HCM-ers: Introduce yourself or just say hi
Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect - a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.
I invite you to follow the group. Simply click the follow icon on the group landing page.
I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.
Why not start by introducing yourself here?
Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.
I have been involved in HCM for the past 10 years and those folks I have met who did not have theirs done at a high volume center have a higher incidence of a second surgery or they never got the relief they sought. Your father sounds like a great guy - glad he doing well.
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.
Thanks Colleen, I'll watch it soon! You know our family had never heard of HCM before my father was diagnosed, so it was all quite scary to us. It's one thing to hear advice from a doctor, but quite another thing to hear about first hand experiences from patients. What a wonderful thing this forum is, thanks for creating it.
HI Wandy and welcome. Have you been able to travel to Mayo Clinic to be evaluated?
Thanks mbcube, we're grateful he's doing well. I look forward to your advice on HCM, with your experience it sounds like you're going to be a good resource here!
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.
Hi, I just want to say how much I appreciated the webinar on apical cardiomyopathy. I am in UK so am not able to access the facilities you have in the US but still very much appreciate being able to "listen in" on the webinars you have.
Knowledge reduces fear. Thank you
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.