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Myectomy scheduled March 15 in Australia

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  • Myectomy scheduled March 15 in Australia

    Hi everyone.

    I have decided to undergo a Myectomy (after much research and hard decision making) here in Melbourne Australia on March 15. It has been a difficult decision to make, compounded by the fact that a lot of the time I feel pretty good and even go surfing. But I get periods when I am really not well, especially during the summer when it gets hot: I get that pressure gradient 'sensation', which is diffult to describe, but feels like my throat is tight and someone is pushing on my chest. This for me is the worst part - perhaps you guys know what I am talking about? I rarely get chest pain, probably because I take atenolol. But as some of you will know, Beta Blockers do little for resting gradients (mine is in the high 70s at rest), and only increase exercise tolerance. Verapamil is the alternative, but I have severe SAM and obstruction (my septum is around 30 mm). Calcium antagonists (like Verapamil) therefore exacerbate the obstruction and make me feel even worse.

    I suppose what has made up my mind is the fact that I also get arrythmias and pre-syncope (near blacking out). Every HCM specialist I have talked to (including Chris Semsarian in Sydney who is a friend of Dr. Maron), thinks I am at high risk of sudden death. So, rather than just do an ICD, I have decided to do a Myectomy. There is some speculation (but not proven) that by releaving the pressure gradient and reducing ventricular wall stress, the chance of fatal arrythmias may also be reduced. I'm only 35 and otherwise very fit, so I should be able to breeze throught the operation! I'm not that worried - the risk of death is around 1% they tell me, and the risk of stroke, infection etc. another 1%. But hey, if I do nothing, the chances of me dropping dead are probably much higher!

    Well, hope you are all doing well out there.

    Paul
    Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

  • #2
    Paul,

    I'm glad to hear that you have made your decision and are comfortable with it. The symptoms you described are very familiar to most of us. I've had the pain in my neck as well... which my docs told me is caused by the obstruction. I've also heard that having the myectomy lowered my chances of sudden death, but i don't know if there is conclusive evidence of that.

    Good luck to you! Be sure to keep us posted on how things are going, and please don't be afraid to ask questions from those of us here who have had the surgery done.

    Take care,

    Jim
    "Some days you're the dog... some days you're the hydrant."

    Comment


    • #3
      Good luck with the upcoming surgery. I hope all goes smoothly for you! If you are at high risk for sudden death, maybe you could get the ICD and the myectomy? Just a thought. Please keep us posted on your progress.

      Reenie
      Reenie

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

      Comment


      • #4
        Thanks guys. Do any of you know what the drawbacks are to having an ICD. Do they limit your movement (I swim and surf a lot)?

        Cheers,

        Paul
        Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

        Comment


        • #5
          Paul,

          I don't currently have an ICD but have done quite a bit of research on it. If you use the search function here you will find many posts which will answer most of your questions. From what i understand you are only limited in movement during the recovery and healing period, however i have read posts indicating that down the road there is still some occasional discomfort when certain muscles are stretched.

          Perhaps you should post a message in the Devices Forum with all your ICD-specific questions. You will get a buttload of advice and support from those who have already had their ICD's implanted.

          Take care,

          Jim
          "Some days you're the dog... some days you're the hydrant."

          Comment


          • #6
            icd

            Paul - I have had an ICD for many years now and in my opinion it does not hinder a person with an active lifestyle in the least. I barely know I have it at this point. If you are active and with this condition it is more beneficial to have it rather than not..

            Vinnie

            Comment


            • #7
              I don't think my husband has any restrictions or impedement of movement since the ICD implantation. He pretty much does what he wants to do. The only time his bothers him is when it's accidentally bumped. His also got placed a little far left and the bottom corner sticks out a little. We have to watch the skin over that corner to be sure it doesn't get too thinned. Next device he gets will likely be smaller and will not stick out like this one. He's had it four and a half years.

              Reenie
              Reenie

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

              Comment


              • #8
                Reenie
                the ICD's have gotten much smaller they are smaller now then they were 2 years ago my son's is very small compared to mine and he has had his since August of this last year,


                Paul if it is advisable that you get one i would go for it, they do save your life and they just don't implant them on a whim they are too expensive for that well you take care and i hope everything goes well for you

                Shirley
                Diagnosed 2003
                Myectomy 2-23-2004
                Husband: Ken
                Son: John diagnosed 2004
                Daughter: Janet (free of HCM)

                Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                Comment


                • #9
                  Hi guys,

                  Thanks for all the replies. This might sound strange, but I am really looking forward to my surgery. For a start, I will have 4-6 weeks off work..! (no, just kidding, that's not the real reason but it is a bonus).

                  But it will be great to get some relief from what are sometimes unbearable symptoms. Take today for example: off to work here in Melbourne at 7:30 AM. Feel fine, work all day, then around 3 PM start having arrythmias - really nasty ones that are taking my breath away and making me light headed. When I finally get home I feel just yuck - weak, breathless, pressure gradient, confused....I'm sure some of you know the deal. But I've promised to take care of our beautiful 7 month old baby girl Kalani while my wife goes out for dinner with some of her colleagues from work. So here I am, feeling terrible and worrying that if anthing happens to me, my baby is all alone.....

                  So, for me the surgery (less than 4 weeks away) offers hope that things might improve. Shirley, I may even get an ICD after the surgery - it would really be a weight of my mind!

                  Other than the HOCM, everthing in my life is perfect - I just want that chance to enjoy it!

                  Paul
                  -------------------
                  HOCM, diagnosed age 26 in 1995, no interventions, first one in family to have HCM, myectomy planned March 15.
                  Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

                  Comment


                  • #10
                    Chris Semsarian is a good person to work with, he knows what he is doing. I think you have made an excellent choice and have done your homework very well. Congratulations on finding your way through this complicated path to an answer that is best for YOU.

                    Take care,
                    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


                    • #11
                      I'm still thinking of you. I hope all went well with the baby!

                      Reenie
                      Reenie

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

                      Comment


                      • #12
                        Hi Paul,

                        Please consider getting an ICD. I know a young lady in Florida that had a myectomy done about a year ago, she also has an ICD. In the past couple of months it has shocked her heart 4 times, all due to v-fib.

                        I am not trying to freak you out or scare you, but I just wanted you to know that a myectomy will not necessarily stop an arrhythmia like v-fib.

                        I am also a candidate for a myectomy and I have significant gradient problems everyday. My septal wall is 27mm. Evenings are the worse for me, I really stuggle. It is a huge chore to get anything done, even walk across the house. I get arrythmias and pre-syncope daily. My resting gradient is around 50. Vacuuming my house is like an Olympic Sport.



                        Verapamil is the alternative, but I have severe SAM and obstruction (my septum is around 30 mm). Calcium antagonists (like Verapamil) therefore exacerbate the obstruction and make me feel even worse.
                        Thank you for mentioning this. I tried Verapamil and I felt worse on it. Cardizem was much worse than Verapamil. Calcium Channel Blockers make it harder for me to breathe while doing things.

                        I wish you all the best

                        Eileen
                        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
                          Hi guys,

                          All went well with the baby. She went to sleep straight away and I just sat down and tried to relax. Thanks for the concern.

                          Eileen,

                          My specialist in Sydney explained the drawbacks of Verapamil etc. in a detailed letter and provided some articles for further reading. Apparently, drugs like Verapamil act as peripheral vasodilators (i.e. they make you blood vessels etc. become larger). They may therefore increase the gradient across the outflow tract. If I am not mistaken, this is because the pressure outside of the heart would become lower (because your blood vessels are bigger), while the pressure inside the heart (i.e. in the left ventricle) etc. remains high: thus you get a larger ratio. Its all a bit complicated...

                          Sounds like are ready to do something about your symtoms?? The biggest problem for me in making the decision was acknowledging how bad my symptoms were. It was (and is) a particularly difficult decision because I am not bad all the time and many days I am great.

                          But at other times, I am terrible, even at rest. Its completely strange because I will be sitting down, with no symptoms and all of a sudden, I get that pressure gradient sensation (do you know what I mean??). When this happens, I am not even getting chest pain. Its just this pressure I feel in my chest and throat - it also feels difficult to breach smoothly. Does this happen to you?

                          I do not understand why this is and no one has really explained it to me properly. I think, however, that it is probably caused by a combination of factors, such as how dehydrated I am and how "turned on" my sympathetic nervous system is.

                          I hope you make a decision about getting some treatment. Its no way to live. I also get terrible chest pain after big meals in the evening and getting off the couch can be excruciating. One way I have got around this problem is to eat small meals. I also don't eat cakes etc. as some foods can make me go from fine to disabled in the space of 5 minutes!

                          Best of luck and keep me posted on what your plans are.

                          Paul
                          Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

                          Comment


                          • #14
                            Hi Paul,

                            I am so sorry it has taken me so long to reply. I have been wiped out lately and these PVCs are driving me crazy. Anyway...

                            I feel worse when I take Verapamil. I get much more short of breath while doing things, and much more chest pressure. But it sure does slow my heart rate down. The PVCs are so slow and I can see that side of my chest move when I have them, it's freaky.

                            Thank you for the explaination of what Verapamil does, it makes sense why I feel like I do when I take it.

                            About my symptoms, the only thing I can try to do now is.. I am applying for disability, then hopefully I will get on Medicare.
                            I do not have insurance. Years ago I also had Thyroid Cancer, that combined with HOCM, health insurance companies did not want to insure me. (A long time ago, one company agreed to insure me, but they would not cover my thyroid or my heart - then why do I need them?)

                            I have recently called some health insurance companies and no one will insure me, they won't even talk to me. My new cardiologist says that I need insurance of some type or Medicare before they can schedule me for an consultation concerning a myectomy. Until then there is nothing they can do for me.

                            I used to have "good" days, but no more. I don't know what happened. In the past 6 months or so it seems that I have been getting worse. I have constant lower leg pain and this and that .... on and on, don't want to bore everyone.


                            But at other times, I am terrible, even at rest. Its completely strange because I will be sitting down, with no symptoms and all of a sudden, I get that pressure gradient sensation (do you know what I mean??). When this happens, I am not even getting chest pain. Its just this pressure I feel in my chest and throat - it also feels difficult to breach smoothly. Does this happen to you?
                            Yep it sure does. I get that too - ugh.

                            I also get terrible chest pain after big meals in the evening and getting off the couch can be excruciating. One way I have got around this problem is to eat small meals. I also don't eat cakes etc. as some foods can make me go from fine to disabled in the space of 5 minutes!
                            Oh yeah, a big meal will do me in - everytime. I must eat smaller meals. I'll see some of the commercials on TV for different resturants and I'll see the portions of food and I think, oh my God, I could never eat all that at once.

                            In fact, I cannot have any caffeine, and no chocolate and I do not drink any alcohol. I have not done any of these for years now. Chocolate and caffeine is the worst for me. It reeks havoc on my heart. So does too much sugar and carbs.

                            How are you doing? I am happy for you and your decision to have the myectomy done. I sincerley wish you all the best with the surgery, recovery and results. Some people have done really well and feel so much better because of it. I have a good feeling about yours.

                            Hugs,
                            Eileen
                            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

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