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. 

2 comments:

Anonymous said...

Have you tried NUCCA or Atas Orthogonal to try and improve your drainage? You are quite athletic so you may have a C1/Atlas issue? I am trying the NUCCA in November. Had CCSVI treatment ( Dr. Arata) over a year ago but have a compression that has become worse from painting a ceiling for a day. Also have you tied a dental splint. We msers seem to all have the same bite issue. Just throwin' it out there. Best of Luck from a fellow mser. I Enjoy your blog as we are all tied together by this miserable thing called ms. JO

Maren Rasmussen said...

I've been following your story since the reconstruction and I hope you're able to find an option that leads to improvements again. My own venoplasty made an enormous difference in my life. It really is all about the veins.