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Clarity of septal measurement impeding planned myectomy

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Pam Alexson single mother of 3 wonderful young adults;a special ed teacher, an RN and a senior accountant. Find out more about Pam Alexson
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  • Clarity of septal measurement impeding planned myectomy

    Hi everyone, A new concern has emerged. The surgery is scheduled for Oct. 15 at NEMC. I recieved a phone call yesterday that the measurement of my entire septum is not clear on the two echoes with contrast that I have had. It has been said from the start that my windows are small and inhibit an accurate view. Just a very tight and close together rib cage. On Monday I have to go back into NEMC for a transesophageal echo cardiogram. This will show clearly what the whole septum measurements are. I was told in the beginning that norm was 10-12 ,mine is an 18 with severe symtoms and severe gradient (100-200+).Even with that 18 ,after review,I was told that I was a candidate for myectomy or ablation, my choice. Well now if the the measurements aren't concentric at 18, then they will only be able to do a valve replacement. I'm a little bit tipped over right now and I am slightly suspicious that there is more to it. My mother has not been in full agreement with the surgery , she was with me at my pre-op visit ,she was asked to verbalize why, it all referred back to my former cardiologist relating to her why I should not and could not have a myectomy;the risks for me, my particular heart configuration,and her feelings that in spite of me having to do something to live a better life she was afraid she could lose me ,etc. etc.. I saw the surgeons head pop up and at the time I didn't want to believe it ,but felt a red flag went up from him . Later my mom and I discussed it but I denied it . I questioned my doc yesterday , he said no they just need to be sure and I agree I do not want anyone taking a part of my heart out if the numbers don't ensure full confidence in the surgeon. ....But and this is a big BUT I feel in my gut that the decision may already have been put to me as in the valve replacement statement. If that's how it pans out it certainly is less than I had hoped for to help me but it will have to be and will be OK. It certainly has already been a more than valient attempt and efforts to help me so far, and I am thankfull. What does anyone think? And does anyone know if they are putting replacement valves in without open heart at NEMC these days. If you don't know I can wait as I am sure I will learn soon. Thanks for any comments, replys. 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

  • #2
    Re: Clarity of septal measurement impeding planned myectomy

    Dear Pam,

    I hope that you get some clear answers soon and are able to do whatever it takes to get yourself feeling better. I have to share a personal story with you about my parents' ideas on a surgery I had in April. I had some severe tachycardia issues and had been on medicine most of my life. I had decided to have a consultation with an electrophysiologist to see if I was a candidate for a catheter operation to "cure" my particular problem. (Disclaimer, I don't have HCM, my husband does. That's why I'm here.) My mom went with me to the consultation. The operation essentially is where they map the electrical pathways in the heart and burn the pesky one that causes the tachycardia. My mom and dad didn't want me to have the operation because they might lose me, even though the doctor had been doing these operations for 13 years and had lost no patients and had only put 1 pacemaker in because of the operation. I decided to go on and have the operation anyway and I'm very glad. I no longer have tachycardia issues and I'm no longer medicated. My operation was a complete success. My point is, you do what YOU have to do. Mom will be all right.

    Reenie
    Reenie

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

    Comment


    • #3
      Re: Clarity of septal measurement impeding planned myectomy

      Dear Pam,

      http://www.indianexpress.com/ie/dail.../iin21016.html is the first thing I found about non-invasive valve replacement.

      It is a pretty new thing. The bottom line is that you have to trust yourself and trust your doctors. If you have misgivings, then you need to work them out before you make any decisions.

      Personally, I don't think your first doctor really counts as a first opinion b/c he was so clearly unprofessional and not an HCM expert. If you really don't know what to do, go see another HCM specialist for another opinion.

      I wish you all the best.

      s

      Comment


      • #4
        Re: Clarity of septal measurement impeding planned myectomy

        Hi Sarah, Hi Reenie , Thankyou for your info and shared insights ; I guess that non surgical valve replacement is something for the future for us in the states here; but as we know technology moves a little a lot so who knows. Reenie your story re: you parents feelings is so true. I'm glad you went ahead with it from what you felt was best for you. I actually know 3 individuals who had the opportunity to have the same or similar procedure as you . Would you believe we have all known each other for years and all worked at the same time at a very small visiting nurse agency . That building scares me ; many pollutants ,mold etc. a very sick building .Still recieving "allowable" amounts of pollutants from surrounding factories. 2of the 3 went on to your procedure very successfully and the other opted to wait for a while , she's very scared and seeing 2 older nurses go through it didn't inspire her. At that time I was also very sick but with what turned out to be severe Hcm. I could go on & on; 3 with Fibromyalgia, one severe ,two heart attacks ,a pregnant woman delivering a baby boy with kidneys not properly developed. We were all majorily confined to the building and not on the road. Definitely our share of breast cancers also existed. The biggest thing was this great nurse a good friend who'd worked in the building for +18 years had pulmonary hypertension died from heart failure as a result of gallbladder problems. Sorry I got off on a tangent but I just started remembering all that as I wait to see if I am about to take a step backwards as I wait to hear from NEMC. My mom is a little frustrated and hopes I don't blame her. I don't and as I said, it is better to be safe and have all the facts. I had the TEE yesterday at NEMC awaiting the results . Something interesting was occuring as it was going on; one of the docs kept stating numbers and asking the other doc how they compared to the numbers from BRIGHAM and WOMENS. First time I've heard that done while I was going through testing there! Well I'll just have to wait as certainly I was not privy to the context they were taking this from and having the garden hose down my throat I couldn't speak to ask any questions. I'm glad these tests are over, ENOUGH. Thanks for listening . I'll let you know what I hear. What do you think? 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


        • #5
          Re: Clarity of septal measurement impeding planned myectomy

          Pam, all I can do right now is offer support. We don't have anything else to go on until you get those reports. I hope you get them soon. In the meantime, hang in there. We're here for you while you wait and always.

          Reenie
          Reenie

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

          Comment


          • #6
            Re: Clarity of septal measurement impeding planned myectomy

            HI Reenie , I'll hold onto that support you're sending me while I wait and it helps , Big Thankyou. Just to tell you what happened last night, I think it will touch your heart as it did mine. Remember in my post as to why I re researched my problem , called Lisa and ended up with the second opinion at NEMC? (My son ,he was having so much trouble dealing with thoughts of what might happen to me and the why's this happening to my mom questions . That spured me on to seek help. ) I was thinking how dissappointed he will be if they can't help me surgically. Then there he was standing before me saying , mom I've had some time to think about this and I feel it will be Ok if Dr. Maron calls you and says there is no intervention surgically that can help you. I know it will be tough to go back to when we had to think that way in the past and I am sorry you are sick and that's a bad thing but, " I would rather have Dr. Maron call you and tell you they can't safely do any surgery on you and have you the way you are now then to have him come into a waiting room and have him say , something went terribly wrong and I am sorry. I'm still with my mouth open . At 17 he puts together what everyone is trying to find a way to say . Boy I love my children for all their unique and special qualities but 17 years ago I was told I could not have any more children and I needed to have a hysterectomy .....,well I know now even more that god knew I would need this special young man in my life and he was right ,he sent him to me . Take care, 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


            • #7
              Re: Clarity of septal measurement impeding planned myectomy

              Well today is a busy day and very productive. Dr. Maron just called , my septum ended up as 15mm not 18 . The myectomy is a no go. So since the provocable gradient is quite appreciable and causes me to experience severe symptoms a valve replacement is the next step . I feel much better and confident and am assured it will relieve my symptoms and gradient which are easily provoked with any activity,causing me to feel so lousey. So thank you all for being there. The 15th will probably be the same date and Dr. Rastigar will do the surgery. Bye for now. 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


              • #8
                Re: Clarity of septal measurement impeding planned myectomy

                Sounds like you've gotten a lot of answers. Best wishes, please keep us posted. Linda

                Comment


                • #9
                  Re: Clarity of septal measurement impeding planned myectomy

                  Thank you Linda, I will. Take Care 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


                  • #10
                    Re: Clarity of septal measurement impeding planned myectomy

                    I'm glad you have some solid numbers to work with now. I'm still thinking about you and saying a prayer.

                    Reenie
                    Reenie

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

                    Comment


                    • #11
                      Re: Clarity of septal measurement impeding planned myectomy

                      Thank you Reenie. Now the countdown to the 15th begins. I am now going to try to relax and spend time with family and friends especially my son and daughters. My son just recieved some terrible news that his former supervisor at his ice cream shop job this past summer was murdered last night in her own home while her two young children slept nearby .This was only about 4 miles from us. He used to stay late to help her close because the other kids wouldn't .He liked her very much. What a horrible tragedy! She was killed by a friends x- boyfriend because she tried to help her friend be safe. This guy got out of a facility and hunted her down stabbing her 20 times . We just never know do we? Take Care and be safe . 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


                      • #12
                        Re: Clarity of septal measurement impeding planned myectomy

                        Oh, Pam! I'm sooo sorry! You take care of yourself and your son. We'll be here whenever you need us.

                        Reenie
                        Reenie

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

                        Comment


                        • #13
                          Re: Clarity of septal measurement impeding planned myectomy

                          Pam,
                          Wow... a few thoughts... YOU MUST BE A GREAT MOM...only good parenting could lead a young man to such a well thought out conclusion of such a complex issue!

                          RE what is best for you... AA/Myectomy?MV repair/replacement... THIS is why a skilled center is so important. You have had all your options laid out for you... and the one that is best is the least common...MV repair/replacement..but you know that your moving forward with the BEST option for YOU!

                          I will be keeping my ears open for news that all is well and that you are recovering! (give your family our # or show them the board..PLEASE)

                          We are all thinking of you and I hope you remember that as you move forward!

                          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


                          • #14
                            Re: Clarity of septal measurement impeding planned myectomy

                            Thank you Lisa, I am blessed ,Tim and the girls have more together than I ever did at their age. I think we have been all growing up together. Thanks for all your support also. Now are you ready for this addendum? Well here goes . I won't know if I have had the valve replacement or the myectomy until I wake up after it's over. I got a call tonight . Dr. M . says they are going to do a TEE when my chest is open . I know it sounds scarry so I'm not wrapping my mind around it ,the gorrey details that is. This will allow a very accurate look at my septal measurements. As Dr . M has explained they have studied it and it still may be possible to do the myectomy versus the valve replacement. This would also avoid life long coumadin therapy. So we will see. Dr. M has certainly been a thorough tester . Tim knows how to contact you and how to post he will post as soon as he knows . All three kids ;Laura, Sarah and Tim will be at the Tremont Boston on the 15th for that night. Tim will have a lap top with him and will be able to get on line at the hotel . I don't think they can at the hospital but maybe. Right now I am hoping the Redsox will win , sorry any Yankee fans out there but I gotta root for the Bean Town Boys. Take Care and thanks to you Lisa and all . 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

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