Hello! I am rather new here, thanks for being here!

Pacemaker syndrome

by Gemita - 2021-04-21 05:48:20

Hello Simon,

There are many folks on this site with a third lead (an upgrade of their dual chamber pacing system with an additional lead to the left ventricle to support both ventricles and to provide hopefully a more natural (synchronised) means of pacing.  Hopefully they will see your message and respond.  Some have had quite an immediate response (benefit) but sometimes CRT (cardiac resynchronisation therapy) can take some time (even up to one year) to show any real benefits.  Success or failure will also depend on your underlying heart condition/other health conditions and whether these can be supported by additional medical treatment and lifestyle changes.  It can be a slow process but there is a lot that can be done to support you.  I see you have been quoted a 40% chance of success from an upgrade of your present pacing system.

Your bio history is empty.  You do not tell us why you have a pacemaker, whether your current diagnosed pacemaker syndrome/symptoms are wholly due to pacing or whether you had some heart failure symptoms before or other conditions which might be causing some of your symptoms?

If you trust your EP, I would guided by his advice or alternatively seek another opinion on all your options before you commit yourself to further intervention.  It could be that adjustments to your settings by a highly experienced, qualified technician from your pacemaker manufacturer is all that is needed to provide relief (if this hasn't already been tried)?  I wish you all the very best and hope your symptoms can be quickly addressed

Pacemaker syndrome

by Aberdeen - 2021-04-21 10:54:44

I had a dual lead pacemaker implanted which caused the left side of my heart to become out of synchronisation with the right side. I had a CRT pacemaker ( third lead added)implanted in May last year and it seems to have helped. My ejection fraction improved dramatically. So I hope you achieve the same result!

Third wire

by Julros - 2021-04-21 11:01:02

Hello, Simon. I am sorry to hear that you are having issues. I have a third wire, but it was inserted at the same time as my pacemaker implantation to pre-empt dyschrony. My baseline ejection fraction is 50%, which is the lower limit of normal, and there is a chance that RV pacing can induce a reduced EF.  It took some time to scar into place, so they left my output setting relatively high so I could feel the impulses for a few months. And now, my belly twitches from time to time. Other than that, I am probably fitter than I've been in years. 

Is your EF reduced? This is often an indication for a third wire, but I also see from Medscape that dual-ventricular pacing may help pacemaker syndrome. https://www.medscape.com/answers/162245-111843/what-is-pacemaker-syndrome

Best of luck to you. Edema and fatigue are awful to endure. To me, the chance of improvement would be worth undergoing the procedure. I don't know if cost is an issue, though. 

Hello! I am rather new here, thanks for being here!

by simonsimon - 2021-04-22 01:15:08

THanks so much for getting back to me!  My EF is 55, I have had three heart surgeries, valve replacements, abdominal aortic aneurysm repair all due to having Marfan syndrom, so yes here are a lot of other isssues :)    The most troublesome at the moment is the fatigue PEM  from the CHF which I am understanding is caused at least in part by the Pacemaker Syndrome. I believe I had an undocumented COVID infection back in Feb/Mar of 2020(no one was testing at that time)  I developed a second degree heart block and my doctor immediately put me in the hospital for  PM insertion. I felt better after that, it corrected the heart blocks but slowly I developed the fatigue shortness of breath and balance issues. I just saw my Cardiologist yesterday and she also wants the third lead placed. I will be speaking with the EP on  May 4 and  decided I should go ahead with the procedure. I will enter my PM information shortly. I really appreciate your responses, I have been feeling quite alone making this decision. 

from latest visit

by simonsimon - 2021-04-22 02:30:45

Right heart failure, pacemaker syndrome

Recommendation was made to consider upgrade to biventricular pacing given symptoms of pacemaker syndrome.

Thank you for the update and for filling in your Bio

by Gemita - 2021-04-22 03:16:21

Dear Simon,

No you are not alone here and we all want to try to help in whatever way we can.

I see you have Marfan syndrome (MFS), a genetic disorder that affects the connective tissue. The most serious complications involve the heart and aorta, with an increased risk of mitral valve prolapse and aortic aneurysm. The lungs, eyes, bones, and the covering of the spinal cord are also commonly affected.  Severity of the symptoms of MFS is variable.

I suffer from Ehlers Danlos Syndrome (EDS) and have been told I also have features of Marfan Syndrome, so I do understand the range of symptoms that we can get.  

I note your ejection fraction (EF) is 55 which is within a normal range (anything under 40 would concern my EP/cardiologist).  I am aware though that we can have a normal EF and still have heart failure (known as heart failure with preserved EF) which you would appear to have? 

I am glad you have decided to go ahead Simon with that third lead and I hope it will quickly help you to overcome your symptoms and to improve your quality of life.  You have everything to gain and nothing to lose from your decision to move ahead.  I wish you lots of luck

Third lead possibility

by simonsimon - 2021-04-22 13:44:07

Thank you Gemita, very encouraging note. Yes EDS is sort of a cousin to Marfan syndrome. "Everything to gain and nothing to lose..." that's what I needed to hear. I get that I am going to be 72 in a few days and have been in pretty fragile health for the past 50 years and maybe I am expecting too much at this point but I am going to go for the third lead. Like they say - nothing ventured nothing gained. My pacemaker is kicking in 100% of the time which is unfathomable, but it is what is keeping me here.

many thanks for all the support!