Pacemaker lead tethered to tricuspid leaflet

Hi, I haven't been on here in ages. 45yo Aussie, 100% PM dependent since my second valve replacement 18 years ago.

I'm on my 3rd generator, but the original leads are still good. Unfortunately one of the leads became tethered to a leaflet of my tricuspid valve at some point early on, and it interferes with the function of the tricuspid valve. As a result I live with heart failure, and after years of being fairly stable the right side of my heart is becoming enlarged.

I have not encountered anyone else with this complication, but I thought I would ask in here. I am an active person, I make pottery and ride horses and maintain an extensive garden. I am finding it hard to maintain good energy levels, but I also wonder how much of that is related to having Covid six months ago, and how much is my recently diagnosed and treated anemia, and how much is perimenopause.

I know I will most likely end up having surgery, but my memories of my two valve replacements in my 20s still haunt me and I am frankly terrified of the prospect of going through it again.

Has anyone else ended up with a tethered lead? How was it resolved, or was it left in situ?


6 Comments

Triscupid valve dysfunction

by Gemita - 2023-10-15 06:30:33

Elcarim, firstly I am so very sorry to hear about your diagnosis and the difficult decision you clearly face.   

I see you have had Covid in the last six months and have been treated for anaemia and that you are wondering whether these problems as well as coming up to the menopause might also be the cause for your poor energy levels.  Having had Covid prior to vaccination, anaemia in the past and having gone through the menopause, I can most definitely say all those conditions can lead to long lasting fatigue and other symptoms.  I feel however that your heart failure is likely to be the main cause for your continuing symptoms and that your triscupid valve dysfunction needs treating to give you the best chance to improve your condition.

May I ask if your doctors have recommended a lead extraction and/or valve repair/replacement?  Lead extraction in experienced hands is getting safer all the time and I suspect valve repair/replacement procedures have also improved since your last replacement 18 years ago.  You are still young and in your shoes, I would be concerned that your heart failure could worsen without timely intervention.

My husband has right sided heart failure due to a number of conditions.  He has triscupid valve regurgitation.  This has caused pressure to rise in his right ventricle which has expanded.  He is much older than you and valve surgery is not recommended at this time. We were told pacemaker lead placement through the tricuspid valve can be associated with leaflet perforation/impingement/dysfunction. When this leads to fibrosis in the triscupid valve, tethering of the leaflet could occur.   I do not know if this is what has happened to you, or what the answer is, but I expect your doctors have studied your condition and advised you of the best way forward?  If you trust and have confidence in their advice I would follow their recommendation to resolve this to try to prevent worsening heart failure.

I wish you all the very best and hope that you will stay in touch

Tricuspid valve and lead problems.

by Selwyn - 2023-10-15 11:34:48

Hello Elcarim,

Sorry to hear of your ongoing problems. Some of them are more easy to sort out medically than others. I would want to know WHY I was anaemic!   Sometimes information here is limited because your Bio information is incomplete.

You may want to see the following:

Anderson JH, McElhinney DB, Aboulhosn J, Zhang Y, Ribichini F, Eicken A, Whisenant B, Jones T, Kornowski R, Dvir Det al. Management and outcomes of transvenous pacing leads in patients undergoing transcatheter tricuspid valve replacement. JACC Cardiovasc Interv. 2020; 13:2012–2020. doi: 10.1016/j.jcin.2020.04.054

Also, if you really want to know what is on offer( reader be warned)  see:

The Clinical Impact of Device Lead–Associated Tricuspid Regurgitation: Need for a Multidisciplinary Approach
Aviral Vij and  Clifford J. Kavinsky
https://doi.org/10.1161/CIRCULATIONAHA.121.055019Circulation. 2022;145:239–24

Clearly, these reviews are more likely to give you a realistic picture than any one individual's experience. 

I certainly have a little tricuspid regurgitation. This is not suprising given a  'wire' passes through the valve leaflets.  The use of trans-oesophageol echocardiography can minimise this. I have to wonder why this is not used routinely given your distressing state of affairs.

You will note that a lot more can be done with the tricuspid valve replacement than by open heart surgery. 

All of the aforementioned needs to be discussed with those hold specialised knowledge.

I do hope you get this fixed sooner rather than later, as remodelling of the right ventricle is not very desirable. See what your cardiologist's advice is. 

 

 

More info...

by elcarim - 2023-10-15 22:06:28

I started a reply and then went off to read the studies listed above and got sidetracked... hopefully I can remember the main points of what I was saying. It seems that tethering is quite common. And tricuspid valve surgery is risky :( .

My GP believes that the anemia was caused by two years of menstruation while on Warfarin. Prior to that I had IUDs for 15 years, which stopped my cycle completely. I had an iron infusion two weeks ago, and while I was not great for the first week my alertness and energy levels have improved over the past days, although I am still quite tired. I will get follow-up blood tests done in another 4 weeks to see how my ferritin is going.

I have a new cardiologist, who has been focused on my pacemaker so far, which I had replaced last July. A few months ago he sent me for an echo (which I hadn't had for nearly two years). My previous cardiologist (now retired) was of the opinion that as long as my measurements remained unchanged, which they did for years, it was better to leave the lead where it was. He put me on a beta blocker (metoprolol) and a new-ish BP/HF drug called Entresto.

I go back to the cardiologist in early January, to discuss my tricuspid valve issues. He has encouraged me to keep exercising as much as I am comfortably able.

Thank you for the additional info

by Gemita - 2023-10-16 03:16:03

Elcarim,

Thank you for the additional information.  Can I ask a few more questions:

Do you happen to know what your ejection fraction is from your last echocardiogram results and were you given any other details about what they saw?  In other words, was there a summary of the main findings on the echocardiogram report, showing size of right ventricle and other heart chambers and degree of triscupid valve dysfunction?    

Lifestyle and medication may help to support your heart and so might synchronised pacing.

What device do you have:  dual chamber or CRT with perhaps a Defibrillator?  Your medical history, device history is empty.

Do you have any arrhythmias, like atrial fibrillation?  Control of any arrhythmia would definitely help to ease heart failure symptoms and to help you to feel better generally.    

I see you are on Metoprolol and Entresto.  Has the dosage of Metoprolol recently increased because beta blockers can make many of us feel extremely tired.  Hopefully your anaemia can be controlled and has been successfully treated?

A big decision I know, so I wish you lots of luck. 

Valve replacement

by Selwyn - 2023-10-16 13:09:31

hello Elcarim,

I am pleased to hear that your anaemia is being treated. It takes some time for iron deficiency replacement to relieve tiredness, as the iron is taken up by the bone marrow to then produce red blood cells ( renewal rate is 0.8% per day of total RBCs) , and muscles contains myoglobin, that gives us strength.  Myoglobin also occurs in the heart, so the functioning of your heart may well improve.  I hope so.

You should also have been screened for eg. bowel/urine bleeding as you cannot assume that your iron deficiency is period related. It is also useful to know that your diet is OK, and you can absorb iron from the first part of your gut.

With regard to your understanable fear of valve replacement, may I say that catheter valve replacement is now available. You could be in and out of hospital in no time with vastly improved valve function. Tricuspid catheter valves are available.  Again this is something to discuss with your cardiologist as this may alleviate some of your anxiety and so  put your mind at rest.

 

Some more answers

by elcarim - 2023-10-16 23:43:55

I'll try to answer your questions Gemita, I'm a bit fluffy-headed at the moment as I aggravated an old back injury this morning and I'm not good with pain.

I didn't get a lot of info about my echo, other than that the right side is enlarged which I assume is a new finding because it has not been mentioned before. The discussion was brief because I was mainly in there for a pacemaker check and he was running about an hour behind schedule, hence wanting me to go back in a couple of months to focus on the valve. I find cardiologists to be pretty tight-lipped. He told me that as long as I am mostly feeling well there is no need for action yet, to give the iron infusion time to work and go from there.

I went in and updated my bio yesterday, but perhaps I didn't press the 'update' button? I have gone in and done it again. I have a dual chamber Medtronic Azure. I have complete heart block on one side, paced at about 15% on the other side.

I get occasional short runs of vfib which I usually don't notice, and I used to get a lot of ectopic beats and was told I was in and out of SVT. Since I got a wearable device to help settle my nervous system the ectopic beats/SVT have almost disappeared. I used to lay awake at night counting ectopic beats which would occur every 3-4 beats and sometimes several in a row. Now I sleep much better.

My medication hasn't been changed since 2020.

I know it's patchy info to go on, but your comments and questions have given me some things to discuss with my cardiologist when I go back. Presumably when the time comes he'll refer me to a surgeon to further explore my options there.

Meanwhile I need to get over this rotten back injury :(

You know you're wired when...

You participate in the Pacer Olympics.

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