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  • Myectomy

    [Myectomy]

    Author: Tim (---.demon.co.uk)

    Date: 01-23-02 09:07

    I have been diagnosed with HOCM for the past 10 years, I was first diagnosed at 21. About 5 years ago I began to have symptoms of blacking out when walking up stairs, chest pains and shortness of breath. I was put onto beta blockers which I soon realised I couldnt tolerate. I then tried Verapamil which seemed to do the trick, however the dose has had to be increased several times and it would appear that its effectiveness has worn off.

    My consultant has recently suggested another drug, Disopyramide which I have now tried and again cant tolerate the side effects (dry mouth, constipation and urination problems). The options now left to me appear to be: Do nothing and risk black outs etc, have a myectomy or alochol ablusion (not recommended for my age) or have a pacemaker fitted. The recommenadtion being a myectomy.

    Has anyone else experienced anything similar, Had a myectomy or facing similar issues?

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Myectomy]

    Author: Shannon Santagate (---.galileo.com)

    Date: 01-23-02 13:38

    Hi Tim.

    I am getting from your e-mail that you are about 31. Is that right? I'm just curious, but who said the ablation was not recommended for your age? My niece had it at age 26, my brother at age 46 (approximately,) and I'm having it in April at age 34. I know the Myectomy is a good fix for this disease too, but I'm just curious about the age thing.

    Thanks, Shannon

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Myectomy]

    Author: Tim (---.demon.co.uk)

    Date: 01-24-02 11:28

    Dear Shannon

    My consultant at St Georges Hospital in London has said that because there is no long term follow up from the procedure, he wouldnt reccomend it over the myectomy. The myectomy has been around for 50 years hence has a better track record.

    Have you had similar experiences with drugs to myself? Who has reccomended the ablation to you?

    Yours Tim

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Myectomy]

    Author: Bob (---.dyn.optonline.net)

    Date: 01-24-02 13:16

    Hi Tim,

    I have no personal experience with eiher the Myectomy or Alcohol Ablation procedure .As with any decision of this magnitude, however, I would strongly recommend you get as much information on each alternative yourself (there is extensive information available on the internet). Then, armed with this information and your questions, seek second, third etc. opinions from HCM experts, until YOU feeel cabable of making a decision you are comfortable with. Keep in mind, doctors opinions are usually subjective, based on their own personal experiences, biasis etc. - they are human. It isn't always a matter of being either totally right or wrong. You should eliminate your doubts and then make your coice.

    Good Luck,

    Bob.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Myectomy]

    Author: Shannon Santagate (---.galileo.com)

    Date: 01-24-02 15:28

    Hi Tim.

    Yes, I have had similar drug experiences. I was on Verapamil and Disopromide for a few years then this past summer they just seemed to stop working. When I went to my doctor in September she said I needed to have something done right away (i.e. the Myectomy or the Ablation.) She consulted with Dr. Barry Maron who is an expert on HCM and he said the Myectomy was the way to go. He said the same thing your doc said about the Ablation -- that there wasn't enough long term data for him to recommend it. While I totally respect his opinion, I would rather have the Ablation and risk the long-term than have open-heart surgery. Anyway, my doctor took me off Verapamil and put me on Toprol (a beta blocker) along with the Disopromide. I am having the Ablation done in April, but in the meantime I feel SO much better because of the medicine change. The only problems are that both medications make my blood pressure really low and I'm always cold (it doesn't help that I live in Colorado!) I'm also kind of tired all the time and I get dizzy every once in a while.

    I'm looking forward to the Ablation (and I'm a little scared, too.) I'll let you know how it goes!

    Shannon

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Myectomy]

    Author: Phil (---.tnt5.minneapolis.mn.da.uu.net)

    Date: 01-24-02 21:23

    Tim,

    I am 26 yrs old and have HOCM. I have just returned from a consult at Mayo Clinic, Rochester MN. I have been seen by three different cardiologists in three different facilities and and finally referred to Mayo Clinic. I met with Dr. Nishimura who is a specialist with this condition. I went through 2 days of tests and all the data collected showed that my heart wasn't accepting the medication. I am taking 100mg of Atenolol and 120mg of Verapamil and have felt horrible.

    I was all for the Alcohol Ablation but they have only done 26 procedures at Mayo Clinic. You are correct about the long term statistics not being there. This procedure is a controlled MI. Most people know that those who have MI's are prone to having more severe ones later in life. I have chosen to have the myectomy done and done at the Mayo Clinic. I have an aunt who had this procedure done in 1975 and she is now 46 and has led a very normal life. She was told she WAS a patient with HCM. Now she is a post myectomy patient who no longer has this condition.

    The myectomy has a very low mortality of 1-4%. I was diagnosed with HCM when I was 18. My athletic life halted. Now I see nothing but better things to come in the future.

    Sincerely,

    Phil

    ps/ Does anyone know of any financial assistance available for heart patients

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Myectomy]

    Author: Amy Woods (164.119.203.---)

    Date: 01-25-02 10:24

    Tim, I had the alcohol ablation when I was 24, and have had absolutly no problems since then. I'm on no medications and the pacemaker they put in 3 yrs before the alcohol ablation has been shut off. (I am now 29)

    Before the procedure I took all the meds you mentioned and had all the same side effects. They got to the point of being intolerable. And like I said, they gave me a pacemaker that didn't help much.

    I believe the alcohol ablation to be my life saver. The risk was so much less than having the myectomy. Your doctor is right, there are no long term studies. But I guess I'll cross that bridge if it comes. Right now, for all intents and purposes, I'm healed. Please keep in mind the myectomy is open heart surgery with all the complications and risk that go along with that kind of MAJOR surgery. The alcohol ablation is just like having a heart cath. I was in the hosp. for about 2 days, and back to work part-time a week later.

    For me it was a no brainer, I was willing to risk what MIGHT happen in the future. I didn't want open heart surgery at age 24!!

    Do your research, ask the questions, get another opinion or two, and PRAY! What would God have you do? Good luck and God bless you.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Myectomy]

    Author: Jerilyn (---.tnt3.joliet.il.da.uu.net)

    Date: 01-30-02 19:29

    Hi Amy,

    Tomorrow I plan on calling my doctor and asking him to start procedure of setting up for a myectomy for me. He feels it is the way to go and I am finding it difficult to get information about the alcohol ablation procedure. Specificly, who does this procedure and were can I get information about seeking out this treatment. I guess what I am asking is, where and who did your A/A procedure?

    I apprecite any info you can give me.

    Thanks, Jerilyn

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Myectomy]

    Author: Midge Rollins (---.obmo.socket.net)

    Date: 01-30-02 21:31

    Tim, I am 55 and had the myectomy done at age 35 at Mayo clinic and am still followed there, the myectomy is still considered a success for me. I have developed some other HOCM side effects but they still consider the myectomy a success.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Myectomy]

    Author: Tim (---.demon.co.uk)

    Date: 01-31-02 16:56

    Dear All

    Thank you all for your thoughts and experiences, they have helped a lot, just knowing there are others who are going through or have gone through the same things is great. I spoke to my consultant on tuesday and I have decided to go for the myectomy, which I am told is going to be in the next 1-2 months.

    I am now waiting for an appointment with the surgeon and feel very confident about the centre I am attending who average one myectomy a month.

    So I will let you know how I get on!!

    Yours

    Tim
    NOTE: This is a post from the previous forum message board.

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