@vivian88

I live in Taiwan where there is a lack of info on HCM and lack of medical resources for HCM patients. However, Taiwan has a medical center which leads the world in arrhythmia treatment, especially for Afib. So I underwent a trans catheter RF ablation procedure in Taiwan before I ventured out to Mayo for apical myectomy. I had both Afib and VT at that time, and my EP was able to take care of both in a 4 hr procedure. I have been taking anti arrhythmia drug called Multaq (Dronedarone) and beta blocker Concor (bisoprolol), plus anti coagulant Xarelto, even to now (15 months post apical myectomy). Since my ablation procedure 2 years ago, I have not been found to have recurrence of Afib or VT. I do not have an ICD implanted and have never been put on Norpace.
@jhoffmanj, sorry I don’t know if I am being helpful to you at all. Perhaps you can ask your Dr. to change your medication to Multaq (which, from what I understand, also has side effects, but it works on me perfectly)

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Thanks for your information. I appreciate it.

@jhoffmanj Did you talk to your doctor about the bloating and distended stomach side effects. Did s/he suggest a solution or medication alternate?

I am 45 and I have HCM.i had a defribilator put in 3 years ago and just had open heart surgery to thin my heart in november.I have a stiff heart as well. I feel like my symptoms are getting worse and no better after surgery. I am constantly out of breath, i get lightheaded and dizzy, and blurred vision. Not as many pulptations but when i have them they are bad. Is this normal?? Is this how i will live out my life?? Im already on all the meds.. Please help?

If you are not feeling better 6 months after surgery something is not right. Where did you have your surgery?

@cynaburst

If you are not feeling better 6 months after surgery something is not right. Where did you have your surgery?

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I had my surgery done at UPMC in Pittsburge Pa.

@cynaburst

If you are not feeling better 6 months after surgery something is not right. Where did you have your surgery?

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My Dr. Is saying my symptoms could be from the still heart. Im just nervous about the way i feel.

@pfazenbaker

I am 45 and I have HCM.i had a defribilator put in 3 years ago and just had open heart surgery to thin my heart in november.I have a stiff heart as well. I feel like my symptoms are getting worse and no better after surgery. I am constantly out of breath, i get lightheaded and dizzy, and blurred vision. Not as many pulptations but when i have them they are bad. Is this normal?? Is this how i will live out my life?? Im already on all the meds.. Please help?

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So very sorry, I wish there was a cure for HCM. Thinking of you!

@cynaburst

If you are not feeling better 6 months after surgery something is not right. Where did you have your surgery?

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Sometimes places that don’t do that many myectomies do an incomplete surgery. My best suggestion for you would be to go to one of the ultra-high volume centers for myectomy, such as Mayo Clinic, and see if there is anything different that can be done. Often times lower volume centers just don’t have the expertise to deal with us.

Read this experience from a nurse who had to have a second myectomy at Mayo:

https://hcmbeat.com/2016/09/04/guest-blogger-surgical-myectomy-a-twice-in-a-lifetime-experience-by-jill-celeste/

Also, read this recent article from Mayo Clinic’s HCM Center:

https://hcmbeat.com/2016/11/20/guest-blogger-the-view-from-a-hcm-center-by-dr-steve-ommen-of-mayo-clinics-hcm-clinic/

Hope you get some answers. You should not have to suffer with those symptoms. Most people do feel at least somewhat better after myectomy.

@cynaburst

If you are not feeling better 6 months after surgery something is not right. Where did you have your surgery?

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Here is one more thing for you to read about differences in outcomes at a Center of Excellence:

http://jamanetwork.com/journals/jamacardiology/fullarticle/2517391

@cynaburst

If you are not feeling better 6 months after surgery something is not right. Where did you have your surgery?

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I agree with @cynaburst. I would call Mayo in Minnesota and see if one of the cardiac team members can review your records.
The number there is (507) 284-2511. Any of the staff will give you the information where your records can be mailed or faxed for another opinion. I do hope you get answers. Please keep us updated xx

Hi @pfazenbaker,

You might wish to view these discussions on Stiff Heart:
Stiff Heart – diastolic heart failure http://mayocl.in/2qgtht8
Diastolic dysfunction and resulting a-fib: http://mayocl.in/2nTEukW

I’m also tagging @evelyn247 @oldkarl @lynnkay1956 @HeartPatches to see if they have any insights to share.
@pfazenbaker, have you thought about getting a second opinion?