Sunday, June 19, 2011


Last year on Friday, June 18th I had my first venogram to treat CCSVI.  Exactly one year to the day (Friday, June 17th, 2011) I had my fifth and possibly final venogram to treat CCSVI.

It was originally scheduled for Friday, May 27th but due to an equipment malfunction at the hospital, I was rescheduled for 3 weeks later at another campus-the same campus I was first treated.  After the fact, I realized the significance of the date.  I didn't want to put too much weight on that coincidence, in case that's all it was.  We know where that road leads: disappointment, depression, sad Susie.  But, my little optimistic heart just couldn't ignore it.  Which only led me to where I am today... sad Susie.  I don't like this version of myself.  But I have to let these feelings to peek through - even if for only one day.

There is some sick part of me that actually enjoys checking into a hospital.  It's not like I have some kind of freaky masochist lurking beneath my chipper veneer.  It's the comfort of knowing there's a team of people there just for me - even if only for a few hours.  Doting on me, checking my vitals, offering me empathy and words of encouragement.  I hold on to it because it helps me remember that I'm not trying to figure all of this out by myself.  And as a whole, this past year has been a flashing neon sign reminder of that.  My doctors, my physical therapist, the nurses -everyone- have been awesome.  Let's not forget my husband, friends and family - they're that constant kind of awesome that's easy to take for granted.  But having a doctor say that he will never stop trying, that's a rare kind of commitment and is appreciated more than I could ever adequately commit to words.

On to the details:  IV in, foley catheter in (better safe than sorry, but lawd, it's uncomfortable).  The anesthesiologist stopped in for a visit and let me know that because of where Dr. M was going with the catheter wire (across the veins in the back of my head) they might want to put me completely under so I wouldn't move my head around.  Which would mean a breathing tube and everything.  shit. Then Dr. M came in to visit and fill out an H&P - and now I know that stands for a history and physical.  Just a bunch of questions... and by about 10 am I was back in the radiology suite.  

I remember the anesthesiologist telling me he was going to start the Propofol and then two seconds later (it seemed) I was waking up in recovery.  Thankfully, they didn't have to put me completely under.  No neck brace either, which meant no stent in my left jugular - which was the goal.  The whole point of my visit, in fact.  Then I heard the nurse talking about continuing the Lovenox so I had a spark of a thought that maybe they just hadn't put the brace on yet?  Not sure of what had happened, I dozed off to sleep and waited for some news from Keith who had no doubt already gotten a full report from Dr. M.

Here's what he found:
This is my left internal jugular - see where it's all fat and then just kinds of winds its way into nothing?  And then it's picked up by a collateral vein (that my body created to help accommodate the lack of flow, which I still find amazing).  He tried every which way to get into the occluded portion of the vein but it just wouldn't budge.  As stubborn as me, I guess.

Now, here's where you can see a huge difference (17.54 mm wide).  Here's the right side, which was mild-moderately stenosed at the bottom:

And here it is after he ballooned it:

The good news?  My azygous vein, that was stented in February, is looking good.  There's a little bit of hyperplasia, which is just a build-up of cells in the vein wall - a way of my vein fighting back against the stent, I guess.  But he was able to balloon that and treat a small amount of restenosis he found:

You can see the stent on the left side, it looks like a shadow.  Here's a lil' movie, too, that shows the blood flowing nicely in that vein:

No, it's not all bad.  But the one thing I was hoping to fix is still as bad as it was before.  It's nobody's fault.  I have diseased veins.  I just feel like I'm settling. I want to ask "why?":  Why do others get so better and I've only had marginal improvements?  Why can't we get that open?  Why does 2 outta 3 have to be enough for me?  It's not.  I want more.  

But on the other hand, I wasn't sure how I felt about a stent in my neck.  The recovery would've been longer, and more uncomfortable.  Though I am still recovering.  I have a nagging headache and my neck is sore, all around.  He made sure to double up on the incision with dermabond AND steri-strips so hopefully I won't have the bleeding problems I did last time.  And I'll only be on Lovenox for another week or so then it's down to Plavix or Aspirin.  Maybe Pradaxa istead.  

As the nurse was escorting me to the discharge elevator, I had to stop and use the bathroom.  I heard a conversation outside - and when I opened the door, the nurse said, "There's someone here to see you."  Dr. M had come to talk to me and I almost missed him.  He went through all of the details and though I was still pretty groggy, I remember that he seemed pretty disappointed.   He had to get to another case, so we said goodbye and I was just able to hold back a cry as I spun around and headed in the opposite direction.  I took a deep breath and told myself to keep it together.  I refused to allow that disappointment to sink in like it had before.

So, what now?

I was talking to my mom about it and she said, "Now you can put this all behind you and move on."  Um, no.  It's not like I went through a phase.  I didn't dye my hair pink or date a biker.  I can't just pack up a box, label it "CCSVI", put in the closet and open it up every once in awhile to reminisce.  I have a permanent piece of mesh in my body keeping one of my veins open.  And 3 starclose devices just under my skin at the top of each thigh.  Not to mention a total 5 or 6 incisions.  But let's forget about the physical reminders and talk about how much I've changed as a person the last 18 months.  I've empowered myself with knowledge and the confidence from learning that I can change the way my life plays out because I have a degree of control over my health and how I choose to treat my disease.  

And this probably won't be the last venogram - the stent will have to be checked on every once in awhile. I'll also need to keep close tabs on my symptoms in the event that I may need to be re-plumbed.  There is also talk of venous bypass - major surgery.  When Dr. M was rooting around on Friday he found a vertebral collateral vein that he's sure would be a good vein to use for bypass.  We're going to see how I'm feeling and then possibly set up a consult with a vascular surgeon at St. Joe's to talk about possibilities.

For now, I'm stable.  I've been off of any/all MS disease modifying drugs since July of last year and I'm just a week shy of a one year drug-free remission.  Plus the four years of remission prior to that thanks to Novantrone.  It would seem to me that just diet and angioplasty have been doing the trick. So if I ask myself again: what now?  Stick with the diet, get back to physical therapy as soon as I have the green light, live my life - limitations and all.  I've got to keep moving forward and I will allow myself a glimmer of hope, even if it breaks my heart every once in awhile.  My parents were over last night and my mom told me that people are drawn to me because of this light I have inside - it's got to be hope.  I can't explain it otherwise.


  1. Hooray for Collateral Veins! And being the patient a doctor will never forget, never stop trying to find the right procedure/implant/drug...whatever. xoKristin

  2. I have had MS since 2004. I had tried everything the doctors suggested and I still felt like half of myself. I found I was running out of hope. When I read about CCSVI, I began to hope again for a future where I wasn't tired and could do things again with hands that would cooperate. With my first procedure I had 5 months of an almost MS free life. It was a gift that I didn't take for granted. Month six I got tired again and didn't feel as bad as before angioplasty but I knew something was wrong. At nine months, I had my second CCSVI procedure and it was so much harder than the first. It hurt to take a breath and my neck was killing me. Now at a week out, I am starting to feel good again. The uncertainty of how long it will last can do me in if I think about it, so I try to just enjoy what I have, today. I think when you say you will allow yourself a glimmer of hope, that is what all of us with MS have right now. A glimmer of hope, that this venous theory may prove to be a big part of the puzzle. When I think I can't take one more moment of this MS life, I read your story. I think you are brave and strong and you make us realize that we have strength in reserve. When we get really down we just need to reach out to each other because that is when hope shines the brightest. Thanks for your post!