svc narrowing

Well I am quite upset as I am sitting in the hospital with svc syndrome. CT scan shows a narrowing. I am waiting to hear from the EP doc as to where exactly the narrowing is. I have been having significant sympoms including nose bleeds, pressure in neck and head, swelling of arms neck and face, as well as significant blueness from heart level up. Inga, I know you have had this, is there anyone else here that has had this? If so what did they do to fix it? The cause is unknown at this time but it is likely caused by 2 SA node ablations in 6 months. I also have a permanent IV catheter that goes to my heart so it also takes up space in the SVC. They are planning on running more tests to determine what they will do to fix it.

4 Comments

worrying

by sam78 - 2013-05-28 07:05:22

yeah needless to say tracey, i am scared shitless!

Oh no :(

by golden_snitch - 2013-05-28 09:05:16

Hi Sam,
I am very sorry to hear that it in fact turned out to be a SVC syndrome :( You know my story, and Bryna's and Amanda's, so you know that we all underwent surgery to fix it. A stent is no option with pacemaker leads in the SVC - well, I'm sure you'll find it doctor who'll do it despite the leads, but that's very risky and definitely no longterm solution. Also, I was told balloon dilatation could result in rupture of the SVC, and that this risk was pretty high. If the cause are the SA node ablations, then just removing the leads won't help much either; if the leads and the IV are the cause, removal might be an option. Also, blood thinning drugs could help some. I have been on something like Warfarin ever since I developed significant subclavian and innominate vein stenosis two years after my SVC syndrome, and it has helped to prevent worse.

Thinking of you & keeping my fingers crossed that your EP will show up soon with some good ideas how to manage this.

Inga

Add

by golden_snitch - 2013-05-28 09:05:32

Please feel free to share the paper I sent you with your EP & his team, it might be of help to determine what to do. Also, my surgeon said what he found when he opened me up looked very much like what he'd seen on the CT images; I also had had a venography, but he said the CT provided the better pictures.
Inga

oh no!

by Tracey_E - 2013-05-28 12:05:31

Ok, now I get your fb post. Hugs for you.

You know you're wired when...

You run like the bionic man.

Member Quotes

I am a 58 year old woman, race cars, ski at 13,000+ feet, work out daily, have become a second-degree black-belt in Karate, run a business - no limitations.