Here's how the liberation procedure happened. I arrived at the hospital at 8:00am, with the actual procedure scheduled at 10:00am. I woke up at 2:00am, I was so anxious and excited I couldn't sleep. I took a Plavik pill for the first time at 6:00am: the doctor's nurse had sent the Px ahead of time. I am going to have to take it for 30 days, as an anti-clotting agent. Just a precaution.
My younger brother drove me there, and accompanied me until I was accepted. The first stop was with the insurance lady. I have Medicare because of my disability status. At this point, I have no idea whether Medicare will cover this procedure or not, so it fits the day's whole feeling of "the old WWII movie where the soldier is posed at the door of the airplane, just before he jumps, hoping that the parachute will indeed open."
Next they took a blood sample (for what wasn't explained), met the head nurse, answered a few basic health questions, went to the bathroom, changed into hospital gowns, and then waited. Was called up, placed on a mobile hospital bed, and was rolled into the operating room. I was then shifted onto the actual operating table. The actual x-ray machine was a half sphere shaped device about 2 feet wide, with the flat side facing me.
There were four large monitor screens where the x-images were displayed. On the side was a large table with all kinds of medical stuff.
The x-ray half-sphere was mounted overhead on a circular arch, which enabled it to be shifted back and forth. So it could get images on the left, right sides or be centered over me. The analgesiast asked me if I was allergic to contrast dye or other drugs. I said no, but I have learned from past experiences I am very sensitive to drugs. Whatever they are supposed to do, they do to me. She was very good; I was sedated just to the point that the procedure was tolerable, but I was fully aware of what was going on. I was very curious about what was going to happen so I didn't want to be buzzed-off.
I was shaved in the groin area, prepped with an "anti-bug" wash, had hand supports added to both sides of the table so they could rest comfortably. It was important to not to move my body so they could get sharp images. The doctor arrived and went over the procedure quickly.
The IR positioned himself on my left hand side; from there he could observe the live x-ray images in front of him from the monitors on the other side of the operating table. He had access to my left hand side groin area to insert the wire.
The first part of the procedure is essentially taking a series of venograms. Took numerous images of my azygous veins, and neck veins. Told not to breathe while they took x-ray images. The overhead lights on the ceiling were turned off and on repeatedly. The staff went back and forth.
The actual procedure started with examining my azygous vein because I was diagnosed as PPMS and Dr. Zamboni claimed 90% of the time, there were problems there. It was a bit of a surprise when the doctor, an interventional radiologist, said that it looked fine-no evidence of anything wrong there. I felt "disappointed" and started to wonder if I had CCSVI after all.
The turning point when it was the internal jugular veins turn. The doctor stated "you have a stenosis" it was an exciting moment in that the CCSVI theory did apply to me. I think the doctor was as excited as I was in that he did locate the problem.
Next was a lot of scurrying around by the staff; the wire was inserted (I don't know at what point because it was painless-the only thing you feel is the hand pressure of the doctor as he pushes or pulls the wire. You do not sense the wire inside yourself or the veins. I was told that the interior of the veins do not have pain sensors). The doctor had a wide range of types (brand names?) and sizes of balloons to select from, which was great because it turned out that a long one was needed.
The balloon procedure felt like when you have your blood pressure taken. It builds up pressure and does cause some discomfort. I must have a relatively high pain tolerance because it didn't brother me to the point of complaining. The doctor warned me before he inflated the balloon, and asked about the pain level. Most of the time, I said 2 or 3.
It turned that there were stenosis high up on both the right and left internal jugular veins. I could feel the balloon pressure behind my ears, especially on the left side. The doctor said it was very constricted.
I couldn't hold my silence anymore and during a lull, I asked the doctor if he said any collateral veins present near the stenosis. He said yes; more about this later.
I lost count of how many times the balloons were inflated and collapsed; first on the my right hand side and then on the left hand side. By the time he was finished on the left side, I was getting tired. I think that in the future as this procedure becomes commonplace (or if a particular patient really doesn't want to know what's going on), the dulling agent could be increased. But I really wanted to know what was going on and wanted to avoid any post-operation sickness. I hadn't eaten anything since lunch (corned beef) the day before so my stomach wasn't bloated.
Finally it was over. The staff shut everything down. I was shifted back to the mobile hospital bed, by having a whole body panel placed beneath me. The IR greeted me and we talked. I was absolutely STUNNED to see a venogram on the monitor for the first time. (During the procedure, I couldn't see the live images because the x-ray machine largely blocked my view.)
The right vulgar vein was extremely narrowed very high up. To the inside, paralleling this vein, was a massive series of collateral veins. They looked like a rat's nest: some were small, other's thicker. Completely irregular and essentially they were my only means of draining blood from my head. Sobering when you realize that they shouldn't be there in the first place. The left side was even worst. I am hoping to get images from the IR later. This result was 100% consistent with my history of head/neck trauma from twenty years ago.
The last step was to be taken to a recovery room for resting flat on my back for four hours. The main concern was that the incision wasn't bleeding. After that, the nurse made me get up and walk up and down the hall to check if everything was OK. My brother had arrived, and I was taken by wheelchair to his car. Back home in about a hour; ate a pizza and stayed in bed. Slept soundly.
Because I didn't stay at the hospital overnight, I wasn't officially admitted so this was considered a "day surgery." Figure that saved me a thousand bucks!
More later. I am hoping that by relating my experiences in detail, the fear will be taken out of undergoing this new procedure. I have no doubt that in the future this will be a routine procedure, and the next step for patients diagnosed with MS.
Last edited by Donnchadh on Wed Mar 24, 2010 5:38 am, edited 10 times in total.