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.

9/24/12  Doggone it……

I went to see Dr. Arata in LA a couple weeks ago to see how the collateral was holding up in the left jugular.  I was beginning to feel some more of that irritating presence in my left temple, my legs have not been doing very well over the summer in the heat, my bladder is almost devoid of any emptying pressure, my bowels not doing quite as well as before despite the magnesium, and in general I feel a bit of a decline from my last post.  The good news is the brain fog and morning headaches seem to be not returning.

Through an MRV I learned my collateral is holding steady and the right jugular is still doing well, so it remains fairly clear about the correlation between my MS and my veins.

1)      I’ve had my left internal jugular vein open and close so many times this is undeniable.  Every time my vein has been opened up, my condition improves.  Every time my left jugular has clotted back down, my condition worsens.  And it’s not just subjective.  All my friends, family, coworkers, etc. all notice the difference.  I’ve had 9 angio/venoplasties and one vascular reconstruction.  The improvement after the reconstruction is quite well documented, and I sit about 13 months post op after it clotted about 6 -7 months ago with symptoms slowly deteriorating.  It doesn’t get much more obvious than that.

2)      For me, the left jugular has a greater impact on my walking and bowel/bladder symptoms than the right.  I have a slower reaction to the loss of blood flow with the right open and it seems by having the right open my brain function, brain fog, morning headaches, and the like is still good, but there simply isn’t enough flow on the left side to keep my legs and pelvic symptoms under control. 

3)      Given my problems are accentuated by the left side blockage, and the symptoms are more slowly building because of the collateral that formed on that side, what can we conclude, if anything?  Is the collateral allowing blood flow equal to, more than or less than prior to any intervention?  Is it deoxygenated blood, loss of blood nutrients, or the venous hypertension contributing to those symptoms?  Is it all, both, or neither?  How close is the blockage and associated back-up to the lesions in my head?  Are these lesions sensitive to hypoxic or stagnant blood?  Are they sensitive to the pressure build up?  Is there a way to transvenously stimulate the lesions to promote healing?

The most frustrating thing in this disease, beyond the quality of life, is the constant onslaught of nonsense I read in every medical journal or article that reads something like “MS is a disease affecting the auto-immune system, causing the body to attack the myelin sheath.  There is no cure, but there are treatments that can help improve the quality of a person’s life.” 

So let’s be clear.  I live with this every day, I can feel the symptoms, I’m reasonably intelligent, and I’m pretty in tune with my body thanks to an athletic history.  MS is not an auto immune disease.  It shows up with neurological issues that affect people in thousands of different ways.  It is rooted in vascular hypoxia, and the treatment (and possible cure) is to improve oxygen transfer to levels of normal people let the body to heal from the inside out.  Yes this is my opinion, but one day this will be proven through the proper scientific methods.

For now, I’m awaiting a consult for another vascular surgeon; a guy who understands what we’re doing here and gives me the best probability of success.  Because I have the two bad jugulars, I’m down to a few limited choices on how I can get my left jugular flow improved so the upstream veins in my head can deliver proper oxygen transfer.  I have two useless jugulars on my left side right now (native was stented then bypassed, and the graft shriveled up) and I have enough of a vein left below the skull to potentially attach another graft.  I could possibly wait for the collateral to fully form into a proper vein, them incrementally balloon it over 3-6 procedures to get the flow up to the desired levels.  I’m willing to take anticoagulants – even indefinitely – if I have to, but I do have to tread lightly so the next thing I do has the best chance of success.