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YOUR decision about having a myectomy

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  • YOUR decision about having a myectomy

    [YOUR decision about having a myectomy]

    Author: Pat (---.d00832.dlup.digitaldune.net)

    Date: 11-02-02 14:33

    For the last three months I’ve been involved in an evaluation by Pravin Shah, M.D., in Newport Beach, CA (the HCM/echocardiography specialist to whom I was referred by HCMA). On Thursday I received the final results of his assessment. I have what some of the medical experts call "atypical hypertrophic cardiomyopathy" and what others call "upper septal thickening." In other words, I have an exertional obstruction without having hypertrophy elsewhere in my left ventricle. (I never have been much of a joiner, so I guess even my heart didn’t want me to become a full-fledged member of this club none of us ever wanted to join! )

    So I’m back to beta-blockers, this time with much better parameters as to how to judge for myself whether the dosage is too high or too low, thanks to Dr. Shah’s acceptance of me as the lead person in my treatment. If I’m not satisfied with my symptom control with medication, I’ll be looking at myotomy/myectomy. This will be a difficult decision for me because—like many of you have said on this board time after time—I really dislike those symptoms which keep me from doing the things I want to do as fast as I want to do them, which impact my activities with other people, and which make me feel like a woman twenty or thirty years older than I am. On the other hand, I come from a long line of stoics and tend to believe I should endure whatever life hands my way without complaint. It’s been difficult for me even to tell the physicians how I feel.

    So I would like to know something from those of you who have had myectomies or who have decided not to have myectomies. How did you make the decision for or against surgery? What symptoms, signs, or information from a physician led you to the point at which you decided, "It is time" or "It isn’t time"?

    I’m sure glad you’re out there for me to ask—I feel a lot less alone than I would otherwise! And thanks a bunch,

    Pat

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: YOUR decision about having a myectomy]

    Author: Robbyn (---.sympatico.ca)

    Date: 11-02-02 17:00

    Hi Pat,

    I too am going through the difficult decision that you are. I have been very symptomatic with HOCM since last March. I have been given new medication that has made feel slightly better. I have been feeling bad for so long it feels normal to me now. I had a rare day yesterday where I felt really good. I put on one of favourite CD's and danced, to not one but three songs. Well, I can't tell you how good that made me feel (and SOB). But I think that has helped me make my decision to have a myectomy or alchohol ablation. That another decision I have to face, which procedure to have.

    My doctor summed it up when he said in regards to surgery, "It all depends on what quality of life you want".

    Take care,

    Robbyn

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: YOUR decision about having a myectomy]

    Author: Robert Hartwell (---.focal7.interaccess.com)

    Date: 11-02-02 17:54

    Pat,

    My myectomy is scheduled for this Monday. The decision has not been easy as you can imagine. My decision came down to the fact that I was young, and did not want to continue to put up with the symptoms any longer. The specialists at the Cleveland Clinic checked me out and agreed that myectomy was, in their view, the proper course of action with respect to other procedures. Also in my case, the obstruction and gradient would probably lead to future heart related problems in the future. I kinda look at this a preventative maintenance.

    Intellectually, this was an easy decision, emotionally, I am still on a roller coaster ride.

    Take care,

    Bob

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: YOUR decision about having a myectomy]

    Author: john jordan (---.public.lawson.webtv.net)

    Date: 11-02-02 21:04

    greetings, to all, i was diagnosed with hcm three years ago and was placed on medication and monitored every six months until last spring when i did poorly on my thallium stress test. it was time for a catherization and that showed obstruction had gotten worse, two blockages and two valves needing to be replaced. i went to CCF and dr. asher and dr. smedira took care of me. had two bypasses and myectomy and the valves did not need replacement as the docs in ccf told me just before surgery on july 15th. all seems to be going ok. i did not have any complications and im back to work over a month now. it did not seem to me to have any real choice about myectomy as all the doctors were in agreement. best of luck to all of you. john

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: YOUR decision about having a myectomy]

    Author: Janessa (---.dialsprint.net)

    Date: 11-03-02 00:47

    Though I've only been a visitor of this site for about 4 days I have been so amazed by the amount of people that have so much in common with me!! Where have you all been for the last 11 years of my life? I have read the entire message board, old and new and I feel so blessed to have been sent to this site. It seems like so many of the messages have something in common with me.

    Pat I don't have a clue because I am faced with the same choice. Like Robbyn, my doc started talking to me about "quality of life" and my response was "who cares about the quality, I just want to be alive" and that is truly what I meant. I have suffered so long that "quality" never even crossed my mind and how sad is that? Last year ,at age 30 , I was told I had three options to consider over the next year: alcohol ablation, myectomy or transplant. I had to get the pacemaker/defib combo immediately. My wall is 3.5 thick so I still have those same choices to make and I'm no closer to a decision. I did decide that I like being able to have input but making the choices is not easy for me.

    I just sent my info to join this group officially and I can't wait to read the book that I'll be sent. I figure that the more informed I am, the easier the decision making process will be.

    Dancing through 3 songs -- that's quality of life! I can't make it through 1/2 of a song yet I'm still glad to be around to keep trying.

    As I'm sure you will, let me know what you decide and more important how you arrive at a decision. Stay blessed.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: YOUR decision about having a myectomy]

    Author: Dolly W (---.proxy.aol.com)

    Date: 11-03-02 01:39

    Hi Pat,

    First of all were you offered a choice of ablation or myectomy? For some, there isn't a choice. I was offered ablation, but chose against it (1) because if septal thickness is less than 1.6cm ablation is not an option (this information was given to me by Lisa, NOT the doctor wanting to perform the ablation) thank goodness she warned me, my septum was 1.5, (2) after researching, I felt that too many people were having to have a second ablation and/or myectomy, (3) I wanted to skip all that and go with as close to a sure thing as I could get (myectomy). I was one of the lucky ones, I had a choice.

    I knew it was time, because my symptoms were so bad, and I was on mega doses of medication which were no longer controlling those symptoms. Walking to the bathroom from the bedroom put me out of breath. Standing for 8-10 hours at work wore me out completely (not to mention the size of my ankles) It was all I could do to fall in the bed when I got home. I could no longer do the things I enjoyed doing. Going camping was out of the question. Just being out in the summer heat made me sick. A physician asked me, "On a scale from 1 to 10, 10 being able to do anything you want and 1 being not able to do anything, where do you feel your activity level is right now?' I answered 3, which he felt was pretty restrictive. (As did I). That really stuck with me because I felt that it really put things in perspective in my mind. This was something that I needed to do NOW.

    I know I made the right choice because, once the surgery was complete, I was told that there was extra tissue that needed to be removed that wouldn't have been found had an ablation been done. The surgery went really well and I am recovering with no complications. It has been almost three weeks now and I am looking forward to getting back to work and driving soon. My only restrictions are no heavy lifting and no driving for one more week.

    I know that this is a difficult choice to make. But it's one that only you can make. You're doing the right thing by getting as much information as you can. You're at the right place, you will find help here. I wish you well, and will be glad to answer any questions about my experience if you're interested.

    Take care and God bless!

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: YOUR decision about having a myectomy]

    Author: Sarah B. -Board Moderator (---.client.attbi.com)

    Date: 11-03-02 02:16

    Dear Janessa,

    Please call the office for information for a specialist. Being told that your options are "ablation, myectomy or transplant" is not exactly helpful. If you need a transplant, you need a transplant and you don't get told to think about it. Ablation and myectomy decisions need to be based on a thourogh investigation of your heart and what it looks like in there to see which technique will serve you best. Also, you are very young, if I remember correctly, and the top ablation guys don't like to do them on anyone under 50 right now till they have more data.

    Glad we are here for you, please use every resource available to you,

    take care

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: YOUR decision about having a myectomy]

    Author: Pat (---.d00832.dlup.digitaldune.net)

    Date: 11-03-02 12:53

    You're all giving me the assistance I need to prompt my own thinking and I do appreciate it. Like you, Robbyn, I've been symptomatic for so long (over 20 years) that it has begun to feel normal. The reduction in things I can do has happened gradually & I've adapted to the changes. . . . Then something happens which reminds me of what I used to do--like getting across the street before the "walk" signal changes or climbing stairs or going up slight grades--and I'm confronted with "quality of life" issues. Like Janessa I would be thrilled to dance through just one song now. And I used to be an avid square-dancer.

    I'm 59, not young like you, Bob, but I do have difficulty keeping up when walking with people who are 25 years older than me! And I figure I have a future to look forward to; my mother's 92, so it could well be a long one & I'd like it to be as active as possible. My thoughts will be with you tomorrow during your surgery. Do keep us posted when you can about your recovery.

    Dolly, Dr. Shah did mention ablation but--like we hear here through Lisa & Sarah from the other medical experts--he was not enthusiastic in recommending it. And when I was still very young I decided I would not ever subject myself to a relatively new medical procedure unless it were the only alternative. In this case I believe myectomy is a very good alternative and it will be my choice if the meds don't do what I want. (Dr. Shah did say if I were to chose ablation to make certain I went to a medical center where they had done many of them--at least 100, I think he said.) My septal thickness is, like yours, relatively mild (1.6 to 1.8), but my heart is very hyperdynamic and with exertion the obstruction pops right up there. Going back & forth from bed to bathroom sometimes makes me so short of breath I have to sit up awhile. And our summer heat really knocks me for a loop. I'll really think about that scale of 1 to 10 to describe my activity level.

    I'm glad to hear that for you your recoveries have been pretty rapid. How many times have you been back for check ups since your surgery? My cardiologist is 400 miles round trip from my home & I'd probably have the surgery at Mayo in Rochester which would be about 1500 miles from home. I've been thinking that my husband and I would simply move to Rochester in our RV until I was completely through the recovery period. I'm wondering how long that might be.

    You're all SO special!

    Pat

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: YOUR decision about having a myectomy]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 11-03-02 15:28

    I know I was sound redundant but this is such an individual choice it is hard to compare one person's decision-making process with anothers.

    Pat - I am relieved in the sense that enter you are in good hands - intrigued by the manner in which your HCM has manifested itself - and happy to know that you have options open to you.

    Based upon the unique expression of HCM in your case I would suggest extreme caution before moving forward with either procedure. Your septal measurement must have a minimal measurement of 1.8 with good septal perforators to perform and ablation. Your mitral valve must be in good shape to ensure a proper outcome. You have an extremely competent physician in Dr. Shah take his lead I am sure he will do what is in your best interest.

    To all those who have provided Pat with such wonderful information and support thank you.

    Sincerely,

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: YOUR decision about having a myectomy]

    Author: Pat (---.d00832.dlup.digitaldune.net)

    Date: 11-03-02 17:59

    Don't worry, Lisa! I AM taking Dr. Shah's lead: He's the one who said that if the beta-blockers don't give me a satisfactory result, the option is myectomy. "We'll be guided by YOUR symptoms," he said. And since I've had a tough time actually honoring my symptoms over the years, I decided to ask those on the message board just how they made their own decisions, part of which involves getting themselves to honor their symptoms, I think. I agree that all of our symptoms and decisions are different--and I think I can learn from others' experiences with the process. Maybe others can, too. I hope so.

    By the way, Lisa, I didn't mention my mitral valve because Dr. Shah now (based on the exercise echo) thinks the anomalous chordal structure which I've had since birth is irrelevant to the development of the hypertrophy and its treatment. For the rest of you, he found that the anterior chord inserts on my lower septum (instead of the outer ventriclular wall) and causes a heart murmur I've had since birth. My mitral valve is fine as are my coronary arteries. In many ways I'm really lucky!

    Thanks again for your ideas,

    Pat

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: YOUR decision about having a myectomy]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 11-04-02 08:17

    Sure Pat... sometimes I make general comments as not everyone knows you and your situation (this is again a general statement) so I try to make sure anyones reading gets a clear picture. YOu have been a great advocate for yourself and I know you have done your homework!

    Best!

    Lisa
    NOTE: This is a post from the previous forum message board.

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