Posted 5/29/2015 10:25 AM (GMT 0)
Hi Bellyfull,
It is definitely a good idea to get the actual images from the radiology center. I assume the primary reasons for getting an MRI are to look for/rule out CNS lesions and tumors. If you don't mind me asking, do you have any?
Before I finally put two and two together early this year, I've been investigated primarily for MS for about five years, and this has included four MRIs--the first three to look for lesions, and the last one ordered to look for an acoustic neuroma because of severe vertigo attacks I've had. With the exception I'll describe below--a primary reason you need your actual images--all of my MRIs have shown an "unremarkable brain" (which makes me giggle and also hurts my feelings a little...hahaha).
Now the exception: My second MRI report described a strong signal flare in my cervical spine. I received the report and the DVD of the scans before I saw my neurologist, and I am too curious to wait. I had read enough to know what a signal flare meant--lesion!--so I was alarmed and I looked at my own images on my PC at work.
Now the PSA: While it's unwise for anyone who is not trained at interpreting brain scans to make interpretations on our own...it's also *not* that difficult to learn to look for something as obvious as overly intense signals/lesions on these scans. If you do a survey of, say, 20 different examples (via Google, looking at medical journals and studies) and compare normal brain and spine scans to those of MS patients who have lesions, you can learn to spot lesions in both the brain and spine, including the axial/cross-section views.
I had looked at my first MRIs and thought that by doing the above I simply was too naive/uninformed to interpret the images. Everything felt "normal," but my symptoms were not normal and prior to the first MRIs, my doctor suspected something like MS. But then I got the report from the doctor, and the doctor's commentary, and both said that the brain scans were unremarkable--meaning there was nothing to see. Which is what I had seen: nothing unusual.
The second set of MRIs, which included all three segments of the spine as well as the brain, appeared very different overall: the contrast was much stronger, and the images seemed pixelated or blurry in some spots. I thought perhaps it was a different machine or technique that I couldn't find examples of. But there was one section of the C spine that appeared brighter than the surrounding areas, and that made my heart race--it looked a lot like a lesion/signal flare--and so I was anxious to see the doctor and get the report. When I did, the doctor read the radiologist's report and was alarmed because it said that a signal abnormality on the C spine--what I had spotted on my own--suggested a lesion on the C spine. The doctor was very agitated and asked if I had by any chance gotten copies of the actual images. I did, and I brought them to the appointment. He took the disc and disappeared for 20 minutes. He came back and told me, angrily, that the MRI center never, ever should have given me these images or written a report based on them because the images were bad--they were simply poor quality overall, which happens sometimes if there is too much movement, etc. (I was having a lot of tremors, twitches, etc. at the time and it was indeed difficult to remain completely still in the MRI machine.) He said that the "signal flare" was almost certainly an artifact from movement and not a lesion, but that he wasn't even comfortable making that call because he quality was so poor. He said he would call the MRI center and order them to do new scans for me *at no cost* because they had sent me away with terrible-quality scans.
The point of this long story relates to your question: The doctor said that some doctors--particularly general practitioners, but even some neurologists--simply take the radiologist's report as gospel and don't look at the actual images themselves, which is always a mistake. He said that I was wise to have asked for the images (actually, they just offered them; I didn't ask) and that any neurologist worth his salt will review the written report, but also always look at the images his or herself because, unfortunately, sometimes radiologists misinterpret the images. Other times, for example, if the doctor orders the MRIs because of suspected MS, and there are no flares but there is a tumorlike abnormality, the radiology report will only address the stated concern and say that there are no signal flares, never mentioning the potential tumor, which of course could be life threatening or at least the cause of symptoms.
So the point is: Yes, always get copies of your own images and make sure your doctor reviews them and doesn't simply go by the radiology report. It's never a bad idea to have multiple people look at the images because they may have differing interpretations, anyway. Also--this is only my opinion, but probably will be understood by other people who live with Lyme and have had to learn a lot of medical and scientific stuff along the way--it's really not that hard to do a comparative analysis, thanks to the Internet, and recognize normal brain and spine MRI images from abnormal ones. If there is a lesion, it's generally not subtle. And it's consistent throughout the series, including from the different views. A big, bright, glowing spot in the middle of dull grays is not something that's easy to miss--granted, a lesion could appear more subtle, but many would indeed be easy to spot. So be your own advocate. Don't be a hypochondriac and don't assume you're an expert, but it doesn't hurt to look for yourself. It's your body and your life.
One last cautionary tale to illustrate the point. This may sound preposterous, but it's absolutely true. Decades ago, my grandmother was rushed to the hospital with breathing trouble, among other issues. The hospital took X-rays of her lungs. My grandmother was probably in her late 60s or early 70s--totally lucid/coherent/intelligent--and yet the doctor asked my mother and father into the hallway to discuss my grandmother's health, rather than speaking directly to my grandmother. I was a teenager, but I was offended by this. Anyway, he asked my parents if my grandmother was a smoker; yes, they said, she had been all her life, but she recently quit. He then said that there was a tumor on one of her lungs evident in the X-ray and that she likely had lung cancer. It was terrifying. I asked why he was telling us instead of her, and he seemed annoyed by the little brat challenging his judgment, but we then went into the room and he gave my grandmother the news. He mounted the X-ray image on the lightbox and pointed to the mass and explained what he had just told us. She was obviously devastated; we all were. The doctor went away for some reason--to order more tests, maybe, I don't recall--but while he was gone, either my sister or I observed that the mass adjacent to our grandmother's lung was in line with her ribs--where a rib would be spaced between other ribs on that side, and symmetrically opposed to the rib on the side of the other lung. "It looks like a rib," we agreed, but it was more of a curiosity...the sentiment was "isn't it amazing that what looks like a rib to us simple human beings is obviously a cancerous tumor when viewed by a doctor?" The doctor returned and no one said anything. He had ordered more tests to be done. OK, long story short and foregone conclusion: the "tumor" on the X-ray was simply my grandmother's rib in the end. This was the conclusion after many expensive tests and a lot of heartache and worries of her imminent demise, as well as condescending lectures about her having been a smoker. (Ironically, my grandmother only started smoking in the 1950s when a doctor told her it would be 'good for your nerves,' and she quit in the late 80s or 90s because she had never wanted to be a smoker in the first place!) We asked how the doctor could have mistaken a basic part of the anatomy that was in its normal placement for a cancerous tumor, and his explanation was basically that mistakes happen, X-rays can be deceptive looking sometimes, and that it's better to be safe than sorry. And yet the family had already observed, in the hospital room, what the ultimate conclusion was. We just didn't have the nerve to say anything about it and instead deferred to the expert opinion. Had we challenged the doctor and gotten a second opinion on the films, we probably could have saved time, worry/stress, and a lot of money for the insurance company.
Be your own advocate, know your own body, ask questions, and don't be afraid of looking stupid or obnoxious. The reality is that doctors are wrong sometimes and, yes, most doctors' egos get upset when you challenge their omniscience, but it has to be done. It just has to be done. Radiology reports can be wrong and your doctor should look at the images. You are not too stupid to look at your own images, as long as you take the time to get a general idea of what normal and abnormal anatomy look like and you realize that you're making amateur interpretations, but those guesses and that curiosity can in some cases be a life saver, even if all it does is insult and challenge the doctor into paying a little bit more attention to your case.