How long have you been symptoms free after myectomy ?

Posted by vialox @vialox, Apr 1, 2017

Planning to have SM surgery I am wondering what to expect in long term.
Are the symptoms going to be back?
Is the septum muscle going to grow again?
The papers that I found on this subject gave some information, but I'd rather to hear real stories.
Are anybody out there who went through SM 10, 15, 20 years ago? What are their stories?
Thank you.

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

Jamie Olson | @jamienolson | Apr 2, 2017

Hello @vialox! Thank you for posting here. The best thing about Mayo Clinic Connect is that we get to learn from each other and you have asked some fabulous questions.

Here is a link to a discussion that I hope you find helpful from Dr. Schaff in Rochester Mayo Clinic where he discusses Septal Myectomy http://mayocl.in/2nPINwn.
You may also find this link helpful to learn from reading some posts about recovery on Septal Myectomy - http://mayocl.in/2fdCxHz

I would also like to connect you with members @lisa7, @pbo2016, @rushtonrocks, @daisygirl and @ninimurphy- all members who have experienced Septal Myectomy.

@vialox, when were you diagnosed and how have you been dealing with symptoms thus far?

vialox | @vialox | Apr 9, 2017

Did you notice any change in blood pressure after septal myectomy?

Ron Petrovich | @ronaldpetrovich | Apr 12, 2017

Mine has been a year and a half. I asked my surgeon the same thing prior to surgery and he said in recent years they are cutting more of the septum and I was told, there is basically no chance of recurrence. Full disclosure, I am also an employee at Mayo, in Public Affairs, and if you are in Rochester and want to meet in person, please send me a message and we can try to connect. The procedure for me has changed my life. I feel amazing!! The first few days are really hard and rehab takes a commitment, but it was all worth it.

Ron Petrovich | @ronaldpetrovich | Apr 12, 2017

In reply to @vialox "Did you notice any change in blood pressure after septal myectomy?" + (show)

My blood pressure is now lower, possibly because I have lost weight, but the heart is not working as hard either. I take 25 mg of metropolol a day now to keep the heart rate down.

vialox | @vialox | Apr 13, 2017

In reply to @ronaldpetrovich "Mine has been a year and a half. I asked my surgeon the same thing prior..." + (show)

@ronaldpetrovich,
thank you for response, - really helpful information. I am in a process now to send all my tests to Mayo. Last few years symptoms dynamic made me thinking about SM more often. Planning to have one done very soon.

Cynaburst, Alumna Mentor | @cynaburst | Apr 18, 2017

I had my septal myectomy at Mayo 11 years ago. I have not had any recurrence of my obstruction. Though I have had to continue to take various medications, my symptoms are still vastly improved.

I wrote a blog about my Mayo myectomy you may want to check out:

http://www.cynthiassummeradventure.blogspot.com

Also, I have created a new blog about HCM with resources for those undergoing myectomy. You can find that at:
https://hcmbeat.com/resources/resources-for-patients-about-myectomy/
Wishing you all the best.

vialox | @vialox | Apr 18, 2017

In reply to @cynaburst "I had my septal myectomy at Mayo 11 years ago. I have not had any recurrence..." + (show)

@cynaburst, thank you for link. You have excellent blog and links to the sources. Your experience is inspiring too.

Cynaburst, Alumna Mentor | @cynaburst | Apr 18, 2017

@vialox - you are so very welcome. Please let me know if I can answer any other questions or be of further assistance. Best of luck with your journey.