If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Recently diagnosed with HCM Apical Variant

Collapse

About the Author

Collapse

eenunez1 Find out more about eenunez1
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Recently diagnosed with HCM Apical Variant

    Hello,

    I have been recently diagnosed with HCM Apical variant, during the screening process I completed an EKG stress test, two Echos one of those with contrast to confirm the findings. I am 47 year old and an active cyclist and who normally ride up to 170 miles a week at a high tempo. I am on HBP meds Lisinopril 10mg and have been recently bumped up to 20mg. During the screening it was suggested that my kids undergo the screening which I will be scheduling.
    The cardioligist will monitor my heart activity for 30 days with an event tracker and I will follow up with him a couple of weeks after the data is submitted. I have no symptoms and during the EKG review it was noted that my heart recovers very well, but also because of the HBP my numbers were high, which led to the doctor suggesting that I continue riding but at a lower tempo to keep my heart rate down. Since some of the reading I've done suggests that Apical is benign, I am interested and are looking for a referral to a HCM specialist that can evaluate my condition. I live in the San Diego CA area and would certainly travel to see a specialist if needed. Thank you.

  • #2
    Re: Recently diagnosed with HCM Apical Variant

    Hi eenunuez1, and welcome to the board!

    Sorry to hear about your diagnosis - nobody wants to hear this - but I'm glad you're getting care.

    There is a list of HCM Centers of Excellence that you can reach from the HCMA home page. But the place with the most expertise about apical HCM is certainly Mayo Clinic.

    Not to alarm you, but I don't think "benign" is the right description. Some people with "ordinary" HCM, and some with apical HCM, have few problems, and some have a lot of problems. That's why it's worth seeing an expert.

    I should add that Lisinopril is a drug that's usually not used for HCM patients - it (and other drugs like it) can increase the pressure gradient and make things worse for your heart, even while reducing your blood pressure. You might talk with your doc about this at follow up.

    Gordon
    Myectomy on Feb. 5, 2007.

    Comment


    • #3
      Re: Recently diagnosed with HCM Apical Variant

      We always suggest a COE, we often use the closest. With Apical HCM, Mayo is the only center (that I know of) that has perfected the Apical Myectomy. While you may not even be a candidate for surgery, I suggest Mayo as they have obviously researched and perfected the surgery for your variant and therefore be the best choice for you. Your local doctor sounds very knowledgeable about HCM and many of us coordinate our care between a trusted local and a COE. I'd personally lay low on the Bike until I met with a COE, but we have many conditioned athletes here and with their doctor's guidance, still enjoy active lifestyle. Glad you found us.
      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


      • #4
        Re: Recently diagnosed with HCM Apical Variant

        UCLA is now a Center of Excellence.

        Comment


        • #5
          Re: Recently diagnosed with HCM Apical Variant

          Welcome to the forum eenunez1.

          Shutterbug, you are absolutely correct. UCLA IS a COE. I think what Gordon and Marc are saying is that the Mayo Clinic is the COE that performs myectomies on those with Apical HCM. Therefore they have the most experience with that form of HCM.
          Onward and Upward !

          Diagnosed 4/07 HCM with fixed & dynamic obstruction
          Myectomy with resected cordonae tendonae 4/08 CCF
          ICD 10/08

          Comment


          • #6
            Re: Recently diagnosed with HCM Apical Variant

            Yes. Of course you can go to UCLA. But since you already know you have apical HCM, it might be a good idea to go to Mayo, since they have the most experience with apical HCM.

            Gordon
            Myectomy on Feb. 5, 2007.

            Comment


            • #7
              Re: Recently diagnosed with HCM Apical Variant

              All, thanks for your feedback! I was diagnosed by the Director of Cardiology at UCSD and I am in great hands but being seen by a COE is something that I will look into, especially since there's a Mayo clinic in Phoenix. As far as the Lisinopril comment that was for my HBP and I've been on it since 2010; which medicine to replace Lisinopril is normally prescribed to HCM patients?

              Thanks

              Eddie

              Comment


              • #8
                Re: Recently diagnosed with HCM Apical Variant

                I'm not sure, but I believe the expertise in Apical HCM at Mayo is at their " Mother Ship" location in Rochester MN. I don't know if going to Phoenix's would give you the special expertise you are looking for.
                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


                • #9
                  Re: Recently diagnosed with HCM Apical Variant

                  I was on Lisinopril for hbp for 3 or so years. I was diagnosed with HOCM @ Mayo in February and the first thing they did was to have me stop taking Lisinopril. And my local cardiologist put me on Coreg instead

                  Denny


                  Sent from my iPhone using Tapatalk

                  Comment


                  • #10
                    Re: Recently diagnosed with HCM Apical Variant

                    Yes, the place to go would be Mayo in Minnesota. Of course that's a long way to travel, but many of us do - I go to Cleveland (from Florida) for my specialist, and I know a number of people who travel from southern California to Mayo. If it helps, (a) the travel is tax-deductible, (b) I'm sure it costs more to fly to MN than to Phoenix, but otherwise its just about the same inconvenience, and (c) you'd be seeing the people who really know apical HCM.

                    That said, it should be possible to send them some records (typically, an echo recording) and have them look at it before telling you whether they think you should come there. I know they do that at Cleveland Clinic, and I'll bet they do at Mayo as well.

                    Gordon
                    Myectomy on Feb. 5, 2007.

                    Comment


                    • #11
                      Re: Recently diagnosed with HCM Apical Variant

                      Also - for what its worth, I have found that my 2-day visit to Mayo, airfare, hotel etc., is cheaper than one echo and Dr. visit at Cedars Sinai!
                      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


                      • #12
                        Re: Recently diagnosed with HCM Apical Variant

                        Does anyone know what the difference between Apical HCM and having and apical aneurysm is? I think it comes down to the thickening of the septum and where it's located? I have mid-septal thickening (2.6cm) with an small apical aneurysm which I think is different but I thought I'd ask.

                        Comment


                        • #13
                          Re: Recently diagnosed with HCM Apical Variant

                          An aneurysm is a bulge in the wall of a blood vessel because there's a weak spot there - think of a balloon that has a weak spot. In other words, you can have thickening in some places, and thinning of the wall in others.

                          Here's a paper on aneurysms with apical HCM: http://circ.ahajournals.org/content/118/15/1541.full

                          Gordon
                          Myectomy on Feb. 5, 2007.

                          Comment


                          • #14
                            Re: Recently diagnosed with HCM Apical Variant

                            One more from the peanut gallery...I have apical hocm and I had a myectomy and mitral valve repair at UCLA exactly 2 years ago. My surgeon was Dr. Ardehali. I felt great for about 2 months after my surgery, then POW - all my symptoms returned. Obstruction is now around >190 and severe regurgitation jets hitting my mitral valve annulus (part of the 'repair' of the mitral valve) have caused a condition called 'hemolytic anemia'. I am back to taking disopyramide, ranexa, and toprol - even more meds than before my operation.

                            I am leaving for the Mayo clinic next Saturday, July 24 to see Dr. Ommen. I should have gone there in the first place, but my HMO wouldn't allow it. They would only let me go to a clinic in southern California.

                            Side note: I went back to see the UCLA surgeon last October because one of my chest wires pokes out and my insurance told me to go to him to fix it (I have since changed to my husband's PPO insurnace). I knew I wouldn't have him do it but I wanted to give him a 'piece of my mind' about my symptoms returning. I told him that I felt I should have gone to the Mayo or Cleveland clinic in the first place. He said that that they would not have had any better results than he had. I guess it's true - heart surgeons sometimes develop a god complex.
                            After years of being told I was anxious and depressed, finally diagnosed in 2012
                            Myectomy and Mitral Valve repair, UCLA, July 2013

                            Comment


                            • #15
                              Re: Recently diagnosed with HCM Apical Variant

                              Liz,
                              I am so sorry for your experience.....It is very difficult to separate out the results of the surgery and the disease itself. However, apical HCM is EXTREMELY specialized in the way it needs to be treated surgically and Mayo pioneered the surgery, so I' m glad you are headed there. If there is anything surgically to be done they will know. As you know, I had to have my myectomy redone. But I am finding out that HCM can give significant symptoms....in my case fatigue....even though my outflow tract gradients are now near zero. But at least I know I had the best of the best surgically....and will work now with medicine etc. to try to maximize my energy levels. I'm going to Mayo 7/21 for testing with Steve Ommen and leave on 7/25..... Sorry I'll miss you....Let us know how your consult goes.
                              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

                              Today's Birthdays

                              Collapse

                              Working...
                              X