10/24/12  Keep Swinging 

Two weeks ago I flew to Virginia to meet with a vascular surgeon as per suggestion from my last meeting with Dr. Arata.  After a presidential campaign-like whirlwind trip that lasted 25 hours with stops in New York, Baltimore, Washington, DC, Annandale, VA, and Minneapolis, the upshot of the meeting was that I am way too high of a risk to do another vein reconstruction.  The risk for loss of patency (i.e. won’t stay open) is high, and more importantly, the inability to control bleeding in the existing scar tissue is a real concern.  This is similar news to what I’ve got from several vascular docs before.  The doc in Virginia is, however, requesting all my films and procedures from Dr. Arata so they can consider some other options for me.  We’ll stay up on that. 
After that news, I re-contacted Dr. Arata to set up another inverventional procedure.  I got home yesterday after that.  This trip was to try and find a way to either re-open the graft or to reconnect the native jugular to the base of the superficial temporal.  As a side note, this was procedure #11 for me.  It was #9 with Dr. A (the other two were at Mayo), and this was the fifth location I’ve been on my back in a gown while he poked his tools inside.  The staff at Pacific Interventional knows me quite well.  Not sure if that’s a good thing……..

Anyway, Dr. Arata found a few things.  First, the bypass graft done by Mayo Clinic last August was outright gone and essentially absorbed into my existing tissue in the surrounding area.  I guess it said to itself, “I’m not needed, so I’ll just take my ball and go away.”  So anything to do with the idea of opening that or saving it is out.  Gone.  Not an option.  Second, he wasn’t able to navigate his tools inside the vein(s) to reconnect or stent any of the native jugular because of the spaghetti bowl mess I have in there now.  Third, the collateral that has been developing since the bypass graft clotted is actually doing well and has formed into a decent pathway. 
While I was lying on the table in a sedated state (by the way, I vaso-vagelled again), Dr. A told me about these things he found.  In my state of loopiness, I asked him what the plan was, and he told me there is a good chance we could reconnect the original native veins together by a kind of hybrid surgery/intervention procedure where the surgeon gains the access to the area and he does the stenting.  He said he would discuss this with some surgeons in the coming days.  He told my wife of the findings as well.

As I went to the recovery room and then headed home with Kathy, I began to think about many things surrounding my condition.  The obvious connection I have to open veins and better walking is well documented for me, so the things I thought about were more related to this opening of the vein and why this is so difficult.  I thought about how the technology has evolved in the past couple of years to address the clotting issue on initial CCSVI procedures.  I thought about how the venous bypass last August was so successful but was rendered useless when it clotted again.  I thought about how fortunate I was to have Dr. Arata right there inside my veins with the tools and the knowhow to gently pry open my collateral a little more but made the choice to not do that, knowing if that collateral clotted from an intervention I’d get worse.  The decision to stop then and there and consider other options was great.  Leaving me no better and no worse and with other options to consider was just a great medical decision. 
Mostly I thought about what was next.  I have to keep swinging.  If I stop swinging, I might get a walk, but it’s more likely I’m going to be out.  This is a long at-bat.  I’ve swung 11 times at these CCSVI pitches and I’m still not out.  I’m down.  I’m wondering “why me.”  I’m wishing this wasn’t such a huge part of my life.  But I’m not out.  With 11 strikes, the only possible way I’m still up to bat is I keep swinging and fouling it off.  I get enough of a piece to stay alive.  It might end up being one of the longest at-bats in history, but I’ll keep swinging until I miss completely and I’m out or I get some solid contact.  It seems this is just my nature.

We’ll explore the possibility of this hybrid surgical/intervention, and in the meantime I will also look into the idea of furthering the reduction of the inflammation, which heightens my symptoms, by other means.