1. < Hypertrophic Cardiomyopathy (HCM)

Septal Ablation for HCM

Posted by Mummy12 @mummy12, Oct 27, 2016

I would like to connect with people who have had or are considering septal ablation for hypertrophic cardiomyopathy.

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Cynaburst, Alumna Mentor | @cynaburst | Oct 27, 2016

Mummy - How old are you? Are you otherwise healthy?

Septal Ablation is best for those who are older or who for some other reason are not good surgical candidates. Also, it is only for those who have suitable anatomy. It cannot address those with valve issues as well. If you are still considering, it is best to go to a Center like Mayo which does both procedures so you can get the one that best suits you and your situation.

Maybe someone who has had ablation will chime in. I do know that Mayo does do these procedures so someone may come along.

REPLY
1 reply
caretothepeople | @caretothepeople | Oct 31, 2016

Hi @mummy12 - a second opinion can be helpful when considering options. That is something to consider in making a decision.

Here are a few questions to ask your doctor that may aid in decision making also:

What are the risks and/or benefits of each procedure?
Is it possible to first get consultations from both a surgeon who could perform a septal myectomy and an interventional cardiologist who could perform alcohol septal ablation?
Do you recommend that I visit a HCM center of excellence?
Which procedure is ideal for my individual situation?
How can I find out if a physician and/or medical center is qualified to perform alcohol septal ablation?
What do I need to do prior to my procedure to prepare?
What can I expect following the procedure?
What everyday activities should I avoid following the procedure?
When will I be able to resume my normal lifestyle and return to work?

REPLY
4 replies
Mummy12 | @mummy12 | Oct 31, 2016
In reply to @cynaburst "Mummy - How old are you? Are you otherwise healthy? Septal Ablation is best for those..." + (show)
@cynaburst

Mummy - How old are you? Are you otherwise healthy?

Septal Ablation is best for those who are older or who for some other reason are not good surgical candidates. Also, it is only for those who have suitable anatomy. It cannot address those with valve issues as well. If you are still considering, it is best to go to a Center like Mayo which does both procedures so you can get the one that best suits you and your situation.

Maybe someone who has had ablation will chime in. I do know that Mayo does do these procedures so someone may come along.

Jump to this post

Thank you for replying. I visited the Mayo Clinic in September and was evaluated by Dr. Ommen. His recommendation was septal ablation because of my age. I just turned eighty a few days ago. Hopefully, someone who has had this procedure will reply.

REPLY
Mummy12 | @mummy12 | Oct 31, 2016
In reply to @caretothepeople "Hi @mummy12 - a second opinion can be helpful when considering options. That is something to..." + (show)
@caretothepeople

Hi @mummy12 - a second opinion can be helpful when considering options. That is something to consider in making a decision.

Here are a few questions to ask your doctor that may aid in decision making also:

What are the risks and/or benefits of each procedure?
Is it possible to first get consultations from both a surgeon who could perform a septal myectomy and an interventional cardiologist who could perform alcohol septal ablation?
Do you recommend that I visit a HCM center of excellence?
Which procedure is ideal for my individual situation?
How can I find out if a physician and/or medical center is qualified to perform alcohol septal ablation?
What do I need to do prior to my procedure to prepare?
What can I expect following the procedure?
What everyday activities should I avoid following the procedure?
When will I be able to resume my normal lifestyle and return to work?

Jump to this post

Thank you for your helpful reply. I did visit the Mayo Clinic in September and their recommendation was septal ablation. I would like to find someone who has had this procedure and the outcome, preferably in the New York area.

REPLY
caretothepeople | @caretothepeople | Nov 1, 2016
In reply to @caretothepeople "Hi @mummy12 - a second opinion can be helpful when considering options. That is something to..." + (show)
@caretothepeople

Hi @mummy12 - a second opinion can be helpful when considering options. That is something to consider in making a decision.

Here are a few questions to ask your doctor that may aid in decision making also:

What are the risks and/or benefits of each procedure?
Is it possible to first get consultations from both a surgeon who could perform a septal myectomy and an interventional cardiologist who could perform alcohol septal ablation?
Do you recommend that I visit a HCM center of excellence?
Which procedure is ideal for my individual situation?
How can I find out if a physician and/or medical center is qualified to perform alcohol septal ablation?
What do I need to do prior to my procedure to prepare?
What can I expect following the procedure?
What everyday activities should I avoid following the procedure?
When will I be able to resume my normal lifestyle and return to work?

Jump to this post

One thought is that the local chapter of the American Heart Association maybe be able to suggest some resources on sepal ablation in the NY area or maybe even put you in touch with some peers who have gone through the procedure. I believe the American Heart Association also has a forum and perhaps posting there might be another way to get feedback and reach out to others. They may have forums for different geographic areas. If there a certain treatment center or hospital you are considering they might be able to do the same.

REPLY
Cynaburst, Alumna Mentor | @cynaburst | Nov 1, 2016
In reply to @caretothepeople "Hi @mummy12 - a second opinion can be helpful when considering options. That is something to..." + (show)
@caretothepeople

Hi @mummy12 - a second opinion can be helpful when considering options. That is something to consider in making a decision.

Here are a few questions to ask your doctor that may aid in decision making also:

What are the risks and/or benefits of each procedure?
Is it possible to first get consultations from both a surgeon who could perform a septal myectomy and an interventional cardiologist who could perform alcohol septal ablation?
Do you recommend that I visit a HCM center of excellence?
Which procedure is ideal for my individual situation?
How can I find out if a physician and/or medical center is qualified to perform alcohol septal ablation?
What do I need to do prior to my procedure to prepare?
What can I expect following the procedure?
What everyday activities should I avoid following the procedure?
When will I be able to resume my normal lifestyle and return to work?

Jump to this post

The Hypertrophic Cardiomyopathy Association has a message board and Facebook community that is specific to HCM. http://www.4hcm.org
That would probably be a better bet if you are not limiting your search specifically for people with experience with the procedure at Mayo. There is a doctor in the NY area that was performing SAA and you will probably find some of his patients on the HCMA forums.

REPLY
Mummy12 | @mummy12 | Nov 1, 2016
In reply to @caretothepeople "Hi @mummy12 - a second opinion can be helpful when considering options. That is something to..." + (show)
@caretothepeople

Hi @mummy12 - a second opinion can be helpful when considering options. That is something to consider in making a decision.

Here are a few questions to ask your doctor that may aid in decision making also:

What are the risks and/or benefits of each procedure?
Is it possible to first get consultations from both a surgeon who could perform a septal myectomy and an interventional cardiologist who could perform alcohol septal ablation?
Do you recommend that I visit a HCM center of excellence?
Which procedure is ideal for my individual situation?
How can I find out if a physician and/or medical center is qualified to perform alcohol septal ablation?
What do I need to do prior to my procedure to prepare?
What can I expect following the procedure?
What everyday activities should I avoid following the procedure?
When will I be able to resume my normal lifestyle and return to work?

Jump to this post

Thank you for the suggestion.

REPLY
darrellb | @darrellb | Feb 15, 2017

I had septal ablation 17 years ago at Cleveland Clinic while it was still in trial. It was a quick recovery procedure and my stats very good by the following day. About 6 years later I did develop AFIB but after being put on Digoxin and getting the dosage right, the AFIB has been controlled to the extent that I never feel it. I am much healthier at 62 than I was before I had the procedure at age 45. Losing over 100 lbs in the last two years helped too.
After a recent echo and cath it was determined that I would benefit from having and ICD implanted, so we did that... but overall I'm doing well.

REPLY
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