4/2/12 What do we fight for?  Is it worth it?



One and only time on a horse......Los Osos, CA

After coming to the full realization that my left jugular is now flowing like a muddy arctic river in December, most of my efforts now have turned to what to do about it.  I had a vascular consult with a Doc from Loma Linda in Southern California and another visit with Dr. Stone at Mayo last week.  I have several calls and records in to others and I have a few more consults scheduled, which I'll share after they take place. 

The Doctor at Loma Linda initially had a lukewarm repsonse to my case, but as Kathy and I talked about it with him, the interest level rose to the point where he took it to the conference level with his staff and will get back in touch with us shortly.  We were quite encouraged after that visit, because after we left they caled right away to get some more details and dates.  We also got another call from one of the docs we had been waiting on for a few weeks, so the drive from Loma Linda to Phoenix was a pretty upbeat.

At Mayo, Dr. Stone flat out told me he felt the risks of another surgery were signficantly higher than the first reconstruction and said he isn't going to do it.  I have a lot of respect for him professionally, so I won't go into the sordid details of our discussion, but suffice it to say he doesn't want to be the guy who sees my last breath. 

As we drove home from Phoenix on Friday, we had 5 hours or so to digest things before we hit the truly amazing Hoover Dam bypass bridge.  Why does my left jugular keep clotting?  I don't have a hemotology makeup conducive to clots.  My legs don't have DVT, and my arms and legs actually look fairly muscular.  My head isn't swollen, my eyes aren't popping out of my skull, and one of the thigs Dr. Stone said was that if I didn't have MS, as a vascular surgeon he wouldn't even consider the surgery in the first place, let alone the second.  Said it would be something tantamount to medical blasphemy, because veins collateralize and return blood to the heart.  My blood pressure is normal, too, so that's another reason.

So why does it keep clotting?  The right side is huge and flowing beautifully.  Is that the cause?  That I'm returning the volume of blood needed to work properly so the left side collapses enough in low flow conditions to start a clot?

It's a million dollar question to be sure.  But even more challenging is what to do about it?  Here's the rundown on the dilemma.......

1) The MS disease itself seems to be at bay, with no attacks for quite some time. 
2) The overall symptoms have been stable for a little while.  I was getting a LOT better through the end of the year and then pulled back a lttle bit, but not to the point I was when I started this whole thing.  My left leg was getting elephant-like, and I've maintained the normal leg look.  Urinary symptoms are a little worse, walking is a little worse, bowel is a little worse but still much better than before.
3) I have a little bit of a presence (like a dull ache) in my head, left side, from the temple to the upper jaw, that seems to escalate when I try to exercise.  It subsides a little when I clear my ears as if I am on a plane in the climb. 
4) I feel like I'm hung over on most mornings and it takes awhile to get whatever is in my head to drain out and get things going. 
5) The left jugular, though plugged up, has collateralized to a surprisingly large degree.  It isn't a nice straight drain like the native should be, but it's about a third of the size of the right jugular.

If I have another vein reconstruction, I face all the surgical risks such as death, nerve damage in other areas, etc., and the possibility of yet another failure.  If I don't have the surgery, I face the probability of the left temple presence worsening, and MS coming back active, taking me down another notch and/or adding more failures to perhaps my arms which are currently unaffected.

It's torture.  I can't believe I have to go through this type of analysis at 46 years old.  Why don't I get to run or even walk like a normal person?  Why do I have to have every business meeting interrupted by a bathroom emergency?  Why can't I just bend down and fix something like I used to?  Or take my son to Colorado to ski during spring break?  Some might say it's hell.

I often wonder why I go through the fight every day.  Is the chance of a worsening MS condition worth the chance of a severe surgical complication?  Can I live with myself if I get worse without contuing to try?  Is another reconstruction just going to result in another clog?  Is it possible to gently open the collaterals with the angio balloons?  Is there another way?

Then I see my wife and son.  There's no torture.  There's no hell.  There's only survival and a search for answers.  I figure I'll go see somewhere between 5 and 8 vascular surgeons, then sit down with all the data and discussions and make a decision on how to best proceed.  In the meantime, I'll keep my head up 90% of the time and minimize my sorrow for the other 10%.