Septal Ablation or Myectomy

[Liannedr]

My husband has been meeting with Doctors at NEMC in Boston & their recommendation is for my husband to choose between septal ablation or Myectomy for his HOCM.

I've done a lot of research on both & would like to hear people's experiences. My husband is 35 years old & otherwise healthy. I am concerned about the long term effects of the ablation & would like to hear any experiences people have had.

Thank you.

[Sarah]

research

Hi,

You will find a lot of information on both procedures here. I'm surprised they are suggesting an ablation since it is my understanding that Mayo and Cleveland don't recommend abalations for people under 50 since there is no long term data yet.

I recommend using the search function at the top of this page to find all the existing posts on myectomy and ablation --you will find a LOT to read.

take care,

Sarah

[Lisa Salberg]

The word option would be key I think. Yes you have 2 options for septal reduction. Which is right for you (your husband) is what needs to be looked at. If the mitral valve is in good shape and the echo show the obstuction clearly in the upper portion of the septum then ablation is an option. Myectomy is the "gold Standard" for the treatment of obstruction and there is a much longer history with the procedure.
Most centers I am aware of, again I say MOST, are not keen on ablation for younger patients (under 50).
The key here is OPTIONS... you do have options...
There are many postings on the board regarding these procedures, read them and gather your thoughts then discuss your options with your doctors.
Take Care!
Lisa

[Sarah]

by the way

you will find people's reports of their experiences in those posts.

There are happy ablations, happy myectomys and a couple unhappy ablations. There is probably an unhappy myectomy, too.

take care,

S

[Robert Hartwell]

Hi,

I had a myectomy at the Cleveland Clinic at age 41. The procedure was done without complication and my recovery was free of complications. While I did not have a choice on the procedure, I believe in my own mind that I would have chosen myectomy at this time over ablation since it is still a big unknown. I do hope one day that ablation will be the gold standard. From what I have read of peoples experiences here on the board it has some definate advantages.

Bob

[connie]

My Ablation

Hi There....

After extensive research on both procedures, I opted for the Septal Alcohol Ablation. I did not have any Mitral Valve problems, so I was a good candidate for it.
Mine was performed Jan. 21, 2003 @ MUSC in Charleston S.C.. So far so good. I feel wonderful everyday. I cant say what tomorrow will bring. And there isent any long term data on this procedure. The only thing I can say is, research everything and look at the big picture and all your options. Do what is best for you and your husband.
I was very symptomatic, prior to the procedure and my quality of life was the pitts. The procedure itself was not with out pain, but it was pretty easy. I was in the hospital for 3 days and out of work 3 weeks. I go for my 3 month check up 04/11/03. I feel good about my choice. Good luck to you and your husband.
Connie

[Judy Reid]

Hi,

I had a myectomy at age 33 at the Cleveland Clinic (see My Introduction). I was considering an alcohol ablation by local doctors, but I would have been their first one. I started doing lots of research when I found this out (that I would be their first), I decided to see Dr. Lever at CCF. He thought, and I agreed, that the myectomy was the best choice for me. I was not opposed to either procedure, but thought I'd stick with the one with the most long term data. You are doing the right thing asking questions and listening to other experiences. I have not one regret about my decision to have the surgery. It is a personal decision and you and your husband have to decide what is best for your situation.

Judy

[Dolly W]

I'm a happy myectomy

[dughr]

I am reading this with great interest. I am also being seen at NEMC Tufts in Boston, am 38 and have also been given the choice of ablation or surgury. What could I expect with surgury with regards to down time, hospitalization time, and one that is important to me, scarring?

Doug

[Sarah]

down time

D

everyone is different. And some doctors recommend different (slightly) downtimes and your post-surgery experience will vary, too. I would ask T-NEMC what they recommend for recovery. I think 6 weeks is standard.

I'm sure the myectomies here will report on their scars for you ---right, guys?

S

[kathyn2]

I don't think you have to have had a myectomy to know that there is a huge long scar because they cut your chest down the middle, take a saw to your sternum and split your ribs apart to do open heart surgery. Gives me the willies! I wouldnt care about the scar but I would care about the pain that must cause while you heal. You people that have had myectomies are very brave! I think I would choose the ablation first if I had the choice and give it a try! If it doesn't work, you can still have the myectomy.

[Sarah]

backup plan

While your "back up" plan sounds reasonable, it doesn't really work that way.

If you aren't a candidate for an ablation, why risk it? Certainly it is an option for some, but if it goes wrong, how much can they fix?

I've seen an open heart surgery scar and yeah, it is a big, long scar, but I don't think I'd choose what happens to my heart based on what my skin is going to look like.

Just me.

S

[kathyn2]

Oh, don't get me wrong. If they told me an ablation was not going to work in my situation, I would not have one. But if I had a choice as a few of these people mentioned, I would opt for one first. I have known a person or 2 that have had both procedures done when after a while their symptoms returned after the ablation. Also, if I decided to have the ablation I would have it done in one of the major centers that has done many many of them. Not my local area. I guess if they gave me a choice, I would just take the less invasive procedure to start out with. When Robert mentioned in one of his posts that they left the breathing tube in etc til after you were wide awake after his myectomy and then they yank it out while you are wide awake, that about did it for me. I am very chicken when it comes to medical procedures. Phobic in fact. I couldn't handle that! I hope no one ever tells me I should have a myectomy!

[dughr]

OK, For me I have a choice. At 38 I am reading I am young for an ablation. But I am a candidate for either. I have a great doctor (Dr. Maron of Tufts) and he thinks I can go either way. I would welcome any ones account of how it went and what they feel like after some time has passed. Also would you do it again.

Doug

[Judy Reid]

Doug,

I will be 4 years post myectomy in November of this year. I would do it again without a second thought. Recovery for me was went in stages. I do remember waking up after surgery while still on the vent., but I went right back to sleep and don't remember any more until after the tubes were out. The first night was the worst. I tossed and turned the whole night. Finally, they gave me some anti-inflamatory type drug and that helped with the pain. After that first night, there was still pain, but meds. controlled it. Sleeping was difficult for about two weeks. I had to sleep propped up on the couch b/c it was too hard to get up from a flat position and also b/c lying flat was too uncomfortable. At about 4 weeks, I noticed a huge improvement in the way I felt. By 8 weeks, I was close to normal. I felt better concerning my hcm right after the surgery and still feel as good as I did at that time. I did not chose the ablation b/c of my age (33). I wanted to whatever would help me for the longest time. I am conservative (when it comes to my health care) and did not want to take the chance that something could come up later concerning the ablation. I personally hope that the ablation becomes the best treatment for hcm, it certainly would be much easier, but until the long term data is in, I feel like I made the best decision for me.

Hope this helps.

Judy