To me, the name of this procedure sounds strange, but I guess it’s appropriate to follow suit when describing this. The typical MS patient feels like a prisoner in their body, because we’re really not 100% sure why it is that we can’t do things like we used to. We spent the first 2-5 years of the diagnostic process being told we’re stress cases or have something else going on, being told we’re interesting cases, or zebras, or as one put it to me, “If all my cases were like you, I’d shoot myself.” Then, after hours of wasted time in waiting rooms, MRI tubes, spinal taps and countless other tests, searching for clues on the internet, one day someone tells us we have MS. We feel somewhat vindicated that our issues have a name and relieved that we won’t be written up in some medical journal as the rarest disease ever known to man. And we’re happy that it’s “only” MS; after all, it won’t kill us. We feel good for awhile with all this once we figure it out, but then as daily life slowly resumes, we watch in horror as another one of our precious body functions gets worse, or another taken away.
It slowly saps our strength, our ability to enjoy the simple things like going on a jog, then a hike, then even for a walk to the car to go to a birthday party. Sure, we try to put on a good face, but when the things that used to be so simple are now so difficult, we slowly start to give up. For most, it reduces our zest for living, and for some, it reduces our will to live.
Today, yes, today, 10/26/2010, I had a CCSVI procedure done. For those of us who have decided to take the plunge and have our veins opened, the thought of breaking out of this jail can be quite liberating. So to restate it, I had Dr. Zamboni’s Liberation Procedure done today.
I arrived at the surgery center early again, scheduled for 11:00. After the paperwork and formalities were completed, I changed into the gown and lay on the bed. The prior surgery in the center went a little overtime, so I was wheeled in around 12:30. I really didn’t care that I had to wait 90 minutes. I had nothing else to do today.
They noticed I was taller than the average person (6’5”), so they decided they would do the surgery through my arm instead of the groin for fear that the catheters wouldn’t reach all the way. What I knew was this procedure was a combination venogram and angioplasty, with possible stent placement.
I was awake, but sedated, and Dr. Arata talked me through the whole procedure. The entry point was like a large IV between my right bicep and tricep, about 2” down my arm from the armpit. The catheter was inserted into the opening and into the vein, and he was off and running while the technician positionedthe X-Ray dome right over my chest so we could all see the screen. First up was the right jugular. I had to turn my head to the left so he could get the catheter into it. Turning to the left I couldn’t see the screen anymore, so he talked me through it. I then felt the balloon expanding in my vein as he opened it up.
The right side hurt a little, but it wasn’t overwhelming. Dr. Arata took before, during and after pictures of the blood flow, and was able to confirm it had improved. He also spent the time to confirm it wasn't re-collapsing as the ballon was removed. Unless they were playing an old movie of someone else, it was so obvious to anyone looking at it that the vein had opened and my blood was flowing freely.
On to the left side. I turned my head to the right (right ear in the pillow, left ear to the ceiling), and now I could see the screen. I watched as he probed the catheter into the left jugular and expanded the balloon again. This side hurt. Perhaps it was the combination of the pain and seeing the balloon inside me, perhaps I’m just wimpy, but this side hurt like heck. I started sweating, and then passed out for a minute or two. Full vaso vagel, and my blood pressure and pulse dropped off the chart.
I came to a few minutes later and of course was disoriented. I asked why nothing was going on or if it was over. Dr. Arata said something like: “He’s back, let’s carry on,” and they did. I saw the photos and the screen showing the blood flowing like a fire hose. It was a welcome sight, and I remember thinking that maybe this was going to work.
Blood flow is the key to many, if not all, bodily functions. Kathy had thought this procedure might be akin to filling a sink to brush your teeth. The supply line isn’t clogged, and the sink fills as it supposed to. But the drain line is clogged, causing the sink to develop a foamy water line of crud, toothpaste and saliva residue, and God knows what else. Eventually the water drains away, but the crud is left in the sink, meaning a trip to Walmart to buy some harmful cleaner over and over again to wash down the sink so it doesn’t stink, or stain over time. And all that was wrong was the pipes were closed, and a rooter down the pipes to open the drain was all that was needed to make the sink work normally. It all seems so simple.
Next was the Azygos vein. The Azygos crosses the spinal cord behind the heart, and Doctor Arata said he was finding in many cases it won’t stay open with the balloon. This proved to be the case with me, and after three attempts to open the vein and watching it collapse, he decided to put in a stent. He went with a 14 mm stent inserted into my 12mm vein, and after insertion, he got the blood moving. Again, I saw it all on the screen. It was a beautiful thing.
I remained alert through the rest of the procedure, and when Dr. Arata said “Ok that’s it, we’re done,” I wanted to leap off the table. The 15 minute process of unhooking me from the table ensued, and I was wheeled back to the recovery area, where I devoured a sandwich and some apple juice.
Minimal pain, no side effects, all was well, so I was released about 60-70 minutes later. I walked, yes walked, to the car with Kathy, and it almost seemed like I could drive. I didn’t of course, but I really felt quite good. I felt like “something” was different with my legs. I don’t know how to describe it, if it’s good or bad, or otherwise. But something was different. We got back to the hotel and that’s when I crashed. Kathy worked out at the hotel gym and I slept for a few hours. It’ll be interesting to see how this feels tomorrow.
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