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  • Intro

    [Intro]

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

    Date: 06-16-02 12:45

    Hello,

    I am 44 years old. I have obstructive HCM and was diagnosed in January 2001 after a case of syncope, although I have known about a murmur and left bundle blockage for 15 years. After another sycope a month later, I had an ICD put in just in case. No EP study was done at the time because of my wieght. I also had bariatric surgery and have lost 175 lbs. I was doing fantastic on attenenol until the end of April, forgetting I even had an ICD.

    Unfortunately, I had another syncope edisode going to my seat at a NBA playoff game and then again on a treadmill a week ago. It appears that my problems are exercise induced since my obstruction gradient (35?) on resting is not that bad.

    Since I already have a pace maker with the ICD they are going to try DDD pacing next week. However, since I am already being paced the Docs do not hold out too much hope. The next step is ablation or mysectomy. If anyone has any help in how they decided which way to go, I would appreciate it.

    By the way, 15 years ago when they first discovered the murmur and the blockage they told me 99.9% change it will never be a problem. I wish I had this much luck on the lottery.

    Jerry

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    [Re: Intro]

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

    Date: 06-16-02 15:23

    Here is some information on the comparisoion from "Up to Date" from my hospital medical library.

    Ehtanol ablation camparison with Myomectomy.

    Both Surgical myomectomy and ethanol ablation reduce LV outfflow tract obstruction and improve New York Heart Association classes I through IV with HMC.

    As an example one nonrandomized study compared the efficacy of these two techniques in 41 patients undergoing ethonal ablation and 41 matched patients undergoing surgical myectomy.

    The incidence of complete heart block was higher with ethanol ablation ( 22 versus 2 percent), but the use of contrast echocardiography and slow ethanol infustion reduce this risk. Surgery was assoiciated with a greater need for medication and an increased incidence of mild aortic reguritation. However, there was no differences in the hemodynamic or functiional out come at one year in these patents.

    Although the lon-term outcome with these two approaches are the same the are advantagees to each one as listed below.

    Ethanol ablation advantages include:

    1. Avoidance of Cardiopulmonary bypass surgery and its associated risks; this is of particuler importance in elderly patients. (It is done through a Catheterization procedure not a surgery.)

    2. Possible shorter hospital stay

    3. Shorter recovery time

    4. Less Expensive

    Surgical Myectomy advantages include:

    1. More immediate and complete relief of resting and provoked obstruction and concamitant regurgitation

    2. Smaller incidence fo complete heart block requiring a pacemaker

    3.Excellent long-term results (>20 years); similar data with ethanol ablation are not yet available.

    4.No risk of coronary dissection or unwanted myocardial infarction.

    5. Absence of serious arhythmia during long-term follow-up

    6. Ability to treat other concomitant problems possibly during the same surgery.

    After much rescearch I choose the ablation because this was best for me. I did go into complete heart block. I had a temporty pacer in and come throught it in about 12 hours just fine. ( my understanding is that only about 30 percent of the patients experience this problem). I now have a Pacemaker/ICD impanted which gives me a great deal of peace of mind. My only problem was that of a large septum (33mm) that needed reducing because of many HMC symptoms. My NYHA class was a three and one half. ( number one being mild symptoms and working up to number 4 with extreme symptoms of SOB, Angina ect.

    I am very pleased with my results and continue to improve each day.

    This is a big decision for each of us to make. We are all very diffenent with special needs. Please, just make sure you look into all your options so you can make an informed decision. Find a specialist you can trust and make sure he goes over each option with you. Don't be afraid to ask questions. If the Doctor has your best interest in mind he will take the time to help you sort through all of this. If he dosn't get another doctor.

    Hope this helps. Good luck with your search into the answers. It takes a lot of time and effort to sort through all of this, but for many of us, we need to be a part of the "plan of care", and the decision making process. For others if you choose to follow your doctors thoughts, than that's great too. Each of us has to go forward in our own way. I wish you well.

    Patricia Grall

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    [Re: Intro]

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

    Date: 06-16-02 19:16

    Further data re "ASA" vs. myectomy -

    The long-term results of the scar tissue are not yet known on alcohol septal ablation, due to the fact that any myocardial infarction (heart attach) causes pro arrthymic tissue to form, it is highly likely that the tissue from ASA is also prone to arrthymia.

    Regarding the cost factor between the two procedures. It is not always the case that ASA is cheaper then myectomy, I am aware of several ASA that have created severe complications therefore costing as much as 3 times as much as the myectomy would have cost. Further, I am also aware of many ASA that needed to be “redone” therefore the cost is equal to or greater to myectomy.

    Due to the lack of years of experience Alcohol septal ablation, I think it is wise at this time to only use this procedure in the older population (55+). The outcome for young patients with myectomy is very good and something that we have a great deal of experience with.

    A Slight history lesson:

    In the early 1990’s a novel approach to the treatment of HCM was introduced with great fan fare and excitement, Dual Chambered Pacing (DDD). In no time the numbers of myectomys dropped and the numbers of pacers implanted went through the roof. According to one or two published articles, patients reported feeling so much better as soon as the device was in, it was amazing. Soon after several other research centers conducted random, double blind studies to determine if Dual chamber pacing really was the miracle some reported it to be. The studies implanted the pacemaker then either turned it on for 3 months, then off for 3 months then on for 6 months. Well – it turned out that many patients did report feeling better even when the device had never been turned off. Interestingly many patients reported feeling very good for the 1st year, then nearly all returned to their original condition. The only group of patients that has statistical improvements were older women, there treadmill time and oxygen consumption improved after the device was implanted.

    Why have a given a history lesson – for one purpose – to remind you all to be VERY careful when choosing your treatment options because sometimes if it looks too good to be true, it most likely is.

    Many aspects of ASA remind me of the DDD pacing era, specifically the “its cheaper and easier” portions.

    I remind you NOT EVERY center can (or should) perform some of these procedures, PLEASE consult specialists. I have seen the after effects of non specialty centers work, you do not want to do that to yourself, you have 1 heart treat it well.

    I am sure this will spark some conversation.

    Best wishes to all,

    Lisa Salberg

    HCMA

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

    [Re: Intro - DDD Pacing]

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

    Date: 06-17-02 00:27

    Hi Jerry,

    Though the history of DDD Pacing has seen mixed results, I think it's worth a try, especially since you already have the device in place. In my case, I had a resting gradient of over 100 and with exercise it was considerably higher. Strangely though, I had no symptoms. Since I was a candidate for an ICD, the HCM specialist recommended trying DDD pacing, which he believed would reduce the gradient by 50%. Suprisingly, the gradient went to near zero, mitral regurgitation was significantly lessened, and my harsh murmor became very slight. This all took place only several months ago so I can't vouch for long term effects, but I'm very pleased with the results thus far, and the doc's were amazed at the results.

    Do you know the measurement of your exercise gradient? I would think they would have measured this, especially since you suspect your problems are exacerbated with exercise. I'd be interested in knowing how the DDD pacing works out for you.

    Good Luck and keep in touch.

    Bob

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    [Re: Intro - DDD Pacing]

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

    Date: 06-17-02 07:51

    Bob - reDD pacing

    you make a very good point, yes gradient is normally reduced with DDD pacing yet it appears to do little for symptomatic improvement.

    You stated you had no symptoms prior to pacing, normally treatments are given to relieve symptoms, your case was different you were going to recieve a device anyway so they used a device with 2 features.

    You also bring home my point loud and clear, treatment options MUST be evaluated on a personal basis.

    knowledge is power... stay informed.

    Lisa Salberg

    President

    HCMA

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

    [Re: Intro - DDD Pacing]

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

    Date: 06-17-02 09:27

    Bob,

    I do not know the exercise gradient. The only test with exercise was in January 2001 when I was first dianosed. They will do one on Wednesday if the DDD pacing shows a lower gradient. Otherwise they are not going to do it, since we know what will happen. I guess they do not want me to blackout in the office.

    The reason I am not optimistic is I am already being paced, and was told I have a short AV? I will report on Wednesday.

    Jerry

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    [Re: Intro - DDD Pacing]

    Author: Judy (---.as0.eatn.oh.voyager.net)

    Date: 06-17-02 15:30

    Jerry,

    I have obstructive hcm and had a myectomy in Nov. of 1999. I am 35 years old and had the complete opposite experience with pacing that Bob had. I was not very symptomatic (even with a resting gradient of about 100mm) when my doctors thought we should try pacing. I had an AV nodal ablation in July of 1999 and became so severely symptomatic that I could no longer work and my quality of life was greatly reduced. Whether this happened b/c of the ablation or just coincidence, I will never know.

    After I got so sick and scared, I found Lisa (and the HCMA) and she put me in touch with Dr. Lever at the Cleveland Clinic. I feel better now (2.5 years post-myectomy) than I have in many, many years. Like everyone has said - it is a personal decision. My only advice is to make sure that you are getting medical care from a hcm specialist. I'll be glad to share any of my experiences with you if you have any questions.

    Judy

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

    [Re: Intro - DDD Pacing]

    Author: Lisa Salberg (208.47.172.---)

    Date: 06-17-02 15:44

    Judy has a great deal of experience in this area, she has been though a great deal with her HCM... AND I should say she looked great when I saw her at the meeting!

    Good luck Jerry and let us know how you do at the Doctors.

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

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