10/31/11 Getting Better, but.....?

Big Bear Lake in Southern California hosts one of the great Oktoberfests every year, and this past weekend was time for us to get together with our friends from San Luis Obispo and enjoy the annual pagan ritual.  Last year was a real bummer for me.  I felt so alone in a sea of people dancing, partying, drinking and generally enjoying themselves while I stood outside, heart out of rhythm, legs the worst they've ever been, and generally not enjoying myself.

What a difference from a year ago.  Last year we went to Big Bear a couple of weeks before my first CCSVI and I was miserable as I felt my legs slowly drifting into the black hole, but shortly afterward I began to feel some real hope as a result of that procedure.  I had about 6-8 weeks of relief from the first CCSVI, and it became the beginning of this one year (to date) journey of the open vein.  Come January, my left jugular had clotted and my symptoms began to return, and thus 2011 became a year of trying to get the clotting under control.  9 procedures including a vein reconstruction later, my progress is beginning to feel like I'm heading in the right direction again.

But it's not without its challenges.  As part of our Big Bear ritual, we bring the motorcycles and ride the hundreds of miles of fire roads and other trails around the area.  It's downright beautiful around Big Bear. 6-7000 feet, above the smog of LA, seldom rains, and smells like pine about everywhere you go.  Saturday we rode about 50 miles, and Sunday we got about 55 in.  On Sunday, we were running a little late, so we tried to find a shortcut over the mountain.  After a reasonably good climb on nice terrain, it suddenly got rocky and narrow, with ruts and potholes everywhere.

I can't stand up on the bike for any length of time, and I also can't really stand in the athletic position required to navigate the slop.  I thus have to sit and try to make my way up the rocky hillside as best I can and my eyes jiggle as it becomes more and more difficult to keep the momentum.  Obviously, this is where most of my low speed falls take place, and my riding partners have to come and rescue me.

I made it up a fair distance, then lost control and slid down into a big rut, then got the bike stuck.  I didn't fall, but I was hopelessly stuck on some boulders down in a giant rut the height of the bike.  My buddy came back to find me and he got the bike out as I took every piece of energy I had to try and crawl out of the rut.  A normal person would just climb out and walk up with the bike, but with all the progress I've made, this situation is definitely where the intense weakness and loss of motor strength shows up.

Strangely, this time I wasn't so mad about it.  I usually get quite upset when I can't walk out of somewhere, but on this day, I just crawled out of the hole, got back onto the bike and did my best to navigate down the hill back to the better terrain.

We got home late last night and I popped up this morning to go swimming.  So I guess it's fair to say I am getting better, but........I still have a ways to go before I'd call this fixed.

Sure had a nice time though.

10/14/11 The "Spiral"

I have been asked a lot how the saphenous vein was increased in diameter to become my new jugular vein, so I'll try to explain. 

Imagine the saphenous vein is removed and laying on a table like any normal drinking straw.  Slice along the top side of the straw, then lay it down flat on the table so now it's like a ribbon.  Now, wrap the ribbon around a metal pole of any diameter in a spiral, like a barber's pole or a toilet paper roll, and stitch it up while on the pole so it holds its shape.  When you do this, you can increase the diameter to any amount, so long as the ribbon is long enough.  This is why they took the whole thing out of my leg.  Snip the ends so they are straight, and insert the newly widened tube into the neck and call it a jugular vein.

The crucial component of this is patience.  Dr. Stone said the surgeons all took turns stitching up my new jugular vein because it was meticulous and tedious work.  Each and every stitch - hundreds of them - had to be deep enough into the tissue to give it structural support, but not too deep so as to penetrate the blood side which would allow the stitching material to interact with the blood flow, causing the very clotting we we trying to avoid. 

This surgery isn't for rookies or anyone with an afternoon golf game.

10/14/11 Feelin that way........

Opened my eyes to a new kind of way
All the good times that you saved
Are you feeling,
You feeling that way too
Or am I just,
Am I just a fool......

Journey hit the nail on the head with this one.  I’m now 9 weeks post-op and as has been the case every time I circulate blood like a normal human, I see improvement in my gait and breathing initially, and now that my wounds are all dried out, instead of feeling like a fool, I'm really starting to feel some of the benefits I felt back last October when I had my first CCSVI done.  Walking is improved, bowel is improved, fewer or no morning headaches, cog fog reduced or gone, MS hug is gone, and I have a general feeling of better health from the greater breathing and oxygen intake. 

Anyone who has read this blog will know I am convinced MS is not a neurological or auto immune disorder.  That explanation simply isn't plausible to me.  I think MS lesions on the myelin sheath, unlike cancer cells that are living, are cells or cellular material that have died from a hypoxic condition in the microscopic veins after arterial delivery has been completed.  Veins carry about 25% of the oxygen that arteries carry, but they need that remaining oxygen to keep the drain side of the circulatory system alive.  Because of lower oxygen levels and/or saturation, I think stagnation in the venous flow over time kills cells on the myelin when the microscopic pathways become hypoxic.  I think that restoration of venous flow through CCSVI raises that level of oxygen saturation required for cells to remain healthy, and perhaps eventually even restore.  Remember, nerve cells are the slowest to regenerate.  I think this explains why MS generally doesn’t onset until people are at or near 40, why we feel some type of immediate relief from a CCSVI angio but not fully heal immediately, and why the repeated infusion of oxygen might slowly over time allow regeneration of the myelin.  What auto-immune hyptothesis even comes close?

I've been posting to this blog for a couple of years now as a way to keep myself accountable and to share news with friends and family about my condition.  All of us MS guys and girls know what a hassle it is to answer the old "how you doing" every time we talk to someone.  And of course people care, but I've always wanted to be treated like a normal person since I got this stupid disease.  Thus the blog.  It's easier. 
"Hey, Mike how's it going?" 
"Not too bad, you read the blog lately?" 
"Yeah, seems it's going well." 
"Yep, so let's talk about business, motorcycles, music, or something else more important because I'm not sick today."

Now suddenly, in the past few weeks the traffic on my blog has elevated significantly, and the number of people writing to me has increased tenfold.  Either I'm a great guy who everyone wants to talk to, or my experience at Mayo has lit up some kind of hope firestorm for those MS turned CCSVI turned occluded jugular/DVT patients.  I'll go with the latter.......

Think about it.  How cruel is it that we have MS, get lured into all kinds of magazine article false senses of hope with promises of new drugs and procedures, and then CCSVI comes along promising utopia - until the mighty thrombus takes over.  Can we get a break?

I think so.  I really do.  Re-read what I think MS is.  Then go talk to a doctor who may not agree.  Then form your own opinion.

I didn't invent or discover CCSVI, but I am helping to bring it to mainstream medicine.  I was just another guy who wanted a better future without wheelchairs and had my veins opened.  I had relief initially, but experienced complications of thrombosis clogging up my left jugular.  Since I was already a Mayo patient, I went to them to see what to do about it, and blindly became the first to providing a solution for both myself and for others who have had this happen to them. 

My case was a huge step toward moving CCSVI toward mainstream medicine and out of the illicit, evil world of dastardly people who want to walk to the market (shame on us).  I was the first patient at Mayo Clinic to have a vein bypass for the purpose of relieving well-documented MS symptoms.  I am also the first to demonstrate, from a truly excellent facitlity, that there is a solution for many people who have a CCSVI procedure that results in complications like this.

Now obviously, Dr. Stone is a great doctor and Mayo is a great facility, and the calls they will get just from my blog alone will probably increase.  But really, there are a great deal of vascular surgeons out there who can and will do this once the FDA, insurance companies, and the Canadian health care system realize the vascular component to MS is irrefutable.