If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Son going to have Cardiac MRI at NEMC

Collapse

About the Author

Collapse

Janet McClure Single mother to two amazing kids. James is 13 and has HCM. Emily is 11 and recovering from TBI. Find out more about Janet McClure
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Son going to have Cardiac MRI at NEMC

    My 12 year old son was diagnosed in January and since has gotten worse. We are going to TUFTS NEMC in Boston this Thursday to see Dr. Udelson and Dr. Martin Maron.

    Dr. Martin Maron called last night as asked for my permission for them to do a Cardiac MRI on James while we are there. We are leaving on Thursday, March 31st. He said it would have to be done at a different hospital about 20 minutes away from NEMC. Do you know which hospital this is? Do you know if they usually use contrast with this test and about how long it will take? He did say it would be covered under their research program and would not be billed to insurance. I didn't mind one bit and think that all the information they can get will help James as well as the study of this disease. They are going to do it this Friday at 3:00 p.m. I just wanted to know how to prepare James. Thanks for your help!
    My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

  • #2
    I have never had a cardiac MRI, but I have had several brain MRIs both with and without contrast, so I am sure that the procedure is the same.

    They will put your son in a tube that will enclose his whole body. The machine will then take pictures for about 45 minutes while your whole body is in the tube. The machine makes alot of loud banging noises the whole time. They will usually provide earplugs and/or headphones to block out the noise. If he needs contrast, they will take him out part way through, put the contrast through an IV, and then put him back in.

    The best advice I have is to tell him to close his eyes the whole time and to listen to music that he likes which will relax him. I am somewhat claustrophobic, and the only time I ever opened my eyes was at the end when I was being brought out. Much better that way.
    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.

    Comment


    • #3
      Cardiac MRI

      I have had a cardiac MRI and they did not use a contrast dye. They would only use dye if they were looking for a blockage, usually. Mine was also in a research setting, so I doubt you will have to worry about it.

      It might be an open MRI, they are getting more popular, however the cardiac MRI is newer and thus, probably a closed MRI. (an open MRI is one where you are not in a tube)

      Anyway, Cynaburst is right. Have your son pretend he is taking a nap and just keep his eyes closed the whole time or give him a sleep mask.

      The proximity of the MRI to your face automatically causes a "flight or fight" reflex, but if you keep your eyes closed from BEFORE you are slid into the tube till when you come out, there is no reaction.

      Also, they turn the machine off and on many times throughout the test and it sounds different (but loud) every time. It was hard to chill out b/c it was always changing. It sounds like the machine is going to fall apart or break or worse, but it is just creating different magnetic fields. Be sure to wear ear protection. They should provide some, but you can pick up foam earplugs at the drug store for a couple bucks just in case.

      It takes about an hour, maybe less.

      Comment


      • #4
        Janet,

        I had a cardiac MRI at Mayo Clinic last December. They did use a contrast dye that was injected through an IV tube inserted in my arm prior to the procedure; there was no need to move me in and out for the injection of the dye. In this case I was told the dye helped the contrast between tissue types in the heart. Diffferent facilities may have different procedures.

        I am not claustrophobic, but I admit to getting a little more apprehensive about things early in the MRI! However, I settled-down and could have gone to sleep but for the voice coaching me to "take a deep breath, hold it .. OK". (After the MRI, when I finally got around to looking at the patient info booklet babout the MRI I discovered that it's typical for the patient to get anxious and then settle down--wish I'd read that BEFORE the test!)

        There is an antenna device that gets laid on top of the patient's chest--it just lays there and connected to the outside world by a cable. It's not particularly heavy but it definitely contributes to the overall experience and I had no info about it prior to the test.

        I think Cynthia's "close your eyes" idea has some merit. I wasn't offered headphones so you might make sure you ask about them on James' behalf.

        Good luck to the both of you!
        Rob
        --Living life on the edge .. of a continent!
        Charter member: Tinman Club

        Comment


        • #5
          Janet,
          The Hospital is Beth Isreal. I know you said James is into baseball. Beth Isreal is literally about 1 minute away from Fenway. And I also know that they hold tours.

          Comment


          • #6
            Thanks

            Thanks for the information. I am looking forward to going and seeing the specialist. I think it will give me a peace of mind about everything. Bryan, what will the temperatures be like there in Boston. Here in Atlanta, it has been pretty warm. Thanks for all the help! Janet
            My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

            Comment


            • #7
              Hi folks--

              This information was useful to me. I have a cardiac MRI scheduled at Mayo next week and I've never done that before. Pretty sure that although I'm not phobic that I would not like being in the tube, but the info about clangs and bangs, closing eyes before going inside, etc. helps me. I always do better if I know what to expect, and can do some mental pre-runs to practice getting used to the idea.

              Thanks, as always,
              Lisa I.

              Comment


              • #8
                Janet,
                The weather has been okay here. Its been 45-50 here, and the weather shows it continuing into next week. But its New England, so you never know. Hope all goes well.

                Bryan

                Comment


                • #9
                  Hi Janet-

                  I had the benefit of a cardiac MRI through Dr. Maron's research grant. As Bryan said- it will be done at Beth Israel.

                  Fenway Park is around the corner and would make for a great side trip. I'm involved with Youth Baseball and have accompanied literally dozens of kids on the Tour - it is worth the effort.

                  My MRI took over an hour, I'm guessing 70-80 minutes. I know Dr. Maron was eager to get that time down and they may have accomplished it by now. James will be alone for the test, but able to hear and speak with members in the glassed-in control room. Half way through they will add the contrast which will cause scar tissue in the heart to render as white on the scan.

                  In the end- no big deal. The images are really incredible and the experts will have some excellent data to ponder.

                  Good luck
                  • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
                  • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
                  • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
                  • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
                  • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
                  • 2011: Brigham & Women’s - Medtronic ICD implant

                  Comment


                  • #10
                    Thanks Boz

                    Thanks Boz for the first hand experience information. It helps me know even better what to expect for James. I know Dr. Maron said the measurements with the MRI will be exact. Everytime the echos are done they always are not the same.
                    My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

                    Comment


                    • #11
                      James

                      Hello Janet:

                      I read your posting about my story and want to thank you for you kind words and support. I am very sorry to read about James and want you to know my wife and I will be praying and thinking about you this week. The one good thing I have learned through this web site is that medically how much farther advanced things are since my children passed away in the 80's, and although I am saddened by you situation, I am also excited that they have so much technology and learning since then help James and give you a little more peace of mind. I hope it works out where you can get James over to Fenway to tour it, although I have never gone I am quite sure he would be very excited about seeing the park.

                      Gary Halbert

                      Comment

                      Today's Birthdays

                      Collapse

                      Working...
                      X