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Echo shows negative HCM, cardiac Cath Positive

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  • Echo shows negative HCM, cardiac Cath Positive

    To make a long story short, I have a long history of HCM in my family. My mother, deceased, a brother, sister, me, my son, a niece and a nephew, deceased. Another sister, age 39, who has been checked with an echo for the past 5+ years and was told she was negative decided to have a stress test because of chest pains. The stress test showed something abnormal so they did a cardiac cath. The cardiac cath showed that she has hypertrohic cardiomyopathy. She was told there was a definite thickness and weakness, but no onstruction or gradient. The doctor is confused as to why this was not seen on an echo before. He is planning on doing another echo himself early next week. Now my other 3 siblings who have been told they were negative are very concerned if they need to have a cardiac cath to find out if they have the disease. Has anyone ever heard of this before? I was under the assumption that an echo was a sufficient way to diagnose HCM. Also, how common is it for the disease to show up this late in life? We don't know if it just now developed or if it has been missed all these times. She told me yesterday, that she has been having these chest pains for a few years, but just started getting worse recently. Please let me know your thoughts.

    PS: Lisa, I am still working on that autopsy on my nephew Derek. Please send me your fax number again and I will fax you as soon as I receive it.

  • #2
    Re: Echo shows negative HCM, cardiac Cath Positive

    Hi Kay,
    Back in 2000 , when I was finally diagnosed they were not sure and they were off and on the fence.

    I had had about 4 echo's an imibi stress, a thalium stress, a stress echo, and then finally a cardiac cath.
    When that was done 4 months had passed and after telling me from the beginning that I was at a very high risk of sudden death. After others jumped in with their opinions and conversed with my pcp of 18 years repeatedly hearing from him that I did not have HCM , only a "hyperdynamic heart", they were sure. It was HCM and they implanted me very shotly after that. I had never seen so much scratching of the heads. They told me they were sorry it had taken so many uncertainties to finally concur with the initial diagnosis . It wasn't that my septum was so thick but that the space in the ventricle was so small and I went into arrythmia patterns quite easily.

    So these things do happen unfortunately. Hope the picture clears for the rest of your family and safely.
    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

    Comment


    • #3
      Re: Echo shows negative HCM, cardiac Cath Positive

      Originally posted by Kay Julius
      To make a long story short, I have a long history of HCM in my family. My mother, deceased, a brother, sister, me, my son, a niece and a nephew, deceased.
      Hi Kay,
      When exactly did you die? Was it HCM related or were you all in some horrific traffic accident, or what?

      I guess we all know what you meant to write was that you all have HCM, but you know how I love to poke fun. Hope you don’t mind. By the way the fax number for the HCMA is - 973-983-7870.

      And Pam, you think you had trouble getting a solid diagnoses, let me again tell my story. Starting at the age of four, and fairly frequently thereafter I was told I had an athletic heart, and a murmur – but I was supposed to outgrow it. (It was the thirties and there was still very little information known about a number of heart maladies.)
      I was asymptomatic at the time, but symptoms began to appear over time. Like most, it was put down to being out of condition, etc.

      When I got out of the army I lived in the Bronx and parked in a garage four blocks from the apartment. At night going home I often tried the army rapid pace of alternating between walking fifty steps and jogging fifty steps – and I couldn’t do it. Over the years I slowly lost more ground, as I was more affected, but still never suspected it was anything other then my poor conditioning.

      Forty to fifty years from my first being told I had an athletic heart I developed a coronary blockage, and in May 1985 I had my first angioplasty. After that I went to Cardiac Rehab with people who had open heart surgery and were running up mountains on the treadmills. The best I could do was four degrees @ two mph, or visa versa. I fought with them when I was discharged because I wanted to run up mountains too, but was told above where I was my heart showed ‘changes’ and that was the best I could hope for. Somewhere around this time, or possibly some years later, I was diagnosed as hypertensive, and was brought under medicinal control.

      Other maladies added to my diagnoses and things became more and more difficult to attribute to any particular cause, but it wasn’t until December 30, 2003 that I was finally diagnosed with HOCM (my second hospitalization in that month with those symptoms.) I was 71 at that time.

      Now I am being seen by two different cardiologists who have differing views on what I actually have. One says HOCM now under excellent control, and the other says Hypertensive CM. I tend to agree with the former diagnosis based on my diagnoses from childhood on, but my primary concern now is finding out if there are any differences in the management of these two quite similar conditions. I told the HOCM doctor about the other diagnosis, and he said with the control I now enjoy it would be almost impossible to tell which diagnosis is which. If the treatment is the same, frankly I don’t much care which it is, but I would like to be able to hang a definite title on it, and to know if the kids need periodic echo’s.
      Burt

      Comment


      • #4
        Re: Echo shows negative HCM, cardiac Cath Positive

        Kay,

        It is not at all unusual for people to be diagnosed much later in life than your sister. Although I had symptoms for many years, had a strong family history on my mother's side of sudden cardiac death, and had a number of echos, ekg's, and stress tests, even after it was known that I had some sort of heart problem, no one diagnosed me as having HCM. Finally last year, as I reported here some months ago, I accidentally diagnosed myself by reading this board after forgetting what the cardiologist had said was wrong. I was 55 at that time. So, it is not at all unusual for echo's to be missed - especially if the septal thickening is not very large. In fact, it was only after doing an EP exam, which involves a catherization, that Dr. Gilligan was finally willing to say definitely that I had HCM although he also did an echo about the same time. I am not sure how much the catherization had to do with the diagnosis, but he did insist on doing it, and said beforehand that he was not sure that I had HCM. Afterwards he assured me that I did.

        I think your biggest question here is what your siblings who have been told they are negative should do. One thing I would suggest is that, if they live near your sister who has just been diagnosed, have them see the same doctor as diagnosed your sister. He is already intrigued by your sister's case, so he will not be likely to overlook the problem again so soon in the same family. Just a thought, but of course it won't work so well if they live far away.

        I hope your sister finds that she does much better from now on and that your other siblings do not have this.

        Rhoda

        Comment


        • #5
          Re: Echo shows negative HCM, cardiac Cath Positive

          Kay -

          I'm 50 - just diagnosed with HCM - no confirmed family history. I've been battling Atrial Fibrilation for 10 years and finally this year went into heart failure. Drs. have been confused all along and could not offer a reason for the A-Fib.

          I have no medical training, BUT I'm under the impression that the heart cath will only rule out Coronary Artery Disease. The cath can also give acurate pressure readings within the heart chambers. I don't know how a DR. can determine wall thickening with just the heart cath.
          • 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


          • #6
            Re: Echo shows negative HCM, cardiac Cath Positive

            Well, the first thing I need to say is that anyone at risk should be getting an echo every 5 years after age 30 since it can show up later.

            As for the cath being needed to diagnose, this is highly unusual. If your siblings aren't symptomatic, then it is a toss up if they should get a cath. If they do have symptoms, though, I would get a cath just to be safe.

            I think the idea of you all seeing the doctor is an excellent one. At the very least you should be getting second opinions, ideally with a specialist.

            take care,

            S

            Comment


            • #7
              Re: Echo shows negative HCM, cardiac Cath Positive

              Thank you all for your comments. No, Burt I have not died. What I meant to say is my nephew has passed, not all of us.

              My brother and I go to the same doctor who we are very satisfied with. I have been to the Mayo for second opinions and am extremely satisfied. Here's my next question. The doctor who found my sister's condition is not the same doctor that my brother and I go to. She's trying to decide whether to switch to the same doctor we go to. On one hand, I think it's best because she knows our family history. On the other hand, my sister thinks maybe going to a different doctor will give a second view on our family situation. What does everyone here think?

              Comment


              • #8
                Re: Echo shows negative HCM, cardiac Cath Positive

                Hi Kay,
                I’m really glad to hear you’re still with us. My goodness, I thought I was having an ESP moment. I should have known though – If you had passed, why would you still be going to a doctor?

                Seriously though, I do believe the drugs really work for me. I had a stress test last Wednesday on a bike. (I haven’t been able to ride a bike in about fifteen years, when I couldn’t make it back home.) My last physical stress test was back in 1985 when I went flying off the back of a treadmill. Anyhow, I lasted nine minutes of a test that normally ends after twelve. I didn’t start to get into trouble until the ninth minute, and my gradient toped out at only fifty-five. I’m still in shock. That was fantastic. I didn’t even have any complaints from my arthritis.

                Following the test I spent six hours driving home, and Thursday I had only very minor after-effects. I thought I was cured – until the week-end when I became quite symptomatic again. Did anybody else have such a fantastic high? I mean, I’ve had good days, - but this was from a different life time. (And does anybody know how I can do it again?)
                Burt

                Comment


                • #9
                  Re: Echo shows negative HCM, cardiac Cath Positive

                  Kay , I think from personal experience, that it is always best with these things , if at all possible to stick with the same doctors that have had experience in diagnosing and treating HCM . As family members may differ from one another in their degree of illness or not express the illness, it is always of optimal benefit to look at the shared history.
                  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

                  Comment


                  • #10
                    Re: Echo shows negative HCM, cardiac Cath Positive

                    Thanks Pam, That's what I thought. But it never hurts to get a second opinion.

                    Comment


                    • #11
                      Re: Echo shows negative HCM, cardiac Cath Positive

                      Kay - give me a call - I have some ideas on what is going on here - but it is too long to type.

                      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)

                      Comment

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