Has anyone had surgery for Apical Hypertrophic Cardiomyopathy

Posted by dbrima @dbrima, Jun 4, 2024

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?

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Linda, Volunteer Mentor | @walkinggirl | Oct 6 9:33am

In reply to @dbrima "@fletch1950" + (show)

@dbrima @holly1275 Thank you both for your valuable contributions to this discussion, explaining both of your unique experiences is helpful to all of us. ((HUGS))

Please do read my explanation to @fletch1950 (and @annieobee) from a couple of days ago. Please add whatever you think will be helpful to them and/or to others.

annieobee | @annieobee | Oct 9 3:46pm

In reply to @walkinggirl "@annieobee and @fletch1950 Welcome to Mayo Clinic Connect, a forum where you can meet others with..." + (show)

@walkinggirl

@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?

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@walkinggirl
Thank you.
I have felt so alone .
I have echo's MRIs . The works . ( Simple terms ) the ventricle thickening is now over 50% . I get pain if HR goes under 60 or over 100 .
Have seen a surgeon here . No one has done an AHCM operation in australia HCM is done . Hubby is cardiac anaesthetist. So I am fortunate with contacts .

annieobee | @annieobee | Oct 9 3:55pm

In reply to @JustinMcClanahan "Hello @annieobee, I combined your discussion with an existing discussion titled: "Has anyone had surgery for..." + (show)

@JustinMcClanahan i am on a beta blocker and a calcium channel blocker . Started on Ranolazine to see if it will help the chest pain .

I had an ablation for HR around 280 (high atrium ) . This was around the time.of diagnosis of AHCM .

Any suggestions gratefully received

Linda, Volunteer Mentor | @walkinggirl | Oct 9 5:42pm

In reply to @annieobee "@walkinggirl Thank you. I have felt so alone . I have echo's MRIs . The works..." + (show)

@annieobee "I am fortunate with contacts" ((HUG)) I am very relieved that your hubby is in a supporting role, he is a professional in the heart field; that is to your huge advantage. Both you and your husband may know more about your medical situation because of your contacts. It would not surprise me if the medical people caring for you are consulting with colleagues, perhaps around the world, about your needs. You may choose to ask questions and become a participant in determining your own care. What kind of care are other patients with AHCM receiving? What is the next step in your care at this time? No, indeed, you are not alone!

judpuds | @judpuds | Oct 10 7:36am

In reply to @annieobee "@walkinggirl Thank you. I have felt so alone . I have echo's MRIs . The works..." + (show)

@annieobee I have read about the possibility of injecting basically radio waves to shrink the electrical wall. mayo clinic uses it to treat liver cancer.

judpuds | @judpuds | Oct 10 7:40am

In reply to @katiekins "Why didn’t Camzyos work for you if I may ask? It didn’t for me either sadly...." + (show)

@katiekins I am just on it for eight weeks, had my second echocardiogram yesterday. Since starting, I have been so tired and dragging my legs as though they are pulling 300 pounds each I never had that problem on bisoporol.

judpuds | @judpuds | Oct 10 7:42am

In reply to @annieobee "@walkinggirl Thank you. I have felt so alone . I have echo's MRIs . The works..." + (show)

@annieobee sorry for that dicta typo, obviously, ventricle wall, not electric wall!

judpuds | @judpuds | Oct 10 6:00pm

In reply to @judpuds "@annieobee I have read about the possibility of injecting basically radio waves to shrink the electrical..." + (show)

@judpuds sorry , that was “ ventricle wall” not electric wall.

Linda, Volunteer Mentor | @walkinggirl | Oct 10 6:05pm

In reply to @judpuds "@katiekins I am just on it for eight weeks, had my second echocardiogram yesterday. Since starting,..." + (show)

@judpuds @katiekins I am sorry that the promising Camzyos did not/is not work(ing) for you. My cardiologist said and those who have contributed to the discussions on Connect have reported 3 possible outcomes: it's a miracle drug, it does nothing/side effects or it works for a while and then does not work. Reasons? No one seems to know at this point. I have a theory, but we stay away from speculation without supporting facts here on Connect.

@judpuds when you had your echo, were the results favorable? Has your cardiologist suggested that your body (those chemical factories we live in) may eventually adjust? Bisoporol is a beta blocker blood pressure drug while Camzyos is supposed to act on the thickness of the heart wall.

Have your doctors mentioned Myquorzo? Please try to get their opinions about trying that newer drug which is still under study.

I have no experience with either of these drugs, I had a septal myectomy at Mayo in July 2022, Camzyos was still in trial. I was 3 weeks shy of my 76th birthday and not for one single second have I ever regretted taking that step. Please keep in mind that your cardiologists may suggest other options, please also be sure that your care is provided at a COE or from a cardiologist very knowledgeable about HCM.

What are the next steps for you, @judpuds and @katiekins? When are your next appointments?

Linda, Volunteer Mentor | @walkinggirl | Oct 10 6:49pm

In reply to @judpuds "@annieobee I have read about the possibility of injecting basically radio waves to shrink the electrical..." + (show)

@judpuds That's very interesting. Please share the source where you read this. Has it been discussed in the liver cancer discussion on Connect? Yes, I saw you meant ventricle wall.