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  • Stuart Schwartz
    replied
    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.

    Leave a comment:


  • eatwell
    replied
    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

    Leave a comment:


  • Tigger1
    replied
    WELL SAID. You hit the nail right on the head...Thanks Pam...


    Tigger1

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  • Pam Alexson
    replied
    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.

    Pam

    Leave a comment:


  • Lisa Salberg
    replied
    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,
    Lisa

    Leave a comment:


  • mtlieb
    replied
    Laura,

    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.

    Jim

    Leave a comment:


  • Cynaburst
    replied
    I just wanted to echo what Stuart said about the Mayo. I was most impressed with Dr. Ommen and Dr. Dearani who spoke at the meeting last week. Although I am not at the point of having a myectomy yet, I might be there sometime, and I went to the meeting so I could meet some docs from Cleveland and Mayo ahead of time. I am completely bewildered now, because while Cleveland is probably easier to get to, and the message board is filled with folks that have had great outcome from CCF, those Mayo docs rocked! In fact, I liked them so much that if and when my time comes, I might have to go to Mayo....

    Leave a comment:


  • Stuart Schwartz
    replied
    This thread may be a little to weighted towards CCF (this thread does name Dr Lever).
    The Mayo is on an equal playing field. The only reason that you may see more people talking up CCF is because there are more people active on the MB that have been to CCF then MAYO.

    Also travel to Cleveland is a little easier trip then the flights and travel from the airport to Rochester, MN. (based on hearsay).

    Having sat at dinner with one of the two Mectomy surgeons from Mayo last Saturday, he said that they did about 90 Myectomys last year. This is up considerably over the last few years. Just basing it on the numbers that Lisa mentioned to me a year ago.

    This would lead me to believe that there SHOULD BE MORE INPUT about Mayo from HCMA members. If the input was here, I think you would have a hard time choosing between the two.

    (John Murray is returning home from Mayo today. He will be posting his recovery over the next few weeks - So far doing great)

    I had my Myectomy at CCF. I’m very big on Dr Lever & CCF. But now I would have a harder time choosing between the two having been around HCMA for the last year.

    LISA- Chime in

    Leave a comment:


  • momataz_911
    replied
    Laura,

    I guess you can see from all the post that some of us have different views than others. I had Dr Lever as my cardiologist up there and Dr Lytle as my surgeon. Here is my point of view on the matter.

    When I went up there I was very scared, I was 42 and had worked in the medical field (Emergency Medical Tech) on an ambulance for 10 years and had seen quite a bit, however, this did not make it any less scary to me. I met Dr Lever right at the beginning and we sat and talked about all the options, the procedures, and the outcomes. He is very compassionate, he is TRULY concerned about you thought and you feelings. He does not talk down to you like "you are wasting my time" he wants to make sure you understand everything. As for the staff in his office I feel they are all good because he really depends on them and I feel personally that when dealing with something so serious he would not stand to have an employee that might give the wrong info out. He will tell you all you want to know about HCM/HOCM, as he is well trained in this field. If he don't know an answer he will find out and get back to you with one.

    I an not sure I know which surgeon that you are going to have if you have to have surgery but Dr. Lytle is great. He too will take you in his office and sit you down and talk to you on an level you can understand. He wants to make sure that you know what is going to happen, what to expect after surgery and he does not push you into having surgery. He lets you make that decision. He too, is well educated with HCM/HOCM. He has done lots of myectomies. He is well respected in that hospital. He will also make sure that your family knows what to expect. When my husband and I went in he had us to watch a movie before he would talk to us. Afterward he sat us down and explained every last detail.

    Keep in mind there are a lot of great hospitals and a lot of really good Doctors. I can only tell you what I experienceed. I had dealings with CCF and also Mayo in Minnesota. and I found both places to be very qualified.

    If you have any more questions just let us know and I am sure someone will help all that they can.


    May God be with you and guide you in the right direction.


    Christy

    Leave a comment:


  • Stuart Schwartz
    replied
    Well, in normal open heart and most operations, it is said that the surgeon is the mechanic. He can cut and fix but don’t ask him a medical question.

    But that is a lot different with HOCM. You will find that the few surgeons that do Myectomys that we speak of (be it the Mayo, Cleveland, NE...) are "not just cutters".

    Anyone of them can talk to you about HCM with knowledge of your disease. Yes these very gifted surgeons are able to answer question about HCM. It is fair to say that these few surgeons probably know more about HCM then most heart doctors.

    I realized this when I meet with Dr Bruce Lytle (surgeon) the night before my Myectomy. And at the annual HCMA meeting last weekend, you would not have known which of the doctors were cardiologists or surgeons or electrophysiology.

    LISA - CHIME IN HERE. I feel this is important and I think you know what
    I am trying to say.

    Leave a comment:


  • Reenie
    replied
    Originally posted by laga
    Thanks again everyone for your valuable feedback, Laura
    That's why we're here.

    Reenie

    Leave a comment:


  • eatwell
    replied
    ok, this is what I was hoping to hear. Stuart, you cleared up things immensly, I indeed thought Lever was a thoracic surgeon. Now, I understand better. That does make sense, surgeons are 'cutters', cardiologists are more broad based.

    I've been aware of the Maron's repitation for years, but Lever was new to me. Obviously I've not been 'current' due to the stability of my condition and leaving it at that for years.

    I called Dr Lever's office this morning, hoping to get Karen. She's apparently gone for several days and I talked to Marquerite (?). She took my info and said she would place on Dr Lever's desk. I mentioned my reports are coming up and to look out for them.

    Wait and see, I guess.
    Thanks again everyone for your valuable feedback, Laura

    Leave a comment:


  • kelly
    replied
    Below is Dr. Lever bio information taken from the Cleveland Clinic webiste as well as the link to articles that he has published. I hope this information answers your questions.

    Lever, Harry, M.D.

    Phone: (216) 444-6970
    appointed: 1978
    medical school: University of Pittsburgh School of Medicine Pittsburgh, PA
    specialty training: Fellowship - University of Rochester-Strong Memorial Hospital Rochester NY
    Internship - Montefiore Hospital/Univ. Health Center of Pittsburgh Pittsburgh PA
    Residency - Montefiore Hospital/Univ. Health Center of Pittsburgh Pittsburgh PA
    other education: B.S. - University of Pittsburgh Pittsburgh PA
    specialty interests: echocardiography, clinical cardiology, hypertrophic cardiomyopathy

    Lever, Harry, M.D.

    Biographical Sketch:

    Harry M. Lever, M.D. is a staff physician in the Cleveland Clinic Heart Center who specializes in echocardiography and hypertrophic cardiomyopathy. Dr. Lever, who is board-certified in internal medicine and cardiovascular disease, is a Fellow of the American College of Physicians, the American College of Cardiology, the American College of Chest Physicians and the Council on Clinical Cardiology of the American Heart Association. In addition, he is a member of the Board of Trustees of the Ohio Chapter of the American College of Cardiology.

    Dr. Lever is currently involved in a clinical trial that focuses on alcohol ablation of the proximal septum in hypertrophic cardiomyopathy.

    A graduate of the University of Pittsburgh Medical School, he completed his residency at Montefiore Hospital in Pittsburgh and his fellowship in cardiology at the University of Rochester in New York.

    http://texis.clevelandclinic.org/cgi...i.nlm.nih.gov/

    Kelly

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  • Tigger1
    replied
    When I had my surgery at CCF ( May 04 ), Dr Marc Gillinov performed my septal myectomy. To my knowledge he is still a surgeon there. That would make at least 3 doctors doing myectomys at CCF. In my opinion Dr Gillinov was an outstanding person to deal with...


    Tigger1

    Leave a comment:


  • Toogoofy317
    replied
    Adding on to Stuart. I would also like to add to the list of top centers as NEMC in Boston. They are right there. Actually, Dr. Barry Maron's son is one of the team of specialist up there. This is where I personally go and think they are absolutly fantastic. When I go there I actually get seen by three docs. Dr. Maron, Dr. Udelson and Dr. Link. For me Maron is my call to guy when I'm having trouble, Dr. Udelson handles the echo work and the talking at the person to person visits, and Dr Link is the EP guy. They were absolutly wonderful I can't say enough.

    Each of the centers mentioned are great but since you are so close to CCF. But, give Lisa a call she is a wealth of information.


    Just my imput!

    Mary

    Leave a comment:

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