Septal Myectomy Consideration

I have been taking carvedilol for a couple years now. Had the appt with the NP and she knows I am on it, only heart med I am on, and she was not concerned. I trust my cardiologist in AR with my life. He is the one sending me to the Mayo Clinic for Septal Myomectomy. He is on a Cardiac Board and took my case to them for recommendations. I feel he would not have e on it if he thought it would exasperate my condition. I know each case is different. But I sure hope it has not set me back.. Sharon

Carvedilol is a beta blocker first with known diuretic as well. My local cardeologist put me on it a few years ago and even when i told him that my symptoms have increased he said i needed to stay on it because it helps dialate the vessels so blood can move more easily.
It wasnt till i went to the mayo that i was told carvedelol may have exasperated my condition because HCM patients do not respond well to diuretics.
Which it makes sense if you think about the concept
If you have a bag full of water with a tube hooked up to it and squeeze the bag yku have a pressure resistance, but if you put a bigger hose on the bag and squeeze less pressure resistance.
When they did my stress the noticed my blood pressure was falling the more they stressed my hear!
Now carvedilol may have effected me in that way because i have severe outlet flow obstruction and im pretty active as far as intense exercising

Drugs to avoid in hypertrophic cardiomyopathy

Beta-Blockers to Avoid
Some beta-blockers should be avoided in HCM because they can also cause vasodilation, or dilation of the blood vessels, which can worsen symptoms. Specific beta blockers that should generally be avoided in HCM include carevedilol and labetalol

Im glad its working for you.

Good deal, let us know how it goes!
Best of luck

Really positive appointment today. Had my intake phone appointment with the NP at cardiac surgery at Mayo. We went over all the details, she was able to pull my charts from Kaiser. They are just waiting on the imaging and then will send my case to a surgeon to review and get their opinion based on what they see. If unclear to them, they'll talk to the HOCM clinic at Mayo too. If I need further testing, they'd want me to do so at Mayo Clinic with the specialists and will help me work with Kaiser to explain why I should be seen there. Sounds like they've seen this scenario before and it made me feel so much more at ease knowing that specialists are going to review my chart and give their opinion. It sounds like I'll get a response from Mayo well before both my second opinion and surgical consult within Kaiser.

I’ve been on Camzyos for about a year. Carvedilol for about 3 years.. within a few days Camzyos I seemed to respond well.
My cardiologist said to discontinue carvedilol about 3 months ago, wasn’t feeling quite as good as I had been. Blood pressure went up… my family doctor said I needed carvedilol so I started taking it..
Within the last couple months I’ve felt extremely tired, pressure behind my eyes, fluttering in the chest all around difficulty.
I read your comment brewmasterj..
doc tomorrow to discuss this..
I sure hope this didn’t worsen my HCM.

I would highly recommend that your talking to your cardiologist about any heart related medications! As well as your primary should be in the loop but should not be doing your heart medication intervention
Even my local cardiologist felt i needed carvedelol!
It just shows how much or how little people know about Obstructive HCM
There are other medication's that can be tried with your condition.
If your not talking to Mayo i would recommend it
Good luck and let us know what comes of it

Hi - and welcome. I have a somewhat different story and point of view. I am a 73 year old moderately active female. I just discovered that I have HOCM this year! - due to some breathlessness and a murmur that had never been there before. Medication has been a huge helpt - I feel terrific and can do everything that I want to do (verapamil and jardiance so far, not camzyos). If the condition progresses too much then camzyos would probably be the next thing or septal myectomy. My point of view is that you are very young and there is such rapid advancement in this field that you may never need invasive surgery. So - while I am not a cardiologist it would seem very early to me to make this decision unless symptoms get to the point where they impact your lifestyle a lot. I live in Delaware and my condition was diagnosed here - but then I went to Johns Hopkins which is a COE. They did much more diagnostic work and have a terrific baseline now. Their decision to try the meds that I am on. Jardiance is a medicine for diabetes but it has been found to really help with HOCM symptoms. Of course, it does nothing to ultimately treat the obstruction but neither does camzyos - both treat the symptoms and jardiance is MUCH cheaper. Anyhow, I am only saying all this to say that a COE will be best able to answer your question and suggest the best and most timely treatment trajectory.

Thanks so much for your perspective. This also helps give another side to this. I think my decisions will ultimately come down to what Mayo thinks now before I make any decisions. I don't like being in a holding pattern, but I've become more comfortable with it the last few weeks.

I've watched a few podcasts with Mayo and Cleveland Clinic specialists and there are still some debate on proactive surgery since it's a mechanical issue. It seems to be on a patient by patient basis that those calls are made.

Regardless, I feel good knowing that my "case" is being reviewed by Mayo and that if I don't need surgery, they may refer me to the HOCM clinic there who can dive deeper into my info (and hopefully work with my insurance to get that approved). I'll take the flight and days of testing to get sorted out, that's no problem at all.

My specific issue that my local cardiologist has told me is that my fatigue symptoms from the medication are already at a fairly low dose AND my resting heart rate is low so doesn't give much room for other meds AND the pressure with activity in the "severe" end (70mmHg, although the scan showed over 200mmHg, but he downgraded it for some reason). It apparently doesn't leave much room for other treatments, other than trying Camzyos. I'm not sure of my comfort level with that option yet vs. surgery.

So now I'm very much looking forward to Mayo's assessment since they specialize.

Thanks again for sharing your story. I need a COE to analyze my case and feel better that this is starting to get in their process.

Thats a great point you added! Each person is different and reacts differently to the medications via their activity levels and age!
Yes these medicines do not remove the obstruction but do allow the muscle to relax enough for better blood flow. That being said if your highly active with intense workouts septal myectomy may be the course of action such as my self!
Camzyos has allowed me to get active again but it does have its limits!
Being in 57 and do lots of intense mountain biking, i can put easy mileage in but hills induce my heart heart murmur.
Will be having myectomy in June
Thanks again for everyones input and sharing their experiences

Thank you so much!
I’ll be consulting with Mayo per your recommendation.