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Concentric HCM?????

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  • Concentric HCM?????

    [Concentric HCM?????]

    Author: karla (---.proxy.aol.com)

    Date: 06-04-02 23:57

    Hi, All - keeping you posted....

    Went with hubby today for heart halter - take two! (The doctor's office called us the day we were to go in for the results from last week and told us the halter didn't work...but, I won't GO THERE on THAT subject for now....) We had this one fitted at the hospital....feeling a little more confident on how it was handled there.

    I asked and received copies of my husband's records from the doctor's office. I don't understand most of it, 'cuz it's written in "doctor-ese", however, I did read the words, "severe concentric left ventricular hypertrophy" in the report of the heart cath. It also mentions there is a mild obstruction (which we don't remember the doctor telling us when we received the initial diagnosis)

    In my personal research of HCM, I only found one article that cited concentric hypertrohy and it stated that it is found in only about 20-25% of patients. I was assuming from my previous findings that HCM usually affected the septum. Guess in the 'rare' world of HCM, hubby is even MORE rare! Is this a GOOD rare thing, or a BAD rare thing? I checked out the boards here to try and find some info, but not a whole lot was mentioned on the subject.

    As always, appreciate your input.....

    Lisa, I will call your office on Weds. at 6:30 as scheduled - thank you for your support!

    Karla

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    [Re: Concentric HCM?????]

    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 06-05-02 01:39

    Dear Karla

    As you have discovered, everyone's experience of HCM is different. I don't recall seeing any posts on concentric here, but that doesn't mean we don't have member with this pattern. I didn't find much about it on-line, mostly just a description of the pattern.

    It basically means that your husband's heart thickened all around the ventricle instead of one big lump in the middle (septum) or bottom (apex/apical). From my personal, non-doctor understanding of the heart, I believe that how bad it is really depends on how thick it is and if the heart is contracting properly. Sometimes a myectomy will take care of an obstruction. But I'm not a doctor and this is something that you need to talk to Lisa about as well as the cardiologists.

    Hang in there,

    Sarah

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    [Re: Concentric HCM?????]

    Author: karla (---.proxy.aol.com)

    Date: 06-05-02 07:17

    Sarah,

    Thanks once again for your quick response.

    I found the same information as you did 'surfing' the net.....just a description.

    I was surprised at learning that his 'thickness' was concentric rather than surrounding the septum, which seems to be the 'norm'.

    When we received the diagnosis of HCM at our initial visit to the cardiologist,

    he gave us a very sketchy explanation of a diagnosis at best. He did mention a "thickness number", and I want to say that it was 2-2.5?...but not sure. To be quite honest, the particulars of what he DID say went right out of my head, because he kept saying phrases like "sudden death" and "your heart will just blow out". As I wrote in my previous post, I don't even recall him mentioning there was any obstruction.

    I know now from educating myself from reading these boards, that sudden death from HCM is rare.

    It is frustrating to go through what seems like forever to get a complete diagnosis and wait to hear if further treatment will be considered for him. (He's just on a bet blocker at present)

    Thanks again...will be talking to Lisa this evening.

    Karla

    ps. If any of you know of a web site that explains more about concentric HCM or have been diagnosed as such, please email me!

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    [Re: Concentric HCM?????]

    Author: lisa (208.47.172.---)

    Date: 06-05-02 10:52

    Karla,

    When I have a few minutes I will do a full write up for the site on Concentric VS non Concentric, for now just know it is not the focus of concern. We will speak tonight.

    Lisa

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    [Re: Concentric HCM?????]

    Author: karla (---.proxy.aol.com)

    Date: 06-05-02 15:59

    Lisa,

    Thanks for your response...I'm sure that information will be an interesting read. Looking forward to speaking with you this evening. .

    Karla

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    [Re: Concentric HCM?????]

    Author: elizabeth (---.fuse.net)

    Date: 06-06-02 08:57

    Dear Karla.

    I too have a diagnosis from the Cleveland Clinic of severe, concentric left ventricular hypertrophy. I also had systolic anterior motion (SAM) of the anterior and postereior leaflets of the mitral valve. My septal wall is 2.5 and the posterior wall thickness is 2.0. I had a myectomy and a mitral valve repair last July at the Cleveland Clinic. With concentric hypertrophy they can't remove all the extra muscle, so my echo post surgery is very strange looking. But, since the surgery, I have had a great reduction in systems and quality of life has greatly improved. Keep educating yourself--knowledge is power!

    Many prayers for you and your family.

    Feel free to e-mail me if you want to talk.

    Elizabeth

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

    [Re: Concentric HCM?????]

    Author: Mary (208.132.95.---)

    Date: 06-06-02 09:27

    My son who is 15 has severe concentric hypertrophy. I read in Dr. Maron's book that is only occurs in 2% of the population.

    Tommorow is the anniversary date (one year) of when we found out about my son's diagnosis. It was the worse day of my life. I guess I need to look at it as a miracle that we found out, as he was a great athlete.

    Looking back over the year, we have grown a great deal with knowledge. When we first found out , the cardiologist (not a specialist in hcm) scared us to death with the risk of sudden death. He put our son on almost no activity...no bike, skateboard or pick-up basketball games. Did not want him outside on hot, humid days. He led us to believe that once on atenolol the thickness may improve. So we returned in one month with absolute no change in thickness, were we disappointed. At that visit my husband asked the md how many patients he managed with hcm. His response was three kids. THat was our ticket out of there. The physician was very kind and responsive, but we felt with little "expertise". We began our search and went to the Mayo Clinic where we received alot of good knowledge, an appointment for return for an ICD. That whole summer until he recieved the ICD was very scary. Every day I worried about sudden death. During the school year it was difficult to watch my son sit on the sidelines of the basketball team (he had played with these kids since fourth grade) as the manager instead of being on the starting lineup. I cried through some of the games. One time, my son got on his knees and begged the coach to" just play a few minutes". Time has healed, although it can be tough. My attitude now is to live each day to its fullest.

    God Bless all with hcm. THanks for listening. Mary
    NOTE: This is a post from the previous forum message board.
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