Woke up this morning with a wine glass in my hand.....who's wine, what wine, where the hell did I dine? Must have been a dream. I don't believe where I've been. Come on, let's do it again...
Frampton's song notwithstanding, the surreal nature of this journey continues. A few years ago, we moved to Las Vegas. I was a little overweight, but otherwise healthy and strong, and building a little empire in real estate. We had a young healthy child who was smart and fun to be with, and we owned a nice home. We've been fortunate in the home and the child department, and our business continues to survive, but it is just impossible to explain all this MS mishmosh. Read my blog posts from back in October 2010. I was in healing mode. I improved, my legs were moving me around, and I felt CCSVI was the answer to the MS world.
Then the clotting of the jugular took place and my symptoms came back. We tried numerous times to re-open the left jugular, including a 10 day stint in the hospital back in February and numerous trips to LA to see Dr. Arata who repeatedly got me in on a priority basis to help do his part.
We then get the idea to go back to Mayo Clinic and see what they could offer. A trip there for a course of tPA and a stent within the stent was attempted and failed, so it brings me to today's post. I woke up after dreaming I was a normal person, a dream I have pretty often. I looked at my neck and leg, both of which look like I was in a gang fight. Yesterday's drive home from Phoenix was a grueling, 7 hour ride where we had to stop several times to get out and walk around. I hurt, I ache, and I wonder what happened to me again and again. Is this really happening?
Yes, it is. I just went through a surgery in which 4 world class Mayo Clinic surgeons worked on me, 2 on the leg and 2 on the neck, for 4 1/2 hours. They removed the Saphenous vein from my left leg, fileted it and reconfigured it, then popped it back into my neck, somehow managing to not cut any other nerves, arteries, or just cutting my whole head off.
I last remember them prepping me in the operating room, and I remember there were some ten or so people doing things to get me ready. I think I asked the anesthesiologist if he added something to my IV because I was starting to feel out of it. He responded yes and I woke up some 9 or 10 hours later in my room with a pile of nurses looming around me, setting me up with things I guess I needed.
Kathy and Jake were in the room and I soon learned the procedure was the "easier" of the two, meaning they were happy enough with the subclavean vein to not have to crack open my chest and run the new line into the SVC by my heart. I was prepared for that, but as I mentioned before, I was pretty relieved we didn't have to do that.
So there I was in the room, pushing the pain button from about 5 until 7:30 pm or so, and I fell asleep until about 11pm. When I woke up, the anesthesia began to wear off, and I could feel my breathing was easier. I wondered if, after all this, my new vein was open and flowing blood. I layed awake all night, all the next day, the next night and day, watching TV (Michele Bachman won the Iowa Straw Poll.......saw that about 600 times), drifting in and out of various states of awareness, constantly wondering if this surgery would be successful and if my MS symptoms would obtain any relief. In all, I was awake in the hospital about 48-50 hours after the surgery.
Dr. Stone came in Saturday morning and told me all about the procedure. To him, it was another day at the beach, and he kept telling me he was just glad things were improving and I was ok. He did admit that stitching up my vein in the new spiral to get the diameter they wanted was a bit tedious, taking a couple of hours of fine needlepoint. Then he grabbed a portable Doppler unit and put it at the base of my neck, just to make sure blood was flowing through his new vein. He was confident it was flowing, but to me, hearing the blood flow through after all these tries was sweet music to my ears.
The second night was a little weird too. I layed awake again, and I was somehow becoming delerious, because I just didn't know what I wanted. The nurse kept coming in and asking me, but I didn't know. I was just out of it, and couldn't make a decision on something to drink, much less if I wanted a pillow. I layed there, and at one point I realized I had no pee bottle, so for the remainder of the night I just peed all over myself.
In the morning, still wide awake, the same nurse came in and realized I had done this, and she kept asking me why I didn't tell her what I needed. I never had an answer, and I eventually just broke down, started crying my eyes out, telling her I used to be so capable, and I just hate asking people to do things for me when I feel I should be able to do them myself. She called for help and soon my bed and my filthy, urine and sweat soaked body were cleaned up and I was sitting in a chair listening to yet another Doppler of my blood flowing out of the bottom of my neck. More music to my ears.
Eventually I snapped out of my pity party and I started to take little cat naps throughout the day and began to walk around the nurse station a couple of times a day, and I began to realize my balance felt like it did back in October after CCSVI #1. I was weak and felt like a train wreck, but I could tell those signals between the head and feet were working and I felt more stable. I felt hope. I felt there was a chance this worked.
I was discharged Monday afternoon about 4:00pm after some incredible care by the nurses and being visited by numerous doctors who all had a real interest in this surgery. We stayed in Phoenix for the night and drove home yesterday, some 7 or so hours with lots of stops to get out and walk around. We went to Chili's for dinner last night, and came home to a night of real sleep, which felt so good.
As I awoke this morning, I thought about this as something beyond me. Sure I was and still am hurting, but I'm in recovery now and it's just something I have to bear down and deal with. But more importantly, it was becoming clear that the CCSVI/MS link is gaining some traction, even at Mayo Clinic. I don't know for sure, but I think I am their first, if not among their first, to have a vein reconstruction done at Mayo for this purpose. They agreed to do my procedure because I had clearly demonstrated relief of my symptoms from all the other procedures, even if only for a day prior to a reclog. This is the first I've heard of this type of procedure being done for the purpose of improving an MS patient symptoms, instead of calling it treatment for CCSVI.
So as I continue to digest the magnitude of all I have been through in the past few days, weeks, months and years in this disease, part of my recovery is made bearable by knowing I might have been a part of the future for MS patients getting CCSVI treatment in the open, instead of having to go underground because of the controversy surrounding it.
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