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Criteria for septal myectomy?

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  • Criteria for septal myectomy?

    Hello. I was diagnosed with HOCM in April 2006. I did go to the Mayo Clinic in AZ last year for evaluation. My echo showed septal thickness 19 to 20 mm with an amyl nitrate provoked gradient of 130 mm/hg - 10mm resting. I also had a cardiac MRI that did show fibrosis. I was told to take Toprol 25mg. I can't tolerate this medication. I feel like the walking dead - always cold and no energy at all. I guess I'm not severe enough to be considered this operation.

    My question this: What is the criteria for a myectomy. I really believe that this procedure will relieve my constant symptoms of back pain, lethargy and low exercise tolerance. I have swam laps (1300 yards) around five days a week for the past 11 years and have noticed a significant drop in my endurance since diagnosed and more pronounced symptoms over the past year.

    Thanks for any info you can provide.
    Rick W.

    Diagnosed with HOCM April of 2006
    Myectomy September 11,2008 Cleveland Clinic
    Dual chamber ICD implanted 12/23/09

  • #2
    Re: Criteria for septal myectomy?

    You may be severe enough to have a myectomy. The gradient combined with severe symptoms will probably qualify you, but I'm not a doctor and can't tell you for sure what a specialist would say. I think it's probably time you saw a specialist again. There may be other medications you can try that will work without making you feel like a zombie. Call the HCMA office for more details on specialist who would be a good match for you.
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      Re: Criteria for septal myectomy?

      http://circ.ahajournals.org/cgi/cont...ll/114/21/2232

      { Nonetheless, these data indicate that a significant proportion of HCM patients considered nonobstructive at rest will develop outflow obstruction with exercise. Whether our reported prevalence is lower (or higher) than in the general HCM population does not lessen the clear implication that the evaluation of obstruction with exercise may have important clinical implications.}


      Conclusions

      {Mechanical obstruction to LV outflow, measured at rest and provoked with physiological exercise, was present in the majority of HCM patients in this hospital-based cohort. These observations represent an alternative perspective on the clinical spectrum of HCM, which has previously been regarded as a predominantly nonobstructive disease, and have clinical implications for the evaluation and management of symptomatic patients without basal obstruction. Indeed, only exercise echocardiography permitted these novel considerations and the identification of an important subset of HCM patients, in whom heart failure symptoms are largely explained by latent exercise-induced obstruction. Many of these patients may be (or become) candidates for major interventions such as surgical septal myectomy or alternatively alcohol septal ablation.}

      AND...

      http://content.onlinejacc.org/cgi/co...6/3/470?ck=nck

      {Surgery. Criteria for surgical intervention at the Mayo Clinic were LV outflow obstruction 50 mm Hg at rest or with provocative maneuvers attributable to systolic anterior motion of the mitral valve, associated with New York Heart Association (NYHA) functional classes III to IV limitation (or repetitive and disabling effort-related syncope) despite maximum medical management (6,7,24). The septal myectomy operation in the present cohort was predominantly that described by Morrow et al. (8,10,11). This procedure, performed through an aortotomy, creates a rectangular trough via two parallel longitudinal incisions in the basal septum. Incisions are connected proximally below the aortic valve and extended distally just beyond the level of mitral-septal contact and subaortic obstruction, or in some patients to the base of the papillary muscles (i.e., extended myectomy).}


      Earlier literature relied on resting gradients as a large determining factor for surgical intervention. It has been shown that those w/ provoked gradients are very much at equal if not higher risks of many detrimental physiological changes and outcomes. Advanced testing and evaluation is an absolute must by someone WELL versed in HCM.
      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


      • #4
        Re: Criteria for septal myectomy?

        I'll second Reenie's and Pam's comments. If your symptoms have become that problematic, then an HCM specialist may well recommend a myectomy; there's no rule that says you can/cannot have a myectomy above/below a particular point. Obviously your pressure gradient while exercising is pretty significant.

        So I'd recommend seeing an HCM specialist -- either at Mayo or one of the other centers.

        Gordon
        Myectomy on Feb. 5, 2007.

        Comment


        • #5
          Re: Criteria for septal myectomy?

          Hello,

          I had no gradient at rest. With exercise, I had a gradient of 100. septal thickness was 12mm on echo and 16 mm with MRI. No fibrosis on MRI.

          What they found was an abnormal orientation of the papillary muscles of the mitral valve. The net result of this was that with more demands on the heart, the valve structure itself would get in the way of blood flow, causing outflow obstruction and symptoms.

          I am now 2 weeks postop papillary muscle re-orientation, and septal myectomy. Dr. Smedira re-attached a portion of the papillary muscle to a different spot in the ventricle so the valve now lines up properly; the heart murmur is gone, and the obstruction is gone. He shaved off a small amount of septal tissue also, but indicated to me the main component of obstruction was from the valve itself.

          Since surgery, I have had no more chest pain (except incisional pain which is different), and my constant air hunger, and the pattern of exhaustion is gone; digestive disturbances no longer there.

          Dr. Smedira and Dr. Lever (Cleveland Clinic) told me that they have started seeing more cases like this lately, with obstructive symptoms caused primarily by valve abnormality, though there may also be a contribution from septal thickness.

          This may have nothing to do with your case, and you would need to have an HCM specialist go over things with you. Dr. Lever did tell me there are not many in the cardiology community who are aware of this kind of problem. My first 4 cardiologists basically gave me a clean bill of health, saying the heart, including the valves, were basically normal, and not responsible for my symptoms. It was not until I saw an HCM specialist that I this abnormality was diagnosed.

          Dr. Smedira recently published a case report on this:
          2008;135:223-224 J Thorac Cardiovasc Surg
          Roosevelt Bryant, III and Nicholas G. Smedira obstruction
          Papillary muscle realignment for symptomatic left ventricular outflow tract obstruction

          Best wishes,

          Theo

          Comment


          • #6
            Re: Criteria for septal myectomy?

            Theo,

            How was your mitral valve problem discovered? It sounds like they only identified the problem when you underwent surgery. Is this correct?

            Thanks again for your insights. I hope you enjoy a full and speedy recovery.

            -- Rick
            Rick W.

            Diagnosed with HOCM April of 2006
            Myectomy September 11,2008 Cleveland Clinic
            Dual chamber ICD implanted 12/23/09

            Comment


            • #7
              Re: Criteria for septal myectomy?

              I had a cardiac MRI at the medical center near where I live. It was interpreted to show mild septal thickening, some systolic anterior motion of the mitral valve with mitral regurgitation, but an otherwise normal valve.

              Dr. Lever and the radiologist at the Cleveland Clinic looked at the same MRI and found the mitral abnormality. I don't know more detail than that about the MRI, just what Dr. Lever told me. Based on the review of the previous MRI, he knew something was not right; it had not been picked up by the original interpretation at the other medical center. Dr. Lever at first had planned to repeat the MRI, but after review of the MRI that I brought with me, there was enough information that he did not need to do another one.

              The findings were confirmed with the stress echoes that were repeated by Dr. Lever during my workup at CC. He put me through the usual treadmill stress echo, resting echo with amyl nitrate, and then brought me back for one more echo which I had not had before which was done while I was upright on an exercise bicycle. This echo was taken while they pushed me to maximal exercise on the bike. With those images along with the MRI, he was satisfied that the valve was causing at least a good portion of the outflow obstruction.

              The surgery was planned to repair or replace the valve, with an option to remove septal tissue if it looked like that would help. They were able to accomplish a good repair of the valve, without placing an artificial valve, and septal tissue was also removed. Dr. Smedira described to me the abnormal valve configuration that he could see at the time of surgery, and showed me with a diagram how it could obstruct blood flow. He made it sound like the procedure to re-orient the valve was mechanically pretty simple and straightforward.

              Theo

              Comment


              • #8
                Re: Criteria for septal myectomy?

                When we went to the Mayo Clinic, saw Dr. Ommen, we also found that the shape of your septum plays a role in weather or not a myectomy can be completed. My husband has thickening in an unusual pattern and Dr. Ommen said a myectomy would not be possible for him.
                Amy
                Husband (50) diagnosis HCM 6-07, CHF, A fib 12-07, ablations x 2
                Medication controlled most of the time.
                Transplant is in the near future.
                Kids 24 and 20, both normal echos.

                Mayo Clinic-Rochester
                University of Nebraska Medical Center-Omaha NE

                Comment


                • #9
                  Re: Criteria for septal myectomy?

                  I have been reading the replys to having a septal surgery. I'm having severe problems with breathing and fatigue. I went from being pretty active to about 25% of normal. It started in January with Bronchiatis including a round of steroids with anitibiotics. Then within a wk of finsihing that I got another bug and it was followed with the same, bronch. predn., antiobiotics.

                  Here it is March 10th and I'm still not welll. Still only at 25% and wondering if maybe this has to to do with my HOCM. I'm on the west coast and I think it's time I get reevaluated. I've only been diagnosed with resting. My current doc stopped the beginning of the process for a stress echo and has never let me finish it.

                  I did wind up in the hospital in Febr. for what felt like a heart attack. The enzymes showed up in my blood and they transferred my to the cardiac hospital here for more testing. Testing showed no blockages which is great. However nothing was said about EF etc. Oonce again, I think maybe it's time to take a closer look at my HOCM.

                  Am I over reacting or just reaching for something that maybe will help me breath. I've had asthma my whole life and have never been continuously sick like I am now. Something just doesn't feel right.

                  Well thanks for letting me vent my thoughts. Just writing it out helps me answer my own question.

                  Does anyone know if there is now a HCM Specialist on the west coast?

                  Thanks

                  Diana

                  Comment


                  • #10
                    Re: Criteria for septal myectomy?

                    I can tell you that we now have 2 centers in CA! Stanford and UCLA. Call the office for more contact information or check the links page.
                    Best wishes,
                    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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