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8 yr old Myectomy @ Mayo

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  • Daniel X
    replied
    Re: 8 yr old Myectomy @ Mayo

    Hey I had the operation when I was 17 at Mayo. I'd be happy to give your son advice. Just send a private message.

    Leave a comment:


  • Pam Alexson
    replied
    Re: 8 yr old Myectomy @ Mayo

    Clay ,

    Keep us posted .. Great to hear that your son checked OK.

    As Reenie says, "we have all been new to this...." and there is always still more to learn.

    Pam

    Leave a comment:


  • Reenie
    replied
    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

    Leave a comment:


  • ckvenable
    replied
    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

    Leave a comment:


  • Reenie
    replied
    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

    Leave a comment:


  • Pam Alexson
    replied
    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

    Leave a comment:


  • Linda
    replied
    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

    Leave a comment:


  • ckvenable
    replied
    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

    Leave a comment:


  • Janet McClure
    replied
    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

    Leave a comment:


  • mflanagn
    replied
    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.

    Leave a comment:


  • Alison Whybro
    replied
    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)

    Leave a comment:


  • Cynaburst
    replied
    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.

    Leave a comment:


  • goldie
    replied
    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?

    Leave a comment:


  • Cynaburst
    replied
    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.

    Leave a comment:


  • Midge Rollins
    replied
    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.

    Leave a comment:

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