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Dr Lever


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  • #16

    Since you are already located in Ohio, I'd guess there are insurance issues that may come into play here as well. They might prefer to work with an in-state hospital rather than an out-of-state one. There are also more financial assistance programs (for what the insurance doesn't cover) for residents. If this is in fact the case, I'd probably have to say (and you just knew this was coming):

    Hold the Mayo... go to Cleveland.

    All else being equal though, it's just a matter of geography and how much hassle with transportation you're willing to put up with on your way home after the myectomy.

    "Some days you're the dog... some days you're the hydrant."


    • #17
      There are many factors people must look at prior to having any major medical procedure. In this case we are looking at myectomy. One of which is finding a doctor who has the experience in doing what ever the procedure is other reasons are more personal in nature they include - travel, family support, insurance coverage and personal preference.

      I have said many times that I fully support the programs at Mayo, Cleveland and TUFTS. One program not mentioned often is the program at St. Lukes in NYC, it is smaller, but good as well.

      I have no personal favorite program, I would myself or for a family member concider any of the programs I have named. I would not concider having an experimental or new procedure when known and proven therapies are available.

      good luck to all and you will each follow the path that is best for YOU.

      Best wishes,
      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)


      • #18
        So true what Lisa says. I think all the centers , from what I have read and from my experience at TUFTS as well, are the best of the best. When Leon was describing the reasons he felt Dr lever was great , I found if I inserted Dr Marty Maron or Dr Jim Udelson ( HCM specialists ) in his statement that these attributes were equally what make them special to HCM patients. Dr Link also . I have less history with him but have also found the same is true . Dr Rastigar the top notch myectomy surgeon at Tufts did my myectomy , I was the third official myectomy for the program, but it could have been his 1000th performed. He did a great job and is listed as one of the top 10 cardiothoracic surgeons in the country. I think we are all very lucky to have the choices we have and that the geography factor maybe one of our biggest obstacles in choosing a center. I think as HCM patients we have a responsibility to support in a positive manner all our specialty centers and welcome and support others that may come in time. A great HCM Center is only as good as the fine people/ professionals/specialists who are dedicated and passionate about the people they have chosen to help. All these doctors meet thatat criterior above and beyond. We need to ensure that these centers, all of them, thrive and remain in existance to help new HCM patients and all of us who will be connected for the rest of our lives.

        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


        • #19
          WELL SAID. You hit the nail right on the head...Thanks Pam...

          " Real Courage Is Being Scared To Death But Saddling-Up Anyway "


          • #20
            well, stuart I was thinking the very same thing. I started the thread about Dr Lever, but I too was thinking that conversations on this website are heavy on the cleveland side and although positively and I'm sure rightfully so, there might be some need for balance, esp those in the west that may better be served by Mayo.

            Since, I'm in Ohio, Cleveland will probably be the place for me. I started the thread wondering if Dr Lever is 'the man' or a great amoung a few greats. The summary would suggest he is right up there with Barry Maron and they are probably the tops. But, most of this is coming from all of you, obviously there aren't Maron/Lever colleagues piping in here, which would add a nice balance. But, no doc is going to speak about another doc and I can understand that.

            But, I'd like to mention that Dr Lever called me last night after I left a message in the morning. You all said he would call, but I was still shocked when I answered the phone. He seemed very interested, asked a lot of questions, but was a little 'cut to the chase' when I was describing details. I don't think I'm long winded and frankly didn't know 'how much' he wanted to know. But, anyway, based on limited data and no written reports, etc, he wonders if my mitral valve is more in danger or the culprit than my cardiologist thinks. When describing my symptoms, he said, you need to be seen, when giving my history, he again said, you need to be seen. I'm a little more confused now as I don't know really what is going on.

            I told him my stuff was to be on it's way, but I'm a little frustrated as I don't know where it went, when it was sent, etc. Dr Lever asked as much for me to find out if it was sent UPS, Fed Ex, what. He wants to find it. I called my nurse today but she's off and her replacement said no info was indicated in my chart or computer when it left, to whom it was sent, etc. I'm a little annoyed but she'll be in tommorrow so I should figure it out.

            Dr lever says he hopes to review it by this friday as he's off next week. So, I'm afraid I'll have to wait another week to see him. Plus, time is short to get the stuff up there by this friday. Frankly, it should have been sent overnight, but I don't know if it was.

            Ah, the waiting........
            thanks, laura
            Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.


            • #21
              Direct and to the point, that’s Dr Lever.
              No sugar coating.
              You need hand holding & personality, DR Martin Maron at NE.

              You need to be seen!

              Dr Lever will only go by his own findings. He will not go by other doctors reports. Just call and make the appointment if you think CCF is right for you. You may be surprised that 1st available is not as soon as you may think.

              If you are surprised that Dr Lever called you back, you still don’t get it. All of the doctors you hear Lisa speak of will return your call. They care about you.

              Believe me, when Dr Lever says he will try to find it means he is calling around & literally walking from office to office trying to track it down. But finding it or not finding it doesn’t change anything. He needs to se you.

              Mayo, NEMC, or CCF … – you need to be seen.

              We all look forward to meeting you at next year’s annual meeting. Something tells me you will be there.
              Cleveland Myectomy Club
              August 31, 2004