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Choosing a location for Myectomy

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angusjcampbell Retired from Healthcare Telecomm in NY City in 2004. Diagnosed with HCM in 2005, moved to Golden Isles region of SE Georgia in 2006. Now working for a non-profit ministry called International Seafarers Center at the busy seaport in Brunswick . Find out more about angusjcampbell
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  • Choosing a location for Myectomy

    Hello All

    Well, the Norpace has not worked as well as I had hoped as I am regularly "breaking through" my meds with symptoms. Dr. Sherrid here in New York tells me that I have exhausted the medication options, so it appears I will soon be shopping for a myectomy. I appear to be losing mobility at a rate that tells me this is the way to go.

    I live about 5 blocks from an "HCM Program" - Dr. Sherrid and his team at St. Luke's / Roosevelt here in New York. He says they have done over 100 myectomies with no deaths and no repeat procedures. That sounds like they are beating the odds. And yet everybody, including New Yorkers, are flying to Cleveland and I'm sure it's not just the frequent flier miles.

    I know Eileen is there having her procedure done as I type this or is just in recovery, so my thoughts and prayers are with her.

    All things being equal, and I guess they're not, I'd love to do this close to home for obvious reasons. Also I may have a higher deductible and more co-pays when out of my insurance network.

    I know some of the concern over the NY option is the St. Luke's hospital itself. The staff their seems competent and they were very good to me durring my 3 day stay for the Norpace and Cardiac Cath, but it is a hospital in Midtown NY and it attracts a rough crowd. It felt Like a high tech homeless shelter. I have spent more time in Hospitals as a vendor and service provider than as a patient, so my expectations my not be realistic and maybe such conditions are common in many large centers. For what it is worth I am told this time I can have private room.

    Is Cleveland so idyllic, or is it just that they have done over 700 of these? that's a lot, but so is 100 for establishing basic competency, isn't it?

    Here in NY we also have Columbia Presbyterian and they have a fantastic world-class cardiac surgery team. Recently they were in the news for treating Pres. Bill Clinton. Do they do myectomies?

    I have PM'd a couple of locals who have taken the Cleveland option but would also like to hear peoples' thoughts on their choices for Cleveland over other sites. Of course many have to travel anyway to get this kind of care and Cleveland may be the choice for logistical reasons as well.

    Thanks and I look forward to meeting some of you in NJ at the HCMA Conference soon.

    Be well all.
    Angus Campbell
    Golden Isles Region, Southeast Georgia, USA

    Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
    Myectomy Jan 9th 2014 at Cleveland Clinic
    Drs Lever and Smedira

  • #2
    Hiya Angus,

    I'll speak only of my own experience and try not to sound too much like a Cleveland Clinic Cheerleader here.

    Obviously for me geography was an issue since Cleveland is just 5 hours away by car. Also, my local docs here have worked and/or studied with Dr. Lever and Dr. Lytle in the past so there was a foot in the door so to speak. They know the folks in Cleveland well, have refered patients there before, and they all work extremely well together without stepping on each other's toes as sometimes seems to happen. That has been a real bonus.

    Going strictly by the numbers though, i have to admit they did influence my decision quite a bit, or at least made me that much more comfortable with the decision i had made. In my mind, performing 700+ myectomies doesn't just mean they've gotten good at the procedure, it also means that they've seen every possible type of complication there is, and know how to deal with it on the spot. It certainly didn't hurt my decision either that they've been ranked the number 1 heart hospital in the country for ten years now. They've seen it all, done it all, and know how to react.

    I'm sorry that the Norpace has not done the trick for you. I know you and others have had high hopes that it would be effective. Nobody likes the idea of open-heart surgery.

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

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    • #3
      Hi Angus,

      As I approach the one year anniversary of my myectomy (May 15 04), I would agree with Jim 100%. The care I got at CCF was top shelf. If something happened to me and I had to go through the same procedure again, I would not think twice about going back to Cleveland.

      I realize that you have other things to consider like insurance and travel, but you have to think about YOU. Please weigh all your options, the good and bad, and make the decision that you feel is best for you.

      Good luck and keep us posted...


      Tigger1
      " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

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      • #4
        Angus,

        Remember, there is no hurry to make your decision. You have lived with your symptoms, so you can live a little longer with them.
        With that as an understanding, why not come to the annual meeting next month. You can talk to Dr. Lever himself, as well as Marty Maron from NEMC and Dreanni from the Mayo. I actually think Dr. Sherrid will be there as well. You can also talk directly to Lisa although she usually is pretty busy.
        I think that will put you in an excellent position to make your decision.
        Since I'm from Atlanta and there hasn't been a myectomy performed here in many years, it was a no brainer for me to go to one of the big 3.
        Fx

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        • #5
          Thanks Fx, Jim and Tigger

          Yeah, I'm in no hurry! I've got plenty of time. to learn, shop around and get 2nd opinions.

          You can bet I'll be at the HCMA Conference. I was originally going to pop over on Saturday (I live an hour or less away), but I've decided to take room and stay so I can benefit from more networking at dinner time and so forth on Friday and Saturday. I'm looking forward to meeting some of the gang.

          Unfortunately Dr. Sherrid won't be there. He was invited but has a previously scheduled obligation.
          Angus Campbell
          Golden Isles Region, Southeast Georgia, USA

          Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
          Myectomy Jan 9th 2014 at Cleveland Clinic
          Drs Lever and Smedira

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