[Ablation vs. Myectomy]

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

Date: 08-05-02 21:29

I am a 39 yo F with HOCM (diagnosed as IHSS at 17). My gradient is 50mm and septal thickness 1.5cm. I'm on very high doses of Verapamil and Inderal which have been pretty effective at controlling my symptoms until recently. I'm very SOB, dizzy upon standing (near fainting), multiple palpitations, etc, etc. I was advised by a local hospital (in New Orleans) to have a septal ablation, but everything that I've been reading about this procedure has caused me to question its effectiveness in controlling symptoms of HOCM. When I questioned the MD about the number of ablations performed at this particular hospital, he responded, "NONE"! When I pressed for information about myectomy, he did not want to answer my questions and told me that it was a "morbid procedure" and that I would probably have to spend a month in the hospital recovering. Basically, I got the impression that he was just looking for a candidate to "practice" on, and I am certainly NOT it!

From what I've read, I feel that myectomy would be the tried and true way to control HOCM symptoms, but need info on hospitals which perform this procedure. I would prefer something within driving distance of New Orleans, LA, but any info would be appreciated.

Is there anyone out there who has had both procedures done and could possibly give me info on one vs. the other?

Thanks!

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[Re: Ablation vs. Myectomy]

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

Date: 08-05-02 23:21

Dolly,

I am basically the same shape as you are, so I cannot help, I am still trying to decide between the two. However, congrats on not falling for being a ginnea-pig and for asking the right questions.

Jerry

P.S. Dump the doctor...NOW!!!!

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[Re: Ablation vs. Myectomy]

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

Date: 08-05-02 23:36

Dear Dolly

Personally, I don't feel that ablation vs. myectomy is the question. The question is: Is there a procedure that would reduce your symptoms or will a different drug regime be your best option. You have in no way tried all of the different medications and combinations our there if you are on verapamil and inderal. There are very strong anti-arrhythmia medications to try before you go getting your heart cut up.

PLease call the HCMA office at 973-983-7429 to get the name of an HCM specialist so that you can see a doctor who can treat you properly (and by that I mean treat the HOCM properly) and evaluate which options would be best for you and your condition.

take care

Sarah

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[Re: Ablation vs. Myectomy]

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

Date: 08-06-02 16:13

Dear Dolly, I to had to decide septal alcohol ablation or myectomy. It took me three months to decide, I decide on the ablation. My gradient was at 100% and the doctors at Mount Sinai in New York City got the gradient down to 0%. I had many worries before the date this was to be performed, but today two weeks later i have no regrets, I feel wonderful. It was and is a very painful procedure but the procedure took no longer then two hours. It was worth it.

Good Luck on you Decision.

Michelle

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[Re: Ablation vs. Myectomy]

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

Date: 08-06-02 20:13

Hold the phone guys - -

1. If your septal measurment is under 1.6 Ablation should not be done.

2. Anti -Arrythmic drugs will not bring your gradient down.

3. gradients are measured in millimeters of mercury not percentages.

SO....

Dolly,

We are schedualed to speak in 30 minutes so I will discuss these issues with you personally. I ditto Jerrys comments re not falling into the doctors attempts to road test on you Further, Myectomy is not a "morbid procedure", it is highly effective and normal hospital stay is 4-7 days with an at home recovery time of 3-7 weeks.

Sarah,

While norpace is an anti-arrythmic it is also used for the reduction of gradient with some success. No other anti-arrythmics are used to reduce gradient.

Michelle,

Congratulations on your good experience with the ablation. I would clearify your numbers with the doctors it is most likely a gradient of 100mm which was reduced to 0mm. It is common for that number to go back up slightly a few weeks later - but not to a point it should bother you - -maybe 10-15mm or so. I tell you this so that you do not get upset if they tell you you have a gradient again.

I hope the input helps.

Lisa

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[Re: Ablation vs. Myectomy]

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

Date: 08-07-02 07:42

Lisa, My mistake on percent /mm. The one thing I did not know was that it could go up again. I thought abalation was permanent to keep the mm down. I have not seen that information anywhere nor was I told that by the doctors. Is that information in your book that I bought or on another site? Today is my two week check up on the septal ablation and it is my one year anniversay on receiving my pacemaker. I continue to feel great and again no regrets on my decision.

Michelle

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[Re: Ablation vs. Myectomy]

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

Date: 08-07-02 20:52

Michelle,

The information on the graident returning is in some newer publications. IT is funny some people with ablation leave the procedure with a slight gradient that continues to drop over the next few weeks /months and others drop to 0 then it slightly comes back. I would not worry too much, the numbers I have heard are so low you should not feel any symptoms from the obstruction. I have a resting gradient of 14-16mm I do not think any of my HCM symptoms are obstruction related.

I am very happy to hear your feeling well!!!!

all the best!

Lisa

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[Re: Ablation vs. Myectomy]

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

Date: 08-07-02 22:22

Thanks to all who responded to my post.

Jerry, I know it's a tough decision and I wish you all the best and God's blessings.

Michelle, I'm so happy for you! I've felt bad for so long that I didn't think it would be possible to feel good again, but you've given me hope!

Sarah and Lisa, thanks for your help and for getting the ball rolling! I'll keep in touch to let you know how things are progressing.

Thanks again,

Dolly

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[Re: Ablation vs. Myectomy]

Author: susan (---.240.OVG.vol.com)

Date: 08-10-02 22:30

hi dolly, i had the ablation and i was awake through it. it didn't bother me much pain wise. i felt a few sharp pains and that was it. keep in mind everyones pain tolerence is different. get rid of the doctor you don't need to be anyones guinea pig. let him practice on someone else. good luck dolly. oh by the way my gradient went down to zero, i also had this done 5 years ago and i have some new growth. not enough to be worried about. if it takes 5 years for your gradient to go from zero to 10 i say what the heck. think how many years it would take it to get back to 100. good luck dolly

susan

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[Re: Ablation vs. Myectomy]

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

Date: 08-14-02 15:16

Susan,

You bring up a good point, one that I think my previous postings may not have explained well enough. It took 5 years for your gradient to go from 0 to 10 post procedure (no big deal as you stated). Can you tell people from your experience if you have felt any symptoms as a result of a gradient of 10 vs 0.

Thanks Susan!

Lisa