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Why can't our doctors explain our MRIs to us?

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    Why can't our doctors explain our MRIs to us?

    So many have posted here asking the MSW community what our MRIs mean. Why are our doctors so seemingly inept at interpreting them for us?

    After reading so many posts about MRI confusion, it seems to me that there is a HUGE disconnect between doctor explanation and patient understanding. Are we patients not probing enough? Are we fearful of sounding stupid/wasting the doctor's time, or is something else the problem?

    Does anyone have any ideas as to how we can successfully transition from getting our MRIs to understanding our MRIs (after all, we are paying big bucks for these tests and deserve some degree of satisfaction!)?
    Tawanda
    ___________________________________________
    Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

    #2
    From what I've seen across different boards, people ask about their MRIs online because they're impatient and are trying to interpret the terminology in their radiology reports without waiting for their neurology appointments. They ask before they've even seen their neurologists or given them a chance to explain the reports. Doctors can't be blamed for that, and it's not an indication that the doctors were seen and they didn't explain.

    It can't be assumed that people are asking online because they have horrible doctors who didn't explain their MRIs. That's the same kind of assumption that can lead to someone believing that something wasn't explained when it actually was.

    Studies have shown that most patients remember only about half of what doctors tell them during their appointments, no matter what it was. So there's a good chance that the person complaining that their doctor didn't explain their MRI, or something else, really did have it explained in some way and they just don't remember.

    I think we all know of people on boards we read who never understand things no matter how many times they're explained in many different ways by many different people. No matter what, they remain perpetually clueless. And these are the same people who complain that their doctors don't explain things.

    I've actually heard and overheard doctors explain things to patients (sometimes several times), only to then hear the patients complain that the doctor didn't tell them anything. A patient's inability to focus on and retain what they hear during their appointment isn't the doctor's fault, either.

    And some people aren't satisfied unless the doctor takes an extra 15 minutes to explain every...last...little...thing at a level of detail that is excessive and unnecessary for the task at hand. That's not the doctor's fault, either, but those patients complain that "nothing" was explained to them.

    A neurologist's job is to diagnose, treat and manage a patient's condition, and explain what a lesion is and what it means to their MS. It's NOT the doctor's job to get into a technical discussion about what a T1 lesion is, or what a FLAIR or spin sequence is. But some patients will complain that their MRI wasn't explained because the doctor didn't give them a 20-minute tutorial about MRI technology.

    And some people ask online about their radiology reports because they're double checking what the doctor said, not because the doctor didn't explain.

    I think that there are some people who don't ask questions because they don't want to sound stupid. I think that some people don't ask questions because they're intimidated. That may not have anything to do with the doctor, it's just their personality or how they learned to behave as a child. But I also think a lot of it relates to what the studies have shown: patients become passive during their doctor visits and don't pay attention or ask questions because they basically space out. Many feel like a doctor's visit is something that's done to them rather than an exchange they should be actively engaged in.

    Of course there are bad doctors. I've been through some myself. But that's the exception rather than the rule. Doctors can't be blamed if patients don't pay attention and don't retain information. If patients just nod and say they understand something when they really don't, they can't blame the doctor for it. How many times have we read a post asking, "What did my doctor mean by that" when they had the chance to ask the doctor at the time and didn't. Then they want everyone else to speculate.

    And doctors absolutely can't be blamed for not explaining MRIs when the people asking about their radiology reports online haven't even seen their doctors about them in the first place.

    Comment


      #3
      Originally posted by jreagan70 View Post

      And doctors absolutely can't be blamed for not explaining MRIs when the people asking about their radiology reports online haven't even seen their doctors about them in the first place.
      Yes, that is certainly a recipe for disaster unless you are trained to interpret such things, in which case you would have no need to ask anyone at MSW or anywhere else! I have never looked at a preview, myself (but when I was first diagnosed, you got those HUGE films, making it much harder than it is now to scare yourself silly).

      I do agree that there is a white coat phobia (just like how people freeze up looking at a priest's collar) but I think "MRI speak" really intimidates patients, new ones especially. I know it did me! That's why although I agree with most of what you said, I feel for the posters asking the questions. Although my MRI reports continue to sound really ugly, I've gotten used to it.

      I have just been seeing a rash of MRI threads lately and decided to address the topic as a whole. The traditional advice for people who are nervous about their own abilities to handle doctor appointments and ask the right questions is to bring somebody with you. In the case of MS appointments, easier said than done. Other people know less than us about this disease most of the time, so we have to be our own health advocates more than ever with MS. That is the harsh reality and an awesome responsibility to adjust to.
      Tawanda
      ___________________________________________
      Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

      Comment


        #4
        I agree with your answer, jreagan ! Here are my thoughts regarding this. If the MSer is seeing a 'general' neurologist, it is possible that doctor doesn't know an enormous amount about reading an MRI picture, but I seriously doubt that . An MS specialist neurologist has extensive training in the entire diagnostic process and would be more familiar with MRI's.
        The second thought that occurs to me is that the neurologist wants to shift any liability to another opinion in the line. So the radiologist that reads the MRI and writes the report and signs his name to it. The signature on the report is like 'chain of custody' .
        In any case, if an MSer doesn't get satisfactory answers, they should seek out another opinion, case closed. Good luck

        Comment


          #5
          Originally posted by Tawanda View Post
          So many have posted here asking the MSW community what our MRIs mean. Why are our doctors so seemingly inept at interpreting them for us?

          After reading so many posts about MRI confusion, it seems to me that there is a HUGE disconnect between doctor explanation and patient understanding. Are we patients not probing enough? Are we fearful of sounding stupid/wasting the doctor's time, or is something else the problem?

          Does anyone have any ideas as to how we can successfully transition from getting our MRIs to understanding our MRIs (after all, we are paying big bucks for these tests and deserve some degree of satisfaction!)?
          Hey Tawanda,

          Glad you're back on the boards...we missed you.

          I see the photos and hear the reports of a neuro sitting with a patient and looking at the MRI together, while the neuro explains all the nuances in the film (image now that they're on CD.)

          From the time my symptoms started to now is about 20 years, I've been diagnosed for almost 15, I've never had a neuro sit with me and go over my MRI image. This includes neuros and MS specialists. I've had them explain the report after they've viewed the MRIs (but the viewing was not done in the exam room with me present.) I've had them concur with the radiologist report and explain anything I don't understand on the report, I've had them send me back for a follow up MRI or at the least have my MRI read by a neuro radiologist.

          The neuro who diagnosed me used to say, "I treat symptoms not MRIs"...and she believed in doing MRIs if symptoms changed. My MS neuro and my present neuro do them once a year, present neuro has ordered them inside that year time frame if a new symptom (not sensory) crops up.

          To be fair, I don't have a huge lesion load, so over the last 5 years they're mainly interested in this solitary lesion that seems to be causing most of my trouble. They always make a point of telling me if that lesion, in particular, is "behaving" and not growing larger (it's not shrinking but at least it's not bigger.)

          Have any of your neuros actually brought the MRI images into the room, or pulled them up on their computer? I'm sort of blase, at this point about the disease, in general. But if I wanted a neuro to go over my MRIs with me or elaborate on the report, I think I'd just ask.

          I've put a link to a report up, many times, and if you google " More Than Meets the Eye"
          you'll find it. But it does make one take note as to the value of a singular MRI...it's just a snapshot in time.

          Comment


            #6
            Originally posted by jreagan70 View Post
            From what I've seen across different boards, people ask about their MRIs online because they're impatient and are trying to interpret the terminology in their radiology reports without waiting for their neurology appointments...
            There you are, you slippery little expert, you! I tried to ask you, in particular, questions related to terminology from my most recent MRI report but no dice. I assume you did not see my post with your user id in it. Or, you're just cagey.

            I'd like to point out that sometimes questions get asked online because it helps to crystalize how a patient should phrase questions to their neuro. If I can get answers before my appointment, I can save my neuro the trouble of answering them. By the same token, I can save my neuro time by being familiar with the info if I take the time to reflect on concepts discussed online. If he can enhance my understanding of why MRIs help him with treatment decisions, so much the better. I believe in being prepared for my appointments to get the best return on my $$. YMMV.

            Comment


              #7
              All these factors come into play when it comes to this breakdown of communication.

              I still think discussing them on this forum is valuable. I sure have learned a lot about reading reports from the knowledge of people here.

              One experience that I had that makes me want to continues to understand MRI reports more was after my last flare.

              I came to my neuro with significantly more disability than my previous appointment. She ordered an MRI just seeing my walk, no need to do a neuro exam.

              When the report was ready I was able to retrieve it online (one of the wonderful things about new technology). I read it and it stated in great detail how many new lesions there were and even mentioned an atrophy of my brain.

              I went to see my neuro expecting gloom and doom. All she said was, 'no, there was no change' I assumed she didn't want to scare me since it was too late to do any IVSM.

              So, in short, doctors can and will give us information but being able to understand them ourselves is empowering.

              Comment


                #8
                I have been fortunate in that both neuros I have seen since diagnosis always pulled the MRI pics up and didn't just rely on the radiologist report. First neuro retired but was general, but saw many MS patients. Second neuro is MS specialist.

                That being said, I have some cognitive issues. In the beginning, I could follow & understand. Now, not as much. So the Q&A here sometimes helps reinforce some terms for me, other times, gives me a chance to take it in at a slower pace.

                I understand wanting to be prepared to ask questions and often Google terms. But you have to realize that what sounds alarming to us, when explained by a neuro is really nothing.

                The other issue is that the report is as good as the radiologist. While lesion load unchanged, last report was much more detailed and took note of many other findings. When researching and reading, I could have let myself become a basket case, thinking I had liver tumors, and needed both gallbladder and sinus surgery! None of it true. These were all there going back 10 years in MRIs, just never reported before! New neuro and primary doc ordered other tests, after reassuring me most likely nothing to worry about, and sure enough, that was the case
                Kathy
                DX 01/06, currently on Tysabri

                Comment


                  #9
                  Originally posted by BadAttitude View Post
                  There you are, you slippery little expert, you! I tried to ask you, in particular, questions related to terminology from my most recent MRI report but no dice. I assume you did not see my post with your user id in it. Or, you're just cagey.

                  I'd like to point out that sometimes questions get asked online because it helps to crystalize how a patient should phrase questions to their neuro. If I can get answers before my appointment, I can save my neuro the trouble of answering them. By the same token, I can save my neuro time by being familiar with the info if I take the time to reflect on concepts discussed online. If he can enhance my understanding of why MRIs help him with treatment decisions, so much the better. I believe in being prepared for my appointments to get the best return on my $$. YMMV.

                  Well, I read your post, and have seen many more like it.

                  All our MRIs are starting to sound alike to me! I remember freaking out about the mentioning of, "brain atrophy". My Doctor wasn't concerned about it. Why not? I wouldn't understand "why not?" if I stood in his office all day, asked a million questions or asked him to explain it to me like I was 5 years old! I could talk to every neurologist and/or MS Specialist in the world and I still wouldn't fully understand my MRI report, but the good thing is, if my doctor is not alarmed, I'm not alarmed, and he's not alarmed! Full disclosure: that's what I have come to accept because I am like really stoopid and if I'm still walking, talking and driving, the MRI jargon doesn't scare me anymore (heck, I don't even know what "YMMV" means...I looked it up in the Urban Dictionary and it said "your millage may vary" OR "you make me vomit"!). Good luck getting your answers, Bad Attitude. MS is a confusing disease and MRIs are confusing reports to the lay-person and don't let anyone tell you differently!
                  Tawanda
                  ___________________________________________
                  Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                  Comment


                    #10
                    Interesting conversation.

                    I agree that it can be empowering to fully understand what is going on. My MS Neuro did take the time to go over my MRI with me. I am probably the type of patient that is on the overly annoying side in terms of wanting to fully understand. (Including understanding what was written in the MRI report).

                    I agree that many do ask because they have received their report and 'want to know' and maybe don't want to wait 1, 2, 4, or 10 days for their appointment with the Neurologist. But, I feel like that is fair that they want to know. Our health is valuable to us.

                    I also agree that many leave a doctor's appointment having not fully comprehended, taken in all info presented.

                    And I agree that many patients don't want to waste their doctor's time with following up on such things, or are intimidated to ask in the first place.

                    Anyway, I feel like this site exists for "us", the people living with MS. I think that those on this site should not be scolded for asking questions or wanting to discuss issues that relate to them. (Keeping in mind that the responders are most likely not physicians or neurologists, but also people living with MS).

                    I think that posting is a way for many of processing and understanding as well. (Yes, oftentimes, there may have been a similar posting that took place in the forum a year ago if the person read through and investigated). But, I feel like we are all here for one another. If there is a question that we find redundant or not worthy of replying to, then it is our option to not reply (or to not be bothered to continue reading the post).

                    Being the type of person who does want to understand what's going on with my MRI, I found the following video helpful.

                    https://www.youtube.com/watch?v=Bq1Yi-Jp4Yg

                    (youtube "Understanding MRI", put on by mslivingwell.org)

                    Anyway, I hope the video may help someone. Also, I'm hoping to not antagonize or provoke anyone with this message. Life isn't worth anger over trivial things.
                    RRMS Dx: 3/23/15
                    (Optic Neuritis Dx 2/27/15; Feb/2014 right leg numbness--at the time diagnosed as Sciatica, but probably first episode)
                    Started Tysabri 5/22/15: (Infusions: 5/22/15, 6/18/15, 7/16/15)

                    Comment


                      #11
                      Teekybird,

                      Thank you for posting the link to YouTube. It was very well done. It is clear, concise, understandable, comprehensive and gives us a wealth of information.

                      It can rescue us from many confusing discussions. I hope it can be saved on the site so it can be easily retrievable for anyone wanting to make sense of an MRI report and the films.

                      I remember the night during my first diagnosis. I had picked up the report and all the films (before they were converted to computer disks that can't be viewed on a Mac), sat down with dinner and opened the package that revealed my fate.

                      There, on the left side in the center of my brain, was a large bright white spot with tenacles sort of like a squid that showed up in several of the horizontal and vertical splices of the film. I didn't know what it meant. It just looked scary. I tried to tell myself that it could be some sort of reflection that didn't mean anything. Something so big and obvious couldn't possibly be what the radiologist's report was referring to. But there was a feeling in the pit of my stomach that my brain was not supposed to look like that. Then, in the top front near the edge of my brain, there were a bunch of small black dots. They didn't look so good either.

                      Little by little, by learning from this forum and other Googling, my questions have been answered and are still being answered. Your video just was a huge leap towards understanding more, making me realize how much I had learned and also seeing how much I still did not know. I will watch it again.

                      GOOD JOB!

                      Comment


                        #12
                        Originally posted by palmtree View Post
                        I hope it can be saved on the site so it can be easily retrievable for anyone wanting to make sense of an MRI report and the films.
                        Thank you Teekybird for this video and to you, palmtree for making this suggestion! I have made a sticky thread of this video http://www.msworld.org/forum/showthr...-your-MRI-quot
                        1st sx '89 Dx '99 w/RRMS - SP since 2010
                        Administrator Message Boards/Moderator

                        Comment


                          #13
                          I know I ask many of the questions I ask here after doctors appts I ask because I am seeking clarification. Ms is sneaky and not fully understood in and of itself just like the human brain. Our symtoms can occur without warning, literally change with the weather and can be caused by lesions that are too small to see on film.

                          Plus doctors don't really like to say I don't know. Patients like me with cog fog find it extremely difficult to deal with equivocations, so it's a recipe for disaster for me from the beginning of the appt usually. I also think that some of the terms our specialists use don't really have a direct translation into layman's terms. You know like they say Eskimos have like 30 different words for snow. Since we only have "snow" I think sometimes something gets list in the translation.
                          You can't stop washing your feet just because you're afraid you'll fall in the shower.

                          Comment


                            #14
                            Originally posted by alishape View Post

                            Plus doctors don't really like to say I don't know.
                            Plus us patients don't really like to hear they don't know.
                            Tawanda
                            ___________________________________________
                            Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

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