Non-Compliant?

For the first time in my life, I chose not to get testing done that a doctor recommended.  I thought about it, blogged about it, thought some more, and decided not to do it.

When I phoned to cancel the appointment, the scheduler tried to talk me out of it, stressing the importance of a test that the doctor had ordered.  She was good, too, and convinced me that I should just re-schedule.  I thought about it some more, then the day before the rescheduled test, I phoned to cancel.  No, don’t reschedule.  Just cancel it.

Next, I cancelled my follow-up appointment with the doctor who ordered the CT.  That receptionist, too, offered to reschedule me.  When I declined, she asked for my reason for cancelling.  The whole point of the appointment was to look at the films and discuss the radiologist’s report.  No test means no need for follow-up.

Today’s mail brought a letter from the doctor.  Sitting at the post office, holding the mail, I wondered if opening the envelope was going to reveal a letter saying that if I wasn’t going to get the test he recommended, there was no need for me to ever return.  I was pleasantly surprised:

Wow!  What a nice letter.  It almost tempts me to reschedule the test.  Almost.  My cynical side says that this would be fabulous as CYA defense, in the highly unlikely event that this is somethings serious leading to death and my survivors wanted to sue; so maybe it’s not concern for me, but himself, that prompted the letter.  Yep, I can be pretty cynical!  I’d rather think it’s just a really nice letter and the doctor is a really nice person.

Tired as I am of not being 100% healthy, I didn’t arbitrarily blow-off the CT.

  • Symptoms were reduced.  Not completely gone, but mostly.  Way better than when I first saw my PCP
  • I have a life, and I don’t want to sacrifice more time to medical issues.  Occupation:  patient
  • I don’t need more exposure to radiation
  • So long as the symptoms are tolerable, I’m okay with not being positive of the cause (for now)
  • The test is expen$ive

About that last one:  So far this year, my insurance company has already processed $5,957.97 in claims for my family.   Insurance has picked up most of it; nonetheless, our out-of-pocket in January was $1,300.96.  We’ve already spent another $60 this month, plus have two appointments this week that will set us back roughly $200 each.  You see why I’m reluctant to incur the expense of a CT scan which will be entirely out-of-pocket.  If the symptoms were still bothering me, I’d spend the money; it’s hard to fork out that kind of money when the symptoms are nearly gone.

Dr. ENT, thank you.  I’m impressed that you’d take the time to write such a nice letter when you didn’t really have to contact me at all.    If the symptoms get worse again, I’ll be sure to investigate.

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12 thoughts on “Non-Compliant?

  1. I’ve canceled my share of diagnostic tests. And have declined a few as well. Pain comes and goes. Sometimes it’ll hang around for months and sometimes for weeks or maybe just days. I had a saliva gland problem and could not chew anything for nearly two weeks. I kept putting off going to the doc and putting it off and by darn, one day the pain just stopped.

    When I first had shoulder trouble, I had an MRI which showed a torn rotator cuff. Doc recommended surgery. I said no thanks. He said I’d be sorry in six months (yeah he actually said that).

    Fast forward five years — still no surgery. The tear has gotten worse but I know how to move and not move and I take care of the shoulder. The pain is around a 2 most of the time, a zero sometimes, and when the weather changes drastically, it’ll bop up to around 7-8 for a few days.

    A long winded way of saying I always take a wait and see attitude. Most of the time the symptoms either graduate or sometimes all of a sudden from one day to the next just disappear.

    Nice letter from your doc. Mine only said “you’ll be sorry” The only thing I was sorry about was going to see this jerk in the first place. You know what? I told him that too. I’m getting right ballsy in my old age! LOL

  2. Wow — that letter sure sounds sincere. I suspect I would have caved and scheduled it, but I also have insurance that would have covered a large chunk of the expense (and, more importantly, negotiated the rate down significantly!).

    OTOH, although two docs have suggested an abdominal CT may be justified by my symptoms, when I’ve asked if they’re absolutely necessary, the docs have agreed it’s not urgent at this time and that avoiding the radiation when possible is probably a good idea.

  3. Too funny Sherlock! Socks, I hope it does just go away for good. PCP did call an Rx for mom that did nothing for her problem, but was not good for a referral once we did see her. But she agreed it certainly didn’t appear to be an abscess. With that info, we called dentist whose receptionist was more than willing to pass referral to an oral surgeon without her needing to go to dentist first. So we’ll do a biopsy in a few days. Keeping fingers crossed it’s something benign.

  4. Penelope – I was amazed at how nice it was.

    Sherlock – I, too, like the wait&see approach. After two months, when it started looking like I had the mumps, I thought it was time to get things checked out. As for shoulder surgery, yeah, that’s definitely worth putting off as long as possible. I think sometimes we just don’t click with a doctor and need to find someone we’re a better match with.

    Aviva – Thanks for stopping by. I completely understand about putting off non-urgent tests. Hope your docs can get stuff figured out & resolved for you – without having to do the CT.
    If we’d already met our deductible, and if we hadn’t just had such an expensive January, I’d be more inclined to go ahead with the test. Then again, I’ve about hit my limit. I’m so tired of tests and doctors appointments and medication and still not feeling well, that I not only want the test to have a high probability of clarifying the problem, I also want the knowledge to shape a better treatment plan.

    Chelsea – PCP couldn’t solve the problem and wouldn’t write a referral? That sounds really odd. I’m glad you were able to get your mom in to someone else. Hope things turn out okay.

  5. If there is anyone in the world I’d trust to make an informed health care decision, it’s you. Your posts have always been both insightful and thoughtful, giving evidence to the amount of effort you put into the subject. And trust me, I do appreciate the $$$ concern. All this being said, I have a friend who lost her husband to colon cancer because he refused to have the colonoscopy that could have found the problem before the symptoms occurred. And the year she decided to skip her mammogram, this same friend found breast cancer.

    Salivary glands are not ankles or knees or shoulders. They don’t get strained through exercise. They’re a gland. If they quit working or hurt, it’s because something has happened to them, and it could be something serious.

    And while I don’t disagree with the “wait and see if it heals itself” plan, I also don’t believe doctors write strongly worded letters because they have nothing else to do. If it doesn’t clear up completely, please rethink the scan. (Please. We like you and want to enjoy your posts for a long time.)

    • Thank you, Carla.

      The ENT told me that iF it’s a stone in the salivary duct, as long as it’s not impeding anything (it was, but now it’s not), it’s okay to just live with it. The other option is to carve it out, which doesn’t sound optimal to me (I’m sorta attached to it).

      Of course I’ll keep an eye on things, and if it gets worse, I’ll go have the test done. Hope things are well with you.

  6. PCP said she didn’t know a good oral surgeon there, which may be true.

    I don’t remember, did you already rule out Sjogren’s as the cause of the mumps-like appearance? Is it bilateral?

    • Not knowing who to refer to, vs being unwilling are very different. whew! Hope it all works out.

      Sjogren’s is definitely ruled out for me. Yay! At least one thing in my favor :)

  7. Wow, interesting letter I must say, is he clearing himself or actually concerned. Hard to know at times when you have been tossed around so much.

    My right Parotid gland has been swollen since September. The ENT I was referred to said it would “resolve”, but of course it hasn’t. Since I get tossed around all the time because of my MS, I decided to start canceling things too. I’m actually enjoying it. And, I’m not going to any ENT’s anytime soon.

    I met you on an RA Connect quite a while ago and have been enjoying your blog since then

    • Hi Lois, thanks for commenting. It sounds like your ENT should modify his speech: this usually resolves on its own, but if it hasn’t by ___ date, come back. Maybe you can find a different ENT.

      For the swollen parotid gland, putting together everything that various doctors have told me, treatment is plenty of liquids (to think the saliva), plus citrus fruits and sucking on sour things – I guess to get the saliva flowing more freely and dislodge the stone. Holding heat on the swollen area can help, too. Then again, IANAD.

      I think there’s a certain sense of power in cancelling appointment sometimes. Maybe we can’t control what our bodies are doing to us, but at least we can control our schedules :)

  8. Wow! This is so nice to see from the Dr point of view. However, as a career patient, this still adds to your workload. There needs to be a RA patient fellowship. :)

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