Apical Cardiomyopathy

Hello, @mistymopps3. I had never heard of this heart disorder before, however, I looked it up on Mayo's website, http://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/dxc-20122103. If you don't mind sharing more information about yourself, could you tell us how this was diagnosed and what type of symptoms you have. What type of information has your doctor given you? Best wishes to you!

Hi @mistymopps3. I have LV hypertrophy too, but not apical, so your symptoms may tell the difference with mine, and Teresa has asked you to tell us more about that so I can gauge whether I can be helpful. My diagnosis is now 8 years old, and rarely have I had definable symptoms other than swollen ankles and feet from edema. Until this year, we attributed the edema to medication for hypertension -- calcium channel blockers, for example -- which lasted for several weeks. In March 2016, the edema returned, indicating reduced efficiency of the heart in circulating blood to and from my feet. But last month, the edema resolved itself, and I have no swelling now. Throughout the last 8 years, I had no other symptoms, and the edema didn't limit my activity. I can't report the thickness of my LV wall; I haven't asked my medical team for that factor. Looking forward to any further information you care to share so we can press this discussion forward!

I add my welcome Misty.
We have several members talking about hypertrophic cardiomyopathy on Connect. Some have the obstructive type of HCM, hypertrophic obstructive cardiomyopathy (HOCM) and others the non-obstructive type, which is of course apical hypertrophic cardiomyopathy.

I'm tagging fellow Connect members @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @23273333 to bring them into this discussion about apical HCM and possibly address your question about the wall thickness.

Also, Misty on Nov 2 we are hosting a webinar on "Hypertrophic Cardiomyopathy and the Surgical Treatment Apical Myectomy" with Mayo Clinic cardiac experts Drs Schaff and Ommen You can sign up to take part here: http://mayocl.in/2dmWhdI

I had no idea I had any problem until I went in for a hysterectomy in 2012 and was told I had a heart mummer. They delayed the op until the heart had been assessed and I was told I had apical cardiomyopathy. I have been for a check up each year since although I haven't been called this year. The wall is 1.34 cm which from reading about doesn't seem too bad but my cardiologist is always in such a hurry he won't discuss anything. In 2015 I was put on a 7 day heart monitor and found to have quite a few non sustained Ventricular tachycardia. Again I wasn't aware of this. The cardiologist said I may be at risk of sudden cardiac arrest but after discussing it with his panel, it was decided not to do anything about it and a ICD wasn't necessary at this stage. I'm on calcium channel blockers and beta blockers (only a small dose) for high blood pressure which they thought had caused the cardiomyopathy. The trouble is I am now beginning to get paranoid about it and feel that if I can find out more I may have some peace of mind.

Apical is in the base of the heart. There's a video being shown by Mayo on 2nd November. That's how I came on to this site because I thought I might find out more. Good luck with your LV hypertrophy.

Thanks for welcoming me. It was the webinar which I saw which directed me to you. As you can see from my post above I have shown nsvt on a monitor although I didn't realise. I did go into A&E (I'm in the UK) on 1st July with an irregular heart rate which I think may have been caused by working outside in the heat (it was a very hot day). I was put on a 24 hour monitor afterwards, but there has been no communication from the hospital since and although I've phoned I've got nowhere. Hence I'm determined to find out as much as I possibly can about apical cardiomyopathy.

Welcome, mistymopps3. I have the non-obstructive form of the disease. My symptoms are well controlled by medication and I have an ICD because i did go into cardiac arrest six years ago (before diagnosis) I agree that searching for more information is critical. I was told for 23 years I did not have this disease and it turns out I did. One thing I would also suggest in addition to the Mayo seminar is to contact the Hypertrophic Cardiomyopathy Association (HCMA) as they can provide a great deal of help on this. http://www.4hcm.org If you are on Facebook, I can send you an invitation to their group on Facebook because we have some very knowledgeable people based in Europe who can help you sort out where to go in the UK to get some answers. We have to be our best advocates, especially with this disease that far too many cardiologists do not understand.

For those of us with the non-obstructive form (apical) there are no real surgical options, we just work with our doctors to deal with the symptoms. I am looking forward to the Mayo seminar to see if I can get some more information. I have mostly exhaustion and trouble climbing stairs, walking distances, and dealing witht he heat (or any extreme temperature, but heat is the worst.) So many things to say, but let me know if you have specific questions.

Hi Pat Mattos, Thanks for that. I do belong to the HCMA facebook page which I've found very useful. I get arrhythmia (nsvt at the moment) and am waiting for the results of the latest 24 hour monitor. Here in the UK everything is so slow. I'm also waiting to see if the DVLA will take away my driving licence. My cardiologist has to support my driving request. It's all very stressful. The heat took me into A&E on 1st July so that is what has sparked the driving licence problem.

I thought it might have been the webinar that brought you to Connect. I'm thrilled so many members have greeted you. You will meet more during the webinar too. I might suggest you sign-up for the webinar. That way you'll get an email reminder the day before and an hour before. No need to translate into your time zone.

Glad you are on their Facebook page!
I still have NSVT, which freaks out non-HCM doctors., HCM doctors, not so much, particularly with my ICD in place now. I hope you get some answers from the 24 hour monitor soon. I've had it take extra time here as well if several doctors needed to look at it. I hope you get to keep your licence. Additional stress is not needed with this disease!