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I have had the following procedure...

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Lisa Salberg Find out more about Lisa Salberg
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  • Loriwag
    replied
    I have had an extended septal myectomy on Nov 8, 2016 at the mayo clinic in minnesota. My recovery is goung well. Getting stronger every day. I have an icd placed, i have had chf 3 times and 4 strokes i have 4 stents in place. Also have copd. But I do feel different after the surgery. Looking forward to starting my cardiac rehab.

    Leave a comment:


  • Loriwag
    replied
    I am a month out of having my extended septal myectomy on Nov 8th 2016. I feel good just wish the scabs would fall off my drainage tube sights. I had the procedure done at the mayo clinic in Minnesota. Waiting to start my cardiac rehab. The scariest part of the whole ordeal was the 2 nights of afib.

    Leave a comment:


  • JillC
    replied
    Re: I have had the following procedure...

    Welcome J,
    Please come and introduce yourself in the "Hello, my name is" There is a lot of good information and support here....Hope you are connected with a Center of Excellence.....very important especially if looking toward surgery.

    Leave a comment:


  • J.leblanc
    replied
    Re: I have had the following procedure...

    Well, just starting here tonight.
    I was told today that the Myectomy is my best route and will be going in for it in the next few months.

    Leave a comment:


  • gfox42
    replied
    Re: I have had the following procedure...

    Hi Todd,
    Welcome to the board!

    When you get a chance, please go to the "Hello! My name is . . ." forum and introduce yourself there; you'll get many more responses.

    And a special welcome to another person from Tampa!

    Gordon

    Leave a comment:


  • TODDinTAMPA
    replied
    Re: I have had the following procedure...

    1/2010, Cleveland Clinic, Dr. Lever, surgeon was Smedira - Septal Myectomy, Mitral valve repair, artificial chordae, papillary muscle repair (two fused together to make one functioning one), and a pacemaker/defib. implant.
    I feel better than prior to to surgery, but not great. I skateboard some, but only for short bursts. I have zero endurance, still have some light-headed spells, irregular heart beat, A-fib, and will spend an entire day off just sleeping to "catch up" on the rest I need. I take Atenelol, which has it's benefits, obviously, but slows my metabolism, and causes some balance issues with the inner ear. I always feel like I've had a beer or two.

    Leave a comment:


  • SparkyJW
    replied
    Re: I have had the following procedure...

    Hi everyone! I know I haven't posted much since November 2013 I had a septal myectomy, a maze procedure, and a little trim of the mitral valve. I think maybe I've been waiting, and a lil disappointed that I still have some symptoms post myectomy, and I was expecting better.
    Good news is I haven't been in a-fib since! At least not that I know of. I definitely knew back then when I was in afib. 😝 but I do still have shortness of breath. To the point where it affects me in work, as well as when I get busy at home. I have been switched from metoprolol to atenolol by Noreen at Tufts (Dr. Maron was out of town) to see if this helps. I also take a baby aspirin, atorvastatin, furosemide,and warfarin. Oh, and omeprazole for acid reflux. 😁 It's only been 3 weeks, or so, so I guess I'll give it a bit more time. Need to do something tho! (Preferably get off all these damn MEDS! &#128514 But that's my story in a nutshell! ~~~~~ Kev

    Leave a comment:


  • lizh
    replied
    Re: I have had the following procedure...

    The same thing happened to me. I had a myectomy and mitral valve repair 7/13 and felt much better for several months after. Then, around the 5th month felt all my symptoms come back and then some. Stress echo said my obstruction/gradient is greater than ever at 170+. Am on 100mg of toprol xl/ day. Can't really do much of anything except rest. Bummer! I feel the same way you do - I read so many accounts of improved functioning but my outcome wasn't good. Sad face.

    Leave a comment:


  • LindaSo
    replied
    Re: I have had the following procedure...

    I was much worse after my myectomy and it was that way for 2 years. I too returned to CCF and was told it is what it is. Perhaps I may have microvasuclar disease. I did end up with an ICD because I had CT on a stress echo which I didn't have pre myectomy. I also developed significant resting high heart rates and SVT. After multiple plane trips to Cleveland, I was placed on a beta blocker. I had been on Atenolol once before and did not do well with it. I have asthma, so no one wanted to try anything again. Finally Dr. L and I had a discussion about the risk/benefits and I started Toprol XL. It was my miracle that finally happened almost 2 years to the day after my surgery.

    Don't give up !!!

    Leave a comment:


  • JillC
    replied
    Re: I have had the following procedure...

    It's most likely not, all in your head.
    I had a myectomy 3/13 and am having a lot of the same struggles. It is difficult when you read accounts of other people's myectomies and they have had miraculous recoveries ..... running up stairs ....doing marathons etc. And you start to doubt yourself. Don't doubt yourself. Cynaburst. one of the moderators made a very wise comment to me when I was struggling with issues like yours....1) Every case of HOCM is very individualized and 2) even if they removed all of your physical obstruction, you still have HCM without the "O" which in and of itself has symptoms of fatigue and arrhythmias. The question is, are the symptoms treatable? I, personally,experienced severe fatigue issues and I went from 20% functioning to at least 50-60% functioning once my cardiologist agreed to wean me off beta blockers for at least a trial to see if they were the cause. You just need to let your cardiologist know exactly what your symptoms are and how severe they are.....(Read up on the NYH system of grading heart failure) How severely is it affecting your quality of life? and ask for options available to you.....how is your echo? has the obstruction returned? Ask questions, don't doubt yourself..you know your body better than anyone...keep a diary of symptoms if you need to, Good Luck.

    Leave a comment:


  • samissionary
    replied
    Re: I have had the following procedure...

    I had a septal myectomy 5/12 at Cleveland. I'm doing better, but I still have skipped beats, shortness of breath and fatigue. I was hoping to have more energy than this. I'm been back to Cleveland and, after more testing, they say that a ICD isn't indicated. I don't know. Maybe this is all in my head.


    Sent from my iPad using Tapatalk

    Leave a comment:


  • Cynaburst
    replied
    Re: I have had the following procedure...

    You should post again in the myectomy section 4advice. I know we have had one or two lately that have had apical myectomy.

    Leave a comment:


  • 4advice
    replied
    Re: I have had the following procedure...

    I will have a Apical Myectomy operation at the Mayo Clinic very shortly. I expect it to go well. I have a great deal of confidence in the surgeons and staff of the Mayo. They are very responsive and their confidence is contagious.
    Still I have anxiety about the surgery. From what I have read, this procedure has been performed only about 100 times.
    My version of HCM is non-obstructive, but the mass of tissue in the left ventricle is dangerously large. The surgery will increase the volume of blood pumped by the left ventricle.
    Has anybody on this forum had this procedure? If so, how did you fare immediately following surgery in the ICU? Any suggestions for pre-op?
    Thanks in advance.
    PS: My apologies for any spelling errors. Couldn't figure out the spell checker.

    Leave a comment:


  • gfox42
    replied
    Re: I have had the following procedure...

    Well, you've come to the right place! Why don't you call the HCMA office ((973) 983-7429) tomorrow, and make an appointment to talk with Lisa? She can help connect you with one of the centers of excellence in HCM. That's what I did when I suddenly needed a myectomy, and she was extremely helpful!

    Gordon

    Leave a comment:


  • altonlane1961
    replied
    Re: I have had the following procedure...

    thank you. The cardiologist I saw in Raleigh suggested Johns Hopkins or Mayo Clinic and kind of dropped me there without helping with a referral and I don't know how to go about it being so far away from either place. I will call her to see if she can help.

    Leave a comment:

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