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Brian, 9 has gradient of 200 and is going for a myectomy/ICD

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Sheila and Paul We are a family of four - Brian has had a myectomy 2006. Find out more about Sheila and Paul
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  • Brian, 9 has gradient of 200 and is going for a myectomy/ICD

    Brian just got back from tests at the hospital - his gradient is 200 and they are hoping to get him to surgery in the next two weeks in Toronto. Nine months ago at his last checkup his gradient was 70.

    Has anyone had a child with that much of a gradient? Also his septum measurement is 4cm.

    Any replies are appreciated.

    Sincerely, Sheila and Paul
    Sheila

  • #2
    Sheila and Paul, Welcome to the site. I'm glad you've found us. You've gotten some pretty shocking news, and it's going to be tough for Brian to take it all in also. Two wks isn't long to plan, but you will get thru this whole thing with the love and support of family and friends. We had just about one wk's notice when my son had his myectomy, but you do what you have to do.

    Try to call Lisa and talk with her. Talking to her will give you much reassurance about the surgery, Toronto, and just HCM in general. I know you will have quite a few responses here, offering you much support and info. Please keep us informed, and know that our best wishes and prayers are with you all. Linda

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    • #3
      Hi, Sheila and Paul,

      I am sure I speak for all of us when I say that we are so sorry that your family has to go through this. There are several parents of young children who have had myectomies who are writing on this board. I am sure that they will have more to contribute to you. I do know that most children do very well with this and recover well, so that is what I will pray for you and for Brian.

      Rhoda

      Comment


      • #4
        Hi Sheila and Paul. Welcome to the HCMA. There are others here who have children who've gone through a myectomy. I'm sure they will be glad to share their experiences with you. Please do give Lisa a call. Her phone number is 973-983-7429 and she will be in the office on Tuesday.

        I'm posting a link to a thread where a 5 year old boy had a myectomy earlier this year. He's doing really well now.

        http://www.4hcm.org/phpBB2/viewtopic...973&highlight=

        Also check out posts from mflanagan. Both of her children have had myectomies. Best of luck. We're here for you.

        Reenie
        Reenie

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

        Comment


        • #5
          Thanks everyone. This website is really a wonderful place for support!

          Lisa started something great.

          I will let you know how Brian progresses.

          Sincerly,
          Sheila and Paul
          Sheila

          Comment


          • #6
            Hi Sheila,

            My son Andrew had a myectomy when he was 6 years old. His gradient was not near as high as Brian's at the time of the surgery, but it had increased pretty drastically in a short amount of time also.

            Andrew had absolutely no complications at all after his myectomy and he recovered very quickly. (Home in 6 days!) He had his done at Mayo clinic. The surgery was a huge success! His septum has continued to grow (up to 3cm now)but in the 9 years since his myectomy the obstruction has not returned to a point that it needs any intervention. So I consider that a success and well worth it!

            I am sorry you all have to go through surgery. I know it is very hard when it is your child and my heart goes out to you! Please just ask if you have any more questions!

            best of luck and please keep us updated.
            Dolly~
            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)

            Comment


            • #7
              A little background. Sheila while new to the message board is not new to the HCMA. I can recall speaking to her years ago (maybe as many as 5+ yrs ago). She is one of the many who we work with at the HCMA who are not frequent posters to the site, but are frequent visitors.

              I was out of town when she posted, but Kelly called me to tell me about this "newbie" - which lead me to explain that Sheila is not a real 'newbie', just not a "message board " participant up until now.

              I called Sheila yesterday and was thrilled to hear that Dr. Bill Williams will be performing the myectomy. He is a wonderful surgeon and a sweet heart of a man. Brian is in wonderful hands and our thoughts and prayers are with them all during this stressful time.

              Sheila and Paul - we are here for you anytime!

              Best wishes,
              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


              • #8
                Best of wishes with your son's myectomy and welcome to out little community, and know we are here 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
                  Sheila and Paul,

                  I'm sorry your family is going through this, especially your wonderful son.

                  I wish him a speedy recovery and you are all in my thoughts and prayers.


                  (((((((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


                  • #10
                    Sheila and Paul,

                    My thoughts and prayers are with your family and your son through these trying times. I will keep a positive thought for a very speedy recovery for him.

                    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


                    • #11
                      Thanks everyone for the support and caring. My son Brian was diagnosed at 2 years of age - I thought my world was over and my son was the only "one" who had this diagnosis - that is when I first found Lisa and she has been my inspiration ever since. Through much hard work and determination I have seen this website evolve into a top notch site of expertise, current information and a wonderful "family" of support. You cannot get better than that.

                      I visit this sit often, and read every line, but don't post, as I am a computer klutz.

                      Just to know other kids have gone through this is a source of comfort.

                      Again, thanks everyone and I will keep everyone posted on Brian's progress.

                      Love to all - Sheila and Paul
                      Sheila

                      Comment


                      • #12
                        Brian will continue to be in my prayers through this surgery and the recovery period. Also, you and Paul will be too. It's as much a trial for you as for Brian, maybe more. Do you have other children?

                        Reenie
                        Reenie

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

                        Comment


                        • #13
                          Yes, Brian has a younger sister - Ellen who is four years old. She gets checked yearly and so far so good!

                          Sheila
                          Sheila

                          Comment


                          • #14
                            Hi everyone:

                            I'll be brief, since my computer keeps crashing, but Sheila asked me to let you know that Brian has had is surgery, and is currently in the CCU at Sick Kids in Toronto. Olivia and I were there for her ICD interrogation and we met briefly with Sheila. His surgery was yesterday and took about 7 hours. Shortly before we saw Sheila, Brian had his breathing tube removed. She said that he's awake for short periods of time, but is doing as well as can be expected. He'll be in CCU for a couple more days, then will move to the ICU, then finally to a ward. I'll keep you posted as I hear from Sheila.

                            Abby

                            Comment


                            • #15
                              Abby,
                              Thank you for updating us. I am so glad to hear the surgery went well, and I pray his recovery is quick and with no complications.
                              Dolly~
                              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)

                              Comment

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