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Leaning towards a Myectomy at Cleveland- Lots of Questions

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Colorado213 Wife to husband diagnosed with "a severe case of HOCM" according to Dr. Salcedo at University Colorado Med Hospital HCM Center March to June 2014 I'm the main researcher and planner, so here I am! Mother to 3 young boys who will be tested in the coming months as soon as we get daddy situated. Find out more about Colorado213
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  • Leaning towards a Myectomy at Cleveland- Lots of Questions

    Hi (new here),

    My husband has HOCM (37, presented in ER with CHF). He ran the gamut of tests with the HCM Specialist at UC, Medical Hospital here in Denver with Dr. Salcedo. Very nice doctor, but a bit lacking in instilling confidence to handle my husband's unique heart. Dr. Salcedo even said Justin's heart was the thickest he'd ever worked with to date. Then he recommended the Ablation which surprised me as my limited researched pointed to a Myectomy (his age, and the amount of obstruction + a significant mitral valve regurgitation/murmur). My husband started his own research, followed by a very enlightened conversation with Lisa Salberg which helped clarify some of our thoughts. As you know, it is a lot to take in!

    Right now, Justin is scheduled to get an AICD installed July 24 at the University here in Denver. Meanwhile, we just received the surgical checklist via email from Cleveland clinic (which I am leaning towards over Mayo only because from Denver we can get a direct flight to Cleveland). Can anyone share their experience with timeline/logistics of applying for a surgical consult with Cleveland?

    1) Did you start with an emailed checklist?
    2) Did you have to repeat your diagnostics? (Echo, MRI, Holter, Stress)
    3) Is there anything in the process you wish you knew ahead of time that you can share with us?
    4) We would like to have the procedure done before the end of the year to best advance Justin's health but also to meet all our out-of-pocket expenses in one year (it sucks when money has to be a factor). It is now mid-June, is this a realistic timeline?

    Slightly off topic-- But did you have an ICD put in at the some time as your myectomy? or previously?

    Adding: 5) Did you see Dr. Lever then get referred (Trip 1) to the surgeon (trip 2) or just go straight to the surgeon based on test results?

    thanks!!
    Last edited by Colorado213; 06-15-2014, 03:51 PM.
    Megan, wife to Husband, Justin with HOCM
    Husband diagnosed at 37 when taken to ER due to CHF on vacation in San Diego at Pomerado Hospital, March 2014
    Seeing Dr. Salcedo in UC Med Hospital Denver upon diagnosis
    AICD/Pacemaker July 2014 @ UC Med Hospital, Denver with Dr. Nguyen
    Myectomy at Cleveland Clinic October 2014 with Dr. Smedira
    Parents to 3 boys, 11, 8, and 6 all currently clear from recent echos

  • #2
    Re: Leaning towards a Myectomy at Cleveland- Lots of Questions

    I myself had a myectomy at Mayo and had an ICD in place for a couple of years before I went. It was no problem for them to operate around the ICD.

    It is strongly likely that Cleveland will want to repeat all testing as they like things to be done their way.

    I travelled to Mayo knowing that surgery was likely and scheduled both the testing and surgery in one visit. It is likely you can do the same thing at Cleveland.

    Dr. Lever's office can help you sort out the details. He is top-notch and sees people from all over the world and deals with these issues every day.
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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    • #3
      Re: Leaning towards a Myectomy at Cleveland- Lots of Questions

      Originally posted by Cynaburst View Post
      I myself had a myectomy at Mayo and had an ICD in place for a couple of years before I went. It was no problem for them to operate around the ICD.

      It is strongly likely that Cleveland will want to repeat all testing as they like things to be done their way.

      I travelled to Mayo knowing that surgery was likely and scheduled both the testing and surgery in one visit. It is likely you can do the same thing at Cleveland.

      Dr. Lever's office can help you sort out the details. He is top-notch and sees people from all over the world and deals with these issues every day.
      YUP YUP YUP. Call Dr Lever's office and you will get the full 411 on what to do.
      Your timeline is easily doable based on my recent experience with myectomy at Cleveland.

      Dr Lever's office will give you address to fedex records.

      If you get the invite, you will be asked to fax a form signed off by your dentist that you have had no mouth infections within six months. That was the whole checklist, besides being given the number to call for the free limo pickup at the airport.

      I put my foot down with complaints to my local cardio guy in October 2013 and showed up at CCF Monday Jan 6 2014 for 3 days of tests and surgery the 9th that week. They spoke as if they could have bumped up that interval if my case was more urgent.

      Direct flights are a good call..
      Last edited by angusjcampbell; 06-15-2014, 06:51 PM.
      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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      • #4
        Re: Leaning towards a Myectomy at Cleveland- Lots of Questions

        I think Angus' comments are right on the mark.

        In my case, I talked on the phone with Dr. Lever (yes, that happens!), he told me he wanted to see me quickly and we set a date 2 weeks later. I flew there for tests (if I remember correctly, Tues/Weds/Fri) and on Monday had my surgery. Yes, they'll do their own tests, partly to confirm things, partly because they have a better idea what they're looking for (and are better at finding it) than many local cardiologists, and partly because their tests can provide much advance info for the surgeon. Yes, it's possible that they'll say "no myectomy needed after all," but if they've said they think you should make the trip, they have a pretty strong feeling that they'll wind up doing surgery.

        Gordon
        Myectomy on Feb. 5, 2007.

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        • #5
          Re: Leaning towards a Myectomy at Cleveland- Lots of Questions

          Hi fellow Denverite!
          We spoke a bit when your Husband was first diagnosed and I am so glad that you called Lisa and did your research. this can be part of the difference between a self designated HCM specialty Clinic and an HCM Center of Excellence. Though many specialty clinic are top notch and follow the AHA 2011 guidelines for managing HCM.
          The cardiologist running the clinic at U of Colorado has a personal bias towards alcohol ablation... Which he performs himself. I hope in the future the clinic can expand to a more full service unbiased system.....but until then, I refer those who ask to a COE rather than to U of C.
          You have found your way to a COE and that's all that matters. I had dinner with Dr. lever at the HCMA meeting and he is a very kind and compassionate man.....gave me his phone number written on a napkin if I needed to call him. Angus and Gordon are Cleveland Clinic alumni ....pump them for all the info you need. We are here to support you.
          Last edited by JillC; 06-16-2014, 12:11 PM.
          After years of symptoms:
          Officially Diagnosed HOCM 2006
          Myectomy 3/11/13 at non-COE
          Extended Myectomy 7/23/14
          At Mayo with Dr. Joseph Dearani

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