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  • Test Results

    [Test Results]

    Author: Jerry Salzman (---.indy.rr.com)

    Date: 06-19-02 15:51

    Hi All,

    The DDD pacing was a great failure. It did nothing for me. They did an echo baseline, echos with new pace setting, and finally echo with exercise (bike so they could do the echos as they went). The gradient was only 24 at rest. It jumped to 70 on the bike and my heart rate only got to 108. I'm sure I do alot more on the treadmill.

    The doc gave me 3 choices. Either live with, ablation, or myectomy. Some good news is you can tell the blockage very destinctly. It looks like I am a good candidate for treatment. I see the ablation doc tomorrow, but have to wait for a surgery consult until 7/11.

    By the way, they are doing the ablation here in Indianapolis, but they have only done 10 cases.

    Jerry

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

    [Re: Test Results]

    Author: Patricia Grall (---.dwave.org)

    Date: 06-19-02 17:49

    Hi Jerry.

    The good thing is they are telling you they can do something for you. If they feel an ablation is for you and you trust the doctor than that is great. My doctor had only done 18 and all went extremely well. He has since done four more. Only one person died from other complecations.

    If you have any questions or just want to talk, email me or call me at the numbers below.

    715-842-2033

    [email protected]

    This could end up giving you a much better quality of life. My thoughts are with you.

    Patricia Grall.

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

    [Re: Test Results]

    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 06-19-02 23:28

    Dear Jerry

    Have you talked to Lisa about your situation yet? Please call the office (973-983-7429) if you haven't. I think you will benefit from her knowledge of your options.

    I'm sorry the DDD didn't pan out.

    good luck

    Sarah

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

    [Re: Test Results]

    Author: Lisa Salberg (208.47.172.---)

    Date: 06-20-02 12:50

    I will address a few issues on this topic:

    1. Jerry - have you seen a doctor who specializes in HCM? Have you evaluated all medical treatments?

    2. Pat - I have seen MANY doctors, who for the most part are very good, "explain away" reasons for deaths that may or may not have resulted from procedures they have preformed. I am VERY cautious when I hear a story like that which you shared - 20 procedures and only one death - from complications . Frankly thoses stats are far worse than surgury.

    If you recall the TV show Hill Street Blues -

    Be careful out there!

    Lisa

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

    [Re: Test Results]

    Author: Patricia Grall (206.176.192.---)

    Date: 06-20-02 14:45

    Jerry, Lisa and Sarah are absoluty right. Look into all your options. Lisa, I shared my knowledge on my ablation and answered his question honestly. I am fortuante the excellent doctor I have was as honest with me. I hope Jerry finds the best procedure and doctor possible for him withyour help. But still I can't help but wonder how many deaths there were and the odds when they first started doing myectomies?. Myectomy is not the answer for everybody.

    Is is great that you two are there to give out the proper information. Keep up the good work.

    Patricia Grall

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

    [Re: Test Results]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 06-21-02 19:38

    Early myectomies did have a much higher risk than they do today, and if the procedure is done in the wrong center the outcomes can be very poor. Yes there is a learning curve to everything. You are right that myectomy is not right for everyone... and obstruction is not something that must be removed in every person.

    I am concerned that the number of procedures - both myectomy and ablation - may be higher than it needs to be..if you look back a few years there were an estimated 100 myectomies done in this country... Now there are over 150 myectomies and around 100 ablations a year. I can not help but wonder why the increase in procedures. While there may be a very good reason, I as a patient advocate, can not help but wonder why so many people need procedures today that would not have been done just 5 years ago.

    Thanks for all the input an wonderful conversation.

    Lisa

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

    [Re: Test Results]

    Author: Patricia Grall (---.dw.net)

    Date: 06-22-02 12:03

    Good Point. That's what I like about you guys. You question so many things. I wish more of our patients would do the same. I am a true advocate for education. Especially around the fear everyone feels prior to new procedures.

    I am still out on the results from my own ablatiion. I am not ready to state how much improvement I have had. Would I have been better off just living with my symptoms and using medications to relieve them? As with me I was told the medications were no longer doing the job, hence the ablation. I continue to assess my self and my activities daily and in time I willk know If I made the right decision.

    As I said keep up the god work and the great information coming at us. Your a classy lady.

    Patricia Grall

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

    [Re: Test Results]

    Author: Cynthia (---.nas48.philadelphia1.pa.us.da.qwest.n)

    Date: 06-23-02 17:02

    I had surgery for HCM in the mid-1970s. I am not sure if it was myectomy, could have been something else they had then. From what I recall, the odds were only about 50-50 then, and a long recovery time. A number of people assure me that things have changed drastically since then.

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

    [Re: Test Results]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 06-23-02 21:14

    Yes, that was a myectomy - and yes the odds have improved a great deal, so has technology, regardless of procedure.

    Lisa

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

    [Re: Test Results]

    Author: susan (---.177-226.vldsgacbds.dial.optilinkcomm.net)

    Date: 06-30-02 00:42

    i had my ablation five years ago. i had been treated with drugs since i was 19 years old. after i had my second child at age 30 my doctors discovered that there was more damage done to my heart. i had a pace maker implanted when my son was 6months old, it didn't do the trick. i had my ablation 6months after that. i was drug free for a month. now i use my pacemaker to keep my heart rate from going over 100 beats a minuet and am taking 50 mg of tenormin twice a day. keep in mind the ablation they were doing five years ago has and is still being fine tuned. they are still working on perfecting it. hopefully there will be something new for us to try in the near future, something that will relive all the symptoms. wouldn't that be wonderful.

    i would love to be able to have another ablation, i was one of the research patients, one of the first 15 to have it done in the US. my specialist and his nurse keep me informed and in the loop very well. i have an appt with them july the 8th to see if i am eligible for the procedure again. i hope i am, i would jump in with both feet. good luck and God bless.
    NOTE: This is a post from the previous forum message board.

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