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  • Spencer vs. Nielsen ?

    [Spencer vs. Nielsen ?]

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

    Date: 10-06-02 14:20

    My father is anticipating a septal ablation at the UMSC.

    If you saw one or the other ... who did you see and provide me with feedback as to how your experience went! Thanks so much in advance.

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

    [Re: Spencer vs. Nielsen ?]

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

    Date: 10-07-02 12:44

    Stephine -

    Please becareful reviewing opinions of others on this question - All I mean is simply that each of us are different in the way we present our HCM, tolorance of pain, and personalities.

    At the SUmmit on HCM this past weekend it bacame more clear than EVER how important the condition of the Mitral Valve is to the success of ablations. Also the overwhelming opinion of those in attendance was this is a procedure that should be used in an older population (I am not sure how old you/the person getting it done is).

    I can say I have spoken with Dr. Spencer a number of times and I know he is very good at the procedure - I do not recall if I have ever spoken to Dr. Nielsen.

    I always suggest those concidering any form of septal reduction be seen by a center who can preform either procedure -or go to 2 different centers if one only provides ablation - and get opinions from "both sides" of the issue.

    It is not an easy choice and with the data I saw this weekend I can not stress enough how important the mitral valve is to either procedure.

    Best Wishes,

    Lisa

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

    [Re: Spencer vs. Nielsen ?]

    Author: betsy trawick (---.atl.client2.attbi.com)

    Date: 10-07-02 17:45

    How do I get information from the Summit on ablation? My cardiologist, who is not a specialist on HCM, is trying to get me to do ablation and I am not comfortable with what I am hearing. Thanks.

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

    [Septal ablation]

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

    Date: 10-07-02 18:45

    Hi Betsy. My father is scheduled to have his assessment and ablation on 11-11-02 at the UMSC. You will hear both good and bad about the ablation and myectomy procedures. I would contact Lisa to find out where the nearest HCM specialist is in reference to where you live. We live in NC so he will be traveling to Charleston, SC for the procedure. It comes down to what is recommended and what you feel comfortable with. My father refuses to have the myectomy because of “fear” and he feels that the ablation is less invasive. He is older (58.) The reason you might read negativity about the ablation is because the procedure is still new in comparison to the myectomy. The first ablation was performed at Baylor in 1996 and was initially performed 2 years prior in the United Kingdom. There isn't enough long-term data out there so of course the myectomy is the preferred treatment for now. Also, not every person afflicted by HOCM is a candidate for the myectomy and not every individual is a candidate for the ablation, which is why it is so important to see an HCM specialist and let him/her decide what is in your best interest. In my father's case he is going straight to UMSC to see the doctor who performed the first ablation in the U.S. hence he has performed the most ablations in the United States. Because the procedure is still viewed upon as “new” ... if you are going to have the ablation make sure you have the procedure performed by an HCM specialist who has performed many many ablations versus some of the newer doctors performing the procedure on guinea pigs to gain experience. The only negativity I have found on the ablation is that it is still considered "new." It is not recommended for the younger population but again it the individuals choice! Someone my father’s age is a good candidate (he is 58.) As for complications ... there are complications for both procedures just as there are complications with medications, getting a cardiac cath, etc. To date, long-term data for the ablation:

    88% asymptomatic after the ablation

    12% slightly improved but symptomatic

    2% symptomatic (no improvement)

    I will send you additional articles on the procedure at your request.

    Best regards,

    Erica

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

    [Links to read up on: septal ablation]

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

    Date: 10-07-02 20:00

    Here are some links to read up on the procedure. **Please check dates. Make sure you are reading the most up-to-date articles.

    http://www.hmc.org.qa/hmc/heartviews/issue9/FOCUS.htm

    http://www.cardiology.utmb.edu/slides/alcohol-hocm

    Alcohol Septal Ablation in Treatment of Hypertrophic Obstructive Cardiomyopathy

    http://www.med.usf.edu/~msiddiqu/HOCM.html

    http://www.medicarenhic.com/lmrp/final/ne/01-D-R1.htm

    http://www.ccs.ca/society/congress20...s/abs/a416.htm

    http://www.medhelp.org/forums/cardio/archive/8083.html

    http://www.nwmb.org/trgmedpol/medicine/med94.html

    **Nielsen CD, Killip D, Spencer WH 3rd.

    Nonsurgical septal reduction therapy for hypertrophic obstructive cardiomyopathy

    in South Carolina: the MUSC experience (1999 through 2001).

    J S C Med Assoc. 2002 Apr;98(2):62-5. No abstract available.

    PMID: 11975139 [PubMed - indexed for MEDLINE]

    **Recently, alcoholic septal ablation has been performed as a treatment for left ventricular outflow obstruction and for intractable symptoms that have been unsuccessfully treated by either noninvasive or other invasive methods. A small amount of alcohol is injected into the septal branch of the left anterior descending artery that supplies the culprit hypertrophied portion of the interventricular septum. This causes a controlled myocardial infarction, reducing obstruction and improving symptoms. This procedure is still experimental, but initial results have been promising.

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

    [Re: Links to read up on: septal ablation]

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

    Date: 10-08-02 18:18

    The HCMA can not support the statistics given in this tread as they are not consistant with the information discuessed at the Summit on HCM.

    The Summit will be producing a book from the event, it will be available in 6-9 months.

    Re the information shared at the summit - -

    Ablation is not able to be done on those with mitral valve problems, which represent a large number of those with HCM.

    Septal measurements of 1.8 or less should not have the procedure.

    In a study, not listed above, when compareing the effects on oxygen consumption after both forms of septal reduction, the "vo2" was better in those with myectomy, as was long term symptom reduction.

    In the German expeience they have access to caths that are not available to be used in the USA, so the expereince there is different and one must take that into consideration when evaluating the data.

    The mortality rate associated with ablation in the USA is higher that the mortality rate associated with myectomy at this time.

    More people with ablation end up with pacemakers than myectomy.

    It is more common to have a 2nd or 3rd ablation as compared to a 2nd myectomy.

    Yes, Ablation has may benefits but I would reference you to the links above...2 of which are from insurance companies - ablation is much cheaper than myectomy.

    Be careful... look at all options, Ablation may well be the right one for you as it has been for others but look at the entire picture...like I have said before you only have 1 heart, be careful with it.

    Best to all,

    Lisa

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

    [Re: Links to read up on: septal ablation]

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

    Date: 10-08-02 20:47

    Hi Lisa...Iam very glad to hear the info about Mitral Valve problems and Alchol Ablation......I have my second appointment with Dr Nielsen at MUSC on Nov 8th for an echo and discussion about the proceedure. I have Mitral Valve Prolapse and I will be discussing this with Dr Nielsen. He had already warned me on our first visit thet there were many many people who were not able to have the proceedure done for one reason or the other.. but he would know more when he was done testing me. That what I love about HCMA......there always info here for all!!! Y ou are always looking out for us all!! Thanks Lisa....Connie

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

    [Re: Links to read up on: septal ablation]

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

    Date: 10-08-02 21:23

    Hi Connie - -Thanks for the comments... sometimes I think you all may think I am just looking for the flaws in the world... fact is when you fine the flaws you fine the gems too.... just takes time for things to work out sometimes.

    I hope all goes well and you make the best treatment choice for YOU!

    All the Best!

    Lisa

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

    [Apology]

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

    Date: 10-08-02 22:32

    Lisa … I apologize for posting inaccurate information. Personally, I skipped over the cost aspect ... you cannot put a price on one's heart! I tried to post links that discussed what the septal ablation was - procedural information. I conducted a search using the words "septal ablation" on google. I will not post any more links without running it by you first. Can you inform us with what you learned at the summit? Again, please accept my apology. It was not my intention to misinform any one.

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

    [Re: Apology]

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

    Date: 10-09-02 00:50

    Dear Erica,

    I understand your frustration at finding the information you need. However, the summit was 2 and a half days of non-stop lectures and discussions about various aspects of HCM. It would be impossible to share all of this information on the board.

    Some of what we learned will be in the newsletter that members get but your best bet is to try to make it to the HCMA annual meeting in June where some of the same material will be covered in English and not doctorese. The doctorese versions will be printed in a book that will be for sale by futuraco.com in about 9 months.

    The best way to figure out if you are an ablation candidate is to see an HCM specialist at a major heart center who has done lots and lots of them. Mayo, Minneapolis, Cleveland, NY, NEMC, etc. Calling the HCMA office will get you all the contract info you need to make appointments with the right people.

    take care,

    Sarah

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

    [Re: Apology]

    Author: BRUCE TALLANT (---.proxy.aol.com)

    Date: 10-15-02 23:55

    I LIVE IN COLUMBIA SC. JUST LEARNED THAT MY COUSIN IN MILLSPRINGS NC HAD THE ABALATION DONE BY DR SPENCER AT CHARLESTON LAST WEEK. I SPOKE TO HIM BRIEFLY TONIGHT AND HE WAS VERY EXCITED ABOUT THE PROCEDURE. BECAUSE HE IS A CANDIDATE FOR THE SUDDEN DEATH PROBLEM HE HAD TO HAVE SOME ADDITIONAL PROCEDURE DONE AS WELL. HOPE TO KNOW A LITTLE MORE ABOUT HIS RECOVERY AND HIS THOUGHTS ABOUT THE PROCEDURE NEXT WEEK - AFTER HE RECOVERS FROM THE ADDITIONAL SURGERY. HE WAS VERY COMPLIMENTARY OF THE PROCEDURE AND WAS VERY PLEASED WITH DR SPENCER.

    I WAS SURPRISED TO LEARN THAT MY COUSIN HAD HCM. HE WAS ONLY DIAGNOSED A FEW WEEKS AGO AND I LEARNED OF HIS SURGERY WHEN I CALLED TO INVITE HIM TO A FAMILY REUNION.

    HE WAS ALSO UNAWARE THAT I HAD BEEN DIAGNOSED WITH HCM ALMOST TEN YEARS AGO. ( I AM 59 NOW), I'VE BEEN THROUGH THE MEDICATIONS AND CURRENTLY HAVE A PACEMAKER. HOWEVER MY CARDIOLOGIST NOW SAYS THAT THE TIME IS NEAR TO CONSIDER SURGERY AS THE SYMPTOMS ARE SLOWLY PROGRESSING. I LIKE THE CONCEPT OF THE ALCHOL ABALATION BECAUSE I SENSE IT WOULD BE LESS PAINFUL AND RECOVERY TIME WOULD BE SHORTER. I'VE BEEN SLOW ON MAKING A DECISION BECAUSE I WAS HOPEFUL THAT MORE TIME WOULD PRODUCE MORE DATA ON THE NEW PROCEDURE AND WASN'T SURE WHERE TO GO FOR TREATMENT. IT SEEMS THAT WITH DR SPENCER BEING IN SC AND NOW THAT I HAVE FOUND THIS SITE ( HAVING READ SOME OF THE POS COMMENTS) MY DECISION SEEMS TO BE LEANING TOWARDS ABALATION. I WOULD APPRECIATE ANY ADDITIONAL DATA OR STATISTICS YOU COULD SUPPLY. I THINK MY COUSIN SAID THAT HE WAS THE 114TH SURGERY THAT THIS DR HAS PERFORMED. IS IT POSSIBLE TO GET INFO ON A SURGEONS RECORD? SUCH AS NUMBER OF SURGERIES, SUCCESSES AND OTHERWISE?

    THE ABALATION.

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

    [Re: Apology]

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

    Date: 10-17-02 22:59

    Bruce ... I sent you a personal email from my home email account. I hope you received it! Let me know if you didn't and I will try and resend it. ~ Erica

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

    [Re: Apology]

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

    Date: 10-18-02 10:26

    Dear Bruce,

    Please read the posts on the first page of the board about ICDs and myectomies.

    Also, please call the HCMA to get the name of a specialist.

    WHatever you decide should be guided by the best advice and be done by the absolute best. Pick up the Nov. issue of Esquire magazine to read about an ablationfor HCM.

    take care,

    S

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

    [Re: Apology]

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

    Date: 10-18-02 11:35

    Sarah ... I finally read that article. I thought it was well written. I wonder how Esquire picked up on a German case, though! I know the patient was an American living in Germany ... but I can't help but wonder how he got the story to the press! Nonetheless ... it was a good article. Very detailed ... descriptive about the procedure and his life with HCM. Dad found the article to be of benefit, too. It helped him to understand the risks as well as what to expect next month. I did not see where the HCMA was listed in the article, though. Did you notice what page it was on? The copy I received was faxed so it's possible it got buried under the lines that were printed all over the fax paper! Can you believe the November issue still isn't on the stands in Durham, NC? Oh well ... dad pulled out the pages from his magazine and faxed it over!

    Bruce ... I do hope all is well and that I hear from you soon! How is your cousin doing? Definitely check out the post called Myectomy vs Septal Ablation http://www.hcma-heart.com/messages/r...&i=4846&t=4846
    NOTE: This is a post from the previous forum message board.

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