I called back for help. He found me wrestling with the locker key, which it turns out requires a token that had fallen to the floor. My blood was definitely bypassing my brain.
Next stop: Blood tests and IV needle. This MRI scan requires the use of contrast dye, which in turn requires healthy kidneys. I acknowledged that I'm not on dialysis ("that I know of"). After running my contribution through a desktop gizmo, the cheery nurse reported that my kidneys are "working well." "Too well," I muttered, as I was hit by another urge. (This proved to be a day of frequent urges.)
Next, I was taken to a waiting room where I had just about enough time to notice the House Beautiful pile before another woman came for me. I don't think it was even 9:30 yet, and already I was in the MRI room.
She plugged in the IV tube, gave me a cool rush of saline, and told me what to expect:
  • The MRI scan would take 30–45 minutes.
  • I should lie as still as possible.
  • I would have a squeeze ball to alert her if I needed anything (I took this to mean, "If you become claustrophobic and panicky").
  • She would be able to see and hear me (camera).
  • The table would move, but I shouldn't.
  • During the scan, she would tell me through headphones to hold my breath until instructed to breathe again. Oh, the power!
I lay down on the table like a sacrifice as she and another woman put a heavy band across my mid-section, stuck a cap on my head, and propped my calves over a large pillow (even a sacrifice needs blood flow).
All set?
Let the games began.
I'd read that the technology has improved since my last MRI scan (of my head) and that the equipment is larger (obesity epidemic) and more open. Previously, I just fit, with my arms pinned to my side, my nose nearly touching the top, and no leverage to back out. It was like being in one of those coffins with the split top, only with the head covered and the legs exposed. I'm not particularly claustrophobic, but that time I did start feeling trapped and unable to escape at about the 25-minute mark.
By comparison, this was great. My forehead was sticking out one end so I could see a bit of the ceiling, I had room to move my arms (even if I couldn't), and I didn't feel like there was no way to get out without help in an emergency. (With a lot of effort, I think I could have backed out because more of my legs were free.) The squeeze ball nurse call is a bit of comfort, I suppose.
The hard part was holding my breath as many times as she asked me to, for up to 20–25 seconds. It wouldn't be bad sitting up, but it's a little problematic at my size in the prone position (one of the forms had a question about breathing issues lying down, but I didn't think it would be one—but then I didn't know about holding my breath). When I did hold my breath, loud, rhythmic sounds would kick in—not the same sound or rhythm, but different ones at different times. I distracted myself from the feeling I was suffocating myself by counting to the rhythm and trying to visualize it. The mind has many coping mechanisms, even for coping with something as unnatural as an MRI scan.
Finally, she told me that this was the last time I would have to hold my breath and that they were almost done. The timing was perfect, because I imagined I was feeling the effects of diminished oxygen.
After completing a survey, dressing, and asking Mr. Information the way, I made it to the next stop: the heart/vein area, because, I suppose, that's where most embolizations are performed. I checked in with my insurance card and received another pager, which buzzed and lit as soon as I had settled on a seat. Such efficiency!
I'm not sure who picked me up; she may have been one of those mentioned on Dr. V.'s Web site. She confirmed my information and left, to be succeeded by Dr. V.
Dr. V. asked about how and when I discovered Ignatius and the grief he gives me, and how much I know about UFE. He gave me a folder with more information. I asked if fibroids were causing my urinary problems. "I think so. Look at this," he said, as we got down to the business of checking the bastard out.
It turns out ultrasounds aren't very reliable for pinpointing fibroids. There, on the computer screen, was Ignatius, a single 13-centimeter fibroid perched on top of my uterus, not far from my spine. There were no others. Just Ignatius. His weight is pressing down, flattening ("pancaking," as Dr. V. put it) the oval of my bladder so that it's a little bubbled on one end. Dr. V. said, "Here's a more dramatic view," adding, "There's not a lot of capacity there." He can't be sure, but agreed that Ignatius could be affecting my lower back.
The images were fascinating. How often do you get to see your own innards? There mine were—dominated by a chunk of slowly growing muscle tissue.
Dr. V. told me what to expect from the procedure, described the pain management options, and talked about the logistics. He was open about the risks, mentioning "death" first, and covering infection requiring hysterectomy, premature menopause, and so forth. He answered the questions I remembered to ask about UFE (I forgot several) and reminded me to read the material and the Web site. I asked him about particle migration, and he told me a joke about why doctors cost so much. I must have been distracted and not laughed, because he told me it was just a little joke, and the point is that, having performed more than 3,000 UFEs, they are experienced, and that a complication like that is usually the result of inexperience.
He thinks I'm a good candidate and that infection is unlikely because of Ignatius's location. (Apparently, the combination of his size and location is a bit unusual. Typical.) I asked about the likelihood of recurrence given my age and proximity to perimenopause (I don't think I'm quite there yet, but am probably close), and he said that Ignatius didn't happen overnight—he's been growing, in his estimation, at least 10 years. Ten years! 1998 was a bad year in many, many ways.
He told me to contact his patient access representative to schedule the UFE. I checked out then, hoping that the last person I talked to really did change my status on the printout from "self-insured." Yikes.
I'm still mulling and still looking at discouraging photos, still thinking that my symptoms aren't that bad, still thinking that it's possible I could feel a lot better with a tamed and reduced Ignatius.
To celebrate surviving the MRI scan and the consultation, I splashed boiling water on my bare stomach above the navel and then did everything wrong, from not applying a cool cloth and then opening the blister to using antibiotic and an improper bandage. Now I have a lovely second-degree burn that, fortunately, is healing in spite of my ignorance.
And a little decision.

4 comments:

  1. So that only leaves one more question: did you tell Dr. V that you'd named your little hitchhiker? :)

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  2. Well, no, but then he didn't ask, either. :)

    I read the post-procedure warnings, and now I'm trying to talk myself out of it again! Too much information (and photos of necrotic labia) is not a good thing.

    I'm also going to have to find someone to stay with me a couple of days, because I don't trust myself to be lucid enough to call 911 should the artery start spurting. :P

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  3. Necrotic... **passes out**

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  4. Yes, and I also found a case of a woman who returned to the hospital after a few days and later died of a necrotic uterus and bowels. (I gather that's not very likely in the hands of an experienced interventional radiologist.) And you wonder why it's hard to decide. :O

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