Sunday, March 6, 2011

I'm still here.

So it's been just over a month since venogram #4.  How am I feeling?  Good.  Not great, good.  And as I type this, I remind myself that there's still one area that wasn't treated: my left IJV.  It would seem that I continue to run into all these little caveats that relentlessly jolt me up and down between hope/expectation and fear/disappointment.  Though I will say that compared to the way I felt about this last year, my approach has certainly... mellowed.  Not to say I haven't had let downs or scary moments.

The three major improvements after this last go were: less spasticity, little-to-no leg twitching, and sleeping through the night.

  1. Spasticity is back.  This has happened before and I'm personally convinced that it's related to the sedatives/anesthesia.  I'm not a doctor, and I don't play on on t.v., so there you have it.
  2. Leg twitching is better, but last night it bugged me when I tried to go to sleep and only stopped if I was laying in a certain position.
  3. I was sleeping through the night and then I got sidelined with a UTI earlier this week - which meant I was getting up to pee all night long.  It's getting better as the antibiotic does it's thing. But I had a mini freak out and convinced myself I restenosed, until I started to feel better.

And while we're on the "how am I feeling" update, here's how today has gone so far:
This morning I woke up and noticed that my legs were buzzing more than usual.  I had another mini-freak out because that's how they started to feel when I restenosed back in late November - but then I remembered that it was more of an electric shock type of sensation than a buzzing. So, I'll live with it and "wait and see".  If it gets worse, I'll let my doctor know.  The end.

Then I got out of bed, walked into the hallway (with my trusty walker, affectionately dubbed Walker, Texas Ranger) and turned on my heel to close the door.  Um, half-awake with slippers on hardwood floor?  What a dumb thing to do.  I fell hard on my bum and my back hit the wall.  Poor Keith shot up out of bed repeating, "Are you ok?!" over and over again.  Man, he is quick on his feet - he jumped out of bed and helped me up.  So what do I do - freak out?  No.  Let it ruin my day?  Nah.  Feel like an ass? Yes, most definitely.  After busting it on my hardwood floor, I dusted myself off and made my way down the hallway.  To my husband: I'm so sorry; what a horrible way for him to wake up. That kind of fall jars you on the inside, too.  I fell so hard I felt nauseous from the hit.  I don't see how mulling over it all day makes it any better. On I go...

Back up to Friday: my left pointer finger and thumb started to go numb.  Then it creeped over to my right pinky and ring finger. It's come and gone at will  What's this about?  I haven't had numbness or weakness in my hands for... 7 years. maybe longer?  It could be stress related - this weekend was physically and emotionally exhausting.  In a good way, but still.  After all of this craziness, I actually have an appointment with my neurologist tomorrow (coincidence, nothing more).  He was opposed to CCSVI but now he's on the fence.  Actually, he spoke at the symposium on Friday.  Too bad he had to leave early.  It would've been cool for my two doctors to meet.

That's where I'm at right now.  I don't want to micro-manage my symptoms.  I mean, its not like I can completely ignore it because I'm feeling (or not feeling) symptoms happening in my own body, all day.  That's what I was hoping for when I started the whole campaign to get treated last April, to forget that I have MS.  I'm not done with it, not by any means.  But this last trip to the hospital was a little more intense.  6 hours on the table - with anesthesia, to boot.  Took me a good two weeks to bounce back.  And then I had trouble with one of my incisions - that, thanks to blood thinners, continued to bleed long after it should've subsided.  And that sent me back to the IR department for a couple of stitches.  That was my first experience with stitches - not so bad, until the anesthesia wore off.  The thought of someone sewing my skin together just skeeves me out.  Luckily, the PA was great and the nurse that came in to visit (yes, that's how well they know me) kept me happily distracted.

I cannot tell a lie: sometimes I feel a tad in over my head.  This is just way more complicated than I thought it would be.  But, I will continue.  I have nothing to lose.

What's next?  With the blood clot in my left ijv making it nearly impossible to get in and open the vein up, I've been on a regimen of Plavix and Lovenox in hopes of breaking up the clot.  I'm scheduled for ultrasounds for every three weeks until May.

Some good news:

The report from an ultrasound on 2/7/11 reads:
IMPRESSION: No progression in previously seen thrombus within the mid portion of left internal jugular vein.

The 2/17 report reads:
IMPRESSION: Partial thrombosis of the distal left internal jugular vein, which appears improved when compared with the prior study from 2/7/11.

The clot is breaking up!  Quote from the (previously mum) ultrasound tech: "This is remarkable.  I've never seen anything like this!"  Prior to the 17th, when she tried to compress (press down on my neck with her fancy wand) the vein, it didn't budge because the clot was so big.  On the 17th, it actually gave way.  I told her it was a combo of blood thinners, prayer and mental visualization.  Hey man, whatever works.

Dr. M wants to try a venogram in a view months to see if  he can get in the left side, depending on how the clot looks.  And depending on what happens then, there's talk of a consult with a vascular surgeon for a venous bypass.  Basically, a portion of a vein from my leg would be moved up to my neck and used to bypass (duh) the bad portion of my vein.  I've done a little research and spoken to a doctor or two and historically, there's been a very low success rate with this type of surgery.  And, it's surgery: major- anesthesia-with-a-breathing-tube-out-cold-nasty-scar(s)-with-a-long-recovery.  Not sure how I feel about that yet.  I'm playing the "wait and see" card on that one, too.  I need a little more time between visits to the hospital, for crying out loud.

This post is a little more morose that I wanted to be.  There are a lot of good things happening in my life.  Most importantly, the past two days I attended the CCSVI educational symposium here in Tampa at Moffitt and the 1st annual CCSVI walk.

The symposium was good - very informative.  And the walk was a great opportunity to meet CCSVI Facebook friends - some that I've been talking to online for almost a year.  I wish that my doctor had been recognized for being the first treating doctor in Tampa.  I don't want to diminish all of the fantastic work that Dr. Arslan has done and I don't my doctor shoved unwillingly into a spotlight.  I know it was a Moffitt party - I totally get that.  And also, I want to be crystal clear: this is not an attempt to curtail all of the time, effort and energy of the people that worked so tirelessly to organize both events. I just think that as a community of doctors working towards the same goal, there could've been a little more collaboration.  This is just my opinion, not my doctor's.  It's hard to not have an opinion about something you're passionate about.

On the non-CCSVI front (wait. that exists in my life?), there are other really exciting things going on, too.

My husband and I getting ready to take our 3rd annual trip to Austin, TX for SXSW.  Our little record label, New Granada Records, has an official showcase AND a day party with one of my top five favorite bands (Versus) of all time playing.  I am beyond stoked. '09 was great, '10 was even better, but I think this year will be the best yet.  Austin will be buzzing with 2,000+ bands - music playing everywhere: on street corners, flatbed trucks, patios, bars, parking lots, churches, hotel lobbies.  I think it's just what I need right now.  We'll be there in a little over a week and I can.not.wait.

And the album I've been working on with my band since July of last year is finally in the mixing phase.  7 down, 10 to go.  We don't plan on putting out a double album - but we will cherry pick the best songs.  What a luxury - and then we'll have leftovers for EP's, 7-inches, etc. Joy!

I was hoping that I wouldn't have to take my scooter this year.  Walker or cane?  Sure.  Was that ridiculous expectation?  Maybe. I'm allowed to be hopeful.  I hang on to that.  It keeps me afloat.

That's the rub.  G'night.


  1. Hiya Susie. I am glad you are keeping your optimism through these many obstacles... pragamtic optimism really does wonders for leveling off the extreme lows that life can throw your way. I am so proud of you! Miss you much and would like to see you in March... before or after your SXSW adventure on wheels!

  2. Hi Susie. We have so much in common it is scary. Dr. Monty has had me on the table so many times that we call me his "problem child". My left IJV has restenosed 4 times and he has stented me until there is not much left to do. I had a huge hematoma on my right lef that needed vascular surgery to close and was being constantly aggravated by the Lovenox. All the IR folks at SJH know me and my wife on site. As an FYI: I have a new blood thinner that Dr. M is trying because of all the issues with Lovenox. It is called Pradaxa.

    If you get this before you head for Austin, please check out my cousin, Van Wilks. He was voted #1 player in Austin twice. He is so good I could not tune his guitar for him. Getting voted #1 player in Austin is a pretty big deal considering the company.

    Take care