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HOCM w/SAM
Hi. I was just diagnosed with HOCM with SAM and even though I could read things about this diagnosis on the web or information from my doctor, I'm really looking for others who are now considering surgery or were post-surgery (including the ablation procedure).
I'm kinda shocked because I've been with a top cardiologist in my area for over 8 years and had numerous tests including many echocardiograms and he never ever saw or told me that I have this condition. Even though I had the signs and symptoms for years which are disabling, he only said I'm stresses myself out, I ask too many questions, doesn't know why I have SOB, even when my heart rate is 35 he says I'm fine, basically gas-lighting me.
I finally changed cardiologist and he did one echocardiogram and I have severe HOCM.... No wonder why I'm feeling horrible every day, year after year.
Does anybody have/had similar issues trying to get diagnosed? I've had left and right angiograms and TEE and now waiting for a cardiac MRI to figure out if I'll have open heart surgery or the ablation procedure.
Any comments or stories would be appreciated. Thanks!
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Mrsbubbles,
I had alcohol septal ablation for my HOCM. I certainly would not want open heart. I've had 6 heart surgeries and never had my chest cracked.
Jim
Hi Jim, wow 6 surgeries. I'm really waiting for the MRI to get the complete picture and I also hope that I can get that ablation procedure. I've had 2 heart attacks, AFib and a stroke and now with this (undiagnosed for years) HOCM my body is so tired I can't do anything really.
Jim, did the ablation procedure help you to get back to a livable life?
Hi @mrsbubbles , what a frustrating process for you. I can't say anything helpful about surgery or ablation, but I too had more than 15 years of missed diagnoses and misdiagnoses. At one point I have several doctors agreeing that it was HCM, and when I was sent for a cardiac MRI, the HCM specialist said nope. Several years later a local cardiologist took one look at an echo reading and said "Baloney! Textbook oHCM." He put me on Camzyos - which is ONLY used for oHCM - and everything (that is, EVERYTHING) cleared up in 12 days. Clearly he was right If you have time to look up my 842 other posts on the HCM and Camzyos conversation, you can get, as Paul Harvey would have said ... "the rest of the story." Hang in there. Now that you have someone listening to you, it sounds like you're on the right path. And for what it's worth, I'm FAR from being an expert but with a heart rate of 35, you're "fine"???? Check out what many reliable sources, including the Mayo Clinic have to say about Bradycardia (https://www.mayoclinic.org/diseases-conditions/bradycardia/symptoms-causes/syc-20355474.)
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1 ReactionI was diagnosed with HOCM when I was 76. Many cardiologists throughout my life and many incorrect diagnoses. My current doctor, who is pretty young, went to a conference and learned that the way they were taught to diagnose hcm in medical school was wrong. She was so apologetic. She sent me to a COE where I was put on Camzyos. It completely removed the obstruction. I still have cardiomyopathy and have limitation but it is much better
Good luck
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1 Reaction@dbruskin thank you for your story.
I don't know if I can get any medication to help me because the obstruction is so severe. On the echocardiograms the LVOT valsalva technique it's over 200mmhg. My old and new cardiologists have been practicing their craft for 30+ years. I can't understand how one cardiologist has many many echocardiograms on my heart and doesn't think there was a problem. The new cardiologist took one echo and saw it immediately. Then I was referred to a surgeon.
I just want to get this corrected so I can do things like vacuuming lol, laundry 😂, walking from room to room without pain and breathlessness, walking my doggie for more than 5 min. etc......
Thank you for your reply !!
I was diagnosed last July w/ HOCM and SAM. Had a septal myectomy at a COE in September. Was “fixed” immediately, but had a somewhat rough 9 week recovery. For me, it was well worth it. (I have posted about my decision tree in other threads.)
Hello @mrsbubbles, and welcome to Mayo Clinic Connect.
That's quite a story you've shared, and sadly it is familiar to many other people with HOCM.
Here's link to Mayo Clinic's Hypertrophic Cardiomyopathy information, there may be something there you have not yet read about:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Since you are new here, there are thousands of posts in our little HCM group loaded with story after story, similar to yours. My story is similar, so I can identify. By the time I got to the Mayo Clinic my HOCM was severe, and open heart surgery was the recommendation. I had been misdiagnosed with four or five different heart conditions over about 4 years...none of which I had.
I can share with you you I felt like I had left the planet and gone to another universe when I sat in the patient chair and heard those words. Shock. Disbelief. Fear. Something beyond Fear. More fear.
If I could tell you one piece of advice it would be this: Find a Center of Excellence and get a second, third or even fourth opinion. The Mayo Clinic is the world's leading expert on HCM and HOCM. I live on the other side of the County from Minnesota, and had to travel to get there. But I will never regret going there. At last I was able to find the answers to years of symptoms chalked up to something it was not.
It was both terrifying and a relief.
Here is another link to an organization that also has listed COE's by State:
https://www.4hcm.org/
It's only normal to be afraid and confused. I bet each one of us were when first diagnosed. Take some time to learn as much as you can about what is living inside your chest. This will help you help the cardiologist and you will be able to make informed decisions about your future care.
Camzyos and the latest drug, aficamten, work for some like a miracle, and others not so much. Each one of us is unique and what works for some may not work for you. Only you and your cardiologist can make that determinaiton.
When is your next appointment?
Have you got a list of questions?