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Has anyone had surgery for Apical Hypertrophic Cardiomyopathy
Has anyone had surgery for Apical Hypertrophic Cardiomyopathy?
I am 34. I was on camzyos for a year. It didn’t work for me. Then last year I had a septal myectomy. I was ok for awhile but now my gradient is back up to 50. Supposedly, I still have thickness in the lower, more narrow part of the left ventricle. Doctors in Houston do not want to operate on me. They said it is too difficult to work in that area. My doctor is reaching out to the Mayo Clinic because they have done it for the past 10 years. Does anyone know of this procedure or have you had it performed?
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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.