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I'm in this fun loop right now where I have an undiagnosed small mass. Everyone agrees the best way to diagnose it would be with an MRI, but no one knows which
by smeej 2y ago
I'm in this fun loop right now where I have an undiagnosed small mass. Everyone agrees the best way to diagnose it would be with an MRI, but no one knows which kind of specialist to have order the MRI or what kind of MRI to order...because we don't know what kind of mass it is. We know it's near a few things, like my lungs and my spine, but it's apparently not connected to them ("apparently" in reference to the cardiac MRI that picked it up incidentally). Everyone who has seen it (original MRI reader, cardiologist) is defaulting to "PCP should order," but PCP doesn't know what to order.
Meanwhile I'm sitting here saying it's asymptomatic, very small, "nonaggressive," "well-circumscribed," and incidentally discovered. Can't we just ignore it? We'd never have known about it but for this unrelated test.
But no. Everyone agrees we oughtn't do that. They just don't know what we ought to do instead.
The system is hard enough to navigate when you're brighter than average and generally well. I have no idea how they expect people to do it when they're ill and have no idea how to read medical research.
ETA: I'm only in this situation subsequent to my sister's idiopathic sudden cardiac death. Medical examiner's report recommended any siblings or offspring be screened for heritable cardiac channelopathies. She had been called a hypochondriac from the time she was 12 until she died suddenly at 29 and surprised the heck out of everybody.
- deleted 2y ago[deleted]
- OfficialTurkey 2y agoI'm sorry for your loss. May her memory be a blessing.
- smeej 2y agoThank you. It really has been.
- paulsutter 2y agoPlease just go get a scan somewhere honest (not the US). You might want scans at regular intervals to see if it’s stable, growing, etc, discuss with multiple doctors In your case nobody in the US system wants the liability of saying you can keep it under observation for a while, and insurance doesn’t want to pay for any more scans. In Japan I got a shoulder MRI for $300 with an appointment available the next day. For $75 more I sat down with the radiologist who showed me the scan and talked me through it. You can probably get them cheaper in Mexico, just as fast, with similar quality if you do a little searching US healthcare is literally a scam. At Swedish Cherry Hill a doctor sent me down to the emergency room for a scan which cost me $8000. I got numerous bills from different parties, plus I was trapped in that room for eight hours under vague threats of legal consequences if I left, while they ran up the tab.
- smeej 2y agoI'd happily (well, not happily--my last MRI sucked. But willingly) get one here in the U.S. if anyone could tell me what test to get. You can't just walk in and ask for "an MRI." MRIs come in categories. A lung MRI is different from a spine MRI is different from a cardiac MRI. But since this random little mass isn't apparently attached to anything, nobody seems to know what type of MRI I should have this time. (They all seem to agree it does not need to be another cardiac one, thankfully. Eighty minutes in that tube being stopped 100 times and told to hold my breath was excruciating.)
- paulsutter 2y agoGo to a doctor in an honest medical system and they will tell you which MRI to get Doctors here are hamstrung by liability and insurance
- smeej 2y agoI appreciate the thought, but "Look at a globe, figure out which healthcare systems are honest, and then figure out which doctor will know what to do based on a vague description of "it looks like there's something in my thorax" isn't actually helpful advice. The point is that which type of MRI to get depends on what the mass is, but what the mass is can apparently only be diagnosed by MRI. That circle doesn't go away because someone doesn't have to deal with my insurance company.
- paulsutter 2y agoWhatever you're doing isn't working. You can get as many MRIs as you need inexpensively in better medical systems that can be reached with a short plane flight It's a skill issue
- smeej 2y agoI want to receive as few MRIs as possible, which you might have gathered from my comments. That is very much the point. Edited to add: Why are you pitching having to leave my life for up to months as though it's a good thing and not an extreme lifestyle cost that makes it vastly worse as a solution than trying to get a straight answer from someone locally? Uprooting my life for some indeterminate amount of time is not a solution. I don't know how you've so thoroughly misassessed everything I care about in this situation, but these is the least helpful advice I think I've ever received from anybody.