Saturday, February 5, 2011

1 outta 2 ain't bad

February 3rd, three weeks later, and I was back in Interventional Radiology. Is it sad that the nurses know me by name? Haven't decided yet. (On a side note, what a lovely bunch of ladies. They all take such good care of me! Keith can do without the small talk but I find it soothing - it's a nice distraction.)

Dr. Montague came in to talk to us before they wheeled me back. I gotta say, I wasn't feeling too hopeful after our conversation. I remained, as always, cautiously optimistic but we all knew that the odds were stacked: my left internal jugular vein was almost completely occluded - save for a small crescent-shaped opening, with a blood clot right above it and my azygous vein was just as bad (minus the clot) AND harder to get to because of its candy cane shape. I had a MRV last week of my pelvis and abdomen so Dr. M could "map out" his approach to my azygous vein. I like to think of my veins as little highways and he was just planning a road trip.

Before I knew it, I was being wheeled back to the suite for venogram #4. I just noticed last time that it's called a suite - I like it. It sounds less sterile and hospital-y - less bedpan/more breakfast in bed.

Here's the awesome part: Propofol. There were a few more people in the room this time- the Anesthesiologist and his assistant. They had their own set of monitors and machines that most likely bleeped and blooped, but I was blissfully unaware of any of that. This is what I remember: "Ok, I'm starting the drug now." I think I blinked 3 times and that was it. I woke up in recovery.

I knew something was up because I kept asking for a collar for my neck (he prescribes them for anyone that gets stents in their jugular veins) but the nurses told me that he didn't order one for me. Crap.

Time seemed immaterial - blame it on the drugs. Then I saw Keith's sweet face. What a relief to see him. I got a little teary when he left the room earlier that day and was so happy to have him close by again.

He did his best to sum up what Dr. M told him after he'd finished up, but it's a lot of information to digest. He did say that he came out to talk to him with a smile on his face, which is always encouraging.  And after a little while longer in recovery, the good doc came to talk to us. So what happened?

Well - no stent in my left IJV. It was just too stubborn, though he tried and tried.
Here's what it looked like:
See all of the veins that look like curling ribbon?  Those are collateral veins that my body created to help accommodate the blood flow not able to get through my jugular.  And at the very bottom, it just stops - that's where the occlusion is.

He also had to balloon the right side again - it had just barely restenosed.  But not bad enough to stent.  Also, he didn't want to stent my "good vein".  In this picture, you can see how gigantic it is from trying to handle all of the blood flow not coming from the left side (that's a big sucker, especially compared to the left side):

Here's some video of my azygous vein before (you can see when the dye is flushed and then it just disappears; that's where the occlusion is):
 And here it is after - the blood flows nicely from end to end:

Does the stent hurt? It's uncomfortable, to be sure.  Let's just say it feels like I walked into a pole and it hit me right in the middle of my chest.  Not unbearable, but I could do without it.  The incisions hurt more than anything else(and they look pretty gross, too. ew). Overall, I'm sure I look like a mess:
  • bruises from IVs, blood draws, and at the incision sites - yes, 2 incisions for two sheaths
  • tummy all bruised from the (now twice daily) Lovenox shots I'm giving myself  
  • sticky goo from all of the heart monitor electrodes and bandage tape in places I can't reach
  • black x's on my feet from where they marked my pulse points with marker (that I can't scrub as hard as I'd like to just yet - it hurts to fold myself in half to reach them)

I'm not quite back to where I was before I went in, so it's hard to say if I'm feeling better.  I mean, six hours under - I'm going to need a little extra time to bounce back.  Dr. M, bless his heart, was so excited that he'd been able to get in and stent my azygous vein.  And how lucky am I for having a doctor that wants to try so hard?

After a few more months of blood thinners, he wants to give the left IJV another go.  It was silly for me to ever think this would be a one time shot.  He also spoke to a vascular surgeon about a venous bypass - which I'll only consider after all other options have been exhausted.

What's left now?  I'm just going to wake up every day, see how I'm feeling and take it from there.  I could obsess but honestly, it's just too exhausting.  I've known about CCSVI since November 2009 and have been seriously investigating treatment since April 2010. I think it's time to take (at least) a month off and concentrate on the rest of my life.

I was hoping to be recovering from two stents instead of just one. BUT one is better than none; how can I complain?

I think God is trying to teach me patience. Though I am a reluctant student, I'll give it a go.


  1. Thanks for posting Susie. You are a strong and brave person and it's people like you that give me hope. - Ivette

  2. Get better, sweet lady! Michelle

  3. I just read of your 4th on FB. Didn't realize you had it already. You sound beat up so give yourself a few weeks to recover.