Countdown: 14 days away
That is exactly two weeks.
No wrenches in the plans as of yet.
I've filled out some information on my supplements to send in. I checked with my insurance about the Arixtra and there is no quantity limit, so I should be able to get the 40 doses of 2.5 mg Arixtra. I am happy about that.
From my MRV results and ultrasound, it looks as if I have stenoses in both jugulars and, as seen in the MRV, something going on in the azygous that is causing reflux. I know what is seen in the catheter venogram will be the real test. But if the pre-imaging is accurate, there will be at least those three areas to be ballooned. If each of the three areas has a 50% chance of not restenosing, then what is the math for what my chances are of having at least one stay open and not restenose? I work it out as being 7/8ths or 87.5%. Those are good odds.
But then again the azygous shouldn't be in that equation. It is likely to stay open anyway if the research from Zamboni holds true. And it's the blockages in the jugulars that are likely causing my fatigue issues. So the odds of at least one of two jugulars that are ballooned staying open might be 3/4ths or 75%.
Now if there's more than one issue in a single jugular, then the math gets even funkier and I had better give up. I am getting closer to my treatment date by the minute.
Can you believe it. I've waited many, many months. (Many, many….) When I first got on Dr. Sclafani's list, he was just about to become the only doctor openly treating in the US. He was not yet posting on TIMS, I did not know him from any other doctor out there. That soon changed. But a month after I got on Dr. Sclafani's list, the IRB intervened, and there were no doctors openly treating. A month later, in May, with Dr. Sclafani still working through the IRB process, Dr. Siskin of Albany became the only doctor openly treating in the US. I managed to resist going with Dr. Siskin. It is hard to give up on a doctor like Sclafani.
But the temptations increased. I did not want to go with the excellent Dr. Siskin, did I want to go with Dr. Arata? He was using the bigger balloons that I wanted…. I did not go with Dr. Arata. Did I want to go with Dr. Sullivan in Atlanta? He was part of Dr. Sclafani's group, he was conservative about the use of stents. I did not go with Dr. Sullivan. But maybe I'd want to go with a doctor who was even closer? How about Chicago? No? Ok, how about a doctor right here in Minneapolis?
And then just in time, at last the wait is over, and I will be able to be treated by Dr. Sclafani after all.
I may have missed out on getting treated sooner if I had just gone for it, but over those many months we learned much more about the possible complications of the procedure. I chose Dr. Sclafani for many reasons: he considers stents too dangerous and I agree; he uses IVUS and gives each patient a thorough workover; he uses a true anticoagulant and I have read too many stories of clotting in the jugulars; he is intuitive at what he does and experienced with angioplasty and one of the few CCSVI experts out there. I chose him because I know him from TIMS and, yes, admittedly, I adore him. But I also chose him at complete random, because bestadmom emailed me his name and said he was treating CCSVI and that he was good.
Fourteen days until, at last, I find out if she was right.