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HCM getting worse?

Hypertrophic Cardiomyopathy (HCM) | Last Active: Dec 31, 2025 | Replies (30)

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Profile picture for Debra, Volunteer Mentor @karukgirl

Hi @leenag,
Welcome to Mayo Clinic Connect. You posted in the HCM group, so I am going to assume that you have this condition?

Our little support group has many members who have had open heart surgery, specifically a septal myectomy, to reduce the amount of tissue which causes the LVOT obstruction, and thereby reduces the symptoms of HOCM, the obstructed version of HCM.
There are the apical HCM/HOCM people too, and they have a whole unique set of circumstances they have to deal with.

Here are a couple of links to check out for more detailed information:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
https://www.mayoclinicproceedings.org/article/S0025-6196(24)00357-4/fulltext
And here is one from a source outside the Mayo Clinic that many others find useful:
https://www.4hcm.org/
Each one of us is different, and each one of us that had open heart surgery, or are planning to have it, have gone through lots of testing and studies that concluded with the physician making the recommendation for open heart surgery.
Different protocols from different facilities are in place as well.

Again, no two are alike, but we all have much in common.
Medications such as beta or calcium channel blockers may be tried for symptom relief, and the newer drug Camzyos may be suggested as well.

Do you have an HCM expert that you are seeing currently?
How long have you known you have this diagnosis?
Are you otherwise healthy?

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Replies to "Hi @leenag, Welcome to Mayo Clinic Connect. You posted in the HCM group, so I am..."

@karukgirl
Thank you so much for responding.
I have been diagnosed for about 13+ years as an adult. I am 67 now. I became symptomatic about two years ago getting SOB every 30-40 steps. Soon after I developed Afib. I do no have the obstructive kind. The septal thickness is 2.3 cms. I am now having to manage both afib and HCM and its been challenging. I am having my second ablation tomorrow and hoping it works better this time. Not sure how thick it has to get before surgery is contemplated …..I realize there are other factors also of gradient and scar burden which is 7% ( MRI last week)
I am consulting and under the care at the COE in Houston. HOuston Methodist Hospital. Is there a need to get my case evaluated by experts at Mayo? Any input would be appreciated. I am a member of the HCM society.