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What can i expect my HCM to be like after Surgery

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  • What can i expect my HCM to be like after Surgery

    My cardiologist has just referred me to Prof Mckenna in London for possible septal reduction. I have a mid cavity obstruction which is causing some outflow obstruction as well. My septum measures 3.1 and i take 360mg of verapamil daily. I suffer from chest pain and breathlessness daily. My question is how will my symptoms be improved by surgery, as I understand that the surgery will not be a cure.

  • #2
    There isn't a cure but your symptoms should be significantly reduced. You should be able to go about life without the shortness of breath and other symptoms you currently have. I'm sure others will pop in soon to give their experiences.

    Reenie
    Reenie

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

    Comment


    • #3
      August 31st will be one year post myectomy for me.
      Though I didn't have much chest pain before myectomy, I did have lightheadedness & sob.

      Now, after my myectomy I am feeling great.
      My you do even better.

      Stuart
      Cleveland Myectomy Club
      August 31, 2004

      Comment


      • #4
        Enjoyed a very stressful day with Dr Perry Elliot of the London Heart Hospital, after many hours and two exercise tests, it has become evident that whilst I have a severe mid cavity obstruction, which completely fills the left ventricle on stress exercise, my outflow tract gradient is very low. The current view is that surgery is only undertaken for outflow tract obstruction. Does anybody know of surgery solely for mid cavity obstruction, and if so what was the outcome.

        I have been becoming more symptomatic over the last twelve months and have blacked out once due to symptoms. I do get sob and chest pain frequently, at least twice a week, and I'm desperate for some relief from this.

        Any help would be appreciated.

        Comment


        • #5
          Myectomy can bbe done to relieve mid-cavity obstuction in only a few centers. I know both Prof. McKenna and Dr.Elliot very well - they are great - however I am not sure if the surgeon at the "Heart Hospital" in London is skilled at mid-cavity obstuction.

          Best wishes,
          Lisa
          Knowledge is power ... Stay informed!
          YOU can make a difference - all you have to do is try!

          Dx age 12 current age 46 and counting!
          lost: 5 family members to HCM (SCD, Stroke, CHF)
          Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
          Therapy - ICD (implanted 97, 01, 04 and 11, medication
          Currently not obstructed
          Complications - unnecessary pacemaker and stroke (unrelated to each other)

          Comment


          • #6
            Good news, Dr Elliot is confident that the surgery can be done here in the UK, and has a very good surgeon available. So I am now awaiting a date for mid cavity septal reduction.

            Any ideas as to what its going to be like, i understand the first few days after are the worst.

            Comment


            • #7
              OK myectomy crew...time to step up and tell him what to expect!

              Yes the first 2 days are tough...but I will let those who lived it tell you more.

              Best wishes,
              Lisa
              Knowledge is power ... Stay informed!
              YOU can make a difference - all you have to do is try!

              Dx age 12 current age 46 and counting!
              lost: 5 family members to HCM (SCD, Stroke, CHF)
              Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
              Therapy - ICD (implanted 97, 01, 04 and 11, medication
              Currently not obstructed
              Complications - unnecessary pacemaker and stroke (unrelated to each other)

              Comment


              • #8
                Andrew,

                Best wishes to you for your upcoming surgery. I had myectomy surgery in June of this year and am doing quite well. Before surgery I had very bad chest pain doing simple things like walking up one set of stairs, and shortness of breath too. Now I can do things I couldn't have done before surgery. I am walking about 4 miles almost every day - WOW!

                As far as the surgery - When I woke up in ICU they took out the breathing tube rather quickly, and I hardly remember it. The drugs you are on take some of the memory away - and basically you're in la la land. Once I was moved out of ICU I could feel pain but it was not unbearable. I was at Mayo in Minnesota and they were adamant about controlling all pain. My hospital stay was 5 days. I was very very very sore for a while and exercising your lungs is a must. I was able to get back to work after 5 weeks but I think that was a bit sooner than most.

                If you have any more questions feel free to PM me. Also there is a ton of information all through the myectomy thread. I'm sure everyone else will give you more info on their personal experiences too. Take care!

                John
                41 years old. Diagnosed with HOCM in Feb 2005. Myectomy at Mayo on June 8, 2005

                Comment


                • #9
                  Hey man-

                  I had a myectomy about 8 months ago at Mayo and I feel great. I don't really even feel like I have HCM. However, the operation was the absolute worst thing I ever went through. I strongly encourage you to have people come over a lot and spend time with you while you heal. Having my freinds over playing video games and watching movies helped a lot. Also having my girlfreind over helped. After surgery you won't be able to eat anything with a lot of sodium in it for 2 months and that really sucks. I went back to school about 3 1/2 weeks after the operation, but that was a bad idea because I really wasn't ready as I found at about half-way through the day. The worst part is when they take the catheter and the chest tubes out, the ride home (4 hours for me), and getting in and out of bed. Once you get home and rest for a week, it is all gets better from then on. You should be just fine, people go through this all the time ( Bill Clinton, David Letterman, me). Actually in 2002, 709,000 people had open-heart surgery in the US according to Americanheart.org . You should be A-okay. Just walk a lot, and blow into the lung thing a lot. ohh yeah, one more thing, after surgery you might get really depressed. I did. Sometimes I just would start crying for no reason at all. I was told this is normal and it happens to a lot of people. Just to let you know. Goodluck

                  Comment


                  • #10
                    Re: What can i expect my HCM to be like after Surgery

                    Well i am all set now surgery schdued for May 10th. So from what you all say, i should be a new man soon. Thanks all for the info.

                    Comment


                    • #11
                      Re: What can i expect my HCM to be like after Surgery

                      Best of luck and please keep us posted on your progress.

                      Reenie
                      Reenie

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

                      Comment


                      • #12
                        Re: What can i expect my HCM to be like after Surgery

                        Hi Andrew,

                        I had a myectomy at The Cleveland Clinic Foundation almost a year ago.

                        Before my surgery, I could barely get through the day. I was so tired, and I was completely worn out by doing the most basic daily activities.

                        Now, I am like a new person. I have lost 20 pounds and I feel great!
                        I can do a regular day without ever even thinking about my HCM. And my kids are so happy they have their mom back.

                        God bless Dr. Smedira and Dr. Lever and Lisa Salberg. They saved my life.


                        Andrew, I wish you the best with your upcoming surgery. I will be praying for you.


                        Hugs,
                        Eve
                        49 yrs. old
                        Diagnosed at 31.
                        Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                        First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                        Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                        Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                        My brother passed away suddenly at 34 yrs old from HCM.
                        2 teenage children, ages 17 and 15.

                        Comment


                        • #13
                          Re: What can i expect my HCM to be like after Surgery

                          Hi,
                          I had my myectomy almost two years ago (5-17-04). It is unbelivable how much better I feel. I did spent 10 days at the Cleveland Clinic only because of some minor problems. The bad part for me was sleeping. I normally sleep on my side but because of the surgery I was told to sleep on my back for a couple of weeks. Once I got past that I was fine.

                          You just keep feeling better every day. I was lucky, I never really had any depression. The five hour ride home from the hospital was a little uncomfortable. But knowing your going home helps you get throught that.

                          Best of luck on the 10th. Please keep us informed.


                          Tigger1
                          " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

                          Comment


                          • #14
                            Re: What can i expect my HCM to be like after Surgery

                            Has anybody heard from Andrew or his family...


                            Tigger1
                            " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

                            Comment


                            • #15
                              Re: What can i expect my HCM to be like after Surgery

                              Andrew,
                              How did you surgery go? I also had a Myectomy on 5/10/06......let's cpmpare notes

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