8 Months Post Myectomy ~ Some Symptoms Are Back

[Carrie D]

Hi,

I had a septal myectomy for HCM (obstructed) on March 23rd. I also have some diastolic heart failure.

Over the past month or so some of the symptoms that I was experiencing prior to surgery but that were gone after surgery have slowly begun to creep back.
Exhaustion, SOB, angina, heaviness in my chest. It is not as bad as previously ...

Has anyone else had a myectomy with symptoms that returned?

Are these symptoms associated to the heart failure?

I will call to make an appointment with my cardiologist but thought I would ask.

Thanks,
Carrie

[JillC]

Hi Carrie,
There are so many variables that could cause this ..... Did you have your myectomy done at a Center of Excellence? That would be my first question.....Are you on medications that may need adjusted? Are you following your weight and sodium intake to make sure you aren't fluid overloaded? Did you go through cardiac rehab after surgery? Definitely talk to your surgeon and cardiologist. Probably need a repeat echo. I remember my cardiologist saying there is often a " honeymoon period" and then a time of adjustment.......
In my particular case, my first myectomy was done at a local hospital and they did not remove enough tissue and all my symptoms came back.....so had surgery redone at Mayo Clinic..Hoping that isn't the case for you and it is just a temporary set back. Good Luck.

[Carrie D]

Hi Jill,

Thank you for replying

I had my myectomy at the Peter Munk Cardiac Centre at Toronto General Hospital in Canada. The best hospital in Canada, considered a COE. I live in Vancouver, British Columbia, a five hour flight from Toronto.

The only meds I take is Verapamil. Maybe it needs to be adjusted? Yes, I am eating very healthy, do not use salt and have a low sodium intake. I have lost 10lbs since surgery. I am currently half way through the cardiac rehab program. I had initially started in July but had to stop due to a lump that was found in my breast. I had surgery last month to have it removed and have restarted rehab.

I did have a recent echo in October, I haven't heard from my cardiologist. I'm supposed to follow up with him in March, do you think I should try to see him sooner?

How soon after your surgery did your symptoms return?

Thanks again for your reply, I appreciate being able to bounce this off someone who has experienced the same.

Carrie

[JillC]

Hi Carrie .... Yes Toronto is supposed to be very good.
I recommend a step by step approach in sorting through your symptoms with your cardiologist.... here are a couple issues that contributed to recurrence of "symptoms" even after my Good Myectomy:
1) I was anemic.... which made me quite tired. I was prescribed iron supplements by my PCP
2) Cardiac Rehab was too much for me 3 days a week so I reduced to two days a week.... at one point I was so tired I just went back to walking 10 mins a day. Listen to your body... if you are tired rest, don't force too much ... each person is different. Especially having had an extra surgery for your breast lump.... the shocks to your system are tremendous!!! Try taking Rescue Remedy ... Bach Flower to reduce the shock
3) After surgery, my Mayo cardiologist said I might get off Verapamil
... I didn't get off of it but my dose was cut in half. Monitor your heart rate and BP for a few days before you see your cardiologist... maybe your HR or BP are too low.... also make sure you are not in a fib .... check your pulse to see if it's regular have EKG done with cardiologist
4) I had to go off beta blockers they made me so tired I could not get off of the couch.
5) I also had to go off statins.... I didn't realize until I was off of them for 6 weeks that part of my " fatigue" was weakened leg muscles from the statins.

If if it were me, I would keep a log of the symptoms that are troubling you, when they occur what precedes them and what relieves them. Also some HEart rate and Blood pressure readings.
Rehab should have ekg during exercise which is helpful.
and Yes, take all of this to your cardiologist along with a list of questions. I wouldn't wait until March.
You might tell the office your symptoms and see if they want blood work and/or an echo done before your appointment.
Hope this helps.