Superior Vena Cava Syndrome

I was diagnosed with Superior Vena Cava (SVC) Syndrome on Friday. This is due excessive scar tissue because of multiple ablations and my pacemaker leads.

There are four doctors working on my case, trying to figure out the best way to correct this problem. At first there were three options given to me...some that would require lead extraction, and some that would require open heart sugery.

I got a call from my doctor today. It has been decided that before more drastic measures are taken, they would like to try and balloon the vein. This will be done within the next few weeks.

I am a little concerned about the ballooning being done with my pacemaker leads. Has anyone ever had angioplasty done within the same vein as the leads? Does anyone have any experiance with SVC Syndrome?

Thanks,
Amanda

3 Comments

Wow...

by Pookie - 2009-07-20 09:07:13

Hi Amanda.

This is just my opinion, but the ballooning sounds less evasive to me. How long do you actually have to make this decision?

I really hope that this is the answer. I can truly appreciate going thru so much with so many doctors, that after awhile my head spun...does yours? But at the same time, we learn so much.

I wish you all the best.

Pookie

Decision

by scadnama - 2009-07-20 09:07:14

My doctors made the decision to try the ballooning first. The procedure will probably be in about 2 weeks, but I don't have a date yet.

If the ballooning is unsuccessful, then we will proceed with another option. We will just have to wait and see how things look once inside.

I am still having a hard time wrapping my head around this, but am very grateful to have found a great team of doctors who are working hard on my behalf.

Amanda

had superior vena cava syndrome

by golden_snitch - 2009-07-21 03:07:25

hi!

i have had superior vena cava syndrome due to excessive scar tissue after four sinus node ablations. i also have a pacer lead in this vein, but my doctors were of the opinion that the lead was not the problem. and actually, since open-heart surgery to reconstruct the svc/right atrium there are no blockages in the vein, even though the pacer lead is still in.

ballooning is no option with pacer leads in the vein. my doctors said i would always find someone willing to do it, but it's really risky. in most cases the tissue of the vein is already inflammed when the svc syndrom is diagnosed and when you try to balloon it, it will "break". also, the pacer lead will be pressed against the wall of the vein and that might cause additional damage.

i underwent open heart surgery with a minimal invasive approach (right-lateral mini-thoracotomy). it worked very well for me. it was done in 2003 and the vein is still ok, no more problems.

you can ask your cardio to contact my ep specialist, he's world-wide known:
Prof. Dr. Karl-Heinz Kuck, Asklepios Clinic St. Georg, Hamburg, Germany.
My surgeon was Prof. Dr. Friedrich-Wilhelm Mohr, Heart Centre, Leipzig, Germany (I'm German).
Cases like ours are rare, there are hardly any case studies.

best wishes,
inga

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