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  • #16
    Re: updates

    Hi Boz,
    I think were talking apples and oranges when it comes to radio frequency ablations and comparing Tony Blair to us folk. I do not believe Mr. Blair has HCM, at least I’ve never heard of it, - and we do – and therein lay the difference.

    In a normal heart it is possible for a separate electric pathway to develop causing an A-fib condition. The cure for this might very well be a radio frequency ablation to block that alternate pathway. With our HCM hearts and the attendant myocardial disarray, there may develop many, many alternate pathways, and blocking some might very well just result in activating others, and the newly activated pathways could disrupt things to a greater extent then the old pathways ever did, making the resulting condition worse then the original one. Basically as I see it, it’s a crap shoot as to whether a radio frequency ablation will help, hinder, or leave unaltered, the original A-fib problem, when dealing with HCM hearts.

    It would be akin to finding a hole in a bucket and fixing it, or trying to block all the holes in a strainer that has the capability of generating new holes as you block the old ones. No, I’m not calling Mr. Blair an old bucket. If however he does not have a myocardial disarray problem, he falls into an entirely different category of patient then we would. At least that’s the way I see it.
    Burt

    Comment


    • #17
      Re: updates

      I think were talking apples and oranges when it comes to radio frequency ablations and comparing Tony Blair to us folk. I do not believe Mr. Blair has HCM, at least I’ve never heard of it, - and we do – and therein lay the difference.
      You’re right Burt – it has not been mentioned at least in the popular press what causes his arrhythmia. I’ve seen it called both atrial flutter and atrial fibrillation. I’m sure his press people want both the condition and treatment to sound as insignificant as possible.
      If however he does not have a myocardial disarray problem, he falls into an entirely different category of patient then we would. At least that’s the way I see it.
      The science of electrophysiology is way beyond me. But I’ve always wondered – if they aren’t using a good old fashioned volt meter, how do they really know where current is or is not traveling?? I’ve always imagined these procedures as ones that are planned with a fair amount of assumption and reference to past successes and failures.

      Also - from what I understand, myocardial disarray is only suspected as a cause of a disrupted electrical flow. Not all HCM patients suffer arrhythmia problems, but if they do indeed have HCM they all have myocardial disarray.
      • 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


      • #18
        Re: updates

        Here is my point:

        Myocarial disarray (HCM heart muscle tissue) causes the heart muscle to be more stiff than normal heart tissue. When any muscle tissue is cauterized or burned, it causes scar tissue -- scar tissue is stiff. Therefore I believe it causes more damage to a heart with HCM and worse symptoms.

        If I could turn back time to 2 years ago, I would not have had this procedure done -- ever.

        I do not think it is wise for muscle tissue that has myocardial disarray be burned for any reason. In my opinion, that is what ICDs and medications are for.

        As far as I know, Tony Blair does not have HCM or HOCM. His situation does not apply here.
        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


        • #19
          Re: updates

          I think one thing is clear. Not all experts in HCM agree in several important areas. For example, in the context of this thread, it was one of the doctors who specializes in HCM and is frequently recommended on these boards who did my radioablation. It is the same doctor who has me 100% paced to reduce obstruction. These are two things that many people here say should NOT be done. But, who are we to depend on if it is not these doctors?

          I suppose that is why I did not comment the first time on whether it had helped. I also have reservations about doing this procedure, especially after I saw how many areas had to be killed off to do it. But, again, who can we trust, if not the doctors who are supposed to be experts?

          I am glad that I have these boards to get a wider opinion, but so far for me, this has been of somewhat limited value because I seem to only find out what is being done and why after it is done. I'm just slow I guess.

          Rhoda

          Comment


          • #20
            Re: updates

            To me, it just does not make sense.

            HCM specialist or not, I do not think that any doctor should burn a heart that is already thick and stiff.
            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


            • #21
              Re: updates

              Well folks,
              Let me throw another two cents into the pot. Each and every one of us is different, and the doctor’s are limited to the knowledge and tools available to them today.

              Sometimes evaluation shows only limited electrical misdirection in an HCM heart, and although there are no guarantees that new pathways will not emerge from the procedure - or after, the consciences is that the chance of success makes the attempt worth while. OK, you give it a try – and most often it helps, not every time mind you, but sufficiently often for the doctors to recommend rolling the dice.

              Someday I hope there will be a way to block all misdirected electrical impulses without any risk or further damage to the heart, but we have no such methodology available today, and we are living in today’s world. It is the individuals decision to make, and should be based on the danger he or she is facing with their own misbehaving heart, a complete knowledge of the chances of success in their own case, and faith in the doctors that they have chosen to guide and treat them.
              Burt

              Comment


              • #22
                Re: updates

                Originally posted by Eileen2345
                To me, it just does not make sense.

                HCM specialist or not, I do not think that any doctor should burn a heart that is already thick and stiff.
                It's just too individual to say that you should never burn a heart that's already thick and stiff. If the arrhythmia is debilitating enough and your heart can stand it, you may indeed feel a lot better after a radio frequency ablation. There are way too many factors involved to make any kind of assumption on why the RAF is indicated for one patient and not for another. It's the doctor's job to do the best they can with the tools they have.

                Reenie
                Reenie

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

                Comment


                • #23
                  Re: updates

                  Hi everyone.

                  This just my opinion based on my experience and from everything I have read....

                  But, for me it would have to be the absolute last resort, every possible avenue must have already been tried thoroughly.

                  And, for me, I would have to be on the floor and unable to get up for me to ever agree to have a doctor burn my heart again.

                  I know how I felt before they did the RAF and I know how I felt after the radio frequency ablation. I know it did damage.


                  But like I said earlier, you do not have to substitute my judgement for your own.

                  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


                  • #24
                    Re: updates

                    Rhoda, who is your doctor? I am wondering who it is that recommended you be paced 100% of the time and to relieve the obstruction. I am hearing on this board and from Lisa that it isn't good etc and yet I have several doctors recommending it. BTW, where is the literature saying that the pacing is harmful? The latest doctor I have that wants to install the icd says he has several hocm patients being paced this way and that they feel much better. I don't know who to believe. Dr. Shah says that about 20% of hocm patients can be helped with this sort of pacing. I can't tell if he recommends it or not. When I see him I am going to try to get him to be more specific. I don't get the idea from he that he is against trying it however. This can all drive a person crazy!!

                    Originally posted by Laoshur
                    I think one thing is clear. Not all experts in HCM agree in several important areas. For example, in the context of this thread, it was one of the doctors who specializes in HCM and is frequently recommended on these boards who did my radioablation. It is the same doctor who has me 100% paced to reduce obstruction. These are two things that many people here say should NOT be done. But, who are we to depend on if it is not these doctors?

                    Comment


                    • #25
                      Re: updates

                      Cathyn,
                      I know trying to see which way to go at this point is like trying to play golf in a blizzard, but making a decision one way or the other is a must. Therefore I would like to offer some “Grandfatherly” advice.

                      You are going to see Dr. Shah. He was recommended to both you and me by Lisa (who we both trust), and in my case, a few others also. He is considered by many to be the leading expert in the area. You can be guided by him, or you can hop a plane to Cleveland, Boston, or Rochester, Minnesota – and get advice from NEMC, CCF, or MAYO. In your place, I would go to see Dr. Shah.

                      Bring along all your why’s and how’s, and as much detail of your personal medical experiences as you can recall and write down. Dr. Shah is a recognized expert in this field, and since you have to trust somebody, I would give his words a great deal of weight. I am not saying to accept every word blindly, but it is a good place to start, and then proceed forward from there with your eyes wide open, in doing your own research.

                      I am relatively sure that Dr. Shah will do his own work-up of you, and that is the time to get as many questions answered as you can think of. Once you are sure what you want to do, then that is the time to move on your decisions. Time is important too.

                      We are all different and have different forms of this disease which has advanced to different extents. We all have different additional factors to consider, and require different forms of treatment. If you try to go solely on anecdotal evidence, you will only succeed in driving yourself crazy. Sure, all our stories have meaning and adds color to the overall picture, but in your particular case you should be guided by your own expert. All the stories will help immeasurably in your question generating and understanding processes, but you will have to rely on your selected expert to advise you in regard to your particular case. Then, get the treatment you’ve decide upon from the doctor or facility you have selected.

                      Hope this has cleared your view – at least to some extent.
                      Burt

                      Comment


                      • #26
                        Re: updates

                        Burt, I take it you live in Calif. Do you live in Newport Beach? Los Angeles? or San Diego? I live in San Diego. I have been to see Dr. Shah twice in the past and I really like him alot altho unfortunately for us, there isn't anyone in calif that is worth risking surgery on etc. Dr. Shah doesn't do surgery or recommend anyone around here to my knowledge. Same with ablations. But at least he can tell us what shape we are in. LOL Did you get your icd from someone at Hoag?

                        Comment


                        • #27
                          Re: updates

                          Cathyn – bless your misbehaving heart,
                          I lived in the San Fernando Valley for a bit over twenty years (Chatsworth), before moving here to Henderson, NV (just across the line from Las Vegas). I moved here almost three and a half years ago.

                          Another thing, I don’t have an ICD – at least not yet. I do have around fifteen diagnoses though. Beside HCM some of the highlights are diabetes (I take 300 units of insulin a day), CHF, kidney disease (I expect to be on dialysis in 2005), Familial Hyperlipidemia, Coronary Artery Disease, Chronic Obstructive Pulmonary Disease (COPD), degenerative arthritis, and a bunch more. I also am an incurable optimist, with a strong type A personality.

                          Last September I had an MRI of the brain and they said I did not have another stroke, but something was definitely going on, and I should see a stroke specialist. I am still fighting with the insurance company over that, and I have appealed their refusal. We will see where that leads.

                          I spend enough time talking about my problems, so let’s talk about yours. By the way, I have never met Dr. Shah – my insurance company blocked me on that too. However, in your shoes I would definitely get his determination, and if he advises surgical intervention of some type (like an ICD) I would talk to Lisa about where to go, and probably would wind up at one of the ‘big three’ – NEMC, CCF, or Mayo.

                          It’s time to move forward with all deliberate speed. Although time is not your friend in this, running blind can be worse. You have the first step under way – and that is seeing Dr. Shah. Let’s see what he recommends, shall we?

                          By the way, before we moved to the San Fernando Valley, we gave serious consideration to living in San Diego. Unfortunately I could not find employment there, so after a few weeks we headed north a bit. We had moved from Long Island NY, and spent 91 days on the road – even hitting Key West, FL in our meanderings.

                          Please keep in touch,
                          Burt

                          Comment


                          • #28
                            Re: updates

                            Hey, guys -

                            I just wanted to interject something here. If you do need an ICD Kathy, it is not necessary to fly off to Cleveland or Mayo or wherever. You can have an ICD placed right here in So. Cal. There are plenty of EPs that can implant you and monitor your device right here, including some at the Hoag, or I am sure down there in San Diego as well.

                            A myectomy or ablation is a whole different ball game. For those, I would recommend flying to an expert center, but to get an ICD, in addition to the implant, you need someone to interrogate your device every so often and to reprogram it if necessary, make adjustments, etc. Therefore, it is imperative to have a local doctor, and you might as well find someone down there that you like before you start. Now, that person should consult with Dr. Shah about the settings, etc. so everyone's on the same page, but it is really not that big of a deal, and not in the same ballpark as the other procedures.

                            I have a terrific EP up here in L.A. who I found through word of mouth. I checked him out with Lisa and Dr. Shah, and they both recommended him as well, so that's where I went. He in turn sent me to an HCM doctor (who I had already gotten a second opinion from) up here in L.A. who is much easier for me to see on a normal basis than Dr. Shah, and the two of them treat me together.

                            Anyway, I wouldn't worry too much. (I know its easy for me to say...I was also terrified when I was in your shoes). I am sure that they will straighten you out.

                            Hang in there,

                            Cynthia
                            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.

                            Comment


                            • #29
                              Cleveland clinic will be doing the procedure, the one thing I do know is that I can not live the rest of my life out in this kind of pain, it makes me so I can't hardly get my breath or walk. AF a couple days ago messed up my heart enzymes, which I figured after like 30 minutes I could feel a strong wheeze, sure enough I was in CHF. I also have this low bp going on, I noticed the last time my heart rate jumped around from 117-212bpm while I was in AF and having all the pain,then after like 40 mins. of that I converted by myself and had a rate of like 60 bpm and a real low bp like 86/20?? something like that. I just hope this ablation works.
                              Jen

                              Comment


                              • #30
                                Jen, Thinking of you, sending prayers your way. Linda

                                Comment

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