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  • ablation questions

    [ablation questions]

    Author: Susan Tyrrell (208.35.56.---)

    Date: 08-12-02 09:32

    Hello again. Well found out that my septem has grown again even after a septal myectomy in 1989. Going this Friday the 16th (if insurance approves) for one more attempt at the alcohol ablation for Dr. Lakkis at Baylor Heart in Houston.

    I was one of the first of the five who had this done in around 1997 when this procedure was relatively new. Sadly it was not able to be successufully done on me. So here we go again for one more try, before I go to the extreme and have the myectomy done again which I WILL HATE, did the first time. But I do have to admit after recovery I felt great for quite a few years. Anyways sorry I am getting off track. I just want as much info as anyone has on the ablation and what am I in for. As I said, the first time was not successful, so we are hoping very much this one will be. Thanks again for your time and input.

    Sincerlely,

    Susan Tyrrell

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

    [Re: ablation questions]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-12-02 14:20

    Dear Susan

    I'm so sorry that you have to go through all of that again. I would wander through the old threads here as there are a lot of ablation posts and I'm sure that people will post their experiences here for you, too.

    It is my understanding that it is much less of an ordeal than the myectomy as it is not open heart and sometimes it is even out patient.

    take care

    Sarah

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

    [Re: ablation questions]

    Author: susan (---.179-106.vldsgacbds.dial.optilinkcomm.net)

    Date: 08-12-02 20:39

    hi susan,

    i had my ablation in 97 also at baylor. so far so good. dr. spencer did mine, i have had almost no regrowth, just what they tell you to expect. good luck and best wishes.

    susan

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

    [Re: ablation questions]

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

    Date: 08-14-02 09:51

    Susan T -

    I have emailied you directly.

    Lisa

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

    [Re: ablation questions]

    Author: Susan Tyrrell (208.35.56.---)

    Date: 08-14-02 20:16

    Lisa,

    Thanks for emailing me directly, but I didn't get it for some reason.

    SORRY.

    Susan T

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

    [Re: ablation questions]

    Author: Giovanni Battaglia (---.dialup.tiscali.it)

    Date: 08-16-02 13:56

    Hi everybody,

    My name is Giovanni and live in Italy.

    My 4-month son, Alessandro, has been diagnosed with non obstructive hypertrophic cardiomyopathy; his septum is around 1.4 cm thick and unfortunately is not showing signs of spontaneous retraction. The specialist at the Bambin Gesu' Hospital in Rome foresees a heart transplant for Alessandro, but as far as I know this wouldn't be a solution since rejection is always behind the corner, so he would have to deal with lots of drugs to avoid the risk, not to mention the risks involved in the heart transplant itself.

    I heard about myectomy and alcohol ablation, and talked about it to the specialist, but she doesn't seem to consider them as valuable options, and she didn't give explanations on the reasons of her attitude towards these treatments.

    Would anybody please tell me, according to your experience, if alcohol ablation or myectomy are as good as a heart transplant, and most of all, where are the major centres for treatment of the hypertrophic cardiomyopathy on a worldwide scale ? I've read about the children's hospital in Boston. Would my son be allowed to take an overseas flight in that case ? Thanks to all of you.

    Giovanni Battaglia

    Rome

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

    [Re: ablation questions]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-16-02 14:59

    Dear Giovanni

    THe HCMA can help you find a pediatric HCM specialist who can evaluate your son's situation. There is a UK-based HCM support group and there are some great people in London, so I would try them too. cardiomyopathy.org. I don't know the pediatric centers off the top of my head, but Lisa does. I've sent your post to Lisa, our president, and hopefully you two can set up a phone appointment to talk about your situation.

    IF your son is stable, he should be able to fly anywhere assuming the doctors say it is ok.

    Ablations, myectomys and transplants are all very different. The ablation uses radio frequencies or alcohol to kill parts of the heart and a myectomy is a surgery to reduce the septal wall thickness --usually done only to remove obstructions. The transplant is obviously the most difficult but most effective since you get a heart without any HCM at all. It is not possible to tell you over the internet what is the right thing for your son; only an HCM specialist can do that.

    I wish you all the best and keep us posted. Please e-mail [email protected] your address --mail and e-mail, and phone, so Lisa can try to reach you.

    take care

    Sarah

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

    [Re: ablation questions]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-16-02 15:00

    Dear Giovanni

    THe HCMA can help you find a pediatric HCM specialist who can evaluate your son's situation. There is a UK-based HCM support group and there are some great people in London, so I would try them too. cardiomyopathy.org. I don't know the pediatric centers off the top of my head, but Lisa does. I've sent your post to Lisa, our president, and hopefully you two can set up a phone appointment to talk about your situation.

    IF your son is stable, he should be able to fly anywhere assuming the doctors say it is ok.

    Ablations, myectomys and transplants are all very different. The ablation uses radio frequencies or alcohol to kill parts of the heart and a myectomy is a surgery to reduce the septal wall thickness --usually done only to remove obstructions. The transplant is obviously the most difficult but most effective since you get a heart without any HCM at all. It is not possible to tell you over the internet what is the right thing for your son; only an HCM specialist can do that.

    I wish you all the best and keep us posted. Please e-mail [email protected] your address --mail and e-mail, and phone, so Lisa can try to reach you.

    take care

    Sarah

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

    [Re: ablation questions]

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

    Date: 08-16-02 17:15

    Giovanni -

    I am sorry to hear of the diagnosis of your son and understand that creates a great deal of stress and confusion on you and your wife. I will do my best to help you understand some of the treatments as well as some other possibilities other than HCM that may be the cause of the problem.

    Alcohol ablation and myectomy are STRICKLY for the treatment of obstruction. You have stated your some is non-obstructed - therefore this is not an option at this time.

    Transplant is an option but only if your son is extremely ill and this is rather rare in HCM - only about 2% will need a transplant.

    If in fact this is a true case of HCM several medications may prove helpful to the overall function of his heart and these should be discussed with your doctors.

    I will say that earlier this month I heard from a young man who was diagnosed at the age of 6 months...he is now 25 years old and doing well

    You should be able to receive quality care in Italy.

    Your son may not have true HCM, his heart may be thick from other causes.

    If your wife had gestational diabetes- -children born to these mothers show hypertrophy that by 3-4 months of age disappears.

    Your son may have a metabolic disorder such as Fatty Acid Oxidation Defects,

    MCAD: Medium Chain acyl CoA Dehydrogenase, and several other disorders.

    Noonans symdrome - It is often associated with congenital heart disease (most of which is HCM) and short stature.

    I only present these items as options you may wish to discuss with your doctor.

    I would suggest you contact the CARDIOMIOPATIA IPERTROFICA --the web address is http://www.cardiomiopatiaipertrofica.it/

    if you have further questions please let us know.

    Best wishes to your entire family,

    Lisa Salberg

    HCMA

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

    [Re: ablation questions]

    Author: Giovanni Battaglia (---.dialup.tiscali.it)

    Date: 08-17-02 09:20

    Dear Lisa,

    thanks for your precious answer. Until today no one had ever told me that myectomy and alcohol ablation were conceived for obstructive cardiomyopathy only, though I don't undrstand why. I had hoped for alcohol ablation for my son because heart transplant sounds really bad, and as I said before you have to keep assuming lots of drugs the rest of your life, according to what I've read this in the Boston's Children's Hospital site.

    You state that only 2% of patients eventually need heart transplant, and this is encouraging news to me, as well as it's good to read about the 25 year old boy diagnosed with HCM when he was 6 month old. On the other hand, I learn from the Children's site that the patient conditions may worsen fairly quickly, and from you that the above discussed alternatives are only viable in case of obstruction.

    I should reckon (maybe) that a heart transplant is the only surgical option for my son. Another specialist told me that the assumption of drugs such as beta blockers involves too heavy side effects for an infant, to the point that surgical operations would be preferable.

    As regards my son's schedule, the specialist suggested that a heart biopsy (which must be a risky thing) may be necessary this fall because the source of the HCM should lie in the heart itself. Indeed the diagnosis indicates this is a case of hypertrophic cardiomyopathy. My son's left ventricle and septum are both enlarged, and as a result the blood finds it difficult to access the left ventricle, but flows away well. In order to investigate the possible causes of it, my son has already undergone muscular biopsy, which revealed no metabolic source of his cardiomyopathy. Furthermore, my wife's pregnancy was absolutely perfect. No exam (including amniocentesis) has ever given us reason to worry, and she didn't have diabetes. All of us parents and siblings had an echocardiogram in order to reaveal possible hereditary causes, but none of us showed heart defects.

    Perhaps the specialist who's following my son thinks that it's better to add my son's name on the heart transplant waiting list rather than wait and see, but this is only my opinion.

    Would you still think about a spontaneous retraction at this stage, even though diabetes was not the cause of my son's HCM ? I'm hoping he'll be able to get out of this nightmare, better if by his own means. He's now growing at a more than acceptable pace, they say, (about 600 gr. per month, he weighs 6,100 kilos) and seems absolutely normal, except for the fact he happens to sweat visibly (not always, in truth) when drinking milk.

    I wish all the best to all HCM patients here.

    Thanks again for your attention.

    Giovanni Battaglia

    Rome

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

    [Re: ablation questions]

    Author: Giovanni Battaglia (---.dialup.tiscali.it)

    Date: 08-17-02 09:30

    Dear Lisa,

    I forgot to mention that no gradient was signaled during the echo, I suppose this is a good thing, isn't it ?

    Giovanni Battaglia

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

    [Re: ablation questions]

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

    Date: 08-17-02 11:32

    Giovanni,

    I simply gave the options of medibolic issues to ensure that all possibilities have been checked. We have a great deal of children who are on beta blockers, calcium channel blockers and even antiarrythmic drugs...all are doing very well. Children do tolorate these drugs very well and most have little effects on developement.

    If your wife had a normal preg. then, no I do not think that the hypertrophy will go way. However, your son may grow and the growth of the heart may keep track with the rest of him, therefor it may not become "larger" or "worse", it may simply stay at the same level of hypertophy, although the change is there that the heart will grow adn become thicker or even develop obstruction.

    I agree that transplant is not a simple solution...the medications related to transplant can be rather harsh. It is a good solution for some and should be held out as the final option.

    To understand why myectomy and ablation are not options you must understand that this is a disease of cell structure and therefor cut or ablate what you will the cell structure is still there and is still wrong. The cell structure of the heart leads the heart to become thick and may create rythm problems. So you can remove a piece of the heart but the rest remains with the same base structure. The purpose of myectomy/ablation is to open the outflow tract of the heart .

    Most people with HCM live normal life spans, while it is true that those

    diagnosed early have a greater risk of adverse long term outcomes, quality life is very possible for these children.

    I suggest you contact the website I have noted above.

    Best wishes...and a big hug to your sweet little boy!

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

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