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My mom is up for a Myectomy... What can we expect?

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  • My mom is up for a Myectomy... What can we expect?

    So, the time has come... My mom needs a myectomy. She and I just wanted to know what to expect with the procedure. What's the recovery time? How long will she be in the hospital? Is it painful? Anything about the procedure would be helpful.

    Thanks!
    -Jim

  • #2
    We have had several HCMA members go through a myectomy in the last few years. I'm sure some of them will jump in soon with their thoughts. I do know that you can expect her to be in the hospital about a week to 10 days following surgery, there will likely be some residual neck pain, and that the sternum will take a long time to heal. She will need to use a pillow to cough and sneeze (and laugh) for a while.

    Most of the myectomy veterans here are really happy they went through with the surgery. Just be sure she goes to a center that does a lot of myectomies so you know that they know what they're doing. The top centers in the US are in Rochester, Minnesota and Cleveland, Ohio but there are a few other centers that have good experience.

    Reenie
    Reenie

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

    Comment


    • #3
      I spoke to Lisa at the HCMA office today, and she highly recommended Mayo & Cleveland Clinic, so I'm definitely gonna talk my mom into getting to one of those places. I just worry a lot about my mom, because I kind of get the feeling that this is going to happen to me, since from what I understand, the condition usually patterns the person you got it from. So, I want to know what I'll be expecting a few years down the road.

      Comment


      • #4
        I had a myectomy last March 18th 2004 along with a double bypass and I am soooooooooooo glad I did it! I was 63 at the time and all the complications I had aside, the pain in the stirnum was no big deal and she'll feel weak for a number of weeks depending on how she does her rehab. The worse part of the whole thing was just after the surgery during recovery when I still had the breathiing tube in my throat. It was awful. They took it out about an hour or so after I regained my sences.

        I feel fanastic now and even with all the problems I had then I'd go back and do it again TODAY, even if I knew I'd have complications.

        Ralph

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        • #5
          Ralph-

          Where did you have the procedure done?

          -Jim

          Comment


          • #6
            Hi Jim,

            It's so wonderful that you are taking an active role in supporting your Mom during her decision and surgery! Your questions and concerns are common ones among all of us that have had myectomies or considered one. If you haven't you might run a search on the website to take a look at previous postings. Some that are specifically on point that I found very quickly for you to look at which might be helpful are below as well. I know they are dated 2003 but please know the info is relevant and there are more threads like them from 2004.

            I apologize for the brevity of my response to you as I am typing from work. Please let me know if I can help out more - we love questions around here!


            http://forum.4hcm.org/viewtopic.php?t=2620&highlight=

            http://forum.4hcm.org/viewtopic.php?t=2301&highlight=

            http://forum.4hcm.org/viewtopic.php?t=2044&highlight=

            All the very best!
            Lynn
            Lynn Stewart
            HOCM 4/2002
            Cleveland Myectomy Crew 8/2002

            Comment


            • #7
              Jim, I had my procedures done at the Cleveland Clinic. I can't say enough about how wonderful they are. I went to Dr. Harry Lever at first for a consult and Dr. Nick Smedira did the surgery. The entire staff really have their act together. I would have no problem recommending CCF. If you wish more detailed information let me know.

              I wish you and your Mom well

              Ralph

              Comment


              • #8
                Another thing that your mother may want to be aware of, but not worry about, is that many myectomy patients comment on "fuzzy brain" when they're post-surgery. This might last a while, but will gradually get better. It's caused by the heart/lung machine. The effects can last from a week or so to several months. Just don't let her think she's losing her mind when she can't remember things as easily as she used to for a while.

                Reenie
                Reenie

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

                Comment


                • #9
                  Hey man, I just had my myectomy 5 weeks and 1 day ago. I feel really good, but i've been getting better every day. I had it done when I was 17, but I turned 18 a couple weeks ago. I had it done at Mayo. The procedure for me was very tough. I wasen't really as ready for it as I thought I was. I think the best advice I can give you is to make sure you are surrounded by people who you care about during the hospital stay, and after you get home from the hospital. It really helps to have people to talk to. The first 2 weeks are the worst, and I had some very tough times during those first two weeks, but once I got past those first two weeks it was much better and from there it just gets better and better. My symptoms have improved a lot and I have been going out with my friends and having fun again and it has only been 5 weeks. I returned to school after 3 weeks and 4 days ( im a senior in high school) and I think I will be fully recovered soon. I would recommend this for anyone who has bad symptoms because I feel better and better every day and from what I hear it just keeps getting better. My doc tells me I can play basketball again in a couple weeks and go jogging or whatever so I can't wait to see how better I feel when doing physicaly demanding things. Good luck with it and if ya have questions just holla. --Peace

                  Comment


                  • #10
                    The amount of responses I've received from everyone has been amazing. It's great to know that there are people out there going through the same things as my mom and me. It kind of makes me feel like I'm not alone anymore.

                    -Jim

                    Comment


                    • #11
                      Nope, you aren't alone any more. You'll find literally hundreds of people here who know how you feel and where you're coming from when you say you don't feel so good today. Any chance you guys can make it to Jersey the first weekend in June? You'd be amazed at the information you can learn from other HCM'ers and the doctors who present the information. Sometimes, though, the first-person experiences are the best.

                      Reenie
                      Reenie

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

                      Comment


                      • #12
                        My mom gave our regular cardiologist (Dr. Patricia Cole out of Missouri Baptist Medical Center) a call today and she suggested a doctor at Barnes-Jewish here in St. Louis for the myectomy, however, she still suggested that my mom get a consult from Cleveland or Mayo. (I love my cardiologist, she's so normal and doesn't have the ego like a regular MD) Anyway... I was just wondering if anyone knew anything about this doctor? His name is Dr. Ralph Damiano and he's at Barnes-Jewish (#8 hospital in the country, #11 heart hospital -- I work there, so no bias at all). Dr. Cole said that Dr. Damiano has done multiple myectomies and is fairly experienced with people with HCM. If anyone has heard anything or knows anything about Dr. Damiano, please let me know.

                        -Jim

                        Comment


                        • #13
                          Hey Jim,

                          You are getting lots of good advice here. The top clinics have been mentioned but one was left out. It is the crew at New England Medical Center here in Boston Mass. Everyone who has been to any of these centers will for the most part be biased toward the center they went to and I am not going to be an exception. Boston is great! I would recommend going to one of the major centers, however. The care you get before and after the actual surgery is as important as the surgery itself. It helps to have nursing staff who know the special needs of a myectomy patient. So it comes down to where you want to go or maybe if you have relatives nearby one of the centers to stay with for a few days after discharge. At any rate, good luck to your mom and you. Getting information is the best place to start.
                          Doug
                          NEMC's (Boston) First Myectomy 7-22-2003

                          Comment


                          • #14
                            Jim,
                            The "Myectomy" decision, is definitley a "Big" decision.. I only considered 2 places: Mayo & Cleveland. I suggest going where they have the most experience, which is Mayo/Cleveland. As my local Cardio advised me, "Once it's done, it's done, they can't go back". For me, it was well worth all that accompanies the recovery (once you're past 6 weeks, you're glad you did it). Far better to expect a longer recovery & pain & then to be pleasantly surprozed, when it's all so manageable!
                            We will all be more than happy to answer questions & provide any insight you & your Mom have.
                            You are a Wonderful Son & your Mother must be very proud of you.
                            It would be appropriate ( agreat idea), for you to be tested, by a Cadio to see if you have signs of HCM.
                            RONNIE

                            Comment


                            • #15
                              Ronnie-
                              My mom's going to start calling doctors this week. She's going to get a screening here at Barnes-Jewish, one at Cleveland and one at Mayo and then she's going to go where she feels most comfortable -- this was all suggested by our cardiologist. So, hopefully she'll pick the best place. I can only do so much to persuade her to go Mayo or Cleveland.

                              Also, I do have HCM. They detected mine before they found my mom's. All of the cardiologists we've been to were very surprised that it took 35 years for a doctor to diagnose her. (I was 13 when diagnosed [now I'm 22] and my mom was 36 when diagnosed [she's now 45].) It just sucks that she's worse off with the HCM than I am. She's more symptomatic and has a lot more complications than I do. But such is life.

                              -Jim

                              PS
                              Thanks again to everyone for their helpfulness!

                              Comment

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