Myectomy/Abilation

[Rachelle]

I am 36 years old. I've been diagnosed with HCM for 5 years. Although I have no obstruction, no gradiant and very few symptoms I can feel changes in my heart health as I get older. I'm actually now wearing a King of Hearts to determine if I have atrial fibrilation. I also must mention that I have a significant septal measurement of 30mm. My question is would it be beneficial to me later in life to elect to have either a myectomy or abilation now to thin my septal muscle while my heart is in fairly good condition. Could thinning the heart mucle now eleviate the stiffining of my heart muscle and keep my condition from getting worse?

[Cynaburst]

Re: Myectomy/Abilation

I am 39 myself, and have been diagnosed with HCM for about the same length of time as you. As I understand it, it is impossible to predict whether your condition will worsen or not with time. I don't think that they do septal reductions prophylactically. I think that they are done when the symptoms reach a point where they can't be treated any other way. I also think that the only reason they do the reduction is to reduce outflow gradient. Since you don't have one, I am not sure that the surgery would do you any good anyway. I am sure others will chime in, but that's my understanding. You should try different types and doseages of meds to see what helps your symptoms now. If they worsen, deal with that then.

[Burton Borrok]

Re: Myectomy/Abilation

Hi Rachael,
I’m just about double your age, (71) and from May of last year, I had my fourth heart cath and stenting, had an extra stent put in to repair damage done by the first stent, had pneumonia, my kidneys almost failed, had a stroke, had both renal arteries angioplastied and stented, had both iliac arteries angioplastied and stented, had an HOCM attack that was not diagnosed properly, and wound up the year two weeks later with another HOCM attack – this time diagnosed and finally properly treated. Right now I feel great.

It’s not like the old days when you were old at fifty and most people did not reach retirement age at all. In fact, this last Friday we took a friend out to a crab leg dinner to celebrate her 88th birthday. We also have other people in our bridge group that are in their upper eighties. Your generation will probably find it commonplace for people to reach one hundred or more.

There is absolutely no need to go have procedures done now so you wouldn’t have to face them in old age. Old age for you is probably sixty to seventy years down the pike, and a procedure done then would probably be much safer, if you think of the advancements that will probably be made in all those years. Exhaust all possible drug treatments before thinking of any procedures, and the day for a procedure may never come. Now go have a nice day and relax.
Burt

[mtlieb]

Re: Myectomy/Abilation

Hi Rachelle,

Glad to hear that you are doing so well!

I couldn't agree more with what the others have said. The risk of complications from either of these two procedures may very well be worse than anything you might 'possibly' face down the road with your HCM. You have no obstruction, no gradient, and very few symptoms... most of us here would love to be in your shoes! I think it's a moot point anyway, as I doubt you would find a doctor or insurance company willing to go along with the procedure.

Take care,

Jim

[Sarah]

Re: Myectomy/Abilation

Dear Rachelle,

I certainly understand wanting to do whatever you can to prevent getting worse, however, a myectomy/ablation will not help you right now as you say you are not obstructed. Those procedures are only done on obstructions. They cut away (or melt away) the piece of muscle that is protruding out into the mitral valve.

As far as I know, no one is just thinning the septum down the middle.

Eating right, mild exercise, reducing stress, taking your medication and having a postitive attitude are the best things to do for yourself and for your HCM.

Seeing an HCM specialist is also a good idea and if there are any new surgical techniques on the horizon, they would know.

Afib is a drag --I have it, my mom has it, my brother has it, and my cousins and a couple aunts have it (all due to HCM). I have one aunt who has been in afib for 30 years and she is still doing very well. So even afib isn't the end of the world.

take care,

Sarah

[Ronnie]

Re: Myectomy/Abilation

Rachelle,
I agree with the other respondants-"if it ain't broken, don't fix it" You may be asymtomatic forever. Even if your situation deterioates in 10-15 years- improved treatments may be in practice that are superior to a Myectomy. I'm also pretty sure without an Obstruction, A Gradient over 50 at least) they won't do a Myectomy I was very comfortable on Meds, for almost 20 years, B4 a Myectomy was needed.
Hope this puts your mind at ease
RONNIE.

[Rachelle]

Re: Myectomy/Abilation

Thanks to everyone for your input. It all makes good sense. I sometimes tend to obsess and the only thing that eases my mind is to come up with solutions for the "what if's". Burton your story is a true inspiration. You have faced some tough situations and survived. I will keep your advice in mind as I go through life! Thanks again!

[Burton Borrok]

Re: Myectomy/Abilation

Rachelle,
You make me all warm and fuzzy inside. I am very glad to have been of help to you. – But an inspiration? Gee, no one has ever hung that on me before. Thanks a million.
Burt

[Lisa Salberg]

Re: Myectomy/Abilation

Rachelle,
if you are not obstructed then there is no reason for you to even think about myectomy or ablation.
Your treatment options will likely include an Beta Blockers, calcium channel blockers, possibly diuretics and possibly in implantable devices such as pacemaker and/or defibrillator.
:In the meantime try not to worry so much

Take care,
Lisa[/i]

[Rachelle]

Re: Myectomy/Abilation

I have a defibrillator/pacemaker and I take a beta pacer (Sotalol) daily. I have a wonderful doctor both here at home and at Mayo. Don't get me wrong, I am very thankful for every blessing I have! I love life so much that I chronically obsess on ways to help ensure my future will be as healthy as possible not just for me but for my kids' sake. I do believe, as Burton said, that medical advancements are being made every day and they are certainly our best bet. My King of Hearts has not shown any sign of Afib as of yet so that's great! I think I'll take everyone's advice and not worry so much! Thank you!

[mtlieb]

Re: Myectomy/Abilation

Rachelle,

That's great news. It makes all the difference in the world to have doctors that you trust and like so much, doesn't it?

Myectomy and ablation should always be considered the 'last resort' for us HCM'ers. No matter how many of these procedures have been performed, there are still inherent risks involved, and always the possibility that you may end up worse off than you were before. I am at a point right now where unfortunately, my symptoms have become quite disabling. But even so, i will continue to explore every possible alternative to surgery, and until every possible combination of drugs has been tried, i will not even consider a myectomy or ablation.

Hang in there, and know that we are always here for you if you need us

Jim

[Sarah]

Re: Myectomy/Abilation

R

You are seeing the best doctors in the world and have an ICD? You can't do any better than that. Take a deep breath and just take it day by day.

If you are still over anxious, look into meditation and spending more time with the kids to take your mind off of it.

take care,

S

[TammyC]

Re: Myectomy/Abilation

WOW BURTON
You've been through sooo much! Does it feel like nothing can bring down? What's you're advise to having such a strength?

[Burton Borrok]

Re: Myectomy/Abilation

Hi Tammy,
It’s really quite simple. I’ll even give you the more colorful response.

When I wake up in the morning the very first thing I do is check my pulse. If I find one I’m happy all day – and if I don’t find one – I go pee on an outlet. That always lights up my life.
Burt

[TammyC]

Re: Myectomy/Abilation

LOL You are a very funny man.....I'll keep that in mind. Not sure what my dog would think of me peeing on an outlet considering she gets in trouble for peeing on the floor. God Bless.