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  • florida today newspaper article

    [florida today newspaper article]

    Author: bob varker (---.145.33.65.cfl.rr.com)

    Date: 10-22-02 19:35

    our local newspaper at web site floridatoday.com section G (health)

    has good article about surgery at our local hospital for hypertrophic

    cardiomyopathy patients.

    good article and good info

    bob v

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    [Re: florida today newspaper article]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 10-22-02 19:38

    Thanks Bob!!!

    Here is the web site link http://www.floridatoday.com/!NEWSROOM/healthstoryA33134A.htm

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

    [Re: florida today newspaper article]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 10-22-02 20:05

    Lisa ... are the figures in the article accurate (i.e. percentage of ablation pts receiving pace makers?)

    The HCMA is listed as a resource at the bottom of the article!!!

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

    [Re: florida today newspaper article]

    Author: Julie Petitpas (---.proxy.aol.com)

    Date: 10-22-02 21:07

    This is a great article. Did anyone write a letter to the editor? I did

    Julie P.

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    [Re: florida today newspaper article]

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

    Date: 10-22-02 21:15

    Hold the phone here guys...this may not be such a great thing...these procedures should only be done in the best hands...this is potentially dangerous. I also do not hold out a great deal of value in the opinion of some quoted in this article. Thank you for the heads up but proceed with caution...

    I find it odd that they referance the website yet never called or emailed us for comment.

    On a different topic you will all be glad to know that the next newsletter is very close to completed! my fingers are burning from the 15 pages that went in today!

    I think you will all like this one..tons of up to date data!!!

    make sure your mailing address are in so you do not miss the mailing!

    Lisa

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

    [Re: florida today newspaper article]

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

    Date: 10-23-02 13:25

    This article doesn't mention that the myectomy ---the open heart surgery-- while a major surgery-- has been done for 40 years and is very successful. Ablation is new and sometimes needs to be redone and their is a risk of dying on the table, too.

    Lisa, what is the difference in the risk for dying on the table at a myectomy vs. an ablation? Do we know?

    S

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

    [Re: florida today newspaper article]

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

    Date: 10-23-02 14:22

    I cannot stress enough how important it is to refrain from sounding "biased" about the septal ablation procedure. There is no need to continually compare apples with oranges. They are two different procedures. And, it is a personal preference. Invasive or non-invasive. Ablation or Myectomy.

    With regard to your inquiry on the stats for "risk for death" for ablation vs. mectomy ... How can you compare 40 years of data with 6? Ok ... what were the statistics of deaths from myectomies during the first 6 years it was performed/available? I am not interested in what it is 40 years later ... what was it when it first came out? Are they still performing the Myectomy the same today as they did 40 years ago? Are you telling me there is a 0% chance for death with the myectomy? You didn't mention that above. Have they not advanced their techniques in the way they perform their myectomy? For now … the ablation is improving the quality of life for many individuals and if it was a horrible procedure then it would have been stopped a few years back! If it spoken about with doubt, then why are some of your HCM centers performing the ablation?

    Not everyone feels comfortable with invasive surgery, some people want to try new procedures ... it is up to the person suffering with HOCM to make that choice.

    Lastly, they did mention the Myectomy … "I had a choice -- open-heart surgery, this new procedure or to drop dead," Magruder said. "I had the procedure."

    Again – personal preference! And the article was about a new “experimental” procedure,

    Sorry … I just know comments against the procedure triggers my father. Let’s see where we are when the ablation is 40 years old. It may be more successful than the Myectomy, just as successful, or less effective … we have a long time to go before we can really get down and get dirty with comparing the two!

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

    [Re: florida today newspaper article]

    Author: Lisa Salberg (208.47.172.---)

    Date: 10-23-02 14:56

    Erica - I have to say I am a little suprised at your reaction here.

    Sarah - The mortality rates of myectomy Vs. Ablation are about 1% for myectomy and 3% for ablation However and this is a BIG however both procedures need to be done in the best centers with the most highly trained specialist to have these mortality rates. In the case of myectomy done in a non speciality center the mortality rates are higher than 1% - -however exact numbers are not available in the liturature. With Ablation there is so little data in the liturature at all the only numbers we have are from the Germans and a small number in the USA...IF done in the USA by the best trained docs - Cleveland Clinic (where both procedures are available) or by Dr. Spencer the mortality rate is very low.

    My concern with the article is the fact that it was done in a small center with limited experience in HCM. I agree with the patient selection as she was 70 years old. My serious concern is that small centers around the country are going to attempt more of these procedures and in many cases...over use a very serious procedure. I am not saying that those involved in the care of this patient are not good doctors with the best of intentions, only that it is not possible for all centers to preform this procedures. In fact I am aware of many cases that have caused great damage to the patient and resulted in more extensive procedures having to be preformed.

    I wish the media would look at the larger issue of HCM not just a new procedure that will at best only help a very small subset of patients with HCM.

    I welcome any responce to my views on this matter, if it appears that I have any bias to a procedure, I wish to state clearly to all that this is not the case. OPTIONS are the life blood that the HCMA was created to allow greater access to, so inclusion is always key. In the same vein, what is best for one, may be harmful to others...this may include myectomy, ICD's pacers, ablations and all the various meds available.

    Look at the BIG picture here - -quality of life - -

    Lisa

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

    [Re: florida today newspaper article]

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

    Date: 10-23-02 15:23

    Dear Erica

    There is a risk of dying on the table anytime someone is poking at your heart. Period.

    I am not biased towards or against ANY procedure. I was simply making a point about this one particular article about ablations. The author of the article slants it to sound like no one in their right mind would ever ever ever consider a myectomy, when in fact, there are times that you need one. The article doesn't address what criteria make you a good ablation candidate vs. myectomy candidate and there ARE guidelines for both.

    I think that if you are a candidate and you meet the guidelines and you are at a top center --good for you! Get an ablation. However, be sure you meet the guidelines, be sure the people doing it know what they are doing. And this goes for ANY MEDICAL PROCEDURE AND SURGERY. This is not a recommendation I make only for ablations.

    You need to understand that we don't want ablations turning into the hysterectomy of the cardiac field. Used to be they would just yank those suckers out at any opportunity, but now women are more informed and are able to choose from more options. You don't want people going around having their hearts messed up because someone wants to get in on the next new thing.

    Myectomys and ablations will always always always be compared because that is what the medical profession does. It compares treatments A, B, and C and determines which one works best and injures least. This is the history of medicine in a nutshell. And yes, when ablations have been around for 40 years, we'll see. In the meantime, make wise choices with the best info available.

    Sarah

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

    [Re: florida today newspaper article]

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

    Date: 10-23-02 16:03

    Sarah ... my intention wasn't to come across sounding harsh ... it's just difficult to compare a 40 year old adult to a 6 year old child. I know you were thinking of your HCMers and not trying to sound biased. Both modes of treatment have their advantages and both have their disadvantages ... it all depends on who the doctor is and who the recipient is! It should be left up to the HCM specialist to decide! So long as a specialist performs the ablation ... and I mean a TRUE specialist ... then the statistics for death & complications should be low (provided the patient is also a TRUE match.)

    I guess reading the phrase "dying on the table" upset me ... after all my father informed me today that he confirmed with Dr. Spencer's nurse that he will be coming for his ablation on November 12th ... he made hotel reservations for my mother and I that week in SC ... and picturing him 'dying on the table' really upset me when I read that statement. I am very sensitive to words - I take words very literally. And perhaps I shouldn’t have responded right away. I think all of you who read my posts can tell I am one emotional cookie! I won't denie this!

    I will be by my fathers side with a list of questions ... his cath/echo reports are being faxed to us tomorrow ... and we will know what to ask before he even lies ‘on the table’ and I will not allow him to go through with it (ok ... I will try not to let him go through with it) until all questions have been asked ... all criteria proves that he is a TRUE match ... and all options have been discussed based on his measurements/gradients etc.

    To those of you considering an ablation ... if you do choose to have it done ... please keep in mind that you should have it done by a reputable doctor and check with the HCMA to see what their thoughts are on the doctor you are choosing to do the procedure. This goes for both myectomies, ablations, treatment for HCM, period!

    Sarah ... it was the wording and how I took it ... this had nothing to do with the FLA article ... I couldn't believe someone would even consider having an ablation performed by an inexperienced doctor! It would be like having a proctologist perform your next pap smear! The author was probably late in meeting her deadline ... and didn't have time to do her homework prior to sending the article to press!

    Sorry :’(

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

    [Re: florida today newspaper article]

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

    Date: 10-23-02 16:54

    Dear Erica,

    Sadly, many people are not able to find us or a specialist and read only these news articles and have doctors who love to "play"!

    My words were chosen very carefully. While I try to be gentle when I think it is necessary, it is also important to be very clear about what we are getting into when we are wheeled into a cold, white room full of doctors. We need to be prepared for the downside. Even getting an ICD has a 1-2% chance of death too.

    Many, many times, I step away from the board and reply to something much later when I can see straight. No worries.

    Sarah

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

    [Re: florida today newspaper article]

    Author: Robert Hartwell (144.195.62.---)

    Date: 10-23-02 17:00

    Erica,

    Words are very important and I very much understand your reaction. I recently read the article in Esquire Magazine concerning the alcohol ablation procedure. The author made it sound like this new procedure was the only way to go and refered to the open-heart procedure as "a trip to the butcher." This disturbed me very much as my myectomy is scheduled for just over one week away.

    It is very hard to compare mortality rates for these procedures. 40 years ago, open heart surgeries were in there infancy let alone myectomies. All of the innovations and experiences gained from cardiac bypass surgeries have also benefitted the myectomy patients. I firmly hope that ablation becomes the gold standard for treatment of HOCM. It certainly puts less stress on the patient and family. Only time and testing in the right hands will make it so.

    Bob

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

    [Re: florida today newspaper article]

    Author: Robert Hartwell (---.focal7.interaccess.com)

    Date: 10-23-02 19:03

    Hi all,

    I need to make a correction to my earlier post. The exact quote from the Esquire article was phrased as a question:

    "If I'm beyond angioplasty, I'm headed for the Slaughterhouse, right?"

    A nice way to make surgical patient feel good don't you think?

    Bob

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

    [Re: florida today newspaper article]

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

    Date: 10-23-02 22:59

    Sometimes a morbid sense of humor helps, but not usually.

    S

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

    [Re: florida today newspaper article]

    Author: Dolly W (---.proxy.aol.com)

    Date: 10-23-02 23:28

    Hi All,

    Just wanted to add my two-cents worth. I had considered alcohol ablation earlier this year. I was not interested in having a myectomy at all. The least invasive the procedure, the better, so I thought. However, after research, I decided against ablation (personal choice).

    I had been told by a local MD (who was drooling to perform his FIRST ablation) that myectomy was a "morbid" procedure and that I would spend a month in the hospital recooperating. Well, I'm VERY happy to inform you that my myectomy was performed Oct. 15th, I was discharged from the hospital Oct 19th and flew home Oct 21st.

    During the procedure, my surgeon found "excess tissue" that was surrounding the obstruction (a double-obstruction of sorts). This would not have been accessable to the person performing an alcohol ablation and would have neccessitated another surgery following ablation.

    I am home and am able to do everything for myself as far as personal grooming, etc. My only limitations are lifting/driving restrictions. I feel that in my case, myectomy was the procedure of choice. I also feel that each individual needs to be able to make his/her own decision based on unbiased facts. And that procedure MUST be performed by experienced hands!

    Erica, I do hope all goes well with your father, keep us posted.

    Robert, if you have any questions, I'm one week post-myectomy and would be happy to speak with you. People have told me that I don't even look like I've just had surgery.

    Thank goodness we have options!

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

    [Re: florida today newspaper article]

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

    Date: 10-24-02 01:06

    Dear Dolly,

    Thanks for sharing your experience. I know it helps everyone to know what has worked for other people.

    I'm so glad you are doing well!!!

    keep it up,

    Sarah

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

    [Re: florida today newspaper article]

    Author: Julie Petitpas (---.proxy.aol.com)

    Date: 10-24-02 08:46

    I have to admit I don't read these articles in the same perspective as every one else. I'm not in the same frame of mind I guess. I can't even relate to someone who is going through any of these procedures because my brother never had the chance to know them. He died without even knowing he had HCM. As a surviving relative it is nice to know these articles are out there and even better yet that this Message Board is here. I've learned more here than from reading articles. Thank You! Julie P.

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

    [Re: florida today newspaper article]

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

    Date: 10-24-02 09:00

    Dolly, Thanks for sharing your thoughts and I am glad to hear you are feeling well.

    Julie - Your input is helpful as well, here at the HCMA we want to do everything we can to provide clear and balanced infromation for all to see, not only those in the center of picking a treatment option.

    Bob - The quote you picked out is what makes me sick about how this entire matter is being reported. I only hope a better balanced vieiw makes it to the headlilnes before patients get too wrapped up in dramatic quotes and headlines that seem to promise a cure to an incureable condition.

    Lisa

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

    [Re: florida today newspaper article]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 10-24-02 18:23

    What's great about this board, too ... is that it contains up to date information and advice for my father … now whether or not he chooses to follow the medical advice shared is his prerogative ... but, if in the event I am diagnosed with HCM down the road ... at least I will have the knowledge to do what is in my best interest! I know that it will be imperative to get my heart to an HCM SPECIALIST and listen to what the SPECIALIST advises and go from there.

    Lisa ... thank you for everything you do and continue to do. I always enjoy speaking with you on the phone! I’m glad the book made its way back to you! At least we know someone else will be able to read it as opposed to it being lost! And, I can’t wait to get the new one you sent out!

    Sarah ... thank you for moderating the board, and for going out of your way to provide prompt reliable information!

    Everyone else...HCM board, members and nonmembers - I appreciate your posts! It is comforting to hear what you are experiencing. It helps to know that you and my father are not alone! Your testimony is well versed and greatly appreciated. My deepest sympathy goes out to those of you who have lost a love one to HCM and to those of you with HCM ... I wish you peace, balance and good health! Again, thank you for sharing, listening, and responding! I know I have had positive posts and I have also had emotional posts. You all have a way of bringing me back to reality! Your responses were written with love, compassion, and have always been done so in a comforting fashion. Thank you! The weekend is almost here! Smile and know you are all special to me! I hope to meet you in the near future. ~ Erica

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

    [Re: florida today newspaper article]

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

    Date: 10-24-02 21:34

    E

    Look for the info about the annual meeting in June.

    S

    PS you are welcome. Please read Reenie's post on the newspaper article thread, too.

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

    [Re: florida today newspaper article]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 10-24-02 22:04

    S ... check your email! E : )

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

    [Re: florida today newspaper article]

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

    Date: 10-25-02 08:12

    Erica -

    I know this has been an overwhelming time for your family and I admire your energy in which you have dove into the HCM world with!

    Your comments have ben thought provocing and have helped to provide information to many...Thank you for your interactive actions... I look forward to many years ahead of commincation and finding ways to help all those with HCM!

    all the best,

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

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