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Please help me find current statistics on Septal Ablation

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  • felixdacat
    replied
    Re: Please help me find current statistics on Septal Ablatio

    Kudos to Lisa for an excellent explanation of the official concerns involving Ablations (earlier in this post).
    Like many, I want something as less invasive as an ablation to be a viable option. The average cardiologist (who usually is not up to snuff on HCM knowledge) wants the less invasive procedure to be the solution. However, once you do the research, you realize that unless you can’t handle major surgery because you…
    a- are older
    b- have complications
    c- have severe psychological worries
    …you should have serious doubts about these ablations.
    My Myectomy is in 3 weeks.

    Leave a comment:


  • Linda
    replied
    Re: Please help me find current statistics on Septal Ablatio

    Wade, You've given a lot of great suggestions. This will be the second year we've used the tax-exempt Health Care fund. You can use it to cover deductables, certain OTC's, etc. The challenge is deciding the amount to put in the account. It's "use or lose" for the year for us.

    Stats tell quite a story, and should be checked, but I hope you are able to focus more on the benefits of possible surgery rather than the stats with the valve repair. I think you will have a few people posting to let you know they've had both and done well. I know of a few. You'll be in great hands at Cleveland. Best wishes, Keep us posted. Linda

    Leave a comment:


  • wade
    replied
    Re: Please help me find current statistics on Septal Ablatio

    Keith,
    I've also been weighing my options for a possible future procedure. My last echo hinted at a ruptured mitral valve cordea, so my decision is easy... if they cut me open for a myectomy they can do valve repair at the same time if needed. I do know that the mortality rate when both procedures are done is significantly higher than just one by itself, but I guess that's to be expected.

    I've decided to make an appointment at Clevland Clinic to get a second opinion and get the ball rolling, although it could be a financial challange for me too. In hindsite there's a couple of things I could of done that may have helped:

    - put asside extra money in a tax exempt Health Care fund. I think alot of companies let you deduct directly from your pay check.

    - took a closer look at an indemnity plan during my last enrollment. My HMO is very stingy with out of network rates. ( although I think changing plans with intent of having a certain procedure covered could be a no-no...my state has some very strange anti-fraud laws. plus I'd wind up paying more for routine care anyway.)

    - done a better job keeping my PCP, cardiologist and specialist on the same page. A PCP can be a big advocate in the event of HMO disputes, so I wish I'd of kept him more in the loop. He still seems pretty clueless about HCM.

    Sorry for rambling...your post really got me thinking about $$$. In any case, thanks for starting this chain, raw stats can be a great tool in deciding between options.

    Take care,
    Wade

    Leave a comment:


  • Sarah
    replied
    Re: Please help me find current statistics on Septal Ablatio

    if you are having your testing done by the Dr. Seidman group, i believe the consent forms indicate that your results are confidential. they are also the only group i'm aware of. they have my family's blood, too, but i was told that i may never get my results or it may be a few years since it is a research project. there is no simple test --they are mapping most of your dna to do this.

    genetic testing of HCM is still in the research stages and there is -at this time- no official correlation between a specific mutation and sudden death.

    as for what happens if the insurance co finds out, i think they passed a law or are talking about a law to protect people from exclusions or denials of coverage due to genes alone.

    at this time, knowing your mutation will not alter your treatment options, choices, etc. too early yet.

    s

    have your daughter screened. never too young or too old.

    Leave a comment:


  • keith
    replied
    Re: Please help me find current statistics on Septal Ablatio

    Although 1 in 500 people have hypertrophic cardiomyopathy, I have never actually known anyone who has it besides myself. Over the past few years I have read the 4hcm.org page many times but I guess I never noticed the discussion icon until last week. This disease has had a tremendous impact on my entire life and for the first time I have a direct connection to people who are in the same situation. Another big thank you to everyone who contributes and to whoever has created such a great interface.

    Since I was 5 yrs old I have known that I had hcm (they used to call it Ideopathic Hypertrophic subaortic stenosis). My heart murmur from birth was a big red flag but not until the cathetarization when I was five did they make a diagnosis. I always believed that I was the only person in my family to have hcm until last year my sister who is 3 yrs senior was diagnosed. I am now having genetic testing to determine what mutation has caused my hcm. Once my mutation is identified I will be able to determine which parent has passed the gene and also if my daughter has inherited the trait. Does anyone have experience with genetic testing results? How well can it predict risk of sudden death? What are the risks of the medical world knowing a person has hcm even if they have no physical expression of the disease? Is there any other place besides boston that is trying to collect genetic information on hcm patients?

    Should I be moving this dicussion to another section of the forum?

    Leave a comment:


  • Lisa Salberg
    replied
    Re: Please help me find current statistics on Septal Ablatio

    Those specialists dealing with large numbers of HCM patients agree that those under the age of 50-55 years are better off with the "gold standard" treatment for obstuctions - MYECTOMY than having ablations.
    Please read the 2003 ACC consenses documents (located on the newsletter link on the front page of this site) for the offical stand on ablation.
    29 is very young to even concider ablation, the long term risks are still very unclear therefore you may be placing yourself at added risk long term.

    It does not matter where you live, you can seek care at ay center for your HCM. There are several centers doing myectomies with great success. Cleveland and Mayo have long histories and great success with the procedure and New England Medical Center has been very successful in there new myectomy program this year.

    Ablations are being done around the country in many centers, this is creating a problem in tracking the success and complications of these procedures. Many procedures are not reported in the medical liturature, therefore you do not see the "whole picture". We at the HCMA here more stories then are reported on in the medical liturature. We are hearing with alarming regularity of failed ablations and serious symptoms/reactions post procedure. This situations occur far more often then complications due to myectomy occur.

    I would have to say that based on the data in the medical journals, data discussed at recent conferences that ablations in those under the age of 55 should not be the treatment for the reduction of gradients in those with HOCM. Those over 55, may wish to seek out this treatment option.

    Further to address the posting above from Roxann - Myectomies should only be done in centers with a great volume of HCM patients. The mortality rates in these centers is around 1%. In addition, those who have had ablations and have moved on to have myectomies may have additional complications due to the scar tissues of both procedures - however this issue is unresolved in the liturature at this time.

    I hope this helps.


    Best wishes,
    Lisa

    Leave a comment:


  • EpLaurie
    replied
    Re: Please help me find current statistics on Septal Ablatio

    P.S.

    I am also going to investigate the heart block post myectomy. I have not reviewed the literature yet, in detail on this procedure either. But knowing anatomy and physiology of the cardiac electrical conduction system tells me that if indeed, heart block is a possible or common possible complication of this procedure, then the surgical intervention must occur close to the AV node which is the area of the heart that encases the electrical components that could cause heart block. Or the other thing that comes to mind is that surgical intervention may interupt the coronary blood flow to to the artery that supplies the avnode?

    I need to research it and take a look at the anatomy, etc. then I can hopefully give a stronger foundation of fact vs speculation!

    Until then,
    Laurie

    Leave a comment:


  • EpLaurie
    replied
    Re: Please help me find current statistics on Septal Ablatio

    Hi Keith and Reenie,

    Reenie, your theory is interesting. We've never done the septal alcohol ablations in any of the labs I've worked in, that's why I don't comment on them. But several zappers have had them and one gal in particular has had several of them (she was diagnosed as a toddler). So I'm definitely interested in learning more about them.

    Anyway, your theory has peeked my interest. So I'm going to try to educate myself via internet research, then will post my "thoughts" on your theory, based on my years of regular ablation experience.

    It will be interesting to see what this thread yields!

    Thanks for the "food for thought"!

    Laurie

    Leave a comment:


  • Reenie
    replied
    Re: Please help me find current statistics on Septal Ablatio

    Keith, part of the problem with ablation versus myectomy is that you know how much muscle tissure you take with myectomy because you can actually see what you're taking out. With the ablation you can't be positive exactly how the alcohol will disperse through the muscle tissue. If the alcohol disperses differently than expected you might have different results than expected. HCM hearts have pockets of disorganized cells. Not all of the cells are all jumbled up. So, here's my theory. Someone correct me if I'm wrong. If you inject the alcohol, theoretically, into regular muscle tissue and it hits a pocket of disorganized cells, wouldn't that affect how the alcohol works on those cells. And vice versa, wouldn't it react differently if you happen to inject it into a patch of jumbled up mess and then it hit the pocket of regular tissue? My thinking says that regular cells would disperse the alcohol more evenly and fluidly than a bunch of messed up cells, if for no other reason that the messed up cells' lines would be harder to follow. Make sense? So, that said, if anyone reads this and thinks I'm off my rocker, please let me know. These are just my musings on the subject.

    Reenie

    Leave a comment:


  • roxann
    replied
    Re: Please help me find current statistics on Septal Ablatio

    My husband had no symptoms after the ablation. He had heart block after the myectomy-- I would go with the Mayo or Cleveland--and if I had it all to do over again--I definitely would have consulted those folks.
    Again--best of luck--we are all pulling for you!!
    Roxann

    Leave a comment:


  • Sarah
    replied
    Re: Please help me find current statistics on Septal Ablatio

    dear k

    i'm not sure about the heart block, but you can go to any major anywhere you want to --Mayo, Cleveland, etc.

    you can visit their web sites (see links page) for info on making appointments. you insurance will probably treat them as out-of-network, but you'll need to check your policy to see how much they'll pay for.

    my personal preference from all i've read would be for a myectomy at mayo or cleveland. just my 2 cents.

    s

    Leave a comment:


  • keith
    replied
    Re: Please help me find current statistics on Septal Ablatio

    The doctor who has advised having Septal ablation is a hcm specialist out of Boston. The doctor who is tentatively scheduled to perform my ablation has done about 50 procedures over the past 5 years. I expressed my reservations about having ablation considering the higher risk with relation to myectomy. Now I am becoming more aware of the differences in success between low volume and high volume institutions.

    The following link shows statistics published by the Cleveland clinic in Dec 2002 for septal myectomy and alchohol ablation.
    This is the information that I have been going on. From what I understand, Cleveland Clinic is one of the best and highest volume hcm centers in North America.

    http://www.clevelandclinicmeded.com/...pertrophic.htm

    Would it be possible to have treatment at the Cleveland clinic or at the mayo considering I live in NH? After the surgury would I be in any condition to travel?

    Can anyone explain why there would be a higher incidence of heart block with ablation? I have been told that less septal muscle is taken during an ablation because a second ablation could be performed if positive results are not acheived. In myectomy, the surgeon would want to be sure to take enough septum the first time to achieve significant reduction in syptoms. I would assume that taking more muscle would increase the risk of heartblock( but that is not the case).

    I appreciate all of your replys. Thank you.

    Leave a comment:


  • roxann
    replied
    Re: Please help me find current statistics on Septal Ablatio

    Keith
    My husband had an ablation a year ago in January. It was a success--but after two weeks his blockage returned. He was 37 at the time. It was done by Dr. Crispin Davies and Dr. Bruce Shively at Oregon Health Sciences University in Portland, OR. They are doing studies on ablation--they are skilled and have about an 85% success rate--the last I heard. I understand the east coast docs are probably better to consult--but I do have to say that I was very impressed by Dr. Davies--and he is European--so has probably some training from overseas where the ablation originated. We had the option of a second ablation that may have worked--but we opted for the myectomy. I wish now that we had chosen the ablation, since my husband died from surgery complications, but it's really a tough decision to make. I can tell you after the ablation he was back home the next day and back to work in a week--post-myectomy was 3 months until back to work.
    Best of luck to you,
    Roxann

    Leave a comment:


  • Reenie
    replied
    Re: Please help me find current statistics on Septal Ablatio

    Keith, Kay is right. Most doctors don't recommend having the ablation on patients under 50. You might want to consider seeing a specialist. Lisa, the president of this board, has an extensive data base on specialists and would be glad to talk to you. Call her at the phone # at the bottom of this page.

    Reenie

    Leave a comment:


  • Guest's Avatar
    Guest replied
    Re: Please help me find current statistics on Septal Ablatio

    In January of this year my cardiologist told me I needed a septal ablation. Because of my age, I'm 32, and because this procedure has not been performed for many years, I started comparing septal ablation to a myectomy. Upon contacting the Mayo Clinic in Minnesota I found out that they prefer the myectomy over the ablation. The myectomy has a higher success rate and has been performed for many many more years. They only perform septal ablations on older patients or patients who have a risk of not making it through open heart surgery. I opted to have the myectomy and do not regret it at all. I feel much better and am more confident. I believe if I would have had the septal ablation I would be continuously second-guessing if I made the right decision.

    The bottom line is please check into all your options before making a decision. My cardiologist here in St. Louis never mentioned the option of a myectomy to me. If you have any other questions, please let me know. Thanks,

    Leave a comment:

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