Moved leads

I have 25 year old abandended leads on my left side and my current pacer on the right with two more leads. I have been having symptoms for years now and finally this year I decided to pay double for better health insurance for two reasons:

1. I am due for a new generator in a few months

2. try to figure out what's causing my symptoms (when bending or exerting myself I get: facial flushing, feeling of fullness/pressure in my head and neck, distention of my left jugular vein, shortness of breath and at times dizziness and/or light headed)

 

well it's been a busy year with doctors and tests so far trying to navigate and advocate for myself. Thankfully I have lots of nurses in my family (granted they are on the east coast; me on the west)

got my cat scan with contrast results today (assuming I'll hear from the doctor come Monday)

IMPRESSION:

Unidirectional narrowing of right subclavian vein to 6 mm of uncertain clinical significance given the perpendicular diameter measures 15 mm.

One of the 2 abandoned lead wires on the left may enter left subclavian vein and then exit subclavian vein and reenter the brachiocephalic vein, versus artifactual appearance from incomplete filling and distention of the vein.

Venogram under fluoroscopy may help further evaluate if clinically indicated.

Electronically Signed by: James Cowan, MD

 

has anyone ever dealt with abandoned  pacer leads that go in and out of your vein??

or narrowing or your veins?

This is a lot and I'm still not set with a general cardiologist I have an appointment early April with an EP at UCSF for a second opinion (before I knew these results) really just hoping to get in and have them possibly do my next generator change.

 

any advice?

 Thanks in advance,

Amy 

1 Comments

Just a few thoughts

by Gemita - 2023-03-05 05:40:23

Amy, although I haven’t dealt with a device change, I can relate to some of the symptoms you describe on bending forward/over:  the flushing, the feeling of fullness/pressure in the head and neck, the distention of neck veins, the shortness of breath, the dizziness and/or light headedness.  

In my case my symptoms were initially due to the onset of Atrial Fibrillation (AF), an irregular arrhythmia, which caused blood flow surges to my head and felt like I was having a mini stroke. I was told with an arrhythmia as irregular as AF, blood circulation can be sub optimal and any positional changes, like bending over could cause worsening symptoms similar to those you describe.  Of course there are many potential causes for the chronic symptoms you describe, some will be more serious than others, but they do need to be properly assessed, even after all these years!

I can also confirm that I had trauma/partial blockage of my subclavian vein following my dual lead pacemaker implant in 2018.  This resulted in pressure pain across my collar bone going into my left upper arm, left side of neck.  It was fairly uncomfortable for several months until I eventually developed collateral veins which is nature’s way of bypassing any obstruction to help keep our blood flowing.  My pain has gone but I am left with a vast network of ugly purple veins, left chest/upper left arm.

Looking at your scan results, they are certainly not conclusive.  The  recommendation of a venogram might be a good one and would certainly help you and your doctor to decide on how to best move forward.   Based on your symptoms, I would want to find an EP or surgeon that I could trust and with plenty of experience, to give sound advice on how best to deal with your abandoned leads and with any damaged or partially blocked veins.  Perhaps this might include advice on medication (anticoagulation) to help clear any blockages too?  In view of your ongoing symptoms, I would want a venogram to look more closely at the condition of your veins. I hope you find someone you can trust at UCSF and that you can finally get relief from your "chronic" symptoms

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