Monday, June 28, 2010

June 18, 2010

Friday, June 18th. A day that could change my life forever. Or, not at all. See, some people are treated for CCSVI and show no improvement. Some are treated and have transformative, near-miraculous results. MOST who are treated show small, incremental changes over a few months. But, I had filled my brain with repeated viewings of youtube videos that fall into the "near-miraculous" category. And I hoped to God that I wouldn't be disappointed.

The day before on the way to my pre-op registration I was an emotional mess. Singing along to songs in the car my voice would waver and then break as I was reduced to tears by a lyric or even a swell in the music. Yes: I put all my eggs in the CCSVI basket. Whether or not that was a smart decision remained to be seen.

So back, to the 18th. I didn't need to be at the hospital until noon but I went ahead and took the day off because there's no way I would've been able to get any work done. I was able to sleep in a bit (thanks to the 2 Restorils I popped the night before) but I still woke up antsy. I had no idea what to expect (everything was explained to me ahead of time, but that didn't quite prepare me) and there was still a nagging worry that things would not move ahead once they found out I had MS.

See, this procedure - a venogram to diagnose followed by a venoplasty to treat - has been used successfully for over 30 years. BUT if you attach MS to it, it becomes "experimental". I'll repeat what I've said before: Yes I have MS. But I also have venous compression. And that's what I was being treated for.

Keith and I got to the hospital right at noon and we ran into the doctor in the lobby. Took that as a good sign! They took us up to pre-op and I got settled in (gown, iv, and those fabulous hospital socks with the treads dubbed my "souvenir socks" by the nurses). We had a private room, wireless internet and a cell phone for Keith with my patient ID so the doctor could call him after he was finished. Pretty posh. After all that, it was about 1:30. The doc came in to say hello and talk to us about what to expect. Thanks to my little friend Xanax, I wasn't even nervous. Just freezing cold. Yay for warm blankets!

Now, keep in mind that I had yet to have any diagnostic tests. So there was a small chance that once he looked at my veins he wouldn't find anything. I was convinced that wouldn't be the case but in the very tiniest corner of my mind I knew that was a possibility. There was also the chance that once he got into my veins and opened them with balloons (that were then removed), they wouldn't stay open. The only option after that is stents. Which, though they're more painful and require a longer recovery/post-op drugs/weekly bloodwork, are potentially better in the long run because there's no risk of restenosing (having your veins close up again). So far, in treating CCSVI, there's been one case of a stent migrating from a patient's jugular to their heart, and the patient required open heart surgery. But the risk is very, very low. 1 in 5,000 according to my IR.

We hung out for a little while longer and then a nurse came to take me to the OR. Not sure if it's actually an OR or not, but I'll just call it that anyway. They transferred me to "the table", put a lovely and fashionable cap on my head. Then there was the other prep work (ahem... hair removal, and whatnot). But the nurse was very discreet and told me everything that was going on. Then, the sedative. Oh, the lovely sedative. Talk about taking the edge off. I was totally aware of what was going on, but I had zero capacity to be worried about it. 

Did I mention how awesome my doctor is? Totally approachable, set me at ease - he even asked me what my favorite Pandora station is. At first, I said Versus and then decided that I should probably pick something a little more mellow. So, Ida it was. The first song that came on was from Heart Like a River called "Forgive" (click here for a snippet). Every time I hear that song, it will remind me of that day. It made me a little teary, right there on the table. I know, we've already established that I'm a crybaby.  I also heard some Matt Pond PA and Death Cab. Surreal, but awesome.

I felt a little prick at the very top of my right thigh, almost at my bikini line. That was to numb the incision site. That was all I felt of the catheter going into my femoral vein - less painful, in fact, than my IV.  See there are no nerve pathways inside your veins, hence the absence of discomfort.  There were 6 or so monitors to my left, but I couldn't always see what was going on because I had to position my head to whatever direction that would give the doc the optimum point of view.  Sometimes he asked me to hold my breath, so my veins could get their close-ups.

Every once in awhile I'd ask, "What do you see?"  First up? My azygous vein was clear  (see below, it kinda looks like a candy cane.
I thought for sure there would be stenosis in my azygous because a lot of lesions are on my spine.  But, what do I know?

Then he began to balloon the veins he found stenoses in, starting at the base of each jugular (each side was 50% stenosed).  It felt uncomfortable - not painful.  Like there was a lot of pressure building up in my neck.  I heard cracks and pops, too.  And he would ask me to turn my  head to the left or the right.  His final report states that he ballooned the base of each jugular three times.  Thanks new my new BFF Versed (pronounced Verset), I don't remember much...

Moving higher up to my left internal jugular, directly behind my ear, he found 75% stenosis .  This one was a little more uncomfortable than the first two - and he had to balloon it four times. 

All 3 venoplasties took - no stents.  Now we just have to keep an eye out for restenosis.  I'll know if that happens because any symptoms that subside will return with a quickness.  Here are some more pics:
Left Internal Jugular before

...and after

The next thing I heard, "Ok kiddo, we're all done."  He put some pressure on the incision and little strip of Dermabond (kinda like fancy scotch tape) and it was off to recovery.  Keith came in to see me right away and he'd just talked to the doc, who told him, "I was really hoping to find something more severe."  Aw, he really wanted to fix me.  But he did!

The next couple of hours are kind of fuzzy.  Still  full o'sedatives, I vaguely remember not being able to sit up and being told to lay as still as possible.  I hadn't eaten anything since dinner the night before so I sucked down some applesauce - it was interesting to try and eat when I was almost laying flat.  But, I made it work cause girlfriend was huuuuun-gry.  Apparently I had a phone conversation where I told my mom I'd call when we were at home (which I didn't because I don't remember telling her that.  So sorry Mom!)

I had none of the "on the table" immediate improvements - but it was kind of hard to tell because I was laying down.  My feet felt warmer, but I was also wearing a cozy pair of socks, so that wasn't a good gauge.  The first real thing I noticed?  When I was getting off the bed and stood up for the first time in about 5 hours, my legs didn't do their usual lock up and release.  Spasticity was the culprit there.  But it was completely gone.  And I could pee!  Hallelujah, I could pee!  Oh, it's the little things we take for granted - yes, you don't know what you got till it's gone. I won't go into too much detail describing my potty issues.  Who cares, they weren't around to bother me anymore!

Then I went home, and the healing began.  Slowly but surely I was on my way to good things.  More details to come...

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