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]

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]

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]

:D 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 :lol:

[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]

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]

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

[connie]

:D Hi Doug

Im a SAA(septal alcohol ablation) survivor. Mine was done 01/21/03 @MUSC in Charleston S.C., by DR.Christopher Neilsen. Everything went perfectly smooth, I feel better and better every day and I would do it again in HEART BEAT!!
I was horribly symptomatic and my quality of life was slipping away. This is a personal chioce that must be made carefully and with a lot of research and information.
Good Luck.........
Connie

[Shannon]

Hi Everybody!

I am 35 year old and had an alcohol ablation one year ago on April 22nd. It's hard to put into words how I feel about it. When I think back to how I felt before the procedure I still get a little emotional because of how different my life is now -- for the better! The ablation was probably one of the best things to ever happen to me! Two family members (one 5 years younger than me and one 14 yeas older) had the procedure done before me with great success, so I never really considered the Myectomy. I'm sure that the Myectomy would have worked as well, but IN MY OPINION when you consider that the ablation is done with a catheter as opposed to a knife and saw for the myectomy, it (the ablation) is a lot less intimidating! Maybe I'm just a chicken! As far as long term results go, you're right, we just don't know for sure yet what the future holds. But, my brother had his ablation done about 6 years ago and is still doing just great! I just wish it had been invented 10 years earlier to have helped my sister. If you are a good candidate for the ablation PLEASE check it out. I has worked for a LOT of people!!

I will keep you posted on our HCM family as time ticks on!

Shannon
[/i]

[kathyn2]

Where did you get your ablation done? Dr. Shah has told me that I am a candidate for an ablation and I am thinking seriously of having it done. Its funny. I asked him if he were in my shoes, would he have the open heart surgery that is a known thing, or have the new ablation, he said it would be a very hard decision. He knows the myectomy is the gold standard but he sure seemed to understand that it is a scary thing.

He actually never suggested to me to have a myectomy. He went right to the ablation. In fact my choice right now is to try norpace and if that doesn't work, to go for the ablation. I am not sure I want to take norpace because of the side effects. I also have glaucoma and it is contraindicated if you have glaucoma. You have to then take another medicine for the glaucoma etc. It seems like a mess to me. I also don't get along well with most drugs anyway so I am thinking of going right for the ablation.

It appears to me that lately, many of the doctors are giving a choice of the myectomy and ablation and I haven't seen people here saying they heavily recommended the myectomy over the ablation (that is if you are a candidate for either). Do anyone think that perhaps the ablation is becoming a more known procedure or more accepted procedure may be the term I am looking for? It appears to me it is becoming more and more accepted. AT least at some centers. Any feedback is appreciated. Does anyone know of a particular doctor or 2 that have done alot of successful ablation? Who has done the most ablations? Who has the most experience?

[Robert Hartwell]

Shannon,

Thank you for your wonderful post. I am glad that we are getting more SAA folks here to help provide information and actual experiences to newcomers. You are right, it is less intimidating and as a treatment option should be explored completly. As more younger people have it done, we will gain long term data. I am glad that this procedure has helped you and your family.

Bob

[Shannon]

Hi again!

I had the alblation done by Dr. William Spencer in Houston. He is based in South Carolina but works in Houston about once a month. He was one of the pioneers for this procedure in the U.S. I'm not sure exactly how many he has done to date, but I was number 149 (or so) a year ago. My brother was one of the first 30! I would highly reccommend him if he is anywhere close to you. I feel like he gave me my life back!

We are going to Disney World next week! I would have never even considered that a year ago (before the ablation!) I wouldn't have lasted more than ten minutes!!

Shannon

[Lisa Salberg]

Shannon...So glad to hear your feeling well! thanks for sharing your story!

Lisa

[Liannedr]

I just wanted to thank everyone for their input & feedback to help my husband make his decision. He has decided to go with the Myectomy. Now we are just waiting for the date!

Thank you.

Lianne

[Sarah]

Dear Lianne,

Keep us posted, good luck, keep your chin up and hang in there!

S

[connie]

Hi All .........

Dr. Christopher Neilsen @ MUSC did his training with Dr. Spencer in Houston Tx. They are together at MUSC now. Neilsen did my Alcohol Ablation in Jan/2003. I had a choice between Spencer and Neilsen. They are both experienced and well trained specialist with a very good trac record. I understand what was posted about being emotional about how I feel now, as to how I felt last year at this time. I go all the time now and am very active. Its a blessing.

Connie

[dughr]

Thanks everyone for your stories. It helps us people out here who are in the process of the big decision.

I have a question still. How much downtime did you have? Days in the hospital/days on the couch and how long until a guy could get back to work?

Thanks!

Doug

[Robert Hartwell]

Doug,

I can answer from the Myectomy side. I was in the Hospital for 5.5 days. I had to spend one extra day in the ICU or it might have been shorter. Once home I probably could have returned to work after 4 weeks. I was feeling great after 6 weeks and I did go to work after 8 weeks. I was fortunate to have disability benefits so I did not push my return to work. Given a week for pretests, and one week surgery delay due to sickness, I was off work a total of 10 weeks.

If you can afford the time off, take it. The rest is well worth it.

Bob

[Shannon]

Hi Doug.

For the Ablation I was in the hospital for 2 nights total -- the first night in Cardiac ICU and the 2nd in the cardiac ward. We drove home to Colorado Springs on the 3rd day after I was released. I was scheduled to be out of work for 6 weeks, but I went back to work after only three weeks since I felt so good and was rarin' to go! I do, however, have a sit-down job that is not strenuous.

I wish you the very best of luck and I know you will feel SO much better after either one of these procedures!

Shannon

[connie]

:D Hi Doug...

I was in the hospital 2 nights, CCU 1 night and Cardiac Ward 1 night. Went in on Tues and out on Thurs. Because I live 400 miles from the hospital and my sister lived within 20 miles of the hospital, the Doctor dident want me to travel home after I got out for 48 hours. Which suited me, because she pampered me. I was out of work a total of 3 weeks. I went back to work 2 weeks after it was done....I felt to good to lay around. But my Doc said O.K. and to take it easy. Im an office manager and do a lot of sit down work so it was easy.

Connie

[dughr]

Thanks for the replies. I appreciate them

Doug

[Janis Grant]

hi Doug,
I also had an ablation in Oct, 2002. Dr. William Spencer at MUSC in Charleston, SC performed mine. I stayed in ICU for 2 nights and cardiac ward 1 night. Went straight home which is in the upstste of SC about a four hour drive. Out of work for 4 weeks. When I had my initial physical they would not even let me stand on the treadmill much less walk on it. When I went back for my post 90 day physical I tore the threadmill up. We were all laughing. Your decision has to be what you can live with afterwards good or bad results. Good Luck. Janis SC

[Janis Grant]

hi Doug,
I also had an ablation in Oct, 2002. Dr. William Spencer at MUSC in Charleston, SC performed mine. I stayed in ICU for 2 nights and cardiac ward 1 night. Went straight home which is in the upstste of SC about a four hour drive. Out of work for 4 weeks. When I had my initial physical they would not even let me stand on the treadmill much less walk on it. When I went back for my post 90 day physical I tore the threadmill up. We were all laughing. Your decision has to be what you can live with afterwards good or bad results. Good Luck. Janis SC

[dughr]

Thanks for the input.

I am very strongly leaning toward the ablation at this time. Mainly because I figure since I am a strong candidate for it, and the noninvasive nature as compared to myectomy. I meet with the surgeon who does the procedure here where I live at Tufts NEMC on May 13. I look forward to tearing up a treadmill again. This isn't living, it marking time. I hope whichever I ultimately choose I can report the same kind of results. Best wishes,

Doug

[Kay Julius]

I too had to choose between an ablation and a myectomy. My local doctor suggested an ablation, but upon further research and second opinions from the Mayo Clinic, I have chosen the myectomy. I go to the Mayo Clinic on May 1 for my surgery. The reason for me, as for others my age, was not knowing the long term effects of the ablation. By the way, I am 31. The thought of open heart surgery is scary. I don't want the scar either, but comparing a scar to having a "controlled" heart attack and not knowing what this will do years down the line, I will take the scar. I have two young kids and want to be here a long time for them. The scar is nothing compared to the unknown. Hopefully you will make the right decision for you. Good luck and I will keep you informed as my surgery progresses.

[Lisa Salberg]

Kay,
You have done your homework and have made a choice that you feel is best for you AND you have had very skilled professionals assist you in the process. BRAVO...Nice job...
Now the trick is to get it done and get on with LIVING! 8-)
I wish you all the best!
Lisa

[imdrdr]

Hi Liannedr I was wondering whether you and your husband had made a decision on his surgical options at this point. I had septal ablation in Feb 2003 and would be happy to share my experience with you if you are still trying to decide.

I wish you both the best of luck.

[Liannedr]

Thank you for the offer but actually he just had the myectomy at Tufts/NEMC in Boston on July 22nd & everything went very well - they removed about 2cm of muscle & initial test results were very positive - although I guess it is still to early for him to say whether or not he feels he made the right decision - only time will tell.

[Lisa Salberg]

Liannedr,
You may want to clear up who your hubby is... I think some people are gonna have you married to the wrong guy soon :wink: With the 2 myectomies in a day at NEMC.

Lisa

[dughr]

:wink:

Thanks Lisa,

I am not the hubby but the other guy who got a myectomy. It was comforting to go through it with another person. And since we had such similar experiences leading up to our myectomies I think we both enjoyed (if that is a good word) having someone else to talk to during our hospital stay.

Doug