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Stiffness of the left ventricle.

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Pam Alexson single mother of 3 wonderful young adults;a special ed teacher, an RN and a senior accountant. Find out more about Pam Alexson
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  • Stiffness of the left ventricle.

    I have a question that comes into my head from time to time. Are there articles written anywhere specifically related to the effects of myectomy : removal of obstruction/ gradient and its impact or resulting changes to the stiffened left ventricle. Positive or negative. We have read about the implications of obstruction contributing to a worsening of CHF in some individual cases. So, in particular I am interested in data supporting improved status, or worsening status, in specifically the left ventricle.

    I have been looking off and on but cannot seem to find anything.

    Thanks,

    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

  • #2
    Me too i would like to know also, as after my myectomy my right ventricle became stiff also and they say both ventricles are very stiff and my CHF has also gotten worse it is moderate and it was mild thanks

    Shirley
    Diagnosed 2003
    Myectomy 2-23-2004
    Husband: Ken
    Son: John diagnosed 2004
    Daughter: Janet (free of HCM)

    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

    Comment


    • #3
      Hi Pam and Shirley,

      From what I can gather from the literature and from my surgeon, successful myectomies 'often' relieve obstruction and in the process reduce stress on the ventricular wall. This can apparently result in remodelling and a reduction in both ventricular wall thickness and stiffness. I had a discussion about this very issue with my surgeon two weeks ago. Of course, as Shirley can tesitify, this is not always the case and it should be remembered that obstruction is only part of the story: wall stiffness and the inability of the ventricle to relax may continue even after a myectomy has been performed. This is the problem faced by people who do not have the obstructive form of the disease and for whom surgery is not an option.

      There is a good article in the Journal of the American College of Cardiologists, Vol. 44. No. 10. 2004 by Maron et al. titled 'The Case for HCM Surgery'. It is fairly easy to read in comparison with some of the other articles you might come across. If you don't have access to medical journals, I can email you a pdf copy of this via a private mail.

      Anyway, the current consensus is that the myectomy operation has excellent results if performed at an "experienced centre". Of course, this 'experienced centre' definition somewhat baffles me. My surgeon here in Melbourne Australia has done 25 myectomies - almost all with excellent results. But his hospital probably wouldn't qualify as an "experienced centre' by the Mayo or Cleveland Clinic's standards. But its the only option I have and I'm going with it (in less than 4 weeks).

      Hope you are both well.

      Paul
      Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

      Comment


      • #4
        I have to look into that specific question Pam - I have been thinking but none have come to mind. I will check for you ASAP.

        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


        • #5
          Thank you Paul for the title of the article , I have read it . I hope to see more articles in the near future. I quess my querry has a lot to do with finding out just where this all stands for me. I did have a stress mibi test scheduled to be done 2-15 and cancelled it due to ongoing diverticulitis issues and generally feeling very poor following my daughters recent wedding on the 12th and the test was to be done at my EP's hospital which is not connected to my HCM specialist.

          I am seeing Dr. Maron on 3-4 and plan to ask which test would best evaluate this for me. I have had 2 prior stress mibi tests in the past that showed very stiff left ventricle and areas of apex and lateral proximities that were not being fully perfused ( equated to small vessel disease in the thickened area). It appears that many of my symptoms that are ongoing are probably more related to the stiffened left ventricle( diastolic dysfunction) then they were related to the prior obstruction. This was the very original premise looked at when discussion came up about myectomy for me. It was conjectured that I may not experience full benefit from a myectomy.

          It is interesting to now understand so much more about what I read in my records as compared to before I was educated by this site and all the information. My concerns are and have continued to be as I have passed that one year mark post myectomy last Otober that I would have liked to be much better then I am and that I have slipped a bit. I hang onto hope that it does not get even worse and that just maybe my heart is remoddelling to improve itself and not cause further harm.

          Time will tell and it seems a little testing is in order soon.

          Thanks again.

          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


          • #6
            Let me know what Dr. Maron says to you because his dad said he had never experienced someone like me before, because all i had wrong before the surgery with my right ventricle was that i had tricuspid regurgitation and it was mild, i hope your test turn out good or you at least find out why you are not any better then you are

            Shirley
            Diagnosed 2003
            Myectomy 2-23-2004
            Husband: Ken
            Son: John diagnosed 2004
            Daughter: Janet (free of HCM)

            Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

            Comment


            • #7
              Hi Pam and everyone,

              I wondered what a Stress MIBI test was so I did an internet search and I found this:


              During the first part of the study a small quantity of the radioactive tracer MIBI will be administered by vein. Approximately one hour after the injection, you will lie on your back with your arms over your head for approximately 25 minutes. A camera will be close to your chest and will rotate around you, taking pictures of your heart.
              I could not lay flat and have my arms over my head for 25 minutes. While lying down, I can maybe keep one arm over my head for about a minute or so, then the SOB starts.

              -- Also I wonder how the doctors can determine if the left ventricle or right ventricle is stiff. How do they know?

              Thank you

              Hugs,
              Eileen
              49 yrs. old
              Diagnosed at 31.
              Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
              First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
              Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
              Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
              My brother passed away suddenly at 34 yrs old from HCM.
              2 teenage children, ages 17 and 15.

              Comment


              • #8
                Eileen

                They found mine during a Heart Cath

                Shirley
                Diagnosed 2003
                Myectomy 2-23-2004
                Husband: Ken
                Son: John diagnosed 2004
                Daughter: Janet (free of HCM)

                Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                Comment


                • #9
                  Hi Shirley,

                  It will be the young Dr. Maron who I will see in Boston. My records also state that I had mild tricuspid regurgitation as well as the usual mitral regurgitatin that presents with large gradient. We will see what the outcome is.



                  Eileen,

                  It is very, very difficult and both times I was trembling with the shoulder pain. I had the second at Brigham and Womens and told them outright how horrible it is for some to lie still on a skinny plank with no support for the shoulders for a long period of time. I suggested a cross beam to at least stretch the arms out on and they told me they consequently implemented it after discussing it at committee. The killer is that the same test is repeated four hours later or the next day. The first starts with a treadmill and then the injection of the radioactive isotope( Thallium) or a substance called myoview. The second part is the injection and a repeat of the pictures for 25-30 minutes. Each component takes about 1 1/2 hours. This test is predominantly done to assess coronary artery disease. The chemical is taken up by the muscle in all areas that are getting adequate circulation and perfused with oxygen. The results allow them to see if there are blockages. In the case of an HCM heart they are able to see if there are such areas of low or negative perfusion. The premise comes from the fact that a thickened heart has had to grow more vessels to feed the thickened heart . Called collateral circulation. These newer little vessels were never intended to do what the older, wider, more seasoned vessels do well. More often then not they are not able to keep up with the damand of the thickened areas need for more O2. Hence the term : small vessel disease and chest pain . With some individuals, areas of the heart that are not properly fed will show up in the scan of pictures as the dye will not enter these areas very well. Seeing these findings in a coronary artery disease individual would lead the investigator to speculate that there are dead areas on the individuals heart, maybe due to a past myocardial infarction or there could be coronary blockages. This would then most likely be followed by having the individual have a cardiac catheterization to rule this out. Does this make sense?

                  As some of us HCMers have had caths and the coronary artery disease usually is not the problem, deductions can be made about why , where and what is causing the chest pain and the area of stiffness can be visualized .

                  Hope this has helped.

                  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
                    On a side note on this test. It sometime is not that reliable on giving good numbers. I had one done last year and in an HCM heart it tricks the test. It thought that my Ejection Fraction was at 35% down from 60% six months earlier. This sent all of my cardiologist into a mad frenzy and an emergency trip up to Boston to find out it was a mistake. Want to talk about stress whoa!

                    Thought I'd add my two cents!

                    Mary S.

                    Comment

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