Has anyone had surgery for Apical Hypertrophic Cardiomyopathy

Hi, yes Prof Elliot is the Clinical Lead at St Barts. Prior to this, I used to attend the Heart Hospital in Westminster under Prof William McKenna whilst Dr Elliot was his Deputy.
I initially met Prof MkKenna at a Cardiomyopathy Conference in Manchester approx 20 years ago & he informed me that me that he runs a Specialist Clinic for Cardiomyopathy.
I have watched several talks by Prof White & is a regular Speaker at Cardiomyopathy UK.

How long did you try Mavacamten (Brand Name Camyzos) for? As it was only recently approved on the NHS by NICE.
Sorry to hear about your issues with Mitral Valve.
Wow, your left ventricular outflow tract (LVOT) gradient is v high. What symptoms does this cause for you?

I'm trying to cope as well as relatively possible. I'm highly symptomatic, I struggle to manage my daily chest pain episodes.

Hi, i would like to ask about Surgical Apical Myectomy. What is your experience of this Intervention & what potential benefits have you gained?

What symptoms were u experiencing prior to Apical Myectomy?

Hi, what symptoms were u experiencing prior to Apical Myectomy?

I could not get up a flight of stairs. I was dizzy and often had to touch the floor with my hands for fear of fainting. I had major issues with potassium and often would go by ambulance for severe aches and pains caused by potassium at 1.8. I would gain sometimes up to 8 pounds of water weight in a day and dieuretics would deplete the potassium. I couldn’t play with my 6 year old at all. I couldn’t concentrate or follow conversations.

Hi there,
You certainly have been in touch with good people. I go to the Cardiomyopathy UK conference every year and my cardiologist is Professor Gerry Carr White. In fact I got the call today from Guys and St Thomas’ and will have mitral valve surgery on the 8th September. Crumbs bit nervous. Re Mavacamten it just didn’t work for me. (It’s not for everyone) The first week felt brilliant but then headaches set in, jaw ache, double vision the lot so had to stop it sadly. I was told my thickening was too small so not for me sadly I was so disappointed. Symptoms, I dont really get many.. the odd dizzy spell and have to pace myself I suppose but not much really. I have had a couple of pre syncope episodes but can walk upstairs very easily and do 8000 steps without a problem. This has been going on since 2007 but have been told the mitral valve leak will get worse who knows. What are your symptoms you do sound to be suffering. What were you diagnosed with all those years ago. Where in the UK are you? Keep well.

AHCM diagnosis . I am getting pain ,breathless ,leg discomfort .
I was coping , now I get pain when HR goes above100 .
Any ideas gratefully accepted.

Hi not sure what my condition is, but cardiologist said heart is dying. Left ventricle majority black with use down to 47%. On a lot of medication however no future fix. Caused by enlarged heart muscle pumping thick blood vessels.long term plasma donor in Oz since 1975 which caused thickening and ultimate condition. Anybody know what this condition is called?

@annieobee and @fletch1950 Welcome to Mayo Clinic Connect, a forum where you can meet others with similar health issues. It is not a place to get professional medical advice or care. I'm glad you found our little online community of HCM/HOCM people and perhaps a few more of our fellow discussion participants from Australia will share their experiences. HCM is hypertrophic cardiomyopathy, adding an A (AHCM) or an O (HOCM or OHCM) denotes obstructive. This is a horrible disease, inherited, and scary for those of us who live with it.

I hope you do not mind that I am conversing with you together. Imagine our 3-way conversation! Let's focus on the fact that you are not alone, there is much "out there" to learn more about HCM. There are resources that I hope you will look into. Your specific medical questions should be addressed with your cardiologists. @annieobee, do ask your doctor about your magnesium level.

You can choose to read about HCM and learn all you can about this disease. Perhaps your knowledge will help generate questions for your medical care team. Knowledge is Power, people often feel they can "own it" when they can contribute to the decision making for their care. You may wish to start with reading https://www.mayoclinic.org/departments-centers/hypertrophic-cardiomyopathy-clinic/overview/ovc-20442502 and this one, too is informative (may repeat the other, but there is additional information). https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198

Looking for resources in Australia, I found https://cmanz.org.au/types-of-cardiomyopathy/hypertrophic-cardiomyopathy-hcm/ and also https://www.medifind.com/conditions/familial-hypertrophic-cardiomyopathy/776/doctors/location/AU. We highly recommend seeking the best care - this is your precious heart! I typed in my browser "Best HCM hospital in Australia" and there were several results. Australia is a big country, the hospitals may have satellite locations in other parts of the country.

I very highly recommend contacting the Hypertrophic Cardiomyopathy Association at 4hcm.org, this organization helps people from all over the world in finding the resources/care suited to their needs. You can contact them from the website, and they will arrange an online intake interview and whatever else they deem necessary to help you.

What recommendations have you received from your cardiologist? How long have you known you have HCM? Have other family members been screened?

@fletch1950 hypertrophic cardiomyopathy.
Can be hereditary or not.
Thickened walk ( inward) of left ventricle stressing heart’s ability to pump the blood through.
I have been prescribed CAZMYOS., cardio requires an echocardiogram every four weeks for first 12 weeks. I am at 12 weeks. Helps the chest pain, but not the heavy breathing , and very very tired all the time!