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  • disappointed at Cleveland Clinic

    A heads up, I did not come away from the Cleveland clinic with a any sense of confidence. After sending them concise and complete medical records, CDs with my ECHOs etc. I found that none of that had been reviewed by the physician or nurse practitioner. In fact, I'm not sure they ever arrived in my chart. The physical exam by the nurse practitioner was less than 5 minutes, superficial, unfriendly and incomplete. and the doctor, although spending some time to answer my questions limited his exam to listening to my heart through my shirt. Medical Students would flunk if they did this, much less a specialist in HCM. All of the tests they ordered were duplicates of what I just had at my own cardiologist. Disappointing and not the thorough, personalized exam I had hoped for. I will not go back. The only positive was the concierge service; they were efficient, friendly and attentive. It was nice to have them organize all of the appointments with minimal hassle. I would try Mayo if I were you.
    David in Indianapolis

  • #2
    Re: disappointed at Cleveland Clinic

    That's not encouraging to hear about your poor visit. I had hoped to be heading to the Cleveland Clinic soon.
    "Some days you're the dog... some days you're the hydrant."

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    • #3
      Re: disappointed at Cleveland Clinic

      A quick couple of comments.
      Just possibly the doctors wanted to run the tests themselves because some tests done by others could have been less then perfectly performed – as I’m sure you are aware, having read some of the other posts in this site.

      Just possibly their not using the data you supplied upset you to the point where you were ready to be unhappy with their treatment.

      Just possibly they only did a very cursory examination because until the new test results were available, they didn’t have a whole lot to tell you.

      Just possibly the initial contact could have been handled better. But we are none of us one hundred percent, every day of our lives.

      In a race between a turtle and a hare the hare does not always win - - but that’s the way to bet.
      Burt

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      • #4
        Re: disappointed at Cleveland Clinic

        Personally I don't blame the doctors for doing their own tests.
        If I were a doctor and someones life is in my hands and I had to diagnose and come up with a treatment plan for meds or surgery I would not want to base those decisions on someone elses tests.
        They may very well show the same results, but then that's a good thing to because you now have a second opion to agree with the first.
        Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
        So if you are capable of thought then you are capable of great things
        Good luck and stay well.
        Glen

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        • #5
          Re: disappointed at Cleveland Clinic

          Wasn't the whole point of a second opinion a second look? I think it is . As Glen states that's how it needs to be and it is very difficult or next to impossible if one is getting a second opinion for a proffessional to say too much if anything on someone elses findings and tests. As I went through this process 3 times I can tell you that is what is done . The pertinent tests were done 3 times. The 3rd time was the charm! I am sorry that this was not communicated to you in a more open tone or that your visit was disappointing . I can tell you that my elderly mom and I made the trek into a big city hospital a big jump from here in the boonies, 2 days in a row so we could see the specialist to hear the specialist say , " I am sorry you made the trip in, I have not had time to review your records and I will be ordering my own tests. The reason I had to see him so fast was that the previous day I was told that they were sorry to tell me that I may die, it possibly was immenent and I needed help asap. They even gave me #'s and a things to do list if I had certain symptoms. Funny I did not get in there for another 2 weeks and I did not have a confirmation of the 1st day dx., HCM for 3 months and did not get my AICD for 4 months. I guess I survived ! As I am a nurse, learning to be patient , overlook what I would view as inadequate handling at times and absolute 3 ring circus acts at times was a big lesson in patience , tolerance and attemtps to understand all this was necessary to get on the right path. Hang in their and try to give it another shot. Best Wishes . Pam
          Dx @ 47 with HOCM & HF:11/00
          Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
          Lead failure,replaced 12/06.
          SF lead recall:07,extracted leads and new device 2012
          [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
          Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
          Genetic mutation 4/09, mother(d), brother, son, gene+
          Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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          • #6
            Re: disappointed at Cleveland Clinic

            I would not be so fast to rule out a center based on one visit. A few thoughts... did you go to CC with an appointment at the HCM center - or with a general cardiologist? When did your records arrive?
            I am not saying you may not have had a not so great experience, but I would take a step back and look at all angles before declaring it "bad".

            Just some thoughts...
            Lisa
            Knowledge is power ... Stay informed!
            YOU can make a difference - all you have to do is try!

            Dx age 12 current age 46 and counting!
            lost: 5 family members to HCM (SCD, Stroke, CHF)
            Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
            Therapy - ICD (implanted 97, 01, 04 and 11, medication
            Currently not obstructed
            Complications - unnecessary pacemaker and stroke (unrelated to each other)

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            • #7
              Re: disappointed at Cleveland Clinic

              When I first went to the CC, they looked at my results but also did their own tests. In fact, there tests found an issue with my mitral valve that had not been diagnosed earlier. In addition, when they wanted more tests they were done immediately. No having to wait for a schedule. Also, I have pre-filled out alot of doctor forms in the past, and never has any of them been read until I arrived.

              Jerry

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