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  • Eileen2345
    replied
    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.

    Leave a comment:


  • Laoshur
    replied
    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

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  • Eileen2345
    replied
    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.

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  • Boz
    replied
    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 Iíve never heard of it, - and we do Ė and therein lay the difference.
    Youíre right Burt Ė it has not been mentioned at least in the popular press what causes his arrhythmia. Iíve seen it called both atrial flutter and atrial fibrillation. Iím 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 thatís the way I see it.
    The science of electrophysiology is way beyond me. But Iíve always wondered Ė if they arenít using a good old fashioned volt meter, how do they really know where current is or is not traveling?? Iíve 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.

    Leave a comment:


  • Burton Borrok
    replied
    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 Iíve never heard of it, - and we do Ė 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, itís 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, Iím 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 thatís the way I see it.
    Burt

    Leave a comment:


  • Boz
    replied
    Re: updates

    Don't mean to complicate the decision weighing Julie, but UK Prime Minister Tony Blair just had the procedure a couple of months ago.

    I think a world leader would be guided by advisors and experts that we common folk don't have access to.

    Probably, once again, comes down to who is doing the operation.

    Leave a comment:


  • Debbie
    replied
    Re: updates

    Agreed!

    Debbie

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  • Eileen2345
    replied
    Re: updates

    Quote by Debbie:
    My aunt just brought it up yesterday, saying that when my mom ended up at University Hospital in Denver, she would never forget the horrified looks on the faces of the doctors there when they found out she had had that done.

    I believe it.

    I would never let anyone burn any parts of my heart again.
    Back then, I did not know all that I know now about HCM.

    Since I do not have health insurance, the EP doctors would only implant an ICD devise IF I agreed to let them do an electical ablation first. I was brought to the hospital under an emergency situation. They said they were going to try to "FIX" my heart problem by doing the ablation first, then if I still needed the ICD, they would give it to me. Afterwards, the EP doctors and cardiologists said that the ablation was unsuccessful and that I needed the ICD.

    Please be careful out there everyone. Do a lot of research before letting any doctor, especially a doctor who is not an HCM specialist do any procedure.

    Best Regards,
    Eileen

    Leave a comment:


  • Debbie
    replied
    Re: updates

    Jen/Eileen,

    Jen, I hesitated bringing this up, since it seems like you're facing so much already, and have a lot of uncertainty. But Eileen, since you opened the door, here goes.

    My mom had an ablation for afib and tach. It was a horrible experience for her. She had a very bad time with it. It didn't help her much, if at all. And I know that if she could have gone back, she would never have done it.

    This was probably about 10 years ago. My aunt just brought it up yesterday, saying that when my mom ended up at University Hospital in Denver, she would never forget the horrified looks on the faces of the doctors there when they found out she had had that done.

    Now, of course everyone responds differently to procedures, being that everyone is in a different state of health when they get them done. But Jen, I would certainly do a little more research before getting it done.


    Debbie

    Leave a comment:


  • Eileen2345
    replied
    Re: updates

    Hi.

    Okay, I had one of those electrical/ radiofrequency ablations done about 2 years ago.The EP doctors cauterize (burn) parts of the heart to help with stop epidodes of SVT and arrhythmias.

    This is only my opinion.....

    I would never let them do this to me now. I could be wrong, but I think it has further damaged my heart. My symptoms got worse after they did the ablation.

    Here is how I feel and like I said, I could be wrong -- but -- for a normal heart, it may be okay to do. But for a heart with myocardial disarray, it think it is not good. I think it may create more scare tissue making the heart even more stiff. I could be off the mark on this, but honestly, I feel worse ever since they did it to me.

    Plus, it did not work for me. I still have SVT.. I have episodes of A-fib.

    This is just how I feel, please do not subsitute my judgement for your own.

    My best to all

    Eileen

    Leave a comment:


  • Boz
    replied
    Re: updates

    Originally posted by Laoshur
    Actually, I am Rhoda.
    Oopps . . . I knew that. I think I looked at your screen name though and deciphered Laura - Sorry.

    I guess I realize that there are no guarantees being made for any procedure or medication, but I also like to add up the "it was worth it" vs the "it wasn't worth it comments"

    Leave a comment:


  • Laoshur
    replied
    Re: updates

    Actually, I am Rhoda. But, yes, I think it helped. Did it completely get rid of the flutter? Who knows? I had so many strange feelings before the ablation and fewer, and still many afterwards. But, ablation + beta blockers + calcium channel blockers + pacing seem to have helped sgnificantly.

    Leave a comment:


  • Boz
    replied
    Re: updates

    I was not familiar with the drug pacerone, so I looked it up. I see that itís actually generic amiodarone. It does seem odd that the Docs wanted you on 2 different antiarrhythmics, but then again, what do I know?

    Didnít mean to put you on the spot . . . I was inquiring about Sotalol because Iím facing upcoming treatment that features the drug. I was looking for some first hand feedback. There are all kinds of places to get information about the drug and Iíve already done that. These sources tell you what the drug is supposed to do and usually will list potential side effects. Its going to be a rare Dr. that samples every drug he prescribes. Even those experts will be repeating that same information.

    These forums are unique in that here we can get actual user experiences rather than standard text book answers. It sounds to me like the drug is failing to work in your case. Thatís useful information to me. If you also experienced some of the negative side effects, while having the drug not work, I think I would begin to form an opinion about the drug.

    Laura, the all important question for you: Did the radiofrequency ablation get rid of the atrial flutter??

    Leave a comment:


  • Burton Borrok
    replied
    Re: updates

    Dear Rhoda,
    So far Iíve had six angioplasties (of which four were heart caths Ė the last one running six hours over two days) plus at least a dozen angiograms (same procedure except no balloon or stent.) I have learned from painful experience that the last thing you do before getting on the gurney is to go to the john, and get rid of every drop you can. The transporter always has some extra time to allow for this. (Didnít you lay around outside the cath lab until they were ready for you?)

    I do have to admit that one time they must have bothered my bladder, because they opened the flood gates. As it turned out they had everything that was needed to clean up both me and the table. They just had some extra laundry that day. Frankly, if I had to choose between the embarrassment of peeing on the table, or suffering the pains of not doing so Ė well, letís just say that the laundry company would probably appreciate the additional billing.
    Burt

    Leave a comment:


  • Laoshur
    replied
    Re: updates

    Julie,

    I had a radiofrequency ablation for atrial flutter two summers ago when I first found out I had HCM. I had a long EP study done before hand and then the ablation. I was in a partially awake state for the EP study, so I remember that, and then they put me fully under for the ablation. It was all very easy except that they put me in bed and hooked up to monitors at about 10:30 or 11 am. Then they did not get done with the previous person for several extra hours. I asked and went to the bathroom at about 12:00 and was getting ready to ask again when they came to take me in. They said it would only be about an hour, so I figured I would not hold them up by asking again. Well, I was not allowed to move, even to sit on a bedpan until 2:15 am! I recall the moment of joy very well! I watched every minute creep by on the clock before that time. They stuck a thing that is rather like a dustpan under me, but my body refused to cooperate. The pain of that was one of the worst I have ever felt. Since I usually store fluids until I lie down, when they finally let me up, I filled the measuring pan and ran over the top. Then I filled it again. The nurse could not believe it. So, I advise you to ask for a catheter or at least find out how long they will make you lie absolutely still. Other than that it is a piece of cake!

    I hope it goes well for you!

    Rhoda

    Leave a comment:

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