HCM getting worse?

I see that couple of you have had open heart surgery, at what point was that recommended and what was actually done, to reduce the symptoms. Any detail would be appreciated.

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?

@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.

@leenag
It seems like you are having a really tough time. We are the same age and I have very few symptoms after my open heart surgery 5 years ago.
I would suggest to you that it would not hurt to be seen at the Mayo Clinic in Rochester.
They are the leading experts in the treatment of HOCM/HCM.
Here is a link to refer yourself:
http://mayocl.in/1mtmR63
It is vitally important that you understand your condition and that whomever you choose for your care team is on top of your condition.
A COE may be great in many things, but are they great in HCM?
I went to two different COEs. One in my home state (CA) and Mayo in MN.
I also went to the hospital I worked for at the time.
It was not until I was at the Mayo Clinic all became so very clear.
This is your only life and you need to go where you feel the most confident, and that may be out of your comfort zone and zip code!
I would not hesitate to get a second or third or even fourth opinion! You need to take care of you!!

@whidbey so glad you are feeling great. If you don’t mind me asking, did your insurance help pay for Camzyos? I have Cigna and they refuse to help, they say it’s pre existing condition and that means I have a family history???? I don’t know o e single person in my entire family who ever had this! I don’t know what to do now.

I was at the MAYO clinic for my yearly appointment when you emailed me. So sorry for the late response. Yes, my insurance, Blue Cross Blue Shield, does pay for part of my Camzyos. I am also in the REMS program through the drug company and they pay for part of it, too. Has your Cardiologist talked to you about Camzyos and how it can be covered? I find the staff at my cardilogist very knowledgeable about the funding issue. I have been a patient at University of Washington Heart Institute and now at Mayo clinic. Where are you located? By the way, when i moved from Washington to Arizona, I was informed that it was a good thing I had Blue Cross Blue Shield and not United Health Care since it is not widely accepted here. Have you found that Cigna is that way where you live? The reason I say this is Camzyos has changed my life. We pay for insurance privately so I can be covered for Camzyos because of my quality of life. It is a huge sacrifice for sure.

( Have you had the genetic testing to prove whether or not this is a pre existing condition? Just curious. I had the genetic testing and it wasn't proven this was genetic, however, my cardiologist explained that they only currently can test at a certain level and will soon have the ability to test on a "deeper" level)

@cash298
I just responded to your post, but am not sure I linked it correctly, so if you don't see a response, look below this post?!

@mpjg Thank you for words, they are encouraging, I am sure my card team here in Louisville do not have experience with this, so I am scheduled in Cleveland in March, even if I feel better by then on Camzyos I am going for the whole workup there. I just found out I also have "severe left atrial dilation". One cardiologist didn't say a word about it, no one mentioned it until I brought it up to the NP at the Heart Failure Clinic, and she said, oh yeah, that's a completely different condition and it's very serious, and your cardiologist should have taken care of that, another one told me, yeah that's cause by the HOCM with SAM and it should have been addressed as well..... ugh, I feel like I am having to do everything myself for them. They don't have the experience here. I just want to start feeling better and stop being told I am at high risk for sudden cardiac death due to the gradient of 214... Im sure time will make things better but today I feel defeated.

@jootzy Camzyos is a new drug and supposedly like a miracle.

@cash298 I found that sometimes you do have to take the lead. I've mentioned elsewhere that the local cardiologist that read my echo (which clearly screamed obstructive hypertrophic cardiomyopathy) in Sept 2023 only recommended another echo in a year despite many moderate to severe findings. Luckily I was concerned and made an appointment with a cardiologist @ Penn Med although I had to wait several months. She took one look at the findings and immediately suspected HCM and referred me to their HCM specialist. Penn Med is a COE and after additional testing, I was started on Camzyos in Aug 2024. Before I was started on Camzyos, the staff discussed different payment pathways and they did all the work. I have had to pay very little for the medication. Take it easy (emotional stress affects my heart), seek the best care, and advocate for yourself.