Lead induced SVC obstruction and lead fractures

Hi All

So happy to have found this site.

I had my first pacemaker inserted in 1997, inserted age 18 after years of extensive testing that resulted in Neurocardiogenic Syncope diagnosis. I was a dancer but unfortunately pacemaker and drug therapy wasn't enough to be able to continue that profession. I became quite unwell in 2000 and they discovered lead fracture that required replacement. They anticipated removing fractured lead and threading new lead. During surgery this wasn't an option as existing leads where stuck by scar tissue. They then relocated pacemaker to right side and threaded two new leads, now equaling four. In 2003 I became unwell again and after being rushed to hospital with swelling in face and neck, palpitations and very fast heart rate they discovered that more scar tissue had formed around leads and caused SVC obstruction. I had been quite unwell for awhile, turning blue in face when leaning forward and lying prone/supine and eventually caused extreme upper body and face oedma. After trying angioplasty and stents to open vein unsuccessfully I had to have open heart surgery to do an SVC repair, essentially like a bypass but they used a synthetic patch to reconstruct vein and implant new pacemaker and epicardial leads. I am very aware of pacing now with these and feel I have never got back to the fitness and wellbeing I had prior to this. I have been quite unwell again in last 18mnths and they have discovered I have again fractured part of one of my bipolar leads as well as having a suspected connective tissue disorder. They have reprogrammed lead it to Unipolar. I am due to have battery replacement Dec 22, my fourth pacemaker surgery in 14 years. Lead replacement if necessary will require open up of chest again which they are keen to avoid due to all my complications in past. My cardiologist tells me I am extremely unlucky and hasn't known any of his patients to fracture two leads and only one other patient since me to have SVC obstruction. I have joined this site to see if that is actually the case.

2 Comments

Thanks for feedback

by Keryn - 2011-11-30 02:11:08

Thank you Craig and Inga. Just so happy to find people with similar experiences and/or knowledge. Appreciate you taking time to reply. Makes you feel not quite so alone.
I forgot to mention that I also have a chronically occuled brachiocephalic vein on left from initial implant but it has created its own small bypass. I can still be very prone to that oedema 'pressure' feeling in upper body and at times can still have difficulty saying supine, prone or bending forward. Combining that with SVC reconstruction Cardiologist thought maybe the flow through SVC repair not as efficient as original vein and I'm sensitive to that perhaps? During SVC repair they were unable to get out one of the leads in heart so I also have that still there, albeit cut off as to remove rest of lead. Has caused some small scarring on heart I believe.
I too have recently heard of cancer patients with SVCS from a new Consultant Physician I am seeing. Iwas initially on Warfarin but have been on aspirin since surgery in 2003. I have never been the same since that surgery and Physician thinks I have a Salicylate allergy and blood clotting disorder (Hughes Syndrome related to connective tissue disorder) so now on Clopidogrel.
I will certainly enquire about lead storage Craig. Thanks for tip!
Inga, do you find you are aware of pacing now with epicardial leads? My Cardiologist (in Brisbane, Australia) has recently turned voltage down so at least don't get constant pectorial stimulation and arm twitch every time it pacers but I can still be aware of gripping in chest/oesophegus.

Had SVCS

by golden_snitch - 2011-11-30 12:11:49

Hi!

I have had Superior Vena Cava Syndrome back in 2003. In my case the pacer lead - at that time I only had a pacer lead in my right atrium - was not the cause, but scar excessive scar tissue from my previous sinus node ablations. Underwent open-heart to reconstruct the SVC with a pericard patch. Had a right lateral mini-thoracotomy for that, and another incision in my right groin. Like in your case, my SVC was not bypassed with an artificial graft, but the obstructed vein was opened up and reconstructed with this patch.
I was told that they had seen SVCS before in patients with (multiple) pacer leads or with a port for chemotherapy or in patients with large tumors pressing on the SVC. But of patients like me, with this different cause, they had only heard; very rare complication of ablations.
By the way, the pacer lead was left in the reconstructed vein and worked well for another seven years, not causing any obstruction (at least not in the SVC, only in the left innominate and subclavian vein). I have, however, been on Warfarin ever since 2005.

In 2008 I needed an upgrade to a dual-chamber pacer, and since my cardio-thoracic surgeon said that he would not support putting another pacer lead in that reconstructed vein, I had epicardial leads placed. Yes, it was open-chest surgery, but it was minimal-invasive using a small incision below my left breast, between two ribs. No cardio-pulmonary bypass needed. Took about one and a half hours. Was much tougher than a normal pacer surgery, but did not get anywhere close to the big open-heart with bypass.

That's my story. A little different than yours, but you'll surely not find many patients who have had SVCS and have epicardial leads.

Good luck, hope they don't need to replace your leads!
Inga

You know you're wired when...

Intel inside is your motto.

Member Quotes

I am very happy with mine. I am in the best shape of my life. I lift weights, compete, bike, golf and swim.