SVC syndrome and pacemaker syndrome

hi everyone,

i am new to this group. i have learned a lot by just reading a few messages already! you are all so supportive of eachother. i have a recalled guidant defib with pacemaker function turned on. i am almost to ERI.

has anyone ever had SVC syndrome? my complaints are tight, full feeling in neck and face. eyes hurt and i have a constant headache behind my eyes. when i lay down it gets much worse. i get a stuffy nose with it and it gets difficult to swallow. i have been sleeping on an angle for a few months. dr.'s blew me off until just recently when a fellow ordered a venogram. the venogram show occluded innominate vein that is henodynamically significant. the EP now wants to "balloon" it out and/or possibly remove my old capped off lead. this whole thing has me so scared. i am 43, married, mom of 2 young children. i have been learning a lot about this syndrome and pacemaker syndrome.

second question...has anyone had pacemaker syndrome...if so, what are the symptoms? i get the hiccups a lot and have a terrible pressure under my sternum. i get the same pressure feeling in both of my legs. i can't get to sleep because of this pressure. it gets uncomfortable sitting at my computer too because of this pressure. i also feel my heart beat strong in my abdomen at times. my pacing has been on an incline for the last few months. for years i was at 1% and now i am at %15 in one chamber and 12% in the other. they have never needed to change my parameters. my gut is saying this pacer is doing this.

do my complaints sound similiar to any of you?

thank you so much for your help.

God bless,



by bambi - 2007-05-11 04:05:38

Hi Luckyloo,
Did you get my private message?

SVC syndrome

by luckyloo - 2007-05-11 09:05:10

hi bambi,

yes, i just found it. i thought you were going to send one to my yahoo address then i found the private message button :o)

i sent a reply.

thank you,

SVC syndrome

by luckyloo - 2007-05-11 10:05:16

hi bambi,

thank you for replying....i would like to talk to you about this, please email me anytime.

i have all the symptoms of SVC syndrome except the swelling and vein distention which is why i was ignored in the beginning.

SVC syndrome and pacemaker syndrome sure aren't discussed with the patients as possible complications down the road. i know the devices are needed to save their lives but when we complain of these symptoms they need to take us seriously right away. i have read where this is being seen more and more because these devices are now in young people. pacemakers and ICDs used to be for old people only! so now they're seeing all these things happening to the leads over time.

take care,


by bambi - 2007-05-11 12:05:23

Hi luckyloo,

I have had SVC syndrome. I posted a lengthy message about my experience with this. Look under "Complications" on 3/23/07 by Bambi, titled" Hi again".
I will also send you a private message.

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