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teenage myectomy


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pmurphy Find out more about pmurphy
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  • teenage myectomy

    I'm a regular reader and a very occasional poster here, but have been involved with the HCMA since our daughter Caitlyn (now 14) was diagnosed 2 and 1/2 years ago. I guess it's time for an update.

    Over New Year's we were in Boston at Tuft's HCM clinic for the first time and it was an amazing place. EVERYONE we met there was great, from Celeste in the front office to the tech, Jessica, to the doctors, Marty Maron and Jim Udelson (we didn't meet Dr. Link). The time they spent with us and the concern shown was beyond what we might have ever expected.

    Although Caitlyn’s HCM is obstructed and she has displayed pretty high gradient levels in the past, we thought that it was being controlled effectively by her meds (300 mg. of Veralan); and it was...until this Fall when the numbers jumped significantly from resting levels of 20s and 30s to just over 100. When her local cardiologist (who we truly like and respect, but has not seen many HOCM cases) suggested we investigate alcohol ablation we decided it was definitely time to seek out an evaluation by an HCM specialist. We’d met ‘the young Dr. Maron” (I bet he’d hate me calling him that!) as well as his father at HCMA meetings and the big HCM medical conference in Minneapolis last year so we felt very comfortable going to Boston to see Martin Maron. Caitlyn’s gradient in Boston registered at 130-140, with peaks in the 170-180 range and although she is only very mildly symptomatic (and she wouldn’t even admit to that) they (Drs. Maron and Udelson) felt like both the long term and short term dangers to her heart with such a high gradient warranted recommending surgery. So she’s now scheduled on Feb. 24 for a myectomy in Boston.

    We have educated ourselves pretty much about HCM since Caitlyn’s diagnosis but this has still come like a cold bucket of Gatorade on our heads. I think we accept it now as the best and surest way to ensure Caitlyn’s immediate and long term health but it has been difficult, especially I think since she’s not experiencing severe symptoms at present. Caitlyn is very sensitive about it all and has never actually told any of her friends about her HCM up to now, as she really didn’t have to. As you would expect from any 14 year old girl, she just wants to be like everybody else.

    We are of course concerned for her about scarring and if anyone has any experience with myectomy recovery time and scarring in a teenager we would love to hear from you. Although Tufts is fairly new to the myectomy business, I have heard and experienced only great things there and have great confidence in them. That said, it’s still damn scary!

    While we were in Boston we spent a lot of time with Lisa and her family and had the BEST time imaginable! There was good food and New Year’s fun in abundance! She is a remarkable individual and we had a really great time there as well with Adam, Becca, and Stacey.

    Paul and Elizabeth
    Decatur, GA

  • #2
    Re: teenage myectomy


    I know the thought of your child having open heart surgery is very scary! I have been there and I would definetly handle it better if it were me rather then my child!

    About your question with the scarring and recovery time..... you might be interested in looking at my son's "surgery" page where I have pictures of his incisions and scars. Please keep in mind that he is a keloid healer, which is not the "norm"! Other then where the keloid formed on his myectomy scar you will see that later his scar is very faint. His ICD implant scar also formed a keloid, but where there are no keloids, the scars are very hard to see anymore.

    One of the pictures on this page was taken 7 days after his myectomy and he looks wonderfully healthy! He felt good by then too! I remember on the 4th day he was bouncing around in his hospital bed and it was all we could do to keep him slowed down already!

    Here is the link http://<a href="http://www.designsby...eep us posted!
    mom to Andrew(HCM) 21 years old
    Diagnosed \'95 age 5
    Myectomy \'96 age 6
    ICD implant \'99 age 9
    First ICD shock (X2) \'04
    ICD replacement surgery \'05 age 15

    *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)


    • #3
      Re: teenage myectomy


      My kids had their myectomy's when they were little, but I would imagine the healing time would be approximatley the same. My kids were out of the hospital and home in 6 days. The scars healed up nicely. My sons is a very faint line hardly noticeable. He walks around without a shirt all summer. My daughter's is a little more noticeable. Hers is wider than her brother's, but she had 2 open heart surgeries. She doesn't wear shirts that open down real low, and she doesn't wear bikini's that are not tank type to cover the lower half of her scar, which is the worst part. Other than that, they healed and were back to school within 3-4 weeks.

      I don't know if this helps any. I hope it does.
      Michelle - mom to Krista and Tyler both HCM
      Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
      Tyler surgery: 1/98 myectomy


      • #4
        Re: teenage myectomy

        Thank you, Dolly and Michelle, for your posts about Andrew and about Tyler and . It always is beneficial to talk to those who have been through it. We are now about two weeks away from surgery and have most all of the arrangements set. Caitlyn is dealing with it in her own way, with lots of love from us. What they say seems true: kids are amazingly resilient. One minute she's angry and PO'ed at the world and the next she's happy and excited about her new tennis shoes.

        As I mentioned in our original post, we really loved all the staff and doctors we met up at Tufts and in the mean time have heard only further good things about them. It's a good feeling to go into this with such a confidence and rapport with your care providers. As scary and awful as this is, we feel blessed in so very many ways.

        We bought Caitlyn a laptop to keep up with her homework during all of this, so we'll certainly borrow it to keep the message board posted when we get to surgery time!

        Paul and Elizabeth


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