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mrd341 Find out more about mrd341
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  • 1st appointment in Cleveland

    I have just received my info packet from the cleveland clinic and am set for testing on Dec 2nd. What I don't understand is that they have scheduled almost identicle testing that I have completed as recently as 3 months ago, wouldn't they just use the results from the testing that I have had done recently? I am scheduled for an echo, ekg, stress/echo,chest xray,and holter, all of which I have had done in the past couple of months. seems kind of redundant unless i am missing something.
    den

  • #2
    Re: 1st appointment in Cleveland

    The only thing the HCM COE didn't duplicate was the cath lab (angiogram), because it's invasive. My local cardiologist didn't have an MRI available for me, but my HCM COE did. If your insurance covers it, I wouldn't complain about it. You wanted a second opinion, this is how they form the second opinion, you don't want your second opinion to be based on the tests that resulted in the first opinion would you.....

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    • #3
      Re: 1st appointment in Cleveland

      A COE will always repeat the studies previously done because they are not going to rely on the skill of the individual doing the test. The more experience an echocardiographer has with HCM based on volume will impact the quality of the exam. This is all standard provedure. Den, you are going for the best and you are going to receive it. Remember, this is why they are a COE.
      Linda
      Onward and Upward !

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

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      • #4
        Re: 1st appointment in Cleveland

        Also, the echo machines at the COE's are like Cadillacs compared to most machines, which are Chevrolets. The quality of the images they can produce are just different. It's not unusual for them to repeat tests with their machinery and technicians. And in our case, often times the specialist will come in and observe some of the echo him/herself.
        Reenie

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

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        • #5
          Re: 1st appointment in Cleveland

          And to add to others - A lot can change in 3 months (meds, weight etc.). The testing they do will be the new baseline for you. My local HCM doctor is Chief of Echo at a fairly well-known hospital in LA, My echo takes 15-20 minutes. My echo at Mayo took closer to an hour!
          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 . . .

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          • #6
            Re: 1st appointment in Cleveland

            Everyone has given you sound advice. All echo's are not the same. My obstruction should have been clearly seen on an echo, yet it wasn't. Dr. Maron's tech at Tuft's performed an echo that lasted much longer than any of the previous two I had. I never had to get on the treadmill because the obstruction was clearly visable without exercise. Techs and MD's at other institutions should have picked up my HCM. Happy to hear you are getting to a COE.
            Michael
            Dx with HCM November 2009
            Myectomy and Mitral Valve Repair @Tuft's March 2010

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            • #7
              Re: 1st appointment in Cleveland

              Thank you all for your input, I really appreciate it! It makes sense! What is a "Coe"?

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              • #8
                Re: 1st appointment in Cleveland

                CoE = Center of Excellence

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                • #9
                  Re: 1st appointment in Cleveland

                  I am going to be there on the 2nd for a ICD workup. They test for the same stuff because HOCM can change. Also, diffrerent hardware and for reliability purposes, Also bring whatever test results you have because you may not need to repeat it. Are you staying at the guest house?

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                  • #10
                    Re: 1st appointment in Cleveland

                    You'll be surprised at the difference in your tests. The first time I saw the echo results at CCF I was shocked at how clear the pictures were compared to my locally don e echos. They are simply perfectionists at the COE's. Also after one of those echos the doctor immediately wanted another one done because he saw something in the first that he wanted focused on and seen from many different angles. The locally done echo had not shown that issue at alll. Turned out to be very important in my treatment.

                    I'm not putting down local healthcare providers it is just that these COE echo technicians know exactly what to look for and where to look since that is what they do day in and day out and the doctors are extremely demanding in what they receive.

                    Hope all works out great for you.

                    Toodle pip... Moosedreams
                    Diagnosed HCM Nov 2009
                    100 mg Atenolol; Baby asprin
                    First Trip to CCF June 2010
                    HCM Specialist at CCF... Dr. Harry Lever
                    Septal Myectomy at CCF... August 9th 2010: Dr. Nicholas Smidera
                    AICD w/pacer at CCF... December 20th 2010

                    Once you choose hope, anything's possible. ~ Christopher Reeve

                    Since we can not run in the park, we can be the ones to take a stroll, look around and enjoy the simple things in life. ~ Rosemaire1125

                    www.TheRhubarbChronicles.com

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                    • #11
                      Re: 1st appointment in Cleveland

                      Yes Reenie, with my own eyes, I have seen Dr. Lever hangin' out in the ECHO lab!!!

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                      • #12
                        Re: 1st appointment in Cleveland

                        Originally posted by [email protected] View Post
                        Yes Reenie, with my own eyes, I have seen Dr. Lever hangin' out in the ECHO lab!!!
                        Exactly! I've seen Dr. Ommen and Dr. Abraham do the same thing.
                        Reenie

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

                        Comment


                        • #13
                          Re: 1st appointment in Cleveland

                          Thank's again! No not staying at the guest house, my wife made arrangements. About 3 miles away with some "free points" that we had accumulated on one of our cards!

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                          • #14
                            Re: 1st appointment in Cleveland

                            We are in buffalo, so it's only about a 4hr drive in!

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                            • #15
                              Re: 1st appointment in Cleveland

                              Safe travels and best of luck - Glad your able to enjoy T-day with family!
                              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

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