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Newbie - my circumstances and ICD questions

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PeteFrench78 Find out more about PeteFrench78
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  • Newbie - my circumstances and ICD questions

    Hello, I’m new to the forum and wasn’t sure whether to post here in the devices forum or in the general newbies forum – but here goes...

    A bit of background; I’m 36 and was diagnosed with HCM around 4 years ago, when an uncle of mine suffered SCD – prompting a process of genetic testing through my family (his siblings - including my Mum – followed by me and my siblings). All of us had HCM. My uncles sons (also diagnosed) subsequently both had ICDs fitted, although I understand that they were symptomatic, however I don’t know the specific details.

    For me personally I was originally being seen by a cardiologist at St Georges hospital in London where I underwent the normal cardiac investigations. My EKG and holters have always been pretty normal, as were my exercise tests. I’ve had a couple of Echo’s over the last few years which have measured my septum at ~1.8cms, the last one being around 2 years ago. However, I recently transferred to Cardiologist at hospital nearer to me (for convenience) and my new Cardiologist put me forward for a Cardiac MRI. I recently got the results for this back and the MRI showed my septum measured 2.6cm and there was also some evidence of fibrosis in the tissue.

    Now, my Cardiologist did reassure me that it is possible that my previous Echo’s were just not able to measure the septum accurately, so this sudden 2.6cm measurement was not necessarily an indication that my HCM was suddenly progressing, but he did say that in any case 2.6cm was cause for concern and that – even though I am not really experiencing any symptoms - that we may have to start thinking about treatments, potentially beta blockers, or an ICD.

    So to summarise: Uncle (in his mid 50’s) with SCD, 2 cousins with ICDs, 2.6cm septum with some fibrosis but no real symptoms.

    Has anyone else had an ICD fitted in this kind of situation? Is it really something I should think about having, if I don’t really experience any symptoms?

    Any thoughts or advice very welcome!! - thanks

  • #2
    Re: Newbie - my circumstances and ICD questions

    Being evaluated and treated for symptoms and being evaluated for an ICD are two entirely different processes.
    An ICD is used as an insurance policy for those with a high risk of SCD.....whether asymptomatic or not.
    If someone is symptomatic then interventions with medication and/ septal reduction are considered.
    You might want to read up on the section called "risk stratification" on this website. Also, a call to Lisa Salberg in the HCMA office might clear up any questions you have in understanding your position in the risk stratification.
    After years of symptoms:
    Officially Diagnosed HOCM 2006
    Myectomy 3/11/13 at non-COE
    Extended Myectomy 7/23/14
    At Mayo with Dr. Joseph Dearani

    Comment


    • #3
      Re: Newbie - my circumstances and ICD questions

      Hi Pete,
      Welcome to the board!

      Jill makes an important point: an ICD is there as protection, and they make sense if you have substantial enough risk. The risk part comes from the fact that an ICD has its own problems, and it creates certain new risks. In general, risk factors, not symptoms, are what guide the physicians in deciding whether to recommend ICDs.

      It is, of course, ultimately your call as to whether to get an ICD. I think Jill made some good suggestions about how to learn more about risk of SCD for HCM patients.

      Gordon
      Myectomy on Feb. 5, 2007.

      Comment


      • #4
        Re: Newbie - my circumstances and ICD questions

        Hi Pete - Things are a bit different on this side of the pond - Our insurance companies have a lot to say regarding these. The stratifications JillC mentions usually dictate who is likely to benefit from an ICD. Typically, If you've shown some VT activity, have a first-relative SCD history, fainting, any or all could swing the vote for implantation. Also - there are personal aspects to look at - Are you a parent, Chief breadwinner for the family, etc. The decision is a very personal one.
        Marc
        Diagnosed @ 48
        Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
        Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
        AICD - Valentines Day '08, Spark Plug replaced 11/14
        After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
        Quietly going insane . . .

        Comment


        • #5
          Re: Newbie - my circumstances and ICD questions

          Thanks all for the replies - some food for thought here, definitely.

          I did take a look at the risk stratification piece and some other stuff on the site before posting, but I think I needed some additional context from you folks to go with it JillC's comment about "symptoms" and ICD's being distinct topics actually helped quite a bit. Going back to the risk stratification again, I see that it is clear that symptoms don't necessarily factor in the ICD decision and that you can be asymptomatic but still be classified as high risk.

          I guess for me it's more the case that a) my uncle wouldn't be classed as a first-relative - and b) at 2.6cm it is not quite at the point where it is classified as severe hypertrophy. So being "borderline" (but "not quite") on a couple of the major risk factors is causing me to doubt in my mind as to whether or not I even need to consider an ICD, right now. My cardiologist also didn't really explain whether the fibrosis came in to this all that much but I guess I can clarify that when I see him again.

          For now he has suggested having another 48 hour holter monitor done (apparently the signal wasn't that clear on the last one and I was pretty sedate for the whole 48 hours I was wearing it) and then seeing him again and maybe going through the cardiac investigations in a few months time, to see if anything has changed.

          Anyway - thanks again for the advice and input. I'll continue doing some reading/research (and soul searching) on the matter!

          Comment


          • #6
            Re: Newbie - my circumstances and ICD questions

            My Drs at the Cambridge Heart Clinic, Peter Schofield and Andrew Grace, were top-notch. Grace is one of the top Electrophysiologists in England and has developed risk stratification protocols for SCD.


            Sent from my iPhone using Tapatalk
            Joel

            Born 1955 in USA, DX'd w/HCM 1996, in United Kingdom
            2011, 2013, 2014 ablations for Afib and flutter in UK, INOVA Fairfax, VA, and Johns Hopkins
            June 2014 DX HOCM at Johns Hopkins
            October 2014 Myectomy and Cryomaze at Mayo Clinic

            Comment


            • #7
              Re: Newbie - my circumstances and ICD questions

              Pete,
              When they do an MRI one of the things they are looking for is scarring.....Increased levels of scarring are disruptive to the electrical pathways of the heart and increase risk of SCD. So, that would be a good question for your cardiologist. I'm assuming he is using the term fibrosis as scarring....but maybe not.
              HCM experts are the best to be helping you sort this out. Not sure if your cardiologist is one or not.
              After years of symptoms:
              Officially Diagnosed HOCM 2006
              Myectomy 3/11/13 at non-COE
              Extended Myectomy 7/23/14
              At Mayo with Dr. Joseph Dearani

              Comment


              • #8
                Re: Newbie - my circumstances and ICD questions

                Originally posted by JillC View Post
                Pete,
                When they do an MRI one of the things they are looking for is scarring.....Increased levels of scarring are disruptive to the electrical pathways of the heart and increase risk of SCD. So, that would be a good question for your cardiologist. I'm assuming he is using the term fibrosis as scarring....but maybe not.
                HCM experts are the best to be helping you sort this out. Not sure if your cardiologist is one or not.
                Yes, scarring is how he described it (when I asked him what fibrosis actually was).

                I don't know too much about my Dr - but here is his bio;

                Dr Sean O'Nunain MD, MA, FRCP

                Qualified from Trinity College Dublin, 1979. General Cardiology training Papworth Hospital, Cambridge. Subspeciality training in management of cardiac arrhythmias including interventional electrophysiology, St George’s Hospital London.

                Fellowship in Interventional Electrophysiology Massachussetts General Hospital, Boston.

                Teaching faculty Harvard Medical School.

                Previously Head of Electrophysiology, Kings College Hospital.

                Consultant Cardiologist providing a regional service for Sussex based at RSCH since 1998, specialising in all aspects of diagnosis and treatment of cardiac arrhythmias.

                Special areas of interest,: radiofrequency ablation of supraventricular and ventricular arrhythmias, complex device therapy for cardiac arrhythmias including ICDs and biventricular pacing.

                Comment


                • #9
                  Re: Newbie - my circumstances and ICD questions

                  He is an Electrophysiologist. He knows the heart's wiring. You should also see someone who specializes in Hypertrophic Cardiomyopathy (HCM). In my case, my HCM caused my arrhythmia, so it's necessary to treat both.


                  Sent from my iPhone using Tapatalk
                  Joel

                  Born 1955 in USA, DX'd w/HCM 1996, in United Kingdom
                  2011, 2013, 2014 ablations for Afib and flutter in UK, INOVA Fairfax, VA, and Johns Hopkins
                  June 2014 DX HOCM at Johns Hopkins
                  October 2014 Myectomy and Cryomaze at Mayo Clinic

                  Comment


                  • #10
                    Re: Newbie - my circumstances and ICD questions

                    Originally posted by Redteamer View Post
                    He is an Electrophysiologist. He knows the heart's wiring. You should also see someone who specializes in Hypertrophic Cardiomyopathy (HCM). In my case, my HCM caused my arrhythmia, so it's necessary to treat both.


                    Sent from my iPhone using Tapatalk
                    Interesting. I was previously seeing Dr Elijah Behr at St George's Hospital in London, who does appear to be quite eminent in the field of inherited heart conditions (including HCM as a sub-specialism) and device therapies. Maybe I should ask to be referred back to him.

                    Thanks again!

                    Comment


                    • #11
                      Re: Newbie - my circumstances and ICD questions

                      FYI There is an association in England called the CMA,
                      Cardiomyopathy Association
                      www.cardiomyopathy.org. They work with all different types of cardiomyopathy not just HCM. They have nurse specialists that answer and give advice. So they may have a list of HCM specialists in your area...I'm not sure .
                      After years of symptoms:
                      Officially Diagnosed HOCM 2006
                      Myectomy 3/11/13 at non-COE
                      Extended Myectomy 7/23/14
                      At Mayo with Dr. Joseph Dearani

                      Comment


                      • #12
                        Re: Newbie - my circumstances and ICD questions

                        Peter: when I was being treated in England, I made I a point to ask my Drs to communicate with one another. I also think it's probably a good idea to check out the CMA and see what resources and advice they have.


                        Sent from my iPad using Tapatalk
                        Joel

                        Born 1955 in USA, DX'd w/HCM 1996, in United Kingdom
                        2011, 2013, 2014 ablations for Afib and flutter in UK, INOVA Fairfax, VA, and Johns Hopkins
                        June 2014 DX HOCM at Johns Hopkins
                        October 2014 Myectomy and Cryomaze at Mayo Clinic

                        Comment

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