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Would you clarify treatment options, please?

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  • Would you clarify treatment options, please?

    [Would you clarify treatment options, please?]

    Author: Karla (---.proxy.aol.com)

    Date: 10-24-02 09:09

    Lisa/Sarah...

    I have been reading the posts on the board in regards to alchol abalation vs. myectomies, and I'm a little confused!

    I was under the impression that there were differing risk factors and/or criteria for determining which procedure should be done. Now, from the current reads, I get the impression that it is simply a matter of choice for the patient.....i.e, invasive or non invasive?

    I also have a few questions about course of treatment....which I thought I understood, but now I'm not so sure.... !!!!

    Do the HCM specialists try and treat symptoms with medication over a certain period of time first? If symptoms are not relieved, do they THEN do the surgery or abalation process? If so, how long do the dr's. wait to see if the meds help?

    What about patients who do not have an extreme thickened septum, but their hypertrophy is concentric or apical and they have diastolic dysfunction and/or obstruction. What about patients who are very symptomatic? Do they have to just live with it until the day comes - if it ever does -that their septum grows thick enough to meet the criteria for a procedure?

    Please excuse my ignorance, but I've got a brain cramp from reading over the boards regarding myectomies and abalation!

    I know you will set me straight!

    Karla

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    [Re: Would you clarify treatment options, please?]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-24-02 09:17

    Karla ... Yes ... there are risk factors and/or criteria for determining which procedure should be done. Once it is determined by an HCM specialist that meds are not working then the Myectomy or Ablation is offered ... but which one is dependant upon your situation (measurements, etc.) If both procedures are offered then yes, you can choose. You are not ignorant! Lisa, Sarah and others will chime in! Also - refer to the last posting by Lisa ... she does a great job of summing up the debate issue!

    http://www.hcma-heart.com/messages/r...&i=5131&t=5098

    It's almost Friday! Smile : )

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    [Re: Would you clarify treatment options, please?]

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

    Date: 10-24-02 09:26

    Karla -

    this is not a cut and dry issue let me try to help you understand.

    At this time in the USA there are different criteria for ablation vs myectomy to a degree - age is the largest factor here, ablation is not done in children and the best centers like to only preform the procedure in older adults (50+), although some centers are doing them on younger people at this time.

    Also if you have ANYTHING other than obstruction - ex. mirtal valve issues or other factors, then ablation is not going to help. However if you have risks that make surgury a problem...ablation is your ticket.

    For those with small septal measurements under 1.8 it is not recommended by most to have an ablation - and if your septum is too big over 3.0 it has also been said that these are not good candidates for ablation.

    While some of the recent articles make it sound like they are the same, they are not. It is not a choice between invasive vs. non it is more complicated than that.

    RE treatment of symptoms - yes 1st step is meds, unless you have a severe obstuction and are highly symptomatic, then septal reduction may be suggested sooner.

    There are some centers that tend to move very fast past meds...I think this is a disservice to the patients as many meds can help greatly..if given some time to work. Nrpace is one that is highly over looked, in fact if you look at some of the studies of ablation most patients were never even given a try on Norpace.

    If you are not obstucted and meds are not working there is little left to do at this point and these people are then refered to transplant...THIS is RARE...only about 2% of those with HCM will get a transplant.

    Meds work but must be altered from time to time to achieve the best results. I wish I had a better answer... I wish I could say that anything we have now is a cure or that a new drug is around the corner that promises something great...but I can not, this is a life long condition...THAT ALLOWS for NORMAL life span in the vast majority of those with HCM.

    Did this help???

    Lisa

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    [Re: Would you clarify treatment options, please?]

    Author: Karla (---.proxy.aol.com)

    Date: 10-24-02 11:29

    Lisa,

    Thank you for clarifying for me - and yes, you helped with your explanations.

    I was confused by all the recent articles!

    I share in your wish; as I'm sure others do, that there was a new drug or cure.

    On a personal note, I just don't think it has 'sunk in' with me yet that this is a life-long condition....I think I'm still riding the 'roller-coaster' of emotions dealing with the fact that hubby has this...

    Thanks again, Lisa - your'e the best!

    Karla

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    [Re: Would you clarify treatment options, please?]

    Author: Susan (---.ceg.com)

    Date: 10-24-02 11:47

    Hi, I just read your post Lisa and I have a question/questions. I have HOCM which lately has been causing me a lot of symptoms. I was diagnosed 2 yrs ago and I am now 50. I go toDr. Asher @ Cleveland. My last visit I did not do too well on the stress echo, they stopped it after 7 minutes due to my blood pressure falling. However, Dr. Asher did not seem concerned about this at all. He did prescribe in addition to the atenenol I now take ( 50mg in morning & 25mg in even.) a new med called cardizam. I took it for 7 days and I have never felt soo bad since having this disease. We altered the times ( taking it alone, taking it with atenenol) but it just made me feel awful. Finally Dr. Asher said to quit taking it and go back to just atenenol. Now I can feel good for about three weeks and then have a bad spell for about a week. Dr. Asher told me last I talked to him was that he wanted to discuss surgery with me ( myectomy). That really floored me! I thought that would be a last resort. My measurements have not changed in the last 2 years ( 2.0 - 2.1) and my he said my gradient is still the same, I am just really symptomatic. Is this not jumping the gun? I have not tried any of the other meds that have mentioned on this board. Right now my decision is to take the 4-7 bad days and adjust my lifestyle to what I can and can't do and live that way till I get worse, then think about surgery. At my age don't I have a good possiblity that this is as bad as it will get? Sorry for the long email but this has been really worrying me now for a few days.

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    [Re: Would you clarify treatment options, please?]

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

    Date: 10-24-02 12:18

    Dear Susan,

    I, too, felt like I was going to die if I had to take another dose of cardizem. It just effects people that way.

    However, I took nadolol (corgard) and disopyramide (Norpace) for ten years and did very, very well.

    Dr. Asher will be honest withou about what he thinks the best course of action should be. However, do tell him that you want surgery to be the absolute last resort, and you want to exhaust medication options before surgery --assuming that there is no urgency for a surgery-- and perhaps Norpace or sotalol (Betapace) are a couple to try and see if they help you. Dofetilide and amiodarone are two more drugs, too, but they should only be considered after everything else due to side effects.

    Everyone's HCM is a little different and there are few generalizations to be made about age and progress.

    take care,

    Sarah

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    [Re: Would you clarify treatment options, please?]

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

    Date: 10-24-02 12:19

    There should be a "sometimes" after "it just effects people that way.."

    Some people do great on cardizem/verapamil/isoptin --some don't. ditto beta-blockers.

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

    [Re: Would you clarify treatment options, please?]

    Author: Lisa Salberg (208.47.172.---)

    Date: 10-24-02 13:16

    Susan, your measurements do not need to change for your symptoms to change. You heart may be working too hard, your heart may be getting stiffer, your system my be getting over worked by your strong heart...there are many things that can alter your symptoms...

    You have quality care at Cleveland and I would talk to your doctor about your symptoms, concerns and all your options...

    Regarding taking the symptoms and learning to live with them...that is your choice, but I will say that those I have kown to do that start to feel much worse rather soon... it is likley better on your symptoms to take action while you have the strenght to heal well.

    Best to all,

    Lisa

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

    [Re: Would you clarify treatment options, please?]

    Author: Robert Hartwell (---.focal2.interaccess.com)

    Date: 10-24-02 19:07

    Susan,

    About one year ago, I too feared surgery and thought of it as a last resort. I felt given the choices (I knew pacemaker treatment was out) that I would continue to take my medications and live with the symptoms. For me it took a whole year to realize that my quality of life was suffering and that I did not want to put up with this any more if I did not have too. Everyone in the world was walking faster than me!

    My local cardiologist was recommending a pacemaker. I got a second opinion from a major medical center in Chicago from a physician who knew a bit more about HCM than my Doc. He recommended surgery. I was planning to go to Mayo for an evaluation from them when I was refered to Cleveland. The confidence of Dr. Lever in confirming that I should have the surgery really helped. Lisa, Sarah and all of the others on this board have also helped me realize that I have made the right decision for me. I still have to admit it is still a bit overwhelming and scary.

    The ultimate decision on what to do is up to you. Get the best information you can to make the best decision. No matter what you decide, I know you'll make the right decision for you! If I can be of further assistance to you please e-mail me.

    Best wishes

    Bob Hartwell

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    [Re: Would you clarify treatment options, please?]

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

    Date: 10-24-02 20:34

    Dear Susan,

    YEAH, what Bob said!

    S

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    [Re: Would you clarify treatment options, please?]

    Author: terri (---.dsl.chcgil.ameritech.net)

    Date: 10-25-02 09:42

    Bob---

    We're in Chicago too. I';m wondering where you went to see the doctor who seemed to know a bit more about HCM than your regular cardiologist.

    Terri

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    [Re: Would you clarify treatment options, please?]

    Author: Lisa Salberg (208.47.172.---)

    Date: 10-25-02 14:53

    Terri - I can help with the Dr. in Chicago...call the office

    Lisa

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    [Re: Would you clarify treatment options, please?]

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

    Date: 10-25-02 16:04

    Susan,

    I also see Dr. Asher and was only on Attenenol. Just because you have not tried all the medicines does not mean others will necessarially help, if tolerated, attenenol is very successful for treating HCM.

    Don't be so afraid of the surgery. Here I am with complications from the myectomy and it still was better than living with the bad days. I was always afraid that I would faint. This fear started ruling my life. Yes the surgery is tough and recovery long, but I survived it and mentally I feel so much more relieved. I am exercising again and I can see my life without HCM ruling it. It was definitely worth what I have and will go through.

    Jerry Salzman

    HCM 8/27/02

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

    [Re: Would you clarify treatment options, please?]

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

    Date: 10-25-02 17:08

    Susan

    Jerry makes a good point that other medications may not work. However, atenolol is only a beta-blocker and not an anti-arrhythmic. The medications I listed are substanially stronger than any beta-blocker (sotolol is a kind of weird beta-blocker hybrid). And some are taken concurrently with beta-blockers.

    I'm not trying to lead you in one direction or anohter, I just thought you should what medications are out there.

    take care,

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

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