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Alcohol Ablation

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Robbie Find out more about Robbie
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  • Burton Borrok
    replied
    Re: Alcohol Ablation

    Felix,
    It is great seeing you post to the boards often again. I just hope you and Sandy and the kids continue to heal. (I know it always turns into a family project.)

    How are you doing with the half days of work – or have you returned to a full schedule already? Best wishes.
    Burt

    Leave a comment:


  • felixdacat
    replied
    Re: Alcohol Ablation

    I failed to see this thread when it first was posted in January, and when it got refreshed in March.
    Reading through it just makes me so sad.
    The more you learn about the Alcohol Ablation, the more you realize that it is not the Holy Grail of HCM.
    The most knowledgeable Physicians in the world concerning HCM, B. Maron, Nishamura, Lever, all agree that the Myectomy is the 'Gold' standard when it comes to the treatment of symptoms involving HCM.
    I just hate these stories of symptoms coming back, second Ablations, follow-up Myectomys.
    To the ablation patients on these boards, my heart goes out to you and I hope and pray that your procedure will work for you.

    Leave a comment:


  • mimoo55
    replied
    Re: Alcohol Ablation

    Hello,

    My husband had alcohol ablation Nov. 2003 and is doing well. I noticed that several of you that have had the procedure had symptoms return. Is that common? Is there anyone that has had it done long term and did not have to have a repeat or myectomy and is still doing well? Just wondering. I have been encouraged with my husband's progress, but am wondering about the future.

    Paula

    Leave a comment:


  • Burton Borrok
    replied
    Re: Alcohol Ablation

    I’m very glad to hear your feeling great. Sure don’t want to lose any Petals.
    Burt

    Leave a comment:


  • petal
    replied
    Re: Alcohol Ablation

    hi
    i had alcohol ablation on dec 17 2003. i was diagnosed in 1997.
    had been slowly going downhill from there .took verpamil for
    most of the time it was not helping much after awhile. one set
    of doctors wanted to do mytrol valve replacement with a machinal
    valve. did not offer any other treatment. got a second opinion
    and had the ablation. i am 60 years old and a tax preparer so
    during tax season i work about 80 hours a week. i feel great.

    petal

    Leave a comment:


  • CardiacRick
    replied
    Re: Alcohol Ablation

    The Jam. I can realate to the story. I too was a victim of a area that was targeted to small. Although my septum was reduced from 32mm-18mm from my first ablation, I still felt crappy. My septum looked pregnant. Now I am a good solid 30mm again and about to have my second ablation, but now I am considering a myectomy.

    Leave a comment:


  • Lisa Salberg
    replied
    that character Dr. Wigle.

    You have that right.
    Lisa

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  • Tara
    replied
    Hello
    I hope that everything is going well for you post your ablation. I glad to hear that my story has helped you along the way.
    At the time that i was diagnosed I was living in Britich Columbia attending school. By doing some research had found that Dr. Wigle was the best HOCM specilist that Canada had to offer, I immediately went to him. This was all at a cost as he was across the country. During the two years that I had several complications I became a frequent flyer. During this time I also had to withdrawl from school twice. My life at that time was is choas. I have now moved to Toronto where I am still trying to obtain a degree, that I started many years ago. I am now much closer to my family and that character Dr. Wigle.
    I wish you the best
    Tara

    Leave a comment:


  • THE JAM
    replied
    Hello Terra. I'm pretty sure I've heard about you! When I was in Toronto getting all the info on the S.E.A., one of the questions I asked were "in all of these operations, have you had any that went wrong". "Well....." then your name came up. They explained to me, in retrospect, that they felt they didn't do enough, that they didn't target a big enough area. They said every time you had a problem you had to see the same doctors in Toronto that treated you, which is difficult, (did you have to fly?) and also that you were a student and all these interuptions and problems you were having were recking your life, so instead of giving the S.E.A. another shot, you opted for the myectomy, which they have much more experience in doing, to get it over and done with.

    Your story is one of the reasons why I chose the S.E.A. surgery, because, like you, if the S.E.A didn't work, I could always come back for the myectomy. A backup plan if you would.

    Funny thing, during the procedure, they did it twice. They did the first first down a big artery, but after that they felt it wasn't a big enough area, so they went down a smaller one and gave another shot to further decrease the blockage. I can't help but wonder if they didn't learn something from you that helped me.

    Leave a comment:


  • Tara
    replied
    ablation

    Hello
    I am sorry to hear that you are beginning to have symptoms again. I know how that feels. To this day I continually wait for my symptoms to return. I had both of my procedures done in Toronto, Canada.

    Leave a comment:


  • Robbie
    replied
    Alcohol Ablation

    Tara, I am 50 and had the alcohol ablation Jan.2002. I had it done in S.Carolina. I am starting to have symtoms again. Where was your procedure done?

    Leave a comment:


  • Lisa Salberg
    replied
    That is the short version I am sure... sounds like you have had a difficult time ...I hope that is all in your past
    Best wishes,
    Lisa

    Leave a comment:


  • Tara
    replied
    abation/surgery

    Hi
    I was diagnosed at the age of 24 at that time I was given medication as a first step. The medication was not working for me and I was given the option of having either the ablation or the surgery done. So in feb 2000 I opted for the ablation. I felt great afterwards. As time wore on I began to feel worse, to the point that I could not walk to the bathroom without being short of breath. At that time most of my days were spent sleeping. It was no way to live life. So in Nov 2000 I had the myectomy done. Due to having both surguries done I had a pacemaker implanted. I am now drug free and have been feeling well since. Thats the short version of my story.
    Tara

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  • Lisa Salberg
    replied
    Tara -I see you have had both procedures in the same year... this is a bit unusual? Whats the rest of the story (there is always a story )
    Lisa

    Leave a comment:


  • Tara
    replied
    ablation

    Hi Robbie
    I am 2 years post the ablation and myectomy. Any questions you have feel free to ask.
    Tara

    Leave a comment:

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