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Ablations VS. Myectomy

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kathyn2 Find out more about kathyn2
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  • Lisa Salberg
    replied
    You are very wise to evaluate your situation carefully... what may be good for your heart...may well be bad for you in other ways... You need to talk to your docs and make sure everyone is on the same page. Sometimes specialists be it cardiology, eyes, or whatever the body part of function they specialize in... can not fully appreciate the others specialty...simply asking and following up on communications between the specialists can make a world of difference!
    I hope all works out well for you!
    Lisa

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  • kathyn2
    replied
    Hi Sarah, my problem with norpace (besides being a little nervous of it) is that I have glaucoma and it is contraindicated. But if you need the drug badly there is another drug you can add to your arsenal for the glaucoma. I hate to mess with that tho because I just got my eyes in order! Plus I have sjogren's syndrome which is an autoimmune disease causing very dry mouth and eyes. Can't imagine being any dryer. I am such a complicated medical mess. It seems like one thing affects another. I am sure the doctors hate to see me coming. Dr. Shah doesn't know about these other illnesses yet so I guess that is why it was prescribed. I will be talking to him about it. Have a good time at your medical conference. I hope you all bring us back some good news and some good info!

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  • Sarah
    replied
    grain of salt

    Hi K,

    I took Norpace for ten years with no real side effects except for slight dry mouth from time to time.

    The reality of all the heart medications is that they call all _give_ you arrhythmias, instead of making them go away. The odds of this happening, however, are miniscule and they start you off in the hospital so if they do happen, they just reverse it right then and stop the medication.

    The other thing to keep in mind is that all those side effects are things that happened to people _while they were taking the drug_ and NOT necessarily BECAUSE they took it. Even if only 2 people had a headache, they have to list it.

    However, then there is amiodarone that is really seriously toxic and something to seriously think about.

    And Norpace helps a lot, they've got good results with it so you may want to give it a go.

    take care,
    s

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  • Reenie
    replied
    Originally posted by Robert Hartwell
    I try to read the board every day. I do this because I want to give to others the support that all of you have given me. As I read these posts and replies, I have never gotten the feeling that any of the moderators were biased toward myectomies or against ablations, for ICD's or against ICD's, for any particular medication or against any particular medication (as long as the meds are not contraindicated). What they do is help balance our views, provide us with information, urge caution, point us to specialists and help us survive that emotional rollercoaster called HCM. The real help (if you will) comes from each of us as we share our experiences with those folks who are walking similar paths.

    Bob
    Bob, I think that was very well said.

    Reenie

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  • Robert Hartwell
    replied
    Kathy,

    You are correct when you said that making a decision to have some form of septal reduction is a very difficult decision. Each of us is taking a risk for some future long term (we hope) gain. I know that it was not easy for me to make and I was only given one treatment choice!

    For everyone,

    I try to read the board every day. I do this because I want to give to others the support that all of you have given me. As I read these posts and replies, I have never gotten the feeling that any of the moderators were biased toward myectomies or against ablations, for ICD's or against ICD's, for any particular medication or against any particular medication (as long as the meds are not contraindicated). What they do is help balance our views, provide us with information, urge caution, point us to specialists and help us survive that emotional rollercoaster called HCM. The real help (if you will) comes from each of us as we share our experiences with those folks who are walking similar paths.

    Bob

    Leave a comment:


  • Lisa Salberg
    replied
    Correction.. the mortality rate with myectomy is about 1% in the best centers and is about the same or even a little higher at this time for ablation.
    IF you are going to a smaller center for either procedure the numbers go way up...this is why we suggest staying with a specialty center.
    Best to all!
    Lisa

    Leave a comment:


  • kathyn2
    replied
    Actually both of these procedures sound scary to me. I was reading about myectomies also and they don't always turn out well either. There is also a 4% mortality rate. There can be as many side effects of that surgery as with Septal alcohol ablation. But then again, the doctors make the ablations sound like no big deal and there are many side effects and dangers to them also. It is a very difficult decision. Another decision for me is whether to try Norpace. Now that sounds like a very dangerous drug! I have been given the option of that also but I have some contraindications that the doctor didn't know about when it was prescribed. I have to discuss that. After reading about the drug I am not too hot to try it. This whole disease is a very dangerous business! A little piece of advice I have is for everyone to check out everything for themselves. Check out the drugs, the procedures and everything and make sure they are for you.

    Leave a comment:


  • Sarah
    replied
    caution

    I think we tend to sound over-cautionous b/c ablations seem like an easy thing to do, but aren't. They work very well for some, but cardiologists who have not seen a lot of HCM/HOCM don't understand all the complications of an HCM heart and may not be giving the procedure the weight it deserves in terms of risk factors.

    Yes, it would be fantastic if we could just do ablations and skip myectomies entirely but it is still early days for ablations. Personally, I don't want to be a guinea pig. I try very hard to be objective, but I know I may fall down on ablations b/c they are not "tried and true" yet.

    The bottom line --however-- is that it is YOUR decision. Not mine. And something I've learned first hand is that you can debate options and come down on a certain side over and over --but when you actually HAVE to make the choice, all bets are off and you start from ground zero because now it is YOU and not the abstract anymore.

    So there is my little rant.

    S

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  • Lisa Salberg
    replied
    OK I am on bended knee here... I am not "against" ablations... I am not "for" myectomy... I am in favor of OPTIONS and making the correct choice for each person based on available data and current understanding.

    Yes, ablations are NEWER and less data is available ...this is a fact not an opinion and something that must be measured carefully when making a choice. There is data now available that is laying lines to help identify those people who will likely do better with one procedure over another. WE still have a great deal to learn...it will take a great deal of time to know the whole story.

    Balance them carefully...

    Dr. Shah is a very good doctor and I have a great deal of respect for him, I trust you are in wonderful hands

    All the best!
    Lisa

    Leave a comment:


  • Linda
    replied
    Kathyn, Lisa, Sarah, and I will be at ACC(American College of Cardiology) Sun - Tues. We will be listening and hoping to come home with lots of new info. Although it is still too early to have "long-term" statistics on alcohol ablations, I am very optimistic about the future. I hope those of you who have had them will continue to post progress reports. At the risk of getting too personal, I'm interested to know ages of those who have had them done and if the doctor performing the procedure gave any age guidelines to those people. Did your doctor tell you, " I wouldn't do it on someone under age __?" I think it's a good idea to ask if anyone out there had notable problems with myectomy. Linda

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  • kathyn2
    replied
    Lisa, I dont have any medical reasons for not having a myectomy other than fear! LOL Dr Shah told me that if the ablation failed that I could always have a myectomy later. It just appears to me that ablations are becoming more accepted than they were. Do you know, of the ones that failed, if they were done at a center that does alot of them? That is the one caveat that Dr. Shah gave me. Get it done with they do alot of them. At least 100. Don't be a guinea pig in your local area where a doctor may have done 5 or 10. He is actually going to look into whether there is anyone in So. Calif. that he could recommend. Sarah, I have done alot of checking here on our site and I have seen where alot of people have been very happy with them. I have also seen alot of discouragement coming from the moderators about them. Maybe the moderators don't mean to appear against them but it is how it comes across to me. I know that myectomies are the gold standard. I was happy that Dr. Shah didn't seem to be against them and seemed happy to recommend one for me. I thought maybe the school of thought was changing. Also, maybe it depends on who does them as to whether they are a success or not. I would sure like to see some facts and figures and statistics but I am not seeing that anywhere. So far I have only come across 1 person in the archives where their myectomy didn't work out. I would love to hear from others that had a failure and where they went to get theirs. I thought my doctor seemed to indicate that if they were done at a good center where they have done alot of them that they were pretty successful.

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  • Lisa Salberg
    replied
    YOU are 100% correct and my apologies to Dr. Spencer for my lapse of memory!

    Lisa

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  • Reenie
    replied
    Lisa, I believe Spencer is at MUSC in Charleston, South Carolina.

    Reenie

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  • Lisa Salberg
    replied
    DId you ask why a myectomy was not suggested? Some people with other health problems that make them a risk for surgury may limit risks by having an ablation, this is one posssible reason.
    The majority of those in the past 6 months having septal reduction (and in touch with the HCMA) have had myectomy... about 60% compared to 40% who have had ablations...I am only mentioning those who had an option of the 2... Of all procedured about 80% are myectomy and 20% ablation..with the ablations picking up steam in the past 2 months.

    Cleveland has high numbers for ablations, about 50 last year. Spencer is at ...opps I am home at this moment and am drawing a BLANK (sorry... I will post this very soon!), Caution is suggested when choosing a center..yes many can do the procedure... but few have the experience to do it well.

    Lisa

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  • Sarah
    replied
    choices

    Dear K,

    Please use the board's search function to search for posts on ablations and myectomy. You will find ALOT that will illuminate you.

    In a nutshell, if you are under 50 --most are going to recommend the myectomy as there is no long term data on ablations.

    I would say ablations are getting "popular," not "accepted."

    You have a shorter recovery time with an ablation, but no guarantee that it will work and that they won't have to go in and repair your valve or do a myectomy anyway or that you won't have problems from the scar tissue later on down the line. However, they crack your chest open and stop your heart for a myectomy. ew.

    S

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