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You Won't Believe It!!!!!

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  • You Won't Believe It!!!!!

    i was told at my diagnosis that my wall thickness was 2.8...right??

    well they were planning for surgery and my parents wanted me to get another echo thinking MAYBE something might just change even though every doc said there was no way.

    1.6 baby!!!!!!!!!!!!!

    thats right. my echo tuesday came back as 1.6. the docs are in disbelief so they are re-measuring the same images on monday.
    ~janelle*
    \"The heart swells at the magnificance\"

    1 timothy 4:12: Do not let others look down on you because you are young, but set an example for believers in speech, in life, in love, in faith, and in purity.

  • #2
    Re: You Won't Believe It!!!!!

    Hi Janelle,
    I have heard that some echocardiogram technicians & doctors use a different method/angle of measuring the septal wall. It may be important for each doctor that is looking at your echo to take the measurements from several spots along the septum wall. Find out if they have measured on the same spot as the septum can be bumpy & measure different at the top, bottom & middle. If your measurements have truly gotten smaller, maybe you & your parents should talk to your doctors & Dr. Barry Maron (I think you had visited with him a few months ago) about exercise induced HCM.

    I will keep you in my prayers today. Hope everything works out for you and your treatment plans.
    Blessings,
    Sharon

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    • #3
      Re: You Won't Believe It!!!!!

      I'm not very knowledgeable interpreting echos of the heart. However, I have to mention that measurements can be calculated incorrectly. When I was pregnant with my son, I was a "high risk" patient because of my age and also had the HCM. I had several echos when I was pregnant and the nurses and my doctor kept telling me that based on the echo measurements, I was going to have a BIG baby (my doctor based this on the echo measurements)! I was just about a week overdue and had another echo. I was told that my baby was going to weigh at least 10 lbs. and that I was to be induced. Well, I had him 2 days later and he weighed 6 lbs.14 oz....goes to show you that echos cannot be 100% accurate.
      \"It is not length of life, but depth of life.\"

      Ralph Waldo Emerson

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      • #4
        Re: You Won't Believe It!!!!!

        Cynthia the same thing happened to me. I had numerous ultrasounds during my 'high risk' pregnancy and was told he was going to be over 10lbs. I wasn't surprised because my first son was 9.5 lbs. Turns out my little guy was only 6lbs 4oz-thats a huge difference
        ....He is still tiny at 4yrs. My 12yr old(9.5lb baby) however is taller than me already-he's 5ft 6in.

        I have never had any inconsistancies in my echos(as far as I know) but I am sure the same mistakes can be made. Let us know the results of the echo.....
        Take care
        Pam
        It's not what you gather, but what you scatter that tells what kind of life you have lived.

        Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

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        • #5
          Re: You Won't Believe It!!!!!

          Janelle, It'w now Monday - What did the docs come up with today? Hope you are getting good news and you and your parents will also be calling the HCMA office if you haven't done that already. Please keep us posted, Linda

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          • #6
            Re: You Won't Believe It!!!!!

            My wife and I had two kids. My daughter was a large baby, and through the fifth grade she was among the tallest girls in the class. Then she stopped and is a petite five three. Our son on the other hand was a small baby weighing in at around five pounds. He’s now six foot and trying to get his weight down to 270.

            My daughter had twins who are now approaching 16 – and again the girl is rather petite while the boy is already taller then his dad, and is thin but approaching six foot. Janelle, my granddaughter is a cheerleader (a flyer), and she gets her echo’s annually.

            About the measurements - - sure, they vary a bit from reading to reading, but not that much. You need an attentive expert to really give you an echo of value. At least that’s my opinion.
            Burt

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            • #7
              Re: You Won't Believe It!!!!!

              forget this.
              2.5

              first it was 2.8
              they re-measured the same pics and said 2.3
              maron said 2.8
              this last one said 1.6
              went back and said 2.5

              how does the same echo show almost a whole cm of a difference?!?!?! THIS IS SO FRUSTRATING!!!!!
              ~janelle*
              \"The heart swells at the magnificance\"

              1 timothy 4:12: Do not let others look down on you because you are young, but set an example for believers in speech, in life, in love, in faith, and in purity.

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              • #8
                Re: You Won't Believe It!!!!!

                Sounds like you have a very bumpy septum and nobody is measuring the same place twice. If I were you I think I would write a letter to Dr. Maron, tell him all the different readings you’ve been given, and ask him if he would please take another careful reading and let you know where you really stand. Maybe he can explain it.
                Burt

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                • #9
                  Re: You Won't Believe It!!!!!

                  Janelle, This can be troubling but does occur. They had to do a transesophageal echo( TEE ) on me for more accurate readings. This is the one where you swallow the transducer. Even at the time of surgery the variation was different enough and on the boarder of acceptability that they did a live TEE when they opened my chest and decided at that time what to do ; a myectomy, a mitral valve replacement or both. They did the myectomy as a result of the TEE. I did not know until I woke up. My septum only varied from ? 15 to a 18 at the top near the mitral valve. . As my symptoms were very severe even at that measurement something had to be done. My gradient was about 70 at rest to well over 240 on stress. You can probably understand that echo's performed on me for years resulted in one non trained cardiologist missing a heart condition completely on me in spite of an extremely loud murmur. They called that a normal systolic ejection murmur. Numbers and readings can vary as much as the symptomatology can. Who would think that someone with such a small septal measurement would have been as sick as I was and even still not doing as well as I would like. As others have said there are many factors to consider. Stiffness of the ventricle is a major contributing factor as well. I know that there is a large difference in the 1.6 to the 2.8 but it could be like mine in that up near the mitral valve that is the reading; 1.6. Dr Maron pointed out to me that there were these variations at different areas down my septum. Often times the windows ( spaces between the ribs) obscur the accuracy or consistency of the readings. My windows were very small resulting in those various readings. I hope I have helped , hang in there it will all be fathomed out. Pam
                  Dx @ 47 with HOCM & HF:11/00
                  Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                  Lead failure,replaced 12/06.
                  SF lead recall:07,extracted leads and new device 2012
                  [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                  Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                  Genetic mutation 4/09, mother(d), brother, son, gene+
                  Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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                  • #10
                    Re: You Won't Believe It!!!!!

                    Most echos will vary by about .2cm - I think it is far more reasonable to see 2.5 on one echo and 2.7 or even 2.8 on the next. Hydration, angle and the tech have every thing to do with how getting the measurements.

                    Your post says a great deal about the problems we have even diagnosising HCM in many people. Reading echos is not simple business and a wrong reading could give very wrong information and often does.
                    I am glad we had the opportunity to go back and re-evaluate this.

                    Take care!
                    Lisa
                    Knowledge is power ... Stay informed!
                    YOU can make a difference - all you have to do is try!

                    Dx age 12 current age 46 and counting!
                    lost: 5 family members to HCM (SCD, Stroke, CHF)
                    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                    Therapy - ICD (implanted 97, 01, 04 and 11, medication
                    Currently not obstructed
                    Complications - unnecessary pacemaker and stroke (unrelated to each other)

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