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What is "significant symptomatic improvement" after septal myectomy?

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  • What is "significant symptomatic improvement" after septal myectomy?

    I am considering septal myectomy surgery at Mayo Clinic in the near future. Their brochure says "successful myectomy may dramatically improve symptoms in more than 90 percent of patients." I am trying to understand what this meant to you. That is, what was your experience? Was your ability to breathe better? How much better? 50% better? 100% better? I have no noticeable breathing problem while sitting. My problem occurs when I walk or exercise. Was your improvement immediate? Does everyone experience improvement? Are there other symptoms that improve or is it just breathing? Thanks for your help.

  • #2
    Re: What is "significant symptomatic improvement" after septal myectomy?

    Hi twomedicine,
    Everyone doesn't experience improvement -- but nearly everyone does, if their myectomy is done at a specialty center (like Mayo). Me, I no longer faint, no longer get short of breath, have no chest pain, and can handle exercise better. There's no way we can put a number on that (like 75% better), but for me the answer is "a lot."

    No, the improvement wasn't immediate, because (a) my body had to recover from the insult of surgery, and (b) the heart does a fair amount of remodeling too. But in about 6 weeks, I felt vastly better, and within a few months, I felt better still.

    Others will have different answers - some people improve more, and some less. One important question is what the specialists and surgeons think -- that is, whether they think a myectomy is likely to lead to significant improvement for you.

    Gordon
    Myectomy on Feb. 5, 2007.

    Comment


    • #3
      Re: What is "significant symptomatic improvement" after septal myectomy?

      twomedicine:

      As Gordon said everyone's experiance is different with this fickle and unusual disease.

      While the 1st week was a struggle come the sedond week while I stayed in the hotel attached to the Cleveand Clnic I wasw walking throughout the hospital complex a great deal. No shortness of breath. Now I did get ver tired doing that and would nap but it was amazing how much better I was and quickly with that hue obstuction gone.

      PRior to the urgery I could only make it up half a flight of stairs without resting and grasping for breath. Pushing a self propelled mower across a 30 foot lawn (note I said self propelled) was more than I could take and had to grab hold of the fence or garage to catch my breath, and like Gordan I had a number of fainting spells. The doctors prior to surgery pointed out that during just over 3 minutes on the tredmill my obstruction got so bd that all blood was cut off. Course I already knew that.

      Now I can easily walk 2 miles, 5 miles, up a flight of stairs, mow the entire lawn, work outside doing chores for hours. In my case it has been like being given a second life. I was the way I am describing after about 8 weeks post myectomy but would get very tired (as my heart was still healing). Afer I am gong to say 9 months I no longer get tired unless I really overdo it all day on a weekend but that probably has to do with the fact that I am 55 and overweght more than with my heart.

      I hope some of this helps and that you make the right decision for you. Good luck with whatever you decide and please keep us posted.

      Toodle pip... Moosedreams
      Diagnosed HCM Nov 2009
      100 mg Atenolol; Baby asprin
      First Trip to CCF June 2010
      HCM Specialist at CCF... Dr. Harry Lever
      Septal Myectomy at CCF... August 9th 2010: Dr. Nicholas Smidera
      AICD w/pacer at CCF... December 20th 2010

      Once you choose hope, anything's possible. ~ Christopher Reeve

      Since we can not run in the park, we can be the ones to take a stroll, look around and enjoy the simple things in life. ~ Rosemaire1125

      www.TheRhubarbChronicles.com

      Comment


      • #4
        Re: What is "significant symptomatic improvement" after septal myectomy?

        I had my surgery in mid May this year. I can honestly say that for several weeks after the surgery I wondered why I had put myself through this. I felt lousy and did not see any "significant improvement". However in looking back I realize now that I had set completely unreasonable expectations for myself. I had read where people could "feel a difference" in the hospital immediately after surgery. I made the assumption that because I was relatively young (53) and was in great health (except for my HCM) I would be one of these poster children for myectomy. I was not. In fact I had a few setbacks while in the hosptial that caused me to stay there 2 days longer than the average stay. Once I came home I realized that this recovery was going to be slower than I expected and that led to a few emotionally "down" days.

        The great news is it is now early September and time has given me much needed perspective on my surgery. I am feeling really, really good. I am now able to participate in activities that were very difficult for me just a few months ago. I realize I still have HCM, but I know the surgery has made living with this condition much easier. I am grateful that there was this option out there for me.

        My advice to you, should you decide the surgery is your best option, is to set reasonable expectations for yourself. Expect that you probably won't feel better immediately after surgery. In fact, you will probably feel pretty lousy at first. However as you begin the recovery process watch for slow signs of improvement and celebrate them. I clearly remember the day I walked up two flights of stairs at my home without stopping or even thinking about what I was doing. That was a small miracle that only those of us who have struggled with HCM can appreciate. Good luck with your decision. It isn't an easy one.

        Diane
        Myectomy
        CCF, May 2012
        Last edited by DianeE; 09-06-2012, 12:12 PM.

        Comment


        • #5
          Re: What is "significant symptomatic improvement" after septal myectomy?

          I had a myectomy two years ago and in the first year I saw vast improvement. I had almost no angina whereas before surgery I had pain often throughout the day. Just walking out to get the mail caused me great pain. Before surgery I had bought a lawn tractor to mow the lawn as I could no longer walk behind my self propelled mower. Now in the second year I have seen further improvement and I bought a new walk behind mower! I now have virtually no angina and I have taken up some serious table tennis and I exercise more frequently with no symptoms due to HCM. Most important to me, I am no longer depressed. My mood has greatly improved and my quality of life has never been better!
          Diagnosed HCM 1998
          Myectomy June 2010
          50 mg Toprol XL

          Comment


          • #6
            Re: What is "significant symptomatic improvement" after septal myectomy?

            There are big differences in patients going in.

            For my sister. She was to the point that walking slowly 20 feet down slope caused considerable chest pain. She was 26 years old at that point. A few days after the surgery when they first got her walking, this was 17 years ago remember, she could walk around the unit without any problems. She never quite made it back to her level of fitness of her teenage years, but she never had significant problems before the last months before she went into sudden cardiac arrest.

            For myself. While declaring me a candidate for surgery, doctors weren't urging me to have this. I probably could have went for years before having more than medication. I was fainting after walking up a minor slope when I decided I had enough. Chest tightness, dizzyness, and a lot of trouble breathing after exercise were common before my surgery. After the surgery I can actually reach the point of exhaustion before I have any issues. The most I deal with now is tingling in the hands and feet...Which I am going back to my cardiologist to discuss. My surgery was only four months ago.

            There is risk to the surgery. Around 95% improve according my literature from Mayo. Different sheets have different things. What the literature is more careful about discussing is the risks. One and a half percent die from complications in the surgery, under 1% for younger people. A couple percent gain new symptoms, usually requiring a pacemaker. And the rest of that five percent simply don't see improvement. So have a very serious discussion with the correct professionals about this surgery and its risks. It isn't for everyone.

            Comment


            • #7
              Re: What is "significant symptomatic improvement" after septal myectomy?

              Please remember that once your obstruction is removed, you will be unobstructed, but you will still have HCM. The HUGE question is what part of your symptoms are due to the obstruction and what is from the HCM itself. While most have improvement, that will only hold true if some of the symptoms are due to the obstruction.
              Onward and Upward !

              Diagnosed 4/07 HCM with fixed & dynamic obstruction
              Myectomy with resected cordonae tendonae 4/08 CCF
              ICD 10/08

              Comment


              • #8
                Re: What is "significant symptomatic improvement" after septal myectomy?

                I would also like to point out that it's entirely possible you have symptoms now that you don't find abnormal because it's how you've always been, but after myectomy you might find that those symptoms go away and you'll find out how normal people who don't have obstructed blood flow feel.
                Reenie

                ****************
                Husband has HCM.
                3 kids - ages 23, 21, & 19. All presently clear of HCM.

                Comment


                • #9
                  Re: What is "significant symptomatic improvement" after septal myectomy?

                  For me, it was a full year or more before I'd say I really knew that the surgery had made a real difference, though it's hard to term it "dramatic" difference. And I did end up needing to be paced -- I think the odds of that happening are higher than is sometimes discussed, since it's not always diagnosed in the hospital. The question is, since you have symptoms walking, and it affects exercise: what are the chances it will improve if you don't have the surgery? none, true? Those of us eligible for the surgery, and possible big improvements, are the lucky ones that way -- but I know how scary it is! Good luck.

                  Comment


                  • #10
                    Re: What is "significant symptomatic improvement" after septal myectomy?

                    Thanks to each of you for your responses. I do have a couple of follow-up questions, if you don't mind.

                    a. How long was it before your chest entry area was healed and you had no more pain / soreness?

                    b. How long was it before you felt comfortable lifting approximately 50 pounds?

                    c. It seems that I need more than eight hours of sleep to feel adequately rested. Does that ring any symptomatic bells with anyone? Post surgery, do you find that you are more rested after sleep and don't have to push yourself to get up and get going in the morning?

                    Thanks again.

                    Comment


                    • #11
                      Re: What is "significant symptomatic improvement" after septal myectomy?

                      I can respond to #c. Pre myectomy, pre medications, I needed about 14 hrs of sleep per day. Took about 45 min to get the energy to get out of bed. Upon returning home after work it was a nap from 5 - 7. Then came dinner and then bed by a bout 8:30. I took a nap on Saturday to help catch up and a nap on Sunday in hopes of getting ahead. After meds, but before my myectomy I was able to cut that down to about 10 hrs per day. Once fully recovered It is now about 7 hrs.
                      L
                      Onward and Upward !

                      Diagnosed 4/07 HCM with fixed & dynamic obstruction
                      Myectomy with resected cordonae tendonae 4/08 CCF
                      ICD 10/08

                      Comment


                      • #12
                        Re: What is "significant symptomatic improvement" after septal myectomy?

                        Please understand that HCM is a very individual disease and you can have two identical twins with the exact same obstructions and "numbers" yet each feels different, reacts to medicine different, and recovery for surgery will be different. For me - I really didn't have chest pain after surgery. Sternum was sore for a month and that made side-sleeping an issue, but by 2 months things were back to normal. I had back soreness longer than anything. Lifting was around 3 months - it was odd those first few weeks where mentally you feel fine, then you remember your recovery & can't lift that gallon of milk or 50 bag of dog food. Regarding sleeping - I think I may need more sleep now! Pre-surgery I was a 5-8 hour sleeper and if given the time (on weekends), I can stretch that to 8 easily!
                        Marc
                        Diagnosed @ 48
                        Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                        Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                        AICD - Valentines Day '08, Spark Plug replaced 11/14
                        After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                        Quietly going insane . . .

                        Comment


                        • #13
                          Re: What is "significant symptomatic improvement" after septal myectomy?

                          I didn't respond the first go round, but I will respond to both questions now.

                          Before surgery, I got to the point where I couldn't walk up the slightest incline without severe symptoms and I was avoiding even a slight grade. Now, I can walk the steepest hill without a problem. I was also on the verge of fainting often. That doesn't happen anymore. I had alot of chest pain before the surgery, esp. after meals. Now, I rarely have chest pain (though that did still take some medication adjustment after surgery).

                          As far as sleep, I am not sure I notice a huge difference. I sleep around 7 - 8 hours a night on most nights. I feel awful if I get less. I also try not to lift 50 lbs. ever, but I suppose I could have done it at maybe 6 mos. out. Not sure. They never really recommend heavy lifting with HCM and other than my child, or an occasional furniture move, I wouldn't attempt it.

                          Oh, one more thing. I wrote a blog about my myectomy and recovery. That might help you.

                          It is located at www.cynthiassummeradventure.blogspot.com
                          Daughter of Father with HCM
                          Diagnosed with HCM 1999.
                          Full term pregnancy - Son born 11/01
                          ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                          Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

                          Comment


                          • #14
                            Re: What is "significant symptomatic improvement" after septal myectomy?

                            Originally posted by twomedicine07 View Post
                            Thanks to each of you for your responses. I do have a couple of follow-up questions, if you don't mind.

                            a. How long was it before your chest entry area was healed and you had no more pain / soreness?

                            b. How long was it before you felt comfortable lifting approximately 50 pounds?

                            c. It seems that I need more than eight hours of sleep to feel adequately rested. Does that ring any symptomatic bells with anyone? Post surgery, do you find that you are more rested after sleep and don't have to push yourself to get up and get going in the morning?

                            Thanks again.
                            Skin takes about 3 to 4 weeks before you stop seeing changes to scar tissue. Longer if there is problems. The grinding feeling of the breast bone bumping together that you will experience after surgery will go away in a few weeks. How long will depend on how hard you are on yourself. To my utter surprise driving is very hard on me even 6 weeks after the surgery. I used that as an excuse, a legit excuse, to avoid several family gatherings that would have involved hours of travel. Some soreness comes and goes. I expect spells of soreness for years yet.

                            It felt safe to lift 50 pounds at seven weeks, comfortable at ten weeks.

                            The biggest problem I had with sleep was finding a way to do it. First problem I was coughing more than normal. I would wake up with couching fits every few hours once out of the ICU. Until I emptied my lungs of junk, I didn't get much normal sleep. Unless you have complications with your breathing tube, hopefully you won't have this. My best sleep came after I stuck pillows under both shoulders and neck while in a reclining position. The idea being to push the incision together from 4 directions.

                            Comment


                            • #15
                              Re: What is "significant symptomatic improvement" after septal myectomy?

                              Everyone here has given you excellent advice so far and I wanted to add that, regardless of whether or not you experience great improvements in symptoms, myectomy has been shown to improve life expectancy in those of us who have obstruction. So it's not entirely about the symptoms, the surgery can in fact provide you with a life expectancy similar to that of the general population. As far as I'm concerned, that was enough in itself... any relief from symptoms was just icing on the cake.

                              http://content.onlinejacc.org/articl...icleid=1136777
                              "Some days you're the dog... some days you're the hydrant."

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