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Annual Meeting: NEW STUFF!!! (a quick review)


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  • Annual Meeting: NEW STUFF!!! (a quick review)

    I apologize for taking so long with this.
    A quick glimpse at my state of mind before the meeting.
    I wanted my wife Sandy to attend. She has been very concerned for the children and I felt that she would get a lot out of it. However, I saw the list of speakers and the lineup looked almost identical to the 04 meeting which I had attended. So, one of the reasons I volunteered to take the pictures was I thought I would be bored.
    However, each time I started paying attention there was something new and amazing.
    At some point, Lisa will have available DVD’s from the meeting and she may also have the PowerPoint presentations. If you did not attend I would urge you to get a hold of this material.
    This meeting was astounding in how much change can happen in just one year. I remember in 04 asking Dr. Lever a question and as usual for him he gave me a very quick, direct, and honest answer. But 366 days later during his presentation the information was exactly the opposite from what he told me.
    Lets start with one of the most well know statistics in HCM. We have always quoted that 25% of HCM patients will develop obstruction. What Dr. Lever presented was a figure of 70% (“will develop an obstruction of some kind”).
    What most likely is the cause of this great leap in percentage is the new diagnosis tool that was presented by my doctor, Marty Maron. That would be the Cardiac MRI. A few extra pieces of hardware along with some new software and the Cardiac MRI looks to be the biggest development in HCM since the Alcohol Ablation, only with a much brighter future.
    This MRI gives the cardiologist an extremely better view of the heart, along with obstructions and muscle damage. They can combine the MRI with the introduction of an agent that will clearly show any place within the heart where there are dead cells. The combination of the placement of these dead cells along with their size may be a much more accurate diagnosis tool then anything that has existed.
    Marty also present a very troubling statistic. We have always discussed the many factors for the possibility of Sudden Death, and how if you have two or more of these factors you would be a candidate for an ICD. He presented a slide that showed 50% of the Sudden deaths had one or zero of these factors. He hopes that the Cardiac MRI will end up being a better tool in the decision on who gets an ICD.
    It was not a good meeting for the Alcohol Ablation.
    The question I had asked Dr. Lever in 04 concerned the need for ICD’s for post ablation patients. At the time he said there was no data to show that need. But they must have collected some, because in his presentation he quoted a pretty high statistic (I think it was greater then 20%, but I’m not sure…get the DVD or PowerPoint when it comes out).
    Before the meeting, there was some banter on these boards about the percentage of post ablation patients needing pace makers. Someone even quoted below 10%. Well, Dr. Lever discussed 3 separate studies and all the numbers were in the teens for pace makers. Now, I’m sure an expert like Dr. Spencer can reduce that number by a few percentage points, but most ablation patients are not having Dr. Spencer do the work. Most are being treated by EP doctors who at most have a few dozen ablations under their belts.
    Dr. Lever also presented some strong statistical data that showed that the size of the patient’s obstruction is a major consideration in how much success the ablation will have. If the obstruction is too large, you should not have this procedure.

    One thing I did not know about the procedure before this meeting, was that the effect from the alcohol is both immediate and long term. In other words, the alcohol continues to damage the cells of the septum for months to come.
    Just my opinion, but after attending two of these meetings, reading these boards for almost 2 years, reading a couple of papers for my own decision, I have concluded that the Ablation is just not precise enough for the majority of HCM patients. I know that there is a contingent on these boards who want the Ablation encouraged in order for the procedure to get better. But you are dripping a liquid into a beating heart in order to cause muscle damage that will not complete for many months. How much more precise can this type of procedure ever get?
    There are patients who are perfect candidates for the Ablation. Thank Sigwart that this is an option for them. But the future for treating obstruction is to find an easier, more accurate way to remove it. That may come from new imaging devices and lasers, but I doubt it will come from a catheter tube.
    I will get off my soap box now.
    Another plus in the Myectomy’s favor was presented by both Dr. Lever and Dearani. I don’t believe this is new information but it was the first time that I heard it put into this context. There presently doesn’t seem to be any better way of evaluating the Mitral valve then the visual you get looking directly at the valve, through the incision in the aorta, in the midst of the Myectomy. Obviously, the valve can be damaged by the direct contact to the enlarged septum. The Myectomy gives the surgeon the opportunity to resolve any Mitral Valve issues at the same time. The Echocardiogram doesn’t seem to be a perfect way to identify Mitral Valve problems. Should the Echo miss this and you get an Ablation, you are probably delaying the eventual need to have open heart. Perhaps the Cardiac MRI will do better in this type of situation. I can see a day in the near future where the decision on whether you go Ablation or Myectomy will have to be preceded by a Cardiac MRI.
    Now I realize that this is a lot of new information and some of you may think that I’ve gotten everything wrong. Truthfully, I spent most of the meeting, shaking my head, disbelieving what I had just heard. Hopefully, Lisa or some of the moderators who were there will respond and back me up or clarify.
    And I’m not even writing about the genetics stuff (mainly because I missed most of Dr. Ho’s presentation).
    We are very fortunate that we have a group of Doctors who are dedicated and diligent about pursuing treatments for our condition, along with a president who nags and encourages them.
    This was a very important meeting. If you couldn’t attend, please get your hands on anything pertaining to it.

  • #2
    Nice notes Felix... thank you!

    Now what's the deal with sudden death risk for post-myectomy patients? Does it drop or not and if possible please cite the study that provides these data. This issue has not yet been addressed on the board.

    Thanks bud,

    "Some days you're the dog... some days you're the hydrant."


    • #3
      Jeez Jim, don't you even look at my lovely pictures???????


      This is a picture of Dr. Deranni presenting THE slide about sudden death post myectomy, which shows a statistical dead heat between post Myectomy patients and the general population.
      Dr. Lever presented the same slide, and Barry Maron had the same slide on his laptop but did not use it.
      Jim, it appears that you're going to live. Now go out and do something worthwhile, like cure AIDS or make a low fat, low carb pizza that tastes good.


      • #4

        Originally posted by felixdacat
        This is a picture of Dr. Deranni presenting THE slide about sudden death post myectomy, which shows a statistical dead heat between post Myectomy patients and the general population.
        No offense Felix, but that slide has nothing to do with sudden death. Is there perhaps another slide you meant to show?


        "Some days you're the dog... some days you're the hydrant."


        • #5
          Originally posted by felixdacat
          Jim, it appears that you're going to live. Now go out and do something worthwhile, like cure AIDS or make a low fat, low carb pizza that tastes good.
          Yes, dad... and thank you for the free medical evaluation.

          "Some days you're the dog... some days you're the hydrant."


          • #6
            Wow Felix,
            Your information was great! I appreciate the great presentation, opinions, great comparisons over the years and dissertation on the differences of Myectomy vs. Alcohol Ablation. Yes, I looked at your pictures and you did a fabulous job there too. Plus, your wife is lovely and I know she is proud of your work, too.

            Love and Blessings,


            • #7
              I agree that everyone should get the DVD when it becomes available. The meeting was much more then I expected. What an amazing day.

              Lets start with one of the most well know statistics in HCM. We have always quoted that 25% of HCM patients will develop obstruction. What Dr. Lever presented was a figure of 70% (“will develop an obstruction of some kind”).
              I think the key words are “obstruction of some kind”. That’s not to say that 70% of HCM patients will be myectomy candidates. Though the number of myectomys being done at both CCF & Mayo has greatly increased over the last year. Last July Lisa had told me that in the previous year the Mayo had done less then 50 myectomys. At dinner on Saturday at this years meeting, one of the doctors from Mayo said that they did about 95 myectomys in the last year. That number is almost double.

              It was not a good meeting for the Alcohol Ablation.
              Sitting just behind us (Felix & I were at the same table) was a lady that had had an ablation and it didn’t do anything to help her. In fact, she thought maybe even took a step to the worse. For whatever reasons, she was seen & treated by her local doctors who recommended (just as my local doctors had for me) ablation. How or when he learned about HCMA & the meeting I don’t know, but she was there because she hit a dead end with her local doctors.

              As you know I was 3 days away from having my procedures here in Philadelphia when I found this message board & slammed the brakes on. 2 days later I was on the phone with Lisa & then with Dr. Lever.

              It seems that alcohol ablations are most doctors (and most local doctors know less about HCM & HOCM then any newbie on this site) method of treatment, after medication, for HOCM. It is easy for them to sell it to the patient being that it is “non invasive”.
              IT SOLD ME!

              I was lucky (as we all were) to have found the HCMA web site. But in reality, most people are dx’d & treated by their local doctors. I know that the cardiologist that dx’d me has other HCM patients who don’t know of the HCMA.

              The reality is that most HCM patients in this country are being treated locally and don’t have a clue about HCMA, Mayo, CCF, Dr. Maron, Dr. Lever…
              Cleveland Myectomy Club
              August 31, 2004


              • #8
                Thanks Guys

                I wish i could have been there it is just with having my dad here and the help he needed it just wore me out, i feel so bad about not going my husband even put the dates on his calendar at work that we were going and i just couldn't make the trip i was exhausted, But i definetly want the DVD I will watch it you can bet on that

                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


                • #9
                  Hey Jim.
                  I didn't mean to be flip. It’s just that the dialogue between you and I over the last 20 months has always been tongue in cheek.
                  This was the slide that Dr. Lever used in 04 and again in 05 when he discussed sudden death rates. Dr. Deranni said the same.
                  I know that the slide doesn’t exactly say “Sudden Death” but I believe that you can extrapolate this from “Survival”.
                  Since Dr. Lever is your doctor, perhaps you can get some clarification from him.
                  However, since there was so much new data at this meeting, I personally would have some doubts about this slides present accuracy. The Cardiac MRI may lead to changes to this data. Marty Maron feels that Post Myectomy patients would still benefit from the MRI. We may even find a need for ICD’s for post Myectomy patients, once the data gets collected.
                  I’m going to schedule my MRI for September.


                  • #10

                    Great debriefing on the conference. Did anyone talk about new and emerging treatments for a-fib?


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


                    • #11
                      Felix ,

                      Thanks for sharing this information with us all.

                      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


                      • #12
                        Well I just printed this out so i could let my son read this he doesn't have the internet yet and it is in plain english Thank you

                        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


                        • #13

                          As far as AA is concerned the statistics gained so far are also my main concern regarding this procedure.

                          I stumbled upon a post on this board by Bruce
                          and it seemed a way better alternative to ablation.

                          I emailed the editor of the quoted article, and received this information. Note that the procedure is still in an experimental phase - if AA ever came out of it

                          -Begin quote-

                          Microcoils, microsheres of Ivalon and covered stents (all used as alternative methods of septal reduction in obstructive hypertrophic cardiomyopathy- OHCM) are chemically inert (contrary to ethanol which is chemically active). Because of this, microcoils induce pure ischemic infarction in contrast to ethanol which produces toxic myocardial necrosis. This may explain why patients treated with the alternative methods (microspheres, microcoils) experience less discomfort and chest pain during and after the procedure compared to those treated with the standard procedure (ethanol embolization). As you assumed, the discomfort or pain may last a few hours (2 to 6 hours), not days, after microcoil embolization and the duration of pain significantly depends on the patient's pain threshold.
                          The microcoils do not disintegrate and remain permanently inside the septal artery.
                          Please find attached the abstracts of 3 papers reporting the experiences from centers in Germany and the USA. The authors describe septal ablation in patients with OHCM using alternative devices (microspheres and covered stents) and they make also short remarks regarding the patients' chest pain during the procedures.

                          -End quote-

                          It is important to understand that in none of the patients treated, permanent AV blocks requiring pacing were reported!!! Also, there is no long term damage through leakage of ethanol.

                          You may find the following reports interesting:

                          ORAL ABSTRACTS 2003 Transcatheter Cardiovascular Therapeutics
                          Clinical Outcomes Following Treatment of Hypertrophic Obstructive Cardiomyopathy Using a PTFECovered
                          Stent. Results of a Prospective Feasibility Study 34
                          J.F. Saucedo1, E.R. Guerra2, J. Joseph3, L. Garza3
                          1University of Oklahoma HSC, Oklahoma City, Oklahoma, USA; 2Cardiology Specialists of Memphis, Memphis, Tennessee,
                          USA; 3University of Arkansas for Medical Sciences, Little Rock, Arkansas, USA
                          Background: Alcohol ablation (AA) of the septal perforator branch of the left anterior descending coronary artery (LAD) has
                          become a plausible method to treat patients (pts) with hypertrophic obstructive cardiomyopathy (HOCM). AA improves
                          exercise capacity and reduces left ventricular outflow tract (LVOT) gradient. However, AA requires a steep learning curve, is
                          associated with complete heart block, and has the potential to allow escape of ethanol from the target vessel.
                          Methods: A feasibility study of 5 consecutive pts with HOCM who underwent nonsurgical reduction of the septum by using a
                          polytetrafluoroethylene-covered stent (PTFE-CS) placed in the LAD across the major proximal septal branch was carried out.
                          Pts enrolled had functional New York Heart Association class III or IV, left ventricular outflow tract (LVOT) <40 mmHg, septal
                          wall to posterior wall ratio >1.5:1, were refractory to medical management, and had prespecified coronary anatomy. Clinical
                          assessment and cardiopulmonary exercise testing (CPX) were performed at baseline and at 30 days postprocedure.
                          Results: All 5 pts (aged 49.8 years ± 11.4; 4 men) had successful deployment of a PTFE-CS across a major proximal septal
                          branch. No complications during the procedure were seen, and no pt needed permanent pacing. The peak enzyme elevation
                          was as follows: creatine kinase (CK), 351 ± 226 u/L; CK-MB, 31.5 ± 25.6 ng/mL; hospital stay, 4.6 ± 0.5 days. Mean LVOT
                          reduction: 41.6 ± 28.3 mm Hg. At follow-up, 1 pt presented with focal in-stent stenosis, which was successfully treated with
                          angioplasty and brachytherapy. A significant increase in peak exercise time and maximal O2 pulse (p < 0.05) and an increase
                          in peak oxygen consumption (VO2) and VO2 at anaerobic threshold (p = 0.06) were seen (Table).
                          Changes in Cardiac Exercise Testing Compared With Baseline
                          30-day ∆ From Baseline 30 day ∆ From Baseline P Value
                          (n = 5) (n = 5)
                          Peak exercise time (min) 1.2 ± 0.6 23.2 ± 7.3 0.03
                          Peak VO2 (mL/kg/min) 4.1 ± 1.6 31.8 ± 18.1 0.06
                          VO2 at AT (mL/kg/mg) 2.6 ± 1.7 35.9 ± 29.6 0.06
                          Maximal O2 pulse (mL/kg) 2.6 ± 0.6 27.0 ± 8.0 0.02
                          AT = anaerobic threshold; VO2 = oxygen consumption.
                          Conclusion: The use of PTFE-CS to treat symptomatic HOCM is feasible and is associated with very low morbidity. Pts with
                          HOCM treated with PTFE-CS had improvement in 30-day CPX. This new nonsurgical septal ablation method for the treatment
                          of HOCM warrants further clinical evaluation.
                          Interventional Approaches to Septal Defects, Valve Disease,
                          and Hypertrophic Cardiomyopathy

                          2004 Transcatheter Cardiovascular Therapeutics
                          First Experience with Transcoronary Ablation of Septum Hypertrophy with Microspheres in Patients
                          with Hypertrophic Obstructive Cardiomypoathy 386
                          T. Konorza, M. Haude, M. Katz, D. Böse, U. Neudorf, R. Erbel
                          University of Essen, Department of Cardiology, Germany
                          Background: In hypertrophic obstructive cardiomyopathy (HOCM) therapy, surgical myectomy and DDD pacemaker
                          implantation are considered to reduce left ventricular outflow track gradient (LVOTG) in patients with refractory symptoms. In
                          addition, percutaneous transluminal septal myocardial ablation (PTSMA) by alcohol-induced septal branch occlusion has
                          become an established technique. Ablation with chemically inert microspheres offers theoretical advantages and is currently in
                          clinical evaluation.
                          Methods: Eight patients who were symptomatic despite adequate drug therapy with clinical and echocardiographic diagnosis
                          of HOCM (5 men, 3 women) and leading dyspnea (NYHA classification III) were treated by PTSMA with microspheres. The
                          target vessel was determined by probatory balloon occlusion (PBO) and myocardial contrast echocardiography (MCE), and 3 to
                          5 mL microspheres (size: 45-150 µm; Contour®, Boston Scientific) were injected over the balloon catheter in the septal branch.
                          LVOTG was documented with simultaneous pressure registration in the aorta and the left ventricle.
                          Results: The invasively determined LVOTG could be reduced with a mean reduction from 135 ± 43 to 27 ± 26 mm Hg
                          postextrasystole (p <0.0001). Peri- and postintervention, no arrhythmias were documented, and there was no serve chest pain.
                          Conclusions: PTSMA for HOCM with micospheres is a promising additional nonsurgical technique for septal myocardial
                          ablation, allowing significant reduction of the LVOTG. The possible long-term activity of alcohol and the acute pain associated
                          with its use are avoided. Prospective long-term observations of larger populations and a comparison with established forms of
                          therapy are necessary to determine the definitive value of PTSMA with microspheres.
                          Am J Cardiol. 2004;94(suppl 6A):178E.
                          Congenital and Structural Heart Disease
                          POSTER ABSTRACTS

                          Oh well, this is copy / paste from two PDFs. Yell when you want the original

                          As shows, there is hope without considering AA!

                          \"Hope is disappointment postponed\"

                          Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

                          Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

                          Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

                          Meds (current) sotalol, dabigatran, furosemide.


                          • #14
                            Ad- The thread you linked to had Lisa saying "I have known about this for a while and frankly I hoped it would NOT continue. I will comment further in a newsletter article."
                            I think I'll wait till Lisa has her say.
                            Kinda funny that we had Shirley grateful I wrote my post in plain English, and then the very next post is all that medical gobblegook.
                            Paul- Since I am a self-serving, selfish lout, and since I have not had AFib, I really didn't pay attention to the AFib discussions. Sorry. Maybe a more magnanimous attendee can comment. In the meantime I think we require an update on your recovery (separate post please).

                            Remember, It’s not a question of Myectomy-Good, Ablation-Bad. It’s more like Myectomy-Great, Ablation-Very Good (at least in the hands of an expert). However, the average Cardiologist presents Ablation-great, Myectomy-difficult, because they read some 5 year old Journal of medicine article, and besides, they have a great Cath guy down the hall.


                            • #15
                              Re: Genetic Screening:

                              Dr. Ho (who Felix missed) talked about genetic testing and HCM. There is now a genetic testing panel offered by Harvard that can identify up to 65% of the genes that cause HCM. Harvard Partners Center for
                              Genetics and Genomics now runs a clinical test screening for all
                              known hypertrophic cardiomyopathy mutations. The plus side is that
                              there is a guaranteed turn around time of about three weeks for
                              results. The negative aspect is that the test costs about $5500 for
                              the first family sample and $250 for each additional sample tested.
                              Insurance may cover all or part of that cost. I include
                              their web site for additional information.


                              Paul - About the a-fib, etc. I missed the panel given by Dr. Winters, the electrophysiologist. I would be interested to read anyone's account of his talk. Anyone??
                              Daughter of Father with HCM
                              Diagnosed with HCM 1999.
                              Full term pregnancy - Son born 11/01
                              ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                              Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.