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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: Aug 26 9:56am | Replies (870)Comment receiving replies
Hi, I'm Janet, and I was diagnosed with HCM almost 20 years ago after my 18 year old son was diagnosed with it. My mom died young from it and so did her grandfather. I have very little information about my dad's side, but he did have a triple bypass in his 60s. It seems I may have to have a myectomy. My question is this: do they perform myectomies at the Florida Mayo Clinic (I live in Florida), or will I have to go to Minnesota? I have called the Florida clinic and e-mailed them, but haven't received a response or appointment from them yet. But they did e-mail me that Mayo charges 15% above my Medicare which is with BCBS. I've heard that Cleveland Clinic also does HOCM myectomies, but they don't accept my insurance as in-network either. I'm still waiting for a response from them as well. Are Mayo and Cleveland clinics rated equally high for these myectomies?
Replies to "Hi, I'm Janet, and I was diagnosed with HCM almost 20 years ago after my 18..."
Hi Janet,
I'm on this and hope to answers for you soon about Florida.
Thank you for the info. Do you know the surgeon/s at Mayo in Minnesota who perform the most myectomies? I found one surgeon at Cleveland Clinic who has done 2000 +, but I haven't found this info yet from Mayo.
Thank you. I did receive a reply that convinced me that going to Mayo in Minnesota would be a better outcome due to higher volume of patients undergoing myectomies there.
I'm glad to hear you got a reply. Yes, the largest number of myectomies are done in Rochester. You can read more testimonials from Mayo patients in this discussion, and how the travel was not the barrier to excellent care http://mayocl.in/2ef1nMc
You may appreciate seeing these 2 webinars with HCM experts from Mayo Clinic
- Steve R. Ommen, M.D., and Hartzell V. Schaff, M.D., talk about Hypertrophic Cardiomyopathy and the Surgical Treatment Apical Myectomy http://mayocl.in/2dmWhdI
- Dr. Dearani Dr. Joseph Dearani, cardiac surgeon talks about pediatric congenital heart disorders http://mayocl.in/2dLzuK9
Hope this helps.
Hello @eelnaloblob18 , I work with the heart practice for all three Mayo sites. Did you get all the information you need? If not, I will follow up with our cardiac surgeons. Thank you for your insightful questions. It is good that you are being proactive in doing research about outcomes.
@eelnaloblob18, depending on where your thickened muscle is (i.e. septal, mid-ventricle, apical), the myectomy you need might require different techniques. For instance, I have apical HCM with mid-ventricular obstruction and apical aneurysm. The procedure I underwent was Apical Myectomy, which took a trans-apical approach. This trans-apical myectomy is different from the traditional septal myectomy. Your doctors should determine what kind of myectomy you need. I believe a few COEs can all do septal myectomy quite well. But if ultimately what you need is an Apical Myectomy, you have to go to Mayo Clinic in Rochester. The technique for this procedure was invented by Dr. Hartzell Schaff at Mayo Clinic. I do not believe other centers can do trans-apical myectomy as well as Mayo Clinc can. Something for you to consider. Hope everything works out well for you.
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Both are rated equally high. I know that Surgeons from Mayo would travel to the Mayo in AZ for surgeries, but not sure if they do that for Florida. I think part of the issues is the support staff at these facilities.