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Hello @wishmyheartworked, and Welcome to Mayo Connect. I see you found the Hypertrophic Cardiomyopathy Group, and I hope you have had a chance to read some of the many interesting stories shared here by members just like you.
I can share a little of my story with you, and hope it helps.
I was diagnosed with a MVP, mitral valve prolapse years and years ago. That was the only thing I had. But things started to change as I got older. My same cardiologist listened to my symptoms and decided I had small vessel disease. That would explain my chest pain and shortness of breath on exertion. I was, and still am, a very active person. I was told to drink more water. Then a few years later, I was no better, getting more and more short of breath on the slightest exertion and was much more symptomatic. I was diagnosed with aortic stenosis, along with my MVP and small vessel disease.
It got to the point where even if I drank more water, as directed, I just couldn't go as fast or as far as I used to. The next day I would be fine. I could run up stairs. Walk six miles without stopping.
It made no sense.
I knew in "my heart" something was really wrong. Some days I couldn't even bend over and put my shoes on without gasping for air and have chest pain. I had terrible fatigue. Brain fog. Couldn't eat a large meal without paying for afterwards. But just drink water was the main prescription. I was put on a beta blocker. I hated them, and they hated me. Back to drinking water. Finally, during a hugely stressful time (my mom was dying, I had my demented father to care for and I was working) I saw my FP. Not my cardiologist. He told me he was sending me to my cardiologist ASAP there was something seriously wrong with my heart. It could not wait. I had yet another echo. A week later the cardiologist called me to tell me I did indeed have something very serious.
And very rare.
And I needed open heart surgery. To say I was surprised is an understatement. I was totally caught off guard. But he was going to send me to our local heart surgeon and he could fix it. But in my mind I thought, if it is so rare and so serious, did this surgeon know what it was and how to fix it? Oh...what I was diagnosed with was Sub-aortic membrane. It's congenital.
I tend to be a very compliant person and do not speak up for myself much, but I asked to be sent to two different places, Cedar-Saini and Mayo Clinic. I was diagnosed with Hypertrophic Cardiomyopathy. And it was obstructed.
I tell you all this because if I had listened to my cardiologist, I would have had open heart surgery for something I did not have. I was diagnosed with four different things before the experts got it right. Is your doctor an expert in HCM or HOCM? If not, can you request to be seen by an expert or at at Center of Excellence? It made all the difference in the world for me, and perhaps you need another outside opinion?
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Hi @karukgirl
Thanks so much for sharing.
Lots to unpack and of lots of similarities I am drawing. Particularly on the off and on days of symptoms but with an overarching gradual decline. Hard not to let confirmation bias jump here. Context wise, I am in the UK, and have been seen by different NHS hospitals, who are not great at sharing data (images etc).
It used to be 1 in 10 bike rides I used to get foggy in 2018, on those 1 in 10 I would get dizzy and shattered early in around he 30minute mark, and considering I was a 100mile capable and fit rider who does TT's weekly(Or did), that was odd. Now its 9 out of 10 rides, and I have moderated my pace severely. No more hammer down, just spin easily.
On top of that, if I build up fatigue with multiple sessions in a row, or stress I get very very brain foggy, and fatigued, stairs kill me and work is a nightmare to concentrate at. I consider myself lucky I dont get very out of breath, although some days stairs do make me breath very heavily when going up one to the bedroom, its seldom.
I've been in A&E too many times for pain and associated symptoms, and just dont bother anymore as its often 12 hours for "you are fine go home" and ride out the painful days, as they provide no insight or continuity.
Debra, the MRI was with my main cardiologist, who is a specialist in arrythmia and electrophysiologist, which is fine as I have Paroxsymal Afib too and she has done an ablation for that for me which has worked.
She or rather her nurse did an echo in 2020 that noticed a bulge, and she sent me to get an MRI that showed the LVOT and SAM and the less than stellar EF. (All stuff I have only just seen having pulled my own records).
She was convinced it was full HCM, and told me it 95% certain to be.
I was sent for genetic testing, but also did some reasearch and noted a centre of excellence (UK version) with a world leading HCM doctor in a nearby hosptial so asked to be seen for HCM there.
She obliged and I was referred.
I had 2 echos in the centre of excellence. Neither showed any interaction with the mitral valve from an HCM perspectie(although there are other valve issues, and dystolic dysfunction too now I see).
Dr Hugh Watkins (one of the world leaders in HCM I would say) saw me , and had my echo up on screen and showed me the valves where fine. (that day). I felt great that day just to add.
He was happy that there was no risk. Felt the picture he saw did not match the symptoms, and was happy to discharge me. He did not rule out HOCM.
Hence back to my home cardiologist. Who is peeved that no rule waas made on HOCM, as I have since had a strange rythm collapse, when my chest felt all rubbery an jiggery like multiple palpatations and my legs buckled for which I am getting a loop recorder.
I have found this forum, as I am i the comfortable position (relatively) to be able to progress questions privately as well as with the NHS (In the UK) so I am seeing a consultant cardiologist at another hospital this week for this, specifically to understand how the echo's can return "healthy" results but the MRI clearly does not. Hes a image specialist, so I am hoping for a bit of traction to move forwards.
Its frustrating, painful, and like you, in my heart I know its my heart. As my GP says, what else could it be, as he sighs and writes another letter.
Thanks for sharing, its given me a bit of confidence that taking this private in part for a diagnosis isnt a bad idea. Even if just knowing wont solve it, it will give me a bit of closure into the "Why the hell am I deteriorating like this" question. Hopefully......