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Cardiac MRI... when are they appropriate?

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  • Cardiac MRI... when are they appropriate?

    A recent post on the forum brought this to my attention but I didn't want to hijack the thread with a personal question. I'm nine years post-diagnosis now and almost eight years post-myectomy, but have never had a cardiac MRI done. When is this appropriate? Is this now a routine procedure for HCM'ers or only when symptomatic? Thanks for any info. Jim
    "Some days you're the dog... some days you're the hydrant."

  • #2
    Re: Cardiac MRI... when are they appropriate?

    Jim,
    For me, it was done as part of my evaluation to look specifically at my valve since I had both a static and dynamic obstruction. Funny thing is it didn't show the problem until they actually got into the LV during my myectomy.
    L
    Onward and Upward !

    Diagnosed 4/07 HCM with fixed & dynamic obstruction
    Myectomy with resected cordonae tendonae 4/08 CCF
    ICD 10/08

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    • #3
      Re: Cardiac MRI... when are they appropriate?

      Not sure what the recommendations are, but my local cardiologist made it seem like it was just the next logical step after seeing cardiac hypertrophy from my stress echo. (He wasn't really certain if it was high blood pressure or HCM until after the MRI results came back.) When I first traveled up to Tufts for my initial consultation with Dr. Marty Maron, it seemed like an MRI was typically one of the tests you'd need to have before meeting with him. (I got to skip that step at Tufts, obviously, because I had my local MRI results with me.)

      Again, I couldn't tell you exactly how my MDs used the MRI, but it struck me that it was a test to rule out hypertrophy from other causes and to rule in HCM.

      Jonathan

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      • #4
        Re: Cardiac MRI... when are they appropriate?

        Join the club, Jim, I never had one either. In fact, going to doctor tomorrow and one of the questions on my list is "Why no MRI when I read from so many that they had it?"

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        • #5
          Re: Cardiac MRI... when are they appropriate?

          Thanks everyone, and Frosty, let me know what your doctor says tomorrow!
          "Some days you're the dog... some days you're the hydrant."

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          • #6
            Re: Cardiac MRI... when are they appropriate?

            I am currently gene positive but no HCM diganosis at this time. I have been seen at two COE's and both specialists had me undergo an MRI w/contrast. So I have already had two done in the 2.5 yrs since genetic testing was done. My current specialist Dr. Barry Maron insists on MRI during screenings - although after my last one, he said I can go every two years now for appointments/screenings. My son (age 6) who has HCM, had his first sedated MRI at the age of 4 at Stanford. Dr. Maron, although very much for MRIs, doesn't believe children should undergo them until they can do it without sedation. So while we are stationed here (my husband is active duty AF) Gavin will most likely not have another MRI. My MRIs were both normal, my son's MRI already showed signs of fibrosis. But so far in our HCM experience - MRI is a crucial test done at the major COE's.
            Angie & my boys
            Gavin diagnosed at 3 1/2 yrs old - Mar 2009 w/HCM, Gene mutation identified 7/09
            Younger brother (Cullen) - born 7/08, gene negative but still being screened on occasion due to his brother's "unique presentation" - meaning there could be another gene involved
            Husband (Chad) - clear
            Myself - Positive for gene mutation (identified 10/09), echo negative but diagnosed with mild regurgitation of the mitral, tricuspid & pulmonary valves

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            • #7
              Re: Cardiac MRI... when are they appropriate?

              For me, I did not have an MRI of my heart when I was initially dx in 1995 but I just had one last week now that I am being evaluated by a COE HCM department at Stanford. I don't think this test was standard practice until the last few years, other people will likely chime in on this, but the medical team wanted to do this procedure to rule out additional problems and or "scale" the amount of scarring/fibrosis my heart has.

              Maybe it is of dx value, but HCM pts likely do have scarring (70% based on previous research) given the impact of our hearts growing thus I am not sure of the functional impact knowing this.

              Maybe this is really just to confirm dx vs another dx and for research only? I really appreciate your question though.
              Dx 1995 with non-obstructed HCM, verapamil 120mg
              2004, ICD, battery recall and migration x2 (3 surgeries)
              2007, 26 inappropriate shocks fr. Lead failure, two lead extraction surgeries...(total 8 surgeries in 4 years NO FUN)
              Since 2008, Living without ICD.......
              2011 First chest pains, frequent Began thinking about new ICD,,,,
              10-2014 I'm ready!

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              • #8
                Re: Cardiac MRI... when are they appropriate?

                I had one at Mayo during my first set off appointments there as part of my official diagnosis. This was almost four years ago.
                Last edited by mandksiders; 01-24-2012, 03:57 PM.

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                • #9
                  Re: Cardiac MRI... when are they appropriate?

                  They are often done when trying to get a more exact septal measurement. They are more accurate in measurements than echos. They can also determine the extent of fibrosis which can be useful in assesing risk of SCD and need for ICD. I never had one either as they were not being done when I was being worked up to begin with, and then once I had my ICD, it wasn't a possibility.
                  Daughter of Father with HCM
                  Diagnosed with HCM 1999.
                  Full term pregnancy - Son born 11/01
                  ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                  Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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                  • #10
                    Re: Cardiac MRI... when are they appropriate?

                    I was diagnosed Oct 1st 2010. I had two echos shortly after being diagnosed with a heart wall measurement of 26mm the first time and 22mm the second time. After doing a cardiac MRI the heart wall measured only 16mm (I was glad to hear that because 30mm is the critical thickness point). A cardiac MRI is a somewhat enclosed machine and being somewhat claustrophobic I had to take a couple of "little friends" (pop pop) to help me through it. I tried to seek out an open MRI but I was told that open MRI's cannot be used for a cardiac MRI. My wife told me I was in the MRI machine for about 2 hours and when they said they were done I said "that was quick, can I stay in a little longer please". The guy performing the MRI said "actually, we need to turn you over and do the other side now" (obviously he was only kidding). I needed to be awake and work with the technicians doing the MRI. They have you "breathe in" then "breath out" then "breath in and hold it for about 5 seconds" then breathe out, about 100 times. I have an ICD now and can't get an MRI with an ICD implant now. The MRI showed some fibrosis also that was not detected with by the echos. When I went to the HCMA meeting last summer I remember the guy talking about cardiac MRI's being the only true way to see what is going on and he had some examples up on the screen to prove it against an echo. Both my kids tested positive and had echos and have been given a green light to do whatever they want to at their age of 11 and 15 based on their echos, stress tests and a visit with a cardiologist at Children’s hospital in Boston. I must say that I would feel better if my kids had a cardiac MRI and I hope to have them get one soon just to make sure nothing was missed on the echo.
                    Hope my experience helps.
                    Bill (Vermont)

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                    • #11
                      Re: Cardiac MRI... when are they appropriate?

                      Thanks everyone for your comments. Sounds like this is a fairly recent addition to the HCM screening process which is why I would not have had one in 2003. Also, doctors weren't talking about fibrosis back then, at least not to me, and given that it is being mentioned more and more on the forum here I suppose I should do some research into exactly what it is and how much impact it has on our hearts. I guess my personal HCM knowledgebase is a little outdated. Bill, I'm extremely claustrophobic so when I needed a brain scan some time ago I opted for the open MRI. In the long run though they just weren't able to get an accurate enough picture from it so I ended up in a closed machine anyway. Thanks to the folks who make Ativan however, I got through it just fine.
                      "Some days you're the dog... some days you're the hydrant."

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                      • #12
                        Re: Cardiac MRI... when are they appropriate?

                        I have not had one of these MRI tests done either. I have HCM and currently using medications to deal with the symptoms. I went to Tufts, saw Dr. Maron and was given options for surgery. I may ask my cardiologist about this test to see if it would be helpful in any way.

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                        • #13
                          Re: Cardiac MRI... when are they appropriate?

                          I never did too and wish I did for a baseline. I know in 10-15 years they'll figure out how to do them for us bionic folk.
                          Marc
                          Diagnosed @ 48
                          Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                          Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                          AICD - Valentines Day '08, Spark Plug replaced 11/14
                          After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                          Quietly going insane . . .

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                          • #14
                            Re: Cardiac MRI... when are they appropriate?

                            My HCM workup at Johns Hopkins included a Stress Echo, Cardiac MRI and a special kind of EKG that I forget what it is called.

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                            • #15
                              Re: Cardiac MRI... when are they appropriate?

                              Hi. I had a cardiac MRI because apical HCM can sometimes be difficult to assess.

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