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8 yr old Myectomy @ Mayo

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  • 8 yr old Myectomy @ Mayo

    Hello,
    My 8 year old son is having a myectomy at Mayo the first week in February. We don't have the exact date yet. We see Dr. Maron on 2/1 and he is going to send us to Mayo for surgery.

    Needless to say, we are scared. We don't really know what to expect from the the surgery and from Mayo. I have read many threads and blogs. I love the blog idea. I am going to try and create one for friends and family left at home.

    Has anyone had a child with HCM that has had a myectomy? I would like to talk to someone. Please give me your words of wisdom.

    Thank you for all your support.

    Elizabeth (Christie)
    Christie Dalton diag. 3/27/07: ICD on 4/25/07.
    Son diag. @ 6 and SCA at 8. ICD on 9/1/06.

  • #2
    Re: 8 yr old Myectomy @ Mayo

    Christie,
    The first thing you have to realize is that this sort of thing is always much harder on the parents then it ever is on the patient - - - and age has nothing to do with it. Next, the doctors involved are the best there are, as is the facility. Just think, this procedure will give your son his best chance at a normal life. Isn’t that something to be wished for?
    Burt

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    • #3
      Re: 8 yr old Myectomy @ Mayo

      I have never had a child with a myectomy but as a young adult the pediatric surgeon Dr. Puga at Mayo did my myectormy. There are others now that do them and all are excellent. Mayo is a great place and you will be in good hands. Burton is right it is harder on parents than the child. Prayers are coming your way.
      Midge

      Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
      ICD&Pacemaker 1996
      Heart transplant March 19, 2004 @ Mayo Rochester
      Mom of Kaye.

      Comment


      • #4
        Re: 8 yr old Myectomy @ Mayo

        I had a myectomy in August at Mayo done by Dr. Joe Dearani who is also THE pediatric heart surgeon at Mayo. He is amazing, his staff and the hospital staff are tops, and I couldn't recommend them highly enough. While the operation isn't a cakewalk, it isn't that bad either, and they really helped make it seem routine. I was out of the hospital in 4 days. There was a little boy around the corner from me who was 4 or so and who had OHS with Dr.D. the same day that I did, and he was doing great. I think that kids do better than adults...not that it is any easier for the parents.
        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


        • #5
          Re: 8 yr old Myectomy @ Mayo

          Originally posted by Cynaburst View Post
          I had a myectomy in August at Mayo done by Dr. Joe Dearani who is also THE pediatric heart surgeon at Mayo. He is amazing, his staff and the hospital staff are tops, and I couldn't recommend them highly enough. While the operation isn't a cakewalk, it isn't that bad either, and they really helped make it seem routine. I was out of the hospital in 4 days. There was a little boy around the corner from me who was 4 or so and who had OHS with Dr.D. the same day that I did, and he was doing great. I think that kids do better than adults...not that it is any easier for the parents.
          You were home in 4 days. That's fantastic. My husband is having this surgery sometime in the near future and I was wondering how long he would be in hospital. How long were you off work? What home instructions regarding your care were given to you?

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          • #6
            Re: 8 yr old Myectomy @ Mayo

            4 days is really the shortest I have heard of. I think 5 - 7 days in the hospital is more average. I was off of work for 8 weeks, although I probably could have gone back a little sooner. I have a desk job though. My main problem keeping me home was that I was tired, and had to take a nap every afternoon. I would exercise in the morning, and that would wipe me out for the afternoon.

            When I got home, I really didn't have any special needs except taking it easy, and trying to walk alot. Building up is key. I was able to dress myself and shower and even prepare simple foods right from the get go. I guess the main part of the recovery was building up strength. That still continues today, 5 months out. I continue to exercise every day, and try to push myself to go a little faster and harder.
            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


            • #7
              Re: 8 yr old Myectomy @ Mayo

              My 10 year old daughter has had two myectomies - one when she was three and one last September. She was in hospital for 6 days and off school for six weeks, returning for half days to start with. As other people have mentioned, most of the recovery time is to get back strength and allow the body to recover. Children are amazingly resilient! My daughter was back at her jazz dance class in no time and even passed her grade 2 exam in November with Honours, despite the fact that she had missed so many lessons.

              My thoughts and prayers are with you as you wait for the surgery date (the waiting is the difficult bit).

              Take care and bye for now,

              Alison (NZ)

              Comment


              • #8
                Re: 8 yr old Myectomy @ Mayo

                Hello Christie,

                I am a mom to two children who have both undergone myectomy surgery. Krista my oldest (now 15 1/2) had her myectomy when she was almost 5 yrs old. My son (now 12 1/2) had his myectomy when he was almost 3 yrs old. We had our surgeries in Milwaukee at the Children's Hospital. My kids, as you can read by their ages, came through the surgery very well. They are doing great. Very typical teenagers causing me to grow more and more gray hairs. If you have specific questions, you can private message me. I will try to remember and tell you what I can.
                Michelle - mom to Krista and Tyler both HCM
                Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
                Tyler surgery: 1/98 myectomy

                Comment


                • #9
                  Re: 8 yr old Myectomy @ Mayo

                  I can fully understand how you are feeling. My eleven year old son was diagnosed two years ago tomorrow and had a myectomy at Boston, MA one year ago this month. It was alll quite overwhelming. However, he is doing so awesome now. He is like a different child. I will admit I was scared for my son. But the doctors were so amazing and I am so thankful we did that. We did have a few small complications but they were quickly addressed and he did so great!!! I had a full detail on here and even had pictures of all our whole experience while James was in the hospital. Do a search on my name and you should be able to see them

                  I will be happy to talk to you. I am thinking of you and am confident everything will go great. Janet
                  My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

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                  • #10
                    Re: 8 yr old Myectomy @ Mayo

                    Our 8 year old daughter was just diagnosed with HCM. Although we were initially devasted to hear the news, we are keeping a positive attitude. We are a little more than a week into our journey and have a lot of questions.

                    Currently, we are at Vanderbilt Childrens with an excellent team of doctors. Next week we go for more tests. My daughter's HCM is unobstructed and may not be a candidate for a myectomy or an ablation. Has anyone had a child with unobstructed HCM and been able to have either of these procedures? After recovery, how active can they be? Can kids return to normal activities, such as sports or dance?

                    We would love to hear from someone who is in a simmilar situation.

                    Thank you
                    Clay & Kim Venable

                    Comment


                    • #11
                      Re: 8 yr old Myectomy @ Mayo

                      Welcome Clay and Kim - I'm sorry to learn of your daughter's diagnosis, but glad you've found the HCMA. Please call the office next wk and talk. You will be pleased with the info you receive. You can also schedule a time that both of you can be in on the conversation. Best wishes - Linda

                      Comment


                      • #12
                        Re: 8 yr old Myectomy @ Mayo

                        Clay and Kim ,

                        I also welcome you. It is always tough to hear about our younger HCM people. Please know that others who have had a similar experience with their children will offer their help. Do call the HCMA office.

                        Pam
                        Dx @ 47 with HOCM & HF:11/00
                        Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                        Lead failure,replaced 12/06.
                        SF lead recall:07,extracted leads and new device 2012
                        [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                        Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                        Genetic mutation 4/09, mother(d), brother, son, gene+
                        Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                        Comment


                        • #13
                          Re: 8 yr old Myectomy @ Mayo

                          To answer your question about myectomy or ablation in regards to unobstructive HCM, it isn't done. Neither procedure is a cure for HCM, they just remove the obstruction so the blood flows more normally and many symptoms disappear. An ablation wouldn't be recommended by specialists in your daughter's case anyway because there is little long-term data on it for younger people. Your daughter should be able to live a normal life with a normal childhood, but she should avoid competitive sports. Please call the HCMA office and they can give you guidelines and help you find a doctor who understands HCM. Although her current doctor may know a bit about HCM, just because she's at a large center doesn't mean her doctors are very well versed in this complex disease. Good luck.

                          Reenie
                          Reenie

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

                          Comment


                          • #14
                            Re: 8 yr old Myectomy @ Mayo

                            Reenie,

                            Thank you for the info on ablation & myectomy. As I said in my first post, we are just beginning our journey with this. We have not broached this subject with our doctors yet. My daughter still has more tests. She will have an MRI and a stress test this week. There is still a very slight chance that she has a tumor. Last week she wore a Holter monitor to check for arrhythmias. The results came back negative.

                            Her doctors at Vanderbilt are very good and fully understand HCM. The entire cardiology dept and a cardiovascular surgeon has looked at her case. The lead doctor specializes in myopathies. If she needs to go to Mayo or somewhere else, they will not hesitate to send her. Vanderbilt Children's Hospital is one of the top children's hospitals in the country and we are very confident in the care my daughter will receive.

                            We have received some good news. Our son's echo came back showing a normal healthy heart. I go for my echo tomorrow.

                            Thanks again for the info.

                            Clay Venable

                            Comment


                            • #15
                              Re: 8 yr old Myectomy @ Mayo

                              I'm so happy your son's echo is normal for now! I know what a relief that is. I have three children of my own and they've been screened every year since 2000, after my husband's diagnosis. I know this is a lot for you to take in, but take your time. Remember to breathe every now and then. You seem to be getting great care and you are willing to be her advocate. That's a great big part of the battle. Please ask any questions you want, vent, laugh, cry, or just talk to us. Everyone here has been where you are now, either with themselves or with loved ones. We've all been new to HCM at one time or another.

                              Reenie
                              Reenie

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

                              Comment

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