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Thread: I'm entering the health care rabbit hole

  1. #1
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    I'm entering the health care rabbit hole

    So I noticed some flank/rib pain on my left side several months ago but attributed it to shoveling dirt for several weeks while doing some landscaping. Then a few weeks ago, I started having some other symptoms that indicated possible kidney/bladder issues. I went to my new primary care doctor, saw his PA and since there was microscopic blood in urine, she sent me off for an immediate CT scan. All of my testing shows no infection, no stones, no bacteria, no cracked ribs... - that is to say, everything visible through testing is negative. So now I have visited with a urologist who says I need another CT with contrast and some other tests to rule out bad stuff. I am a person who does not have a lot of faith in conventional "healthcare"; I think we are over-screened and over-drugged in most instances except in emergencies. It is interesting that not one doctor has actually laid hands on me - only ordered tests. I am starting to panic now because I know that once you enter this rabbit hole, the bills pile up and stress mounts while doctors chase symptoms and order test after test or send you to yet another specialist. Aaargghh, what to do???

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    Senior Member razz's Avatar
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    Hugs is all that I can offer but sending good thoughts your way.
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    When there is not an immediate "this is it", it becomes a series or "rule out possibilities". It's been this way for a very long time. Start small and least invasive. Why do a CT with contrast if it's not indicated? Subject a patient to chemicals unnecessarily. I'm not sure what you want in a physical exam-if you wanted a full physical exam as a new patient that should have been part of the request when scheduling an appt. Your primary complaint doesn't warrant a physical exam IMO. You gave clarity in your complaint.

    As a healthcare provider, I schedule an appt for what I want/need. I get what I ask for.

    Due to the letigious status of our society, precedence supports ordering tests as standard of care .

    Do I love it? No. It's often ridiculous. But it is reality.

    Case in point: one of my favorite general surgeons said: I have a 95% accuracy of looking at a patient and hearing their symptoms to know they have gallbladder disease. But testing and CT scans are demanded by my patients before they schedule surgery. This conversation was in the early 90s. So full lab panels and an CT ultrasound. Yup, wasted money but happy patients.

    One of my favorite orthopedic surgeons received a B grade from Blue Cross: didn't order enough MRIs on knees/shoulder patients. His surgical outcomes (that's 1yr result) were excellent. In 20 years of working with him he had 1 ACL call that in fact was not torn. That is an amazing track record. And I watched him do the Lachman test one last time before surgery--that is the accepted definitive diagnostic tool.

    So what would I do? I would walk the series of testing requested if my pain was persistent and I wanted it resolved. You have every right to say no-every doctor order is a suggestion. But that will not get a diagnosis.

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    Senior Member catherine's Avatar
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    Quote Originally Posted by Gardnr View Post
    When there is not an immediate "this is it", it becomes a series or "rule out possibilities". It's been this way for a very long time. Start small and least invasive. Why do a CT with contrast if it's not indicated? Subject a patient to chemicals unnecessarily. I'm not sure what you want in a physical exam-if you wanted a full physical exam as a new patient that should have been part of the request when scheduling an appt. Your primary complaint doesn't warrant a physical exam IMO. You gave clarity in your complaint.

    As a healthcare provider, I schedule an appt for what I want/need. I get what I ask for.

    Due to the letigious status of our society, precedence supports ordering tests as standard of care .

    Do I love it? No. It's often ridiculous. But it is reality.

    Case in point: one of my favorite general surgeons said: I have a 95% accuracy of looking at a patient and hearing their symptoms to know they have gallbladder disease. But testing and CT scans are demanded by my patients before they schedule surgery. This conversation was in the early 90s. So full lab panels and an CT ultrasound. Yup, wasted money but happy patients.

    One of my favorite orthopedic surgeons received a B grade from Blue Cross: didn't order enough MRIs on knees/shoulder patients. His surgical outcomes (that's 1yr result) were excellent. In 20 years of working with him he had 1 ACL call that in fact was not torn. That is an amazing track record. And I watched him do the Lachman test one last time before surgery--that is the accepted definitive diagnostic tool.

    So what would I do? I would walk the series of testing requested if my pain was persistent and I wanted it resolved. You have every right to say no-every doctor order is a suggestion. But that will not get a diagnosis.
    I've also been told by many doctors that they give patients prescriptions because that's what patients expect. They feel like they wasted the cost of the office visit if they don't get some tangible resolution, and that usually takes the form of a script.

    So we can say the doctors over-order tests and over-prescribe medications, but as Gardnr said, they are often just trying to meet patient expectations.
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    I had a physical back in early May, mentioned the side pain and that doc asked me if I wanted a lung x-ray? Huh? I declined that . I asked the urologist if after all these tests, do they ever come back not showing anything abnormal? He said in his experience...about 90% of the time so I am not sure why he is wanting this scan with contrast which is so expensive that it has to be authorized. I asked him about having reactions to or damage from the dye and he said it is rare. I am flummoxed because I do not know who is on first and I don't want unnecessary tests if there is a simple way to figure out what is going on. I gather there can be many reasons for my symptoms. Rabbit hole...

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    Senior Member rosarugosa's Avatar
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    Pinkytoe: I certainly hope they rule out anything serious. I do know from what my DH has been through these past 6 years that blood in the urine can be indicative of kidney or bladder cancer. It doesn't have to be, but I'm sure those are some of the things they need to rule out. If you had one of those conditions, it wouldn't be a good idea to leave them unaddressed. Wishing you the best.

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    Senior Member SteveinMN's Avatar
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    IMHO the best way to avoid getting lost down the rabbit hole is to arm yourself with information. pinkytoe, do you have the time and ability to research your symptoms on-line or at a library?

    Doing this will, IME, give you a better sense of where to look next for answers. Perhaps there are less-invasive or more-specific tests which can rule out multiple possible problems. Or you may find a set of symptoms for an illness that you would want to explore further with your doctor -- or that you do not display typical symptoms for an illness for which they want to run an invasive test. This education also can give you an idea of which tests are there to CYA ("We always run that one.") and which invasive and/or expensive tests are not likely to give you information in which you (and your doctor) can have much confidence.

    I'm not suggesting you be your own doctor; just that it is smart to be as educated a consumer as you can be and that someone (you) has to manage this whirlwind of specialists. If nothing else, you'll be able to ask pointed questions when someone starts running down an odd trail.

    You might also get a second opinion once things narrow down a bit.
    If Americans expended even a fraction of the energy on civic engagement that we spend on consumer ideology, our democracy would be much healthier. Can you imagine people camping out to vote? -- Charles Roberts, Amherst, Mass., Nov. 25, 2006

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    I am prone to health anxiety in the first place and have tracked down every single symptom and all the potential causes/treatments. The issue is that many physical complaints can be cause by a number of totally different conditions. This doc began by stating that he was following the standard of practice in looking for symptoms which includes the invasive ct scan with contrast dye. I asked him a lot of questions but he was a good salesman. Could be that my insurance won't even allow it or may recommend another type of test first - that remains to be seen.

  9. #9
    Senior Member JaneV2.0's Avatar
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    Don't overlook the profit motive. The medical establishment likes to blame the patient for costs that are arguably the result of greed.

    I hope this turns out to be nothing and that you escape the machine unscathed.

  10. #10
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    Maybe you could seek out a second doctor, to find one you can trust. Are there local people you can ask about who they like and trust?
    I was going to an eye doctor here and did not really trust him, and a local person recommended someone else, and it was night and day.
    If you are calling your current doctor a "good salesman," it does not sound like the trust factor is there, which makes it difficult for both parties.

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