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Pacing to relieve obstruction?


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kathyn2 Find out more about kathyn2
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  • Pacing to relieve obstruction?

    I have a question I hope someone can answer or several someones. I have hocm. 2 years ago when I got my ICD for ventricular tach (and now A fib) they set a pacer in some fashion that is suppose to help relieve obstruction. I never knew if it did much or not as I still have/had plenty of symptoms.

    Well the past few months I have shown signs of congestive heart failure perhaps or fluid on the heart. I carry alot of fluid in my legs and feet at times too and this is all compounded by severe kidney failure for which I am not on dialysis yet. It is very difficult for them to treat me with lasix because of the kidney failure. For one thing it doesn't work very well to get rid of the fluid and it worsens my kidney function severely so I do not take it much and when I do it is a small dose.

    To get to the point, I read on here a few years ago and I think it was from Lisa S. that some experts thought that pacing to relieve obstruction could cause congestive heart failure. I saw my EP last week and I asked him to shut the pacer off to see if the pacer could be causing congestive heart failure and that I had read about it somewhere. He actually thinks the pacers help hocm and he said it wasn't my condition that pacers may cause heart failure in but he did agree to shut it off to see how I felt and and it is off now.

    Well I feel worse without the pacing. What it does is pace the bottom portion of your heart to help relieve obstruction and I definitely feel my heart working alot harder now and more shortness of breath.

    So can anyone tell me if pacing causes CHF??? How come there is no new news or treatments for HOCM or HCM. Even tho my doctors are not experts (there are none in my area) they are fairly well up on HCM. I am thinking of calling today to see if I can get in this week and have it turned back on. And btw, even tho the pacing helps some, I have way too many symptoms!

  • #2
    Re: Pacing to relieve obstruction?

    I have an ICD set to pace like you mention. My cardiologist is always amazed when he hears how it got rid of my heart murmur. This is the first I ever heard of it causing CHF, but I have heard that there is a lot of disagreement among cardiologists on whether it helps HCM or not. It's hard to say for sure, but I think I do feel better with it. My heartbeat used to bother me a lot because it got irregular and would pound in my chest, especially when I slept, but now that doesn't seem to happen as much.
    First major HCM symptoms at age 50
    ICD 6/06


    • #3
      Re: Pacing to relieve obstruction?

      This is the part of study that they are talking about when the question of pacing causing CHF comes up -
      Long term pacing appears to be problematic if there is no heart block -and yes there have been many cases of heart failure post pacing in these patients. Pacing to relieve obstruction is not the best way to treat the heart with obstruction - many studies have proven that - however... and this is a big however - some patients may fall into an area where it may be worth a try (example - you have a right bundle branch block - myectomy will cause a left bundle branch block - leaving you with a pacer anyway - why not try the pacing first to buy some time until surgery). Interestingly pacing for obstruciton in women over 65 seemed beneficial - that was the only group that had all around improvements.
      The days of pacing for obstruction are long in our past for the most part and for good reasons.

      Comparison of perception of health status by physicians, nurses, and patients in the Dual-chamber And VVI Implantable Defibrillator (DAVID) trial*1
      The American Journal of Cardiology, Volume 93, Issue 1, 1 January 2004, Pages 120-121
      Andrew E. Epstein MD, Alison Swarens RN, BSN, Anne Skadsen RN, BSN, Sheryl W. Murphy RN, MSN, Kenneth A. Ellenbogen MD ...

      Abstract: Previous studies have shown a poor correlation between health and quality-of-life assessments by patients, physicians, and nurses. Some have argued that patients are treated impersonally in clinical trials. Because one would expect that patient care would be compromised if this were the case, we used the Dual-chamber And VVI Implantable Defibrillator (DAVID) clinical trial setting to see if these assertions truly reflect the assessments of quality of life by health care professionals. Physicians, nurses, and patients in the DAVID trial had concordant assessments of the patients' perception of health status. The findings dispel assertions that patient concerns are not reliably assessed.
      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)


      • #4
        Re: Pacing to relieve obstruction?

        Well I guess that answers why I got CHF back when I was paced for a year and I'm still paced 45% of the time now, I was never told it would cause heart failure or I would not have let them pace me, but like I had a choice, I was never asked, it was just done. Kathy I hope you feel better soon.

        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


        • #5
          Re: Pacing to relieve obstruction?

          Chances are Shirley.. given your family history and all the CHF was caused by the stiffness of your heart and not the pacing so much.. I think you have had a stiff heart right along as you portray and this dysfunctional part does cause heart failure.

          I had the heart failure and do and did the pacing also... and the heart failure is from HCM. The pacing can however make it worse and cause it in some, as the literature points out.. I think your boat and mine and others were sunk from the get go.
          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


          • #6
            Re: Pacing to relieve obstruction?

            It's not just "pacing" that will potentially cause heart failure. It's excessive ventricular pacing on patients with normal atrioventricular conduction (no AV block).

            Thankfully, most modern 2-lead ICDs have some sort of built-in algorithm to prevent unnecessary ventricular pacing. Medtronic's is called MVP (Managed Ventricular Pacing), Boston Scientific (Guidant) calls theirs AV Search Hysteresis, St. Jude's calls theirs Ventricular Intrinsic Preference (VIP) and Biotronik and ELA (Sorin) have their versions too.

            So, if you have to be paced (and you have normal conduction), you want the pacing to be atrial.
            HCM patient on a quest for access to the data collected by my implantable electronic cardiac defibrillator. Diagnosed with HCM with obstruction in October 2006, at age 40. Estimated LVOT gradient of 10-23 mmHg at rest, 147 mmHg with exercise. Passionate about connected health. Join me on my quest.

            On TEDx: http://bit.ly/ICDdata
            On Twitter: http://twitter.com/hugooc