Never a dull moment...

Some of you might remember me, I posted a while back when I was expecting a PM, however during the ablation (my fifth) the EP was able to slow my rate enough without putting me into a junctional rhythm, which they totally expected to happen.

The EP also mentioned that he noticed some narrowing in my veins (superior vena cava syndrome) and that I should have a transesophageal echo in a few months to determine the degree of narrowing. I then started to become very symptomatic from the SVC syndrome; I can no longer lay down, the blood simple stops flowing in my vein if I am not sitting upright.

I had a CT scan which showed two areas in my SVC that were narrowed about 70%. It also showed an 8mm mass in my right atrium.

The Doctors are a being very cautious in regards to treating this. They keep saying it is a known complication, but a pretty rare one. They know that something has to be done but are trying to get the most diagnostic tests done as possible. I will have an angiogram sometime next week, performed by a vascular surgeon, to determine where precisely the block is and how bad. Then my EP will step in to enter the atrium (the vascular guy can not legally enter the atrium) to determine if the mass inside my atrium is compromising blood flow.

The vascular surgeon said that he does not want to put in a stent or do an angioplasty because that would certainly not be a permanent fix. He said that it would be best to go the surgical route, perhaps grafting in a vein from my leg into the areas that are narrowed, and maybe cutting out the mass and sewing the atrium back up, or just leaving it, depending on what the angiogram shows.

And to top it all off.... I HAVE STARTED TO GO INTO JUNCTIONAL RHYTHMS!!

It started last week, I am sure you all know the symptoms, the first time scared the living day lights out of me and lasted 4 hours. The longest pause caught on my wireless monitor was over 3 seconds long. They have been happening all day long now for the past 3 days.

So this complicates the possible surgery I will be having for the SVC syndrome. If/when I have this surgery they will be putting in a pacemaker, but the leads will have to be on the outside of my heart.

Does anyone have leads on the outside of their heart? What does that mean for long term follow up/lead replacements/battery replacements?

In regards to the junction rhythm... at what point does this become an emergency? Coupled with they symptoms I feel with the SVC syndrome... I feel like poop. The episodes scare me, it feels like I am just waiting to pass out.

I am so darn sick and tired of all of this. I am just ready to feel normal! Heck, I would settle for slightly alright at this point, anything but scared.

Thanks in advance for any advice, and thanks for being there:-)

3 Comments

Wow

by Pookie - 2010-07-18 10:07:43

You sure as heck have been through the ringer. I am so sorry.

The only advice I can give you is to believe that things will be okay.

I know you are scared, I was too when I first developed Junctional Rhythm.

You sound SO much like me when you are to the point where you say you will settle for "slightly all right"...I felt the same for many years, but I always believed that the day would come that I would get better - I'm only half way there now, but I'll take it!!!!!!!

Your doctors seem to be right on top of everything, so you must feel good about that.

I guess we all get scared when we don't have any control and we also get scared when we don't know the future. It's not fun, but unfortunately, it's part of life.

I know I have been scared A LOT during the last 5 years but somehow I got through it and so will you!!!!!!

I truly wish you all the best.

Pookie

Scared

by sputnick - 2010-07-19 09:07:11

So very sorry to hear about all that you are going through. I hope you are soon going to get the right treatment to make you feel well again. Keep us informed on how you are doing, I am sure they will get you fixed up soon. I will be thinking of you best wishes Jan

surgery

by golden_snitch - 2010-07-20 02:07:09

Hey Bryna,

I was just about sending you a private message and ask how you are doing when you posted here. I do have two epicardial leads, got them not during superior vena cava reconstruction but five years later. At the time I had the reconstruction my transvenous atrial lead I got back in 2001 was working very well and it could stay in place. However, in 2008 I developed heart blocks and needed an upgrade to a dual-chamber pacer so they put in an epicardial ventricular lead, and an epicardial atrial just in case the transvenous fails somehow. Usually leads last up to around 15-20 years but, of course, when epicardial leads not to be replaced surgeon needs to do a so-called mini-thoracotomy again - it's more invasive than the normal pacer surgery.

About SVC surgery: Ask the surgeon about reconstructing the SVC with a pericard patch. That is what was done in my case, and I never had any problems/complications from that afterwards. My surgeon was able to perform this surgery doing a mini-thoracotomy using an incision below my right breast instead of opening up my sternum. I was on cardiac bypass for two hours, though, but at least I don't have that huge scar that takes so long to heal nicely. Amanda had a graft put in, and has ever since problems with pericardial effusion.

Keeping you in my thoughts! Big hug,
Inga

You know you're wired when...

Friends call you the bionic woman.

Member Quotes

It may be the first time we've felt a normal heart rhythm in a long time, so of course it seems too fast and too strong.