12/12/11 Conclusive Evidence


A quick break on some sandy terrain

Those who follow this blog know I spend a lot of time on the trails riding my KTM, and this weekend was no different.  Saturday I rode with Kathy and Jake on their quads, and Sunday I was out with my friend on his Yamaha.  I wasn't really too in tune with how much I've improved on the bike until Sunday when we rode some 65 miles on a wide range of terrain types.  At about 50 miles into the ride, my legs were just exhausted.  Gone.  Done.  For the last 15 miles, the ride was significanty more difficult and I became a spectator on my bike.  Let me explain.

When I first got the bike last year, my legs were weak but improving after my first CCSVI.  I was also brand new to riding, and obviously not very good at it.  Accordingly, I didn't have a very good gauge on my progress either as a rider, or more importantly, on my disease.  Then my left jugular began to clot and I went into the hospital in February, coming out after 10 days and on Coumadin (off that stuff now).  My legs were ridiculously weak by then, but I wanted to ride to get out and enjoy.  I fell off so often it was not funny, except it really actually was funny - at least to everyone else.  Most people think of falling off a motorcycle as quite an injury threat, but most of my falls were more like no-leg tipovers when I lost momentum and couldn't get a leg out to save myself.  All my riding buddies talk about how slow motion and animated my falls are as they laugh at me.

Over the past couple of months, my riding has really improved.  I'm not afraid of the sand anymore, my cornering has improved immensely, especially in the soft stuff, and I seem to just charge up most of the hills without too much trouble.  That is, until mile 50 yesterday.  After some amazing scenery and terrain of every imagine, we hit the whoop section (skiers would call these moguls).  I tried to work my way through them as I had the rest of the day, but that was it for standing up on the pegs.  As I said above, the legs were gone.  I had to sit down for most of the rest of the ride, and suddenly I was like a spectator on the back of a hay wagon.  I suddenyl started falling in the ruts more and slogging through the sand like I was back earlier in the year.  And suddenly it was clear to me.  I have improved as a rider, and more importantly, my legs are stronger.

One of the reasons I love the bike so much as a form of exercise is because for the most part my feet stay on the footpegs in one place.  The rubber on the bottom of the boots stick onto the serrated pegs, and all my adduction and abduction issues subside, leaving me with overall leg strength to manage.  Sunday became 100% clear that my legs are so much stronger and I'm a better rider to prove it because my legs are helping with turns, bumps, whoops, weight shift, and all of the other things legs do on a bike.  The first 50 miles I had strength, and the last 15 I didn't.  It was conclusive, obvious, powerful, and quite exhilarating. 

We got back to the truck and my riding buddy had to peel me off my bike and I had to sit down for a good half hour before I could even stand up.  We then loaded up and headed home, and I felt empowered that another little step in my recovery seemed at hand. 

11/28/11 Bedwetter no more?

Quite possibly one of the most emasculating and embarassing things about having MS for me is the loss of bladder control.  I have almost all of the urinary problems people describe: frequency, urgency, incomplete emptying, dribbling, inability to go, starting and stopping, no bladder pressure, and of course, loss of nocturnal control, aka bedwetting.  Perhaps one of the most motivating things about having had a CCSVI procedure (and the subsequent vein reconstruction) are the little victories that seem to come along every now and again. 

I've never really posted about one of my MS problems because I assume most MS people know of this to be an issue and also because a 45 (now 46) year old man shouldn't be dealing with the inability to wake up before peeing in the bed at night.  But I do.  For about 3-4 years now, somewhere in there anyway, I started having to go to bed with a diaper.  I could beat around the bush and call it an adult undergarment, but let's call a spade a spade - I've been sleeping with diapers to try and keep my wife from divorcing me over having to wash the sheets every day.  I was treating my bed like a dog treats a fire hydrant almost nightly.  First few times it happened was a shock followed by some intense anger, disbelief, and worry.  It's hard to feel sexy and wanted waking up in the middle of the night in a puddle the size of a bathtub, fetching a giant beach towel to mop some of it up as I lay awake wondering why my life has gone this way.  It's emasculating as anything I can imagine.

The good news is, since my vein reconstruction on August 12th, I seem to have this one beat.  No incidents for a good 3 months now so I decided to go out on a limb and write about it.  I'm back to sleeping in my normal bedroom garb (I'll try to keep that vague for decorum purposes - no need to ruin anyone's appetite), and I wake up one or two times a night to get some relief, then wake up in the morning without foul or foam.  Kind of a nice feeling, actually.  A far cry from waking up every hour - 6-8 times a night - in soaking wet sheets and spending day after day exhausted.  It just wasn't a great day when I finally went to Walmart to pick up the product......

Anyway, not to belabor the point in a weird subject, I see this as another little sign that perhaps I'm moving toward the right direction in terms of my overall progress.  Remember, my goal is to say I HAD MS, not have it, and things like this help me in my pursuit.  Perhaps writing about it will help keep someone motivated to do what's necessary to keep the jugular veins open and circulating well. 

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.

9/26/11 6 weeks are up, time to get going

Last Friday was 6 weeks postop.  The neurologists are happy and Dr. Stone, my vascular surgeon, says we're good to go bungee jumping if I want to.  Now, I'm not so sure about literally jumping off a bridge attached by nothing more than a shock cord, but I do have some items on the agenda to get rolling here.  First up this weekend was a little motorcycle riding.  A group of people we know rented out the Sandy Valley Motocross track on Saturday night for a birthday party, so I thought that would be a good time and place to start the exercise.  

While the 23 year olds and others with some skill jumped their way around the track, I putted around as best I could given a 6 week postop absence of activity.  I rode both my 525 dual sport and my 300 2-stroke (both KTM's of course), to just see what the differences and similarities were.  The 300 is so much lighter and handles the ruts betters, but the 525 just has so much more torque for getting going on the low end.  I got about 30 laps in for about 90 minutes of exercise.  It felt good.  I sweated quite a bit and it felt great to just get out and do something physical.  

Sunday came and my arms and neck were really tired and sore, so I guess that's a good thing.

Got up this morning and rode the stationary bike for 20 minutes then walked down the street for about 2000 feet.  In the past, after the bike I have had to sit down and get some strength back, but today I could do both reasonably well.  I still have some wounds in my leg not healed yet though.  Of the 15 incision areas, I still have 3 that haven't quite healed, so I'm not free to hit the pool yet, but I am looking forward to that too.  

For the next few weeks the goal is to get off the Pradaxa anticoagulant (3 months postop) and slowly get some exercise going, then when the wounds are healed, increase the pace.  I'm sure when the Pradaxa is out of my system the healing will increase even more, especially the wounds.  

9/21/11 Shock the Neurologist

Mayo Hospital from above

I went to the Mayo Clinic yesterday for a follow up with Dr. Wingerchuck, my neurologist.  We're now about 5 1/2 weeks postop and he wanted to see how I was doing from a neurological standpoint.  I gave him the discussion about the surgery lag still a little on me and all the wounds and stitches haven't healed yet, but he wanted to see how I was progressing - or IF I was progressing. 

Both Dr. Wingerchuck and his fellow put me through the standard tests.  Eyes, hands, etc.  When they got to the left leg, which has been the weaker one, they were both taken aback.  I can lift my thigh up from seated position, extend my lower leg from seated position, and hold my foot up when resisted downward all significantly better than before.  I also walked for them and they noticed a significant improvement in my gait.

Dr. Wingerchuck would be a great poker player.  His demeanor is tough to crack.  He's a serious, educated doctor with enormous credentials who understands the disease as well as anyone, and he doesn't get too excited about things.  So to get any reaction from him is significant, and he clearly acknowledged I was improved.  It was quite a moment for me. 
I asked them for a report to get to me as soon as possible so I can restore my pilot medical, which they said they'd do.  But I also asked them to really look into the CCSVI phenomenon from a number of different angles.  I reminded them of all the people from Canada and the US who are travelling overseas for a chance to see results like I have, and that the doctors in some places are refusing to address it.  I told him that, at least based on my results, that the relationship between vascular circulation and neurological symptoms is real, which he agreed, but Dr. Wingerchuck appropriately replied by stating it was his job to be one of the skeptics about these things, and that further studies were needed.  I agreed, but said to him that Mayo Clinic is one of the few places in the world that could bring this to the mainstream. 

In any event, back to my condition.  I walked a bunch yesterday and my leg worked quite well. 

It's amazing what the slightest improvements do for the psyche.  Hope goes a long way in this world, and for me to know unconditionally that I have turned the corner in my battle makes my life carry that much more meaning and significance.  Family and friends love me anyway, but this is about my personal battle, and when I feel progress, I feel hope, and that hope turns to confidence.  I so wish for others with this disease to be able to feel it.

9/14/11 Still some Surgery Lag, but doing well

Feeling quite good the past few days.  4 poops in 2 days, none assisted, is good.  I'm about 4 1/2 weeks postop now and of that 30-odd days, I have not had to use any form of assistance for 27 or 28 of them, so there is definitely no placebo effect on this part. 

My scars are healing......all 17 of them (15 in the leg, 2 in the neck), pretty nicely.  There are a couple taking longer because every time I walk it tugs on the area a bit more than the others so they clearly won't heal up as quick. 

Walking is better, breathing remains excellent, heart in check, poop better.  Only thing is the urination which has essentially no change, though it does feel now and again that the pressure is better and I'm holding more between visits.  That one's a little tougher to quantify, so I won't call that yet. 

It's so strange thinking about why blood flow would help this.  It makes me think about what MS lesions are.  Are they living and growing or are they dying pieces of the myelin sheath?  I theorize they are dying parts of the myelin as a result of a lack of oxygen perfusion due to blood stagnancy. CCSVI could possibly be renamed to CCSVS with the last "S" meaning "stagnancy."

Oxygen perfuses every millimeter of our bodies which is one reason the arterial side of our circulatory system is under such pressure. It is to ensure the oxygen delivery to the furthest reaches of our bodies from the fingers and toes to our brains. The key to this theory is the high pressure perfusion is complimented by the low pressure recovery of the deoxygenated blood. As the oxygenated blood is fully delivered to the far reaches there is a brief moment where is goes from high pressure to low pressure as all of the oxygen is released into the organ. At this point the blood is merely a carrier of the spent, deoxygenated blood to return it to the heart/lung system for reoxygenation

Stagnancy in the short term is not a problem. Veins have a unique collection and delivery system that allows the body to function and divert even when blocked. But long term stagnancy of venous blood in areas of the body especially the brain leads to the gradual decline in functioning and health of the organ that needs oxygen to survive over time.

Following this theory, in the case of MS that stagnancy over time leads to the degradation of the nerve and myelin coating. Because MS symptoms are so random in nature and the affected nerve may control anything from the legs to bowels to arms to vision, the oxygen disruption could happen anywhere within the brain barrier leading to the nerves.  Why random?  Nerves are microscopic and any one or combination can be affected by the stagnant, deoxygenated blood.

In the meantime, I'm just happy I'm improving......can't wait for all the scars to heal so I can get back to exercising. 


8/29/11 Recovery Continues

Last Tuesday we drove back down to Phoenix to meet with Dr. Stone and do all the post-op normalities.  First up was the all important Doppler to ensure my veins were open and flowing.  Having been through this test several times, I laid on the table and tilted my head to both accept the transducer and to see the monitor.  I could tell almost instantly that blood was flowing, perhaps even gushing, through the new vein.  The technician had a little difficulty identifying the connection points at the top and bottom of the graft, so she had to go and get some help form the radiologist.  As she left the room, I closed my eyes and thought this might be the beginning of the end of this ordeal.  I texted Kathy who was out in the waiting room, and I felt so relieved and so hopeful that Dr. Stone and this team might, just might, have cleared the path for my health.  

I gathered my composure as the technician came back into the room, and she completed a few more tests on me.  I got up, and Kathy and I walked somewhat in a daze to the car.  Was this really happening?  Was something positive being confirmed?  We felt a lot of joy and hope as we drove to the second appointment which was to meet Dr. Stone at his office.

We were quite early, but we checked in anyway just in case the Dr. was available.  Soon we were chatting with him about how my veins were flowing freely, and he was quick to ask about my MS symptoms.  I told him that my gait was improved, I was moving my bowels better, no morning headaches, no cog fog, balance was improved, and it seemed my intolerance for heat was improved.  It was 116 degrees in Phoenix that day so I think that test was legitimate.

Then Dr. Stone and I turned to another topic...namely the Mayo Clinic becoming more of a leader in the CCSVI studies.  Dr. Stone told me that although he's done hundreds of vein reconstructions before for patients and it's a well established surgery, this was his first known case for Mayo Clinic performing it for the purpose of improving MS symptoms.  He was genuinely curious and deep in thought, perhaps even taken aback by the improvements I was reporting in just 11 days since the surgery.  

I told Dr. Stone this wasn't placebo.  I told him I know what I can and can't do.  I told him again that I was a baseball player and I've always been very in tune with my body and I don't fake symptoms or wish for improvements.  I reminded him I only used the pain button right after surgery for about 3 hours, then the nurses came and removed the narcotics bag from my IV as they realized I didn't need it.  I took no pain medications on leaving the hospital.  Yes I have aches and pains from the surgery but nothing I couldn't tolerate.  I think I am very honest in assessing my symptoms, and they either have improved or they haven't.  He took it all in and engaged me in meaningful discussion about both me and the idea of other MS patients benefitting.  We even talked about the idea of ALS, Parkinson's and other neurological challenged people benefitting from the potential relationship between the vascular and neurological divisions of the body.  Dr. Stone told me he would have the Mayo Clinic's media department contact me for an interview, and he also told me he wanted me to go back to Dr. Wingerchuck for a full workup in my functions so as to establish a baseline as I recover from surgery and into the future.  He really was quite curious about it, but of course reminded me he was a vascular surgeon and there likely wouldn't be any involvement from him unless there were any problems with my new vein or my leg's missing one.  

We departed and drove home, feeling really good about the future.  We felt like we caught a break.  We decided to go to our cabin near Yosemite for the weekend, which we just returned from.  It was a little achy and challenging driving 8 hours up and back, and I seemed to develop a bit of an infection in a couple of the surgery wounds, but I'm on antibiotics for a week or so and it seems to have knocked that out.  I'm getting up and walking a fair amount in each day, still spending a lot of time with my leg in the air when seated.  Of the 15 leg incisions, 13 of them are almost completely healed, while two are having a couple of issues, mostly because they are in tug spots when walking (top of the calf and in the quad/hamstring area).  The neck incisions are doing really well.  

I am on restrictions until 9/23, 6 weeks post op.  Walking only, no swimming or exerting myself.    

8/18/11 We Added Videos

Thanks to my 13 year old son, Jake, we have uploaded the videos of this journey to the blog.  Most of the footage is from October of last year, just before and just after the first CCSVI surgery on October 26, 2010.  I was so thrilled with the results initially, but this incessant clotting of the left jugular has been an unbelievable trying and frustrating time.  Every time I had a procedure done to open the vein, it would improve my symptoms just like those seen these videos.

I didn't take much video during the period of clotting, i.e. January through August this year, because it was always the same thing....feel better for a day or a week, then experience the let down of a re-clot.  Now that my vein has been reconstructed and we're hoping like crazy that this one took (heading back next week for the follow up), we did a video yesterday after this amazing major surgery.  I was weak in the 8/17 video, but I managed to walk 2000 feet in our neighborhood and get footage of my improved gait.  It is readily apparent that my walking has improved.  Just compare it to the videos of before October 25, 2010.

For me, there is absolutely no question as to the correlation between having flowing, circulating blood, and improved symptoms.  Some who have done the CCSVI may not have experienced this, but we often question how many people have re-stenosed, clotted, re-clotted, etc.

Enjoy the videos.  Now that Jake has figured this out for me, we'll add new ones as we continue to recover from the last surgery.  You have no idea how much I want this to be the last one I have to go through and I can get to more healing.

8/17/11 Made it Home

Woke up this morning with a wine glass in my hand.....who's wine, what wine, where the hell did I dine?  Must have been a dream.  I don't believe where I've been.  Come on, let's do it again...

Frampton's song notwithstanding, the surreal nature of this journey continues.  A few years ago, we moved to Las Vegas.  I was a little overweight, but otherwise healthy and strong, and building a little empire in real estate.  We had a young healthy child who was smart and fun to be with, and we owned a nice home.  We've been fortunate in the home and the child department, and our business continues to survive, but it is just impossible to explain all this MS mishmosh.  Read my blog posts from back in October 2010.  I was in healing mode.  I improved, my legs were moving me around, and I felt CCSVI was the answer to the MS world. 

Then the clotting of the jugular took place and my symptoms came back.  We tried numerous times to re-open the left jugular, including a 10 day stint in the hospital back in February and numerous trips to LA to see Dr. Arata who repeatedly got me in on a priority basis to help do his part.

We then get the idea to go back to Mayo Clinic and see what they could offer.  A trip there for a course of tPA and a stent within the stent was attempted and failed, so it brings me to today's post.  I woke up after dreaming I was a normal person, a dream I have pretty often.  I looked at my neck and leg, both of which look like I was in a gang fight.  Yesterday's drive home from Phoenix was a grueling, 7 hour ride where we had to stop several times to get out and walk around.  I hurt, I ache, and I wonder what happened to me again and again.  Is this really happening?

Yes, it is.  I just went through a surgery in which 4 world class Mayo Clinic surgeons worked on me, 2 on the leg and 2 on the neck, for 4 1/2 hours.  They removed the Saphenous vein from my left leg, fileted it and reconfigured it, then popped it back into my neck, somehow managing to not cut any other nerves, arteries, or just cutting my whole head off.

I last remember them prepping me in the operating room, and I remember there were some ten or so people doing things to get me ready.  I think I asked the anesthesiologist if he added something to my IV because I was starting to feel out of it.  He responded yes and I woke up some 9 or 10 hours later in my room with a pile of nurses looming around me, setting me up with things I guess I needed. 

Kathy and Jake were in the room and I soon learned the procedure was the "easier" of the two, meaning they were happy enough with the subclavean vein to not have to crack open my chest and run the new line into the SVC by my heart.  I was prepared for that, but as I mentioned before, I was pretty relieved we didn't have to do that. 

So there I was in the room, pushing the pain button from about 5 until 7:30 pm or so, and I fell asleep until about 11pm.  When I woke up, the anesthesia began to wear off, and I could feel my breathing was easier.  I wondered if, after all this, my new vein was open and flowing blood.  I layed awake all night, all the next day, the next night and day, watching TV (Michele Bachman won the Iowa Straw Poll.......saw that about 600 times), drifting in and out of various states of awareness, constantly wondering if this surgery would be successful and if my MS symptoms would obtain any relief.  In all, I was awake in the hospital about 48-50 hours after the surgery.

Dr. Stone came in Saturday morning and told me all about the procedure.  To him, it was another day at the beach, and he kept telling me he was just glad things were improving and I was ok.  He did admit that stitching up my vein in the new spiral to get the diameter they wanted was a bit tedious, taking a couple of hours of fine needlepoint.  Then he grabbed a portable Doppler unit and put it at the base of my neck, just to make sure blood was flowing through his new vein.  He was confident it was flowing, but to me, hearing the blood flow through after all these tries was sweet music to my ears.

The second night was a little weird too.  I layed awake again, and I was somehow becoming delerious, because I just didn't know what I wanted.  The nurse kept coming in and asking me, but I didn't know.  I was just out of it, and couldn't make a decision on something to drink, much less if I wanted a pillow.  I layed there, and at one point I realized I had no pee bottle, so for the remainder of the night I just peed all over myself.

In the morning, still wide awake, the same nurse came in and realized I had done this, and she kept asking me why I didn't tell her what I needed.  I never had an answer, and I eventually just broke down, started crying my eyes out,  telling her I used to be so capable, and I just hate asking people to do things for me when I feel I should be able to do them myself.  She called for help and soon my bed and my filthy, urine and sweat soaked body were cleaned up and I was sitting in a chair listening to yet another Doppler of my blood flowing out of the bottom of my neck.  More music to my ears.

Eventually I snapped out of my pity party and I started to take little cat naps throughout the day and began to walk around the nurse station a couple of times a day, and I began to realize my balance felt like it did back in October after CCSVI #1.  I was weak and felt like a train wreck, but I could tell those signals between the head and feet were working and I felt more stable.  I felt hope.  I felt there was a chance this worked.

I was discharged Monday afternoon about 4:00pm after some incredible care by the nurses and being visited by numerous doctors who all had a real interest in this surgery.  We stayed in Phoenix for the night and drove home yesterday, some 7 or so hours with lots of stops to get out and walk around.  We went to Chili's for dinner last night, and came home to a night of real sleep, which felt so good.

As I awoke this morning, I thought about this as something beyond me.  Sure I was and still am hurting, but I'm in recovery now and it's just something I have to bear down and deal with.  But more importantly, it was becoming clear that the CCSVI/MS link is gaining some traction, even at Mayo Clinic.  I don't know for sure, but I think I am their first, if not among their first, to have a vein reconstruction done at Mayo for this purpose.  They agreed to do my procedure because I had clearly demonstrated relief of my symptoms from all the other procedures, even if only for a day prior to a reclog.  This is the first I've heard of this type of procedure being done for the purpose of improving an MS patient symptoms, instead of calling it treatment for CCSVI.

So as I continue to digest the magnitude of all I have been through in the past few days, weeks, months and years in this disease, part of my recovery is made bearable by knowing I might have been a part of the future for MS patients getting CCSVI treatment in the open, instead of having to go underground because of the controversy surrounding it.

8/13/11 Finally a Break - Chest Remained Intact

People, myself included, generally think of the Mayo Clinic as a place for really sick people. And while that is probably a well founded stereotype, it sure is hard to beat for top quality care. I can't think of a single aspect of this visit that didn't completely obliterate so many other facilities. From the important things, like finding out it took 4 surgeons 4 1/2 hours to complete my procedure and also learning they liked my subclavean vein enough to graft there instead of having to cut open my chest to the little things like having a second bag for your shoes so as to avoid dirtying your clothes stuffing it all into one bag, this experience was phenomenal.

I first learned about the chest remaining intact as I started to wake up. The relief I felt was just huge. Though prepared for it, learning I didn't have to go this one major last step was unreal. It's also a real testament to Mayo and their approach. As one of the surgeons who busted me post-op said, "if you're going to give carte blanche authority to a surgeon, you want it to be here." Well said, I thought.


8/11/11 Pre-ops good, cleared to cut

Thursday I went through all my pre-op visits such as the anesthesia consult, chest xray, labs, the leg vein mapping, and the last visit with Dr. Stone. All cleared and good to go.

The surgery is simple enough: cut my neck open and take a look at the size and condition of my veins, then slice open my left leg and steal the greater saphenous vein. Then filet the vein and wrap it around a metal rod in a spiral (a bit like a paper towel tube) so as to increase the diameter, then reinsert the new, wider vein back into my neck. Simple enough for me-I just am scheduled to lay there while these guys do it all.

One last thing......if the vein below the jugular (the subclavean) isn't good enough to tie into (i.e. Not big enough, then there will be an added step of cutting my chest open to reinsert the jugular directly into the Superior Vena Cava just before the atrium. Awesome. Hope we get to do that extra step just so I can say I fully experienced this.

8/9/11 Let's see if I can make this harder

Surgery is Friday the 12th. It's quite an involved surgery so I thought it would be good to exercise everyday until I leave for Phoenix Wednesday night. So I rode a 80-90 miles over 2 rides on Saturday and another 50-60 Sunday. I took the bike to work Monday. We got to our old standby spot at Eagle Ranch for a quick run down the power line trail. One of my riding buddies couldn't make it and another fell over the weekend so it was a perfect set up for a nice easy cruise down the trail.

About 30 minutes into the ride I was rounding a corner and a fairly large boulder came up quickly. Bang went the front wheel and boom went the back. Soon I was flying and coming to the realization it wasn't controlled flight. Impact was swift and the gear did it's job, but my right shoulder was hurting pretty bad.

We quickly realized I wasn't going to be able to ride out so we called for help. By midnight I was home sleeping on the couch with my arm not moving too well.

Just what I needed. Separated shoulder to add to the challenge. Oh well, I guess this will help keep me from trying to get back on the bike too quickly after surgery.

7/29/11 Will #10 finally do it?

Just got discharged from attempt #9, and suffice it to say it didn't work. Dr Stone at Mayo Clinic thought it might be a longshot to clear my clot and install a covered/lined stent. Turns out it was. I flew commercially to Phoenix and stayed the night on Wednesday. Thursday morning I rolled into the interventional radiology unit for insertion of another course of TPA similar to what we did in hospital back in February. The difference was the catheter used also had a ultrasound built into it and the theory was the TPA and ultrasound combined would knock out the clot, giving a clear path for the stent within a stent.

This morning, after a long night laying still so as to not disrupt the catheter, I got into the IR unit. The ultrasound product rep, the nurses, the doctors, and of course I were all looking to see some nice blood flow and a stent clear of the clot. No dice. Clot was hard and didn't budge at all. Not a bit. None.

I returned to my room where Dr. told me we needed to move up to the graft and bypass we talked about 2 weeks ago. I was discharged and told to expect calls next week from the scheduling dept.

Disappointed? Yep. Mad? A little. Nervous about a major surgery? Yep. Not sure what to say or do. It's so obvious my future isn't pretty if I don't do it. The collaterals were rampant around the stent this time and it probably won't take long for more lesions to develop if I don't get the blood draining soon. The good news about all this is Dr. Stone really seems to get it, says the probability of success is high, and he will make this a priority and get me in soon.

Indeed, let's hope the tenth time is a charm.

7/27/11 Here comes #9

Heading down to Mayo soon for attempt #9 to clear my left jugular.  Dr. William Stone has researched it, consulted with colleagues, and has agreed to try and clear the left jugular with a course of TPA followed by a lined stent placement.  If that works, we might be through this 9-10 month ordeal and I can get on with the next step of dealing with this disease.  If not, I'm looking at a more radical vein graft.

Will report as it comes to light.....

7/10/11 Mayo for another look

On Friday, July 7th, Kathy, Jake and I headed down to Phoenix for a consult with Dr. Stone in the Vascular Department Specialty Clinic at Mayo.  Specifically, we visited the venous malformation clinic.  You see, after 8 attempts to keep my veins open and finding the left jugular clogged yet again, we felt it might be time to get another opinion on how to proceed.

We went to Mayo for several reasons:
1) Each CCSVI procedure provided relief in numerous areas
2) Mayo Clinic is becoming more and more open to the CCSVI theory
3) I'm already a well established patient at Mayo
4) Second opinion is a prudent thing, especially when complications keep arising

Let's be clear.  Dr. Arata at Pacific Interventional/Synergy is a great doctor and I am forever grateful to him for all he has done for me.  He first diagnosed my stenosed veins, he opened them the first time giving me a real sense of liberation, and he agreed to keep working with me despite his busy practice doing this for many other people.  He's squeezed me in on short notice, answered my emails, taken my calls, and diligently performed the surgeries, each of which had results.  I just need another set of eyes and brains to help get through the repeated complications of a repeated, chronic thrombosis of the left internal jugular, and I can't think of many places better to go than the Mayo Clinic.  I will remain in touch with Dr. Arata when we decide what to do at Mayo.

Kathy made the call for me earlier this week and we got an appointment for 1:00 on Friday.  As is always the case with Mayo Clinic, they always let you know of changes in schedule, and we got a call Thursday to change the appointment to Friday at 2:00 because Dr. Stone would be in a surgery and they wanted to be sure he would be out and ready to meet.  Appointments at Mayo Clinic are sacred, and they  actually value a patient's time, unlike many doctors in Las Vegas and other cities who cram as many patients in as possible and could give a rip if you have to wait.

We met with Dr. Stone, a vascular surgeon.  When he came into the room, he already had reviewed my whole case, reviewed the CD's that had been uploaded into their system from my last visit in April, and started asking me questions.  In a 30 minute consult, we had some direction.  Dr. Stone was highly complimentary of Dr. Arata's work as he viewed all the films of my previous angioplasties.

After some discussion, Dr. Stone came up with two solutions.  The first was to add a lined stent inside the existing one, and have it done the same way as the previous interventional procedures.  A lined stent may allow the endothelium to build up without clotting.  The second solution was to do a vein graft from one out of my leg and parallel it into the superior vena cava.  This method is considerably more radical, and will require a 6 hour operation with a week of recovery.

We opted for the lined stent first, and if that fails, go to the graft.  Dr. Stone said he would do some research and consult with his colleagues, and call me this week for scheduling and/or further discussion.  We will also see the Mayo hemotologist for a second possibility that something in my blood is causing the clotting.  We agreed this ws less likely given the right and azygos have never clotted since the first procedure back in October.

After the appointment, we checked into the hotel, had a nice dinner, and felt once again hopeful and optimistic that we might get all my veins open for maximum opportunity to recover.

6/18/11 Intervention #8

On June 3rd, we arranged a call with Dr. Arata to check on my progress.  I told the doc that I was doing quite well in a couple of main areas, namely the bowel and bladder.  I told him I was feeling the bowel waste in the colon a little better, thus being better able to avoid accidents, and that the bladder was beginning to feel like it was pumping out the urine instead of just dribbling out like it has for some time.  I also told him my recent motorcycle fall was impeding my leg progress a bit, but my knee was healing, yielding to my “normal” leg weakness.  We agreed it was time to order up the Doppler, and he had the staff fax over the order to Red Rock Radiology here in Las Vegas.
On the 9th, last Thursday, I went to see the same technician at the radiologist, and checked the flow.  Strangely, though I felt better the prior week and was reporting accurately to Dr. Arata, I sensed that those benefits had waned somewhat, and I had a funny feeling that the left jugular that had been giving me so much problem was clogged again. 
A quick placement of the ultrasound head confirmed it.  99+% clogged.  It was worse actually than the last Doppler test that was showing only about a 75% or so occlusion.  The technician said the blood flow was “just a trickle,” and it was confirmed in an instant that my progress was delayed yet again.
People ask me why I keep doing this and why it’s so important to get the veins open.  It’s a good question, really.  I’m not obsessed over it, nor a glutton for punishment.  I am following a theory with a specific purpose, because I have seen the future for me as an MS patient and I don’t like it.  I've also felt the benefits of the CCSVI surgery.  Remember, it isn’t life threatening having a clogged jugular vein like it is with a clogged artery, but the whole point behind the theory of CCSVI is to maximize the blood flow return from the head through the jugulars with no impediment.  This in turn removes eddy currents and also removes the refluxing condition and iron deposits that have led to the formation of the lesions, or so goes the theory.  If one doesn’t buy into that theory, the whole process is a waste of time.  Anything less than maximum, unobstructed blood flow defeats the purpose, even though doctors will repeatedly tell patients that individual veins are not important like arteries because the blood will always find another path.   
And while this is indeed true for a “normal” person, in order for there to be any benefit from the CCSVI process, one has to remove conventional thinking about veins’ inherent ability to re-route deoxygenated blood back to the heart, and think of the veins as an equally important blood route as the arteries. When this thinking is applied, one can isolate the disease from the body, and specific things can be done to promote healing.  CCSVI, in theory, removes the MS disease environment from the body so a person and his or her doctors can turn their focus to the remaining lesions and symptoms.  I see it as analogous to a fire burning through a forest, causing charring on trees and plant life.  Think of the trees as your spine or brain.  The fire comes through, and the trees that survive are charred to various degrees.  Eventually nature or the forest service, or some combination therein, puts the fire out, but the damage is left behind.  In MS, if we put the fire (disease) out, we turn to healing the charred areas (lesions).  We know that all cells on the body will eventually regenerate, but we can’t heal if we’re in an active disease, just as a tree can’t heal when it’s on fire. 


If a person goes for a CCSVI procedure with an expectation that they will be cured immediately, they will likely be disappointed.  But if a person gets a CCSVI procedure with the idea that they are extinguishing the fire and then begin the healing process by other natural means, namely the delivery of oxygen-rich blood.  Anything less than this thinking will not allow for any benefit, will not change the environment that has allowed the lesions to happen, and will not allow for healing. 
Fast forward to yesterday, Friday June 17.  The doctors and staff at Pacific Interventionalists managed to squeeze me in (they are really busy, more on that later) and I was the last surgery in the center yesterday.  As a known vaso-vagler (I have passed out in prior CCSVI surgeries so they’re getting to know me there), a few modifications to my sedatives were given and I tolerated everything well.  Dr. Arata rooted out the left jugular once again, then checked the right and azygos, which remain open and flowing well.  The surgery took about 45 minutes this time, most of which was spent getting the catheter through the clog. 
Something about the trip just felt right this time.  It seemed the surgery itself flowed better, I was much more alert when it was done, and I felt a few immediate results.  At dinner a couple of hours later, Kathy, Jake and I all found I could handle a few stairs without the handrail, something that was not possible just a few hours prior. 
As has been typical for me following these surgeries, I spent the night waking up to go to the bathroom numerous times as my body removed excess fluids and toxins.  I write this the following morning and I feel pretty good.  My left knee still hurts a bit from the bike fall, but overall it feels like some progress, so now the monitoring shall begin.  Previous post surgical anticoagulants have been Lovenox and/or Coumadin which didn't seem to have worked too well, so this time we’re going to try and keep the veins open with Pradaxa.  Let's hope #9 isn't in the cards.


P.S. This is a video of me going up some stairs after the surgery:


6/1/11 Forgot to mention the heart!

I forgot to mention my heart in the last post.  For about 6-8 weeks now, my heart has been in sinus rhythm and working beautifully well.  Even in Big Bear, at the high elevations, and even with a few drinks like beer now and again.  Exercise and diet still important, but I think somewhere in there the combination of upping the magnesium and lowering the calcium, and some recovery time since my extended stay in the hospital back in February has done well.  I think the blood flow has improved so there is a reduced loss of atrial preload.  Whatever the reason, I am so much more productive and positive with my heart working properly lately and my attitude toward recovery is so much more positive.

We're seriously looking into the hyperbaric chambers, and we are becoming more hopeful that the CCSVI and HBOT combination will keep me moving in the right direction.

6/1/11 Some Improvement and an Accident

April 28th I went on had CCSVI #7.  It was a Thursday, so Kathy and I did our standard Vegas to LA trek on Wednesday night, stayed at the Ayers Hotel, and I watched her eat breakfast the following morning as I went on the usual pre-surgery starvation routine.  We got to the Renaissance Surgery Center early and we were whisked in fairly quickly.  I really like the consolidation that Pacific Interventional has done, offices on the 3rd floor and the surgery center on the first.  It's convenient and quite streamlined.

My blockage in the left jugular was about 30% or so, and right and azygos still flowing nicely.  There seems to be something about the left jugular, though, in that it wants to clog and also seems to have the more profound effect on my condition overall.  We feel it's quite important to get this one open for good.

Procedure was easy this time (remember how awful January 27 was when it was 100% occluded), and I was in and out in about 2 hours.  Dr. Arata was so cool and ambivalent (not sure if that's the right word or not), almost if to say, "hey, no problem, you've been through alot, but this is the thing to do and I'm here for you."  We joked around a little in pre-op, and he spent some time with Kathy out in the waiting room when we were done.

As has happened every time the veins were opened, the symptom reaction was immediate.  We got into the car and Kathy drove, and I immediately noticed it was easier to keep my left leg in the normal seated position around corners instead of having trouble holding it from falling sideways.  Still groggy form the procedure, Kathy drove us, and we decided to stop and see our friends in Big Bear who were spending the week at their cabin.  Just two hours of driving and resting in the mountains seemed the better option than driving all the way home.

Woke up the following morning and found overall improvement, but not to the level of the original surgery October 26th.  Though a little disappointing, I was overall pleased that I felt I had finally hit the bottom and was heading back up in terms of overall recovery.

Our friends were in the process of selecting a contractor to paint their Big Bear cabin, so I offered to help in that process, and to also return to Big Bear in May to supervise the painting crew.  We concocted a plan to ride our dirt bikes May 18 through 21, checking on the painters' progress at the end of each day.

May 18 was a nice ride, but I fell over about 15 times because of the weakness in my legs and the difficulty in the terrain.  The 19th was a little better at about 5 falls, and I was doing really well on the 20th as we rode along Fire Road 2N10 on the South side of Big Bear.  It was beautiful, the terrain was nice, traction was excellent, and we rode for 3-4 hours for our third day in a row.

We met a game warden along the trail and talked to him for awhile about the forest and the trails (we're street legal so these roads are just fine for us), but somehow that 30-45 minutes stop stiffened me up.  As we headed back out to finish up the ride, I hit the brakes to round a corner as I had done all day, only this time the back end slid out and next thing I knew I was on the ground, knee and hip joint writhing in pain.  My friends helped me up, but I knew I'd hurt my leg pretty badly.  I got back on to my bike and we rode back to the cabin, just a couple miles away, and assessed the situation.

It didn't seem that anything was broken, but the medial side of my knee was very tender and sore.  We went to Walgreens and picked up some pain killers and called it a night.

The next day I could hardly walk, move, or otherwise.  I was feeling pretty roughed up, but we loaded the bikes into the trailer and headed for Arrowhead to find an easy trail to ride.  My friends helped me onto my bike, and we did a test ride down an easy trail, and as we came up to a river crossing, I realized there was no way I could make that.  the riding I could manage, but my leg was so tender and weak that any fall to my left side would probably have extended the injury further, so we packed it up and headed back to Lake Arrowhead for some lunch at the taco stand overlooking the lake.

Kathy ordered some good knee braces for me and I've been using one for my left leg for the past week, along with a crutch to keep the pressure off.  This morning I went swimming for the first time, and it feels a little sore and weak, but I was able to swim and move a little better than I thought I would.  So for now, it seems I just had a bad strain.  If it doesn't get better, of course I'll have to go see the doctor and see what we've got, but for now, it seems to be improving daily.

It's such a strange feeling.  Here I have this disease, but I have to keep trying to do everything I can do, including risking major injury on the bike, to live as normal a life I possibly can.  The KTM 525 dirt bike makes me feel so normal, so alive, so capable, something I haven't felt for months, even years, as my legs have deteriorated, and the risk is so worth it.  I'm not a crazy rider, jumping and flying around.  I'm a trail rider, and I love the views that the world's fastest power scooter can take me up to.  The other thing is hobbling around with a knee brace and a crutch from a motorcycle accident is a heck of a lot better feeling than trying to understand why some stupid lesions in my head cause me so much grief.  I can focus on healing from an injury as I have so many times, but this disease is just something else.

It's coming up on 6 weeks since post op #7, so it will soon be time to get a Doppler to see if the left jug is staying open, and hopefully I can get off this Coumadin and begin the recovery in earnest.  

4/5/11 Mayo clinic Follow Up and a plan.....

I had my blood drawn again the other day and the platelet level is back up to the 190 range.  I am kind of thinking the 71 reading was an error in the lab or the sample, or some kind of anomaly such as taking CoQ10 for a week or so, which we learned can react adversely with Warfarin.  OK, that's out of the way. 

Now we're on the plan to get consistent INR results and scheduling the next procedure to root out my restricted left internal jugular.  I am hoping we can do this one outpatient and feel some results right away.  So we're working on that.

Next up, my annual visit to the Mayo Clinic was on Monday.  I am having Mayo follow the progress of my disease for a few reasons, not the least of which was they diagnosed it when others couldn’t.  I also like to have this facility document my disease because I am quite convinced that when I overcome it through all we’re doing on CCSVI and nutrition and exercise, etc., there will be no question about the legitimacy of it.

The results of my brain MRI yesterday showed that there were no new lesions and none had enlarged.  Good news indeed.  Seems the diet and exercise and juicing has done something to hold that at bay for a few years.

Last year when I told my neurologist him I was considering CCSVI, he seemed quite opposed to it and told me I should only consider it in conjunction with the MS Society studies.  He didn’t outright say he was opposed, but I gleaned this from his reaction to a then relatively untested procedure.  He’s very educated, very polished and well respected in the MS community, and he wanted to see more evidence.

I think he got a lot of evidence this year, because he told me many of his patients had come to him with CCSVI procedures done.  Surprisingly, this year, he was warm to a few things.  First, he was warm to the idea that I had the CCSVI done and initially had good results.  He encouraged me to go ahead with our plan of raising my INR to therapeutic levels and then rooting it out so we can obtain whatever benefit we’re going to get.

Second, he was pleased that a doctor in the US with an existing vein care practice was now doing the CCSVI treatment.  We all know that the amount of science that is going overseas is astonishing, and he seemed to feel the data Pacific Interventional has collected would be legitimate and useable.  I told him all what I knew of Dr. Arata and their practice, and it seemed he was interested in speaking with them.  He certainly was interested in how things turn out once we get my jugular vein cleared.  

Third, he confirmed that if the environment was corrected by the CCSVI procedure and the blood brain barrier problem was resolved, my nerves and the myelin sheath may possibly regenerate over time and I could potentially reverse the disease and gain my functionality back.  Might take some time, and may not ever come 100%, but he said it was certainly possible.  When he said this, I was astounded.  I have had a thousand discussions with a lot of people about this, and that was the first time a doctor in the MS community suggested that I could potentially regain my prior functionality.  Quite a shift in mindset, I’d say.

So as I continue to struggle with my symptoms, I now run on some more hope that soon I'll be back to where I was in October after CCSVI #1, and if I can get back to that, this 3 or 4 month delay will be just fine.  Hassle now, fine later. 

3/30/11 The Doctor Parade

Spring Training........a much better thing
to do this time of year
Since I was having so many challenges after coming home from the hospital in February, I decided I should go see a local doctor to check on a few things.  The challenges include still not properly absorbing water which makes me feel dehydrated, my eyes dried out, and constipated all the time.  These, of course, on top of the inability to walk properly, having the bathroom problems, and my new great thrill in life, a heart that goes in an out of rhythm whenever it feels like it.  Sure, sitting here writing about it and anyone reading it seems to minimize the situation, but living with this crap, every minute of every day, is a joke.

And so a trip to the family doctor.  Discuss, review, assess, and draw blood.  Lab results a week later and another visit, then a referral to a caner clinic.  Nobody tells you the cancer clinic is also the hemotologist, which I was referred to because my platelets suddenly decided to go low.  After leaning out my shorts, I met with her yesterday.  This was a treat.  I tell her about my CCSVI experience and the idea that MS may be related to the incomplete return of blood way from the brain, and she listens with some interest.  I tell her about my A-fib and she listens.  I tell her I have no idea why I am visiting her, and that I figure there's a 99% chance that she'll have blood drawn but have no idea why my platelets are low.  I ask if it could be related to injuries while on Coumadin.  Nope.

Any chance it's the Coumadin/Heparin combination as my doctor friend suggested?  No.  Any chance it's from residual medications from the hospital?  No.  Any chance it's related to all the nonsense I'm going through?  No.  Just no.  No idea.  As usual, no idea.  15 years of medical training and she scorns the CCSVI as a possible link to MS, but she has no idea why my platelets are low.  The story of my medical life.  They have names for everything, but no cause and no cure, and the scorn for anything new is rampant.  There's certainly a billing code for the visit, but nothing for me.  Funny how as a contractor when I don't have the solution or have complications the customer demands a discount or refuses to pay altogether, then wants to sue me and report me to the the contractor's board, and takes out a full page ad in the newspaper and every local TV about what an awful person I am.

Then there's Dr. Arata.  I sent him an email last week asking about my Doppler results and what was next.  My left jugular has re-stenosed again, likely clotting, and he got the info last week.  I sent him an email on Wednesday and he hadn't replied by Friday, so I figured he was busy as usual.  Then I got a reply on Sunday morning with an apology for the delay.  Three days is hardly a delay in medicine.  Hundreds of MS patients a week calling his office, and he emails me on a Sunday morning with an apology and a plan.  The nerve..........

Anyway, the plan is to get my INR level of the Coumadin up to therapeutic levels consistently, then go back in and do another Venogram/Angio.  Why does this make sense?  The Lovenox I was on before did nothing, and all the hospital meds weren't isolated.  Now the Coumadin is isolated and measurable.  The clotting is only in the left jugular and is moderate, not fully occluded.  This is progress.

It seems so close yet so far.  I want to feel like I did in October after the surgery round 1.  Like a human, not a case.  I had measurable results, improved symptoms, and hope.  Since then, it's been a steady stream of bad news, but now I see measurable progress again.  Hope.

I wish this could go faster.  The waiting is the toughest part.


3/18/11 Am I supposed to be getting better?

Someone asked me yesterday how I was doing.  All things considered, I was doing ok, so my reply was "Average, which is a lot better than it's been all week."

I got up this morning to go swimming, the sixth time in the past 2 weeks (Mon, Wed, Fri each week), and it was like someone lit a firecracker inside me during the night.  I was in a state of disbelief at how many thing could be hurting or not working right.  I'll run down the list:

1) Temple vein pain was a 6-7 out of 10
2) Heart was out of rhythm.  I don't think it was A-fib, but it just wasn't normal
3) Both shoulders were tight
4) Ribs on the left side were in agony
5) Breathing a little tough
6) Legs were really weak

Otherwise, I was fine.  In fairness to the blog, my shoulders and ribs hurt mostly because I had a few falls on the motorcycle last weekend.  Not big falls like you'd see on supercross on TV, but tipovers on a tough terrain change that I lost my momentum on and had no legs to catch the fall.

So, instead of jumping into the pool and beginning the warm up, I struggled down the ladder and eased in, then worked my way into whatever stroke I could manage.  I warmed up in about 5 minutes, and then tried to do the workout as best I could.  I normally (I hope normally anyway....and that this isn't the new norm) swim in the 4th lane which is the fastest of the novice and intermediate swimmers.  The other 4 or 5 lanes are for the fish and sea otters in our group.  This week I have been swimming in the first and second lane because I am so beat up.  My times have gone from a 1:30 average interval for a 100 yard set to over 2:00, so I'm going slower than slow.  At this rate, I might be on track to set a world record for going the slowest and actually calling it forward motion, but that's another story.

When it was over at 7:00, I got over to the ladder and did my best to haul out onto the deck.  I felt a bit like a Sea Lion hauling out on the beach, and as I sat down on the bench to dry off and dress, I watched as the fish and sea otters leaped out of the pool into their clothes in a single motion.  I thought about how just a year and a half ago I was doing that and thought about how doggone weak I've become.  I took my 10-15 minutes to dry off and dress as everyone else flitted off to work, and I hobbled to my car to drink the hot tea I had prepared earlier this morning.

Once seated in my car, I caught my breath somewhat and headed home.  I guess I'm in denial, disbelief, or whatever you want to call it.  I just can't believe how incredibly difficult the basic functions of life have become these past few weeks.  More importantly, I can't even imagine what might be ahead.  Some days I feel like I am on the verge of recovery and soon this whole nightmare will be behind me, and some days I feel like I have one foot on the grave and the other on the proverbial banana peel.

I look at photos and videos of when I used to play baseball, or look at my old baseball cards, and it seems so real yet so unreal.  I know that was me, but I can't imagine how I ever did it.  I can't remember how to run, jog, or even walk normally for any length of time.  It's just so bizarre.  I feel young, I think I can do something, but when I get up to go do it, it's like the prison guard comes by and chops my legs off for insubordination.  And then makes me have to go to the bathroom without giving me a cup.

I have grounded myself from flying, and haven't flown since November or December last year when I was feeling awesome after the CCSVI surgery.  My medical expires March 31, and I have an appointment down at the Mayo Clinic in April to get the bi-annual MRI's and annual meeting with Dr. Wingerchuck.  The past few years I was excited to go to the appointment because I was doing so well, but this year I am fearing some kind of disciplinary sermon might be forthcoming because CCSVI isn't something a hardcore neurologist seems to believe in yet.  I guess time will tell on how that goes.

I want to get back to doing things like this
I also need to get the Doppler done to check my blood flow in the jugular veins.  I am a little nervous on this too....if the veins are shut down again I have more hospital time ahead of me but would help explain the lack of real improvement.  But if they are all clear I have to somehow figure out what is next.  Do I get a break on this at some point?  Is there a chance I'll have all open veins, get off the blood thinners and start to recover?  I hope so, and so long as I know there is a chance, that's how I'll proceed.

3/3/11 The Roller Coaster

After working last week in sweatpants to ease the pressure on all the wounds and scars, I was able to go for a motorcycle ride on Saturday and Sunday.  I'm a novice rider and I don't jump or go blazing through the jungle.  I ride along trails to find places with great views or places to eat that I wouldn't otherwise find or be able to get to.  Dr. Arata told me to really take it easy if I was going to ride, and said he'd prefer I didn't do it at all, so I went with two friends again....one to pave the trail and look for problem areas, and one behind me in case I fell.

We had a lot of fun.  It was a little rainy (rare here in Vegas), and we went out of Boulder City toward the Hoover Dam.  It was a rocky trail, so the rain didn't really wash it out or make it too muddy.  Traction was good and we had a great time.

My heart was in rhythm all weekend too, and it's amazing how different I feel when it's in vs out.  I felt alive on the bike, both days.  I felt capable, worthy, and human.  I didn't feel like the guy who just spent 240 hours lying around in various hospital beds wondering where my life was headed.

I accidentally had a little too much fun on Sunday on the bike,and inadvertently upset my family by failing to return home in time to do some other things together.  I felt bad about doing that, as these are the people who take care of me, but while I was on the ride, I felt like for those 2 hours nobody really needed to take care of me.  And that part felt good.  I came home and we made up by going out to dinner and a movie together, and we're also heading to Phoenix this weekend to watch some spring training baseball.  Supposed to make 80 degrees down there this weekend.

So feeling great as the work week began, I wore jeans to the office to look like the construction company owner I am.  The office folks all noticed and asked how I was doing.  I was smiling after a nice weekend of feeling good, and we went about our work day.  After work, my partner and I went to dinner and I had a salad and water, which is pretty much all I eat in restaurants for dinner.  I went home, still feeling good, and went to bed, only to wake up with my heart in A-fib again.  It was a little strange, as Kathy had asked about how my heart was doing and right up to that point I was doing well.

Heart was out of rhythm for Tuesday and a little bit of Wednesday.  I worked, went to appointments, and did what I could, but that reduction in cardiac output really takes a bite out of my ability to concentrate for extended periods, and I found myself quite tired at the end of each day.  As I write this now, it's back in sinus rhythm, so I feel great again.

The master cleanse was cut short this time around because I felt I needed a full compliment of nutrition to recover from the hospital.  I'm using an iPhone app to monitor my calories in and out, and that seems to help with the weight in making food choices.  Kathy, of course, did some more research on the causes and controls of A-fib, and the latest discovery is the causal relationship between calcium and potassium/ magnesium levels.  We started taking more potassium and magnesium, so we're hopeful that we will see some evidence over time of this.  The idea of an ablation or living on arythmia medications is as horrible a thought as living on the MS medications I have avoided like the plague.

So the roller coaster continues.  Some days I feel great and alive, and others I feel like my heart is popping out of my chest, causing all kinds of anxiety and fear about how long I can go on like this.  My legs don't have much stamina, but they do feel like my gait is more normal when I am walking on fresh legs.  I figure it's going to take another 4 to 8 weeks to recover from the hospital stay and get the Coumadin out of my body so that we can determine if all my veins are open.  Once that happens, I can really then better determine if the CCSVI vein opening is having any effect on my MS condition.  I think it is, but it's really hard to say at this point.

2/22/11 Don't I have enough to deal with?

After coming home last Thursday, the four hour drive was both tiring and welcome, as it meant the 10 day hospital stay was over.  I could get on with the original purpose for going in there in the first place, namely to see if opening my veins would help my underlying condition.

We went to dinner on Friday night after a day of rest, and it felt good to do that, even if it was difficult to walk and move.  10 days of not moving really takes a toll on the human body; it just isn't designed to be motionless.  Saturday I spent the day at home, but got up every once in awhile to walk around the house.  Feeling a little improved from the day before, I was hopeful that I was on the mend.

In the middle of the night sometime Sunday morning, me heart went out of rhythm again, triggering all kinds of panic.  I understand that 40 million people have heart disrhythmias, and I understand that Atrial Fibrillation is common and not life threatening, and I certainly understand that since I am on Coumadin for the time being that a loss of rhythm isn't a risk for clotting.  But anyone who has ever gone through a bout of A-Fib doesn't see it that way.  It isn't normal, and it takes away another measure of one's quality of life.  When the heart produces 75% of its normal cardiac output during A-Fib, walking and talking makes you out of breath.  It's just so unnerving....

Make no mistake here.  My goal isn't to survive life until one day in my 90's I fade to black.  I have a son who is thirteen tomorrow who wants to play catch or volleyball with his dad.  I have need to fly, motorcycle trails to explore, hills to climb, and work to do.  My goal is to eliminate MS from my life, and all of the surrounding challenges that comes with it.  And once I do that, tell everyone I can about it so maybe they can share the same thing.

So when I am trying to recover from a 10 day stint in the hospital that included a cardioversion, my heart going out again isn't just an annoyance to me.  Perhaps I take it too hard, but I freak out and I want answers.  Any setback makes me mad, but when the heart goes, I really get irritated, angry, depressed, and then eventually, logical.  Kathy and I are pretty logical people inherently, so after a few hours of being bummed out and angry, we started once again to think this through.  Kathy and I hunted and hunted for answers and connections.  Here's what we came up with.

I never once had a problem with my heart rhythm until I had the hernia surgery in 2008.  Since having a few bouts of A-Fib, I have had my heart tested, and it's clear there is nothing wrong with it structurally.  My heart is in great shape.  The condition is obviously plumbing or electrical, or some combination.  Recall my hernia surgery came about as a result of me straining to move my bowels during the time before I knew I had MS.  During the past couple of years, I have had the A-fib condition come and go, and it has always resolved itself within a day or so except for the first episode after the hernia and the recent A-Flutter condition I had for the 3 weeks since Januar 28th.  Removing those two episodes, there has always been some kind of digestive correlation, so we started looking there.

There seems to be two underlying types of Atrial Fibrillation: Vagal and Andrenergic, and I seem to fit the classic case of Vagal (Google it).  Vagal A-Fib seems to be caused by an irriration or disruption of the Vagus nerve, which supplies motor controls to all the organs except the adrenal glands, from the neck down to the second segment of the transverse colon.  The vagus also controls a few skeletal muscles, which are listed on various medical sites.  This means that the vagus nerve is responsible for several jobs, such as heart rate, gastrointestinal, peristalsis and sweating, among other movements of the mouth.  Based on my own sensation, this information, a pile of other research of blogs and other people's comments, etc. we came to the conclusion that my paroxysmal A-fib is likely vagal and can be controlled by diet and the corresponding reduction of invasion of the vagal nerve in the intestinal region.

Putting it to the test, I started the Master Cleanse Monday morning.  This diet is the old lemon, syrup and cayenne pepper diet that so many swear by but so many think is a joke.  The one thing not in doubt about the Master Cleanse is it clears a person out within a day or so.  The digestive system ends up with nothing to do, and the body simply ejects all waste.  By 1:00 Monday afternoon, my heart was back in rhythm again, relieving me and Kathy of the instense stress caused by having my heart out.  It picked up my mood, improved my blood flow, improved my ability to walk around, and made me not so short of breath.  Personally I think this is a better option than the medications or a cardiac ablation that so many cardiologists rush for when they see a patient with Atrial Fibrillation.

I doubt this will be my last episode of A-Fib, but I think we learned without a doubt that there is a correlation, and this sense of knowledge leads to control and ion turn eases the anxiety, especially given my overall state of recovery from last week's hospital stay.

I'll stay on the cleanse for a little while, as I can use it to lose some weight and empty my waste out a little more.  Right now as I write this, it's about 9:00 on Tuesday morning, and I feel pretty good.  I am sitting up as I write, I'll be heading into the office in a little while, my headache and temple pain is a little less this morning, so I feel pretty good, all things considered. 

I really hope that my veins stay open and this is the last I have to deal with clotting or scar tissue, so I can turn my attention toward repairing the lesions actually causing the underyling MS condition.  CCSVI is a huge part of it, but I had to just deal with some additional complications, and I once again thank God I live in this country only 4 hours away from a doctor who understands the role veins play in the condition of an MS patient.  Many thanks again to Drs. Michael Arata and Todd Harris at Pacific Interventional for having the knowledge and fortitude to keep workng with me last week.  I know I was a huge disruption in their normal practice and I'm so thankful that they didn't hand me off to someone else who doesn't share this view. 

If my veins stay open, I think we will have the one major ingredient taken care of in this quest.  I felt it back in October, and I want to feel it again.  Since surgery inside my brain is not a viable option yet, the next step is going to be turning toward more focus on the role of blood and oxygenating the vital sections of the brain.

2/15 through 17 - Cardioversion and Going Home

2/15. Yesterday was Valentine's, and I spent it in the hospital while Kathy and Jake were back home. The only flower I was able to give her was a photo of one from the internet via a text message.

Anyway, I woke up today with quite a headache and my left leg still spasms upon wake up. I really am wondering now if I'm going to have any benefit from going through all this, and now today I had to look forward to a cardioversion to get my heart back in rhythm.

Keep in mind that procedures in hospitals always mean empty stomachs, and I had gone a lot of time in the hospital this past week in NPO (no food or drink) status. This day would be no exception. On Tuesday, it would be no breakfast or lunch, as the anesthesiologist requires 8 hours of no food. About 3:30 or so, they came and took me into the cardio room and prepped me. They had to take an ultrasound of my heart to ensure no clots had formed in the atrium, as these could lead to a stroke once the heart is in rhythm and clear the heart into the blood stream.

At 5:02 and 47 seconds pm (I got the ECG printout), I was kicked into regular heartrate and sent back to my room. Cardioversion is apparently quite painful, which is why they put you under for it. I've been told it's like getting kicked in the chest by a mule. The doctor told me I was out for about 20 minutes, and it was actually (and fortunately) not painful at all. The only thing that was awful about it was the numbing medication that they put into the back of my throat to eliminate the gag reflex. The stuff tastes terrible, and the way the doctor administers it made me feel like he was trying to choke and gag me.

One side effect of the cardioversion and possibly all this hospital prodding and such was a huge case of the shivers. For about 3 hours tonight after getting my heart back to proper rhythm, I was shivering almost out of control. The nurse covered me with several blankets and it eventually began to subside. I actually ended up sleeping quite well this night.

Before I went to sleep, something dawned on me. As of this moment, I had managed to get back to where I wanted to be when I checked into the hospital last Tuesday, namely in regular heart and open veins. Of course, I wanted the MS to be gone too, but I'm not so naive to think that was going to happen. I was now on Coumadin and would be for a couple of months afterwards, but after a week of being in the hospital including 4 days in ICU, I was finally back to a position where I could pursue my ongoing quest to rid myself of this disease. Strangely enough, this actually felt like a victory.

2/16. I woke up today with another headache similar to last week, where the temple of my left side hurt down toward my jugular vein on the left side. This kinds of worries me a bit, and I really hope this will subside as I get back to normal life.

At about 3:00 I had another Ultrasound test again to see if the blood flow was still moving in the jugular, which it was. Otherwise, I was observed all day and being checked for my heart rate and my Coumadin levels to be ready for discharge. Looks like I might go home tomorrow.

2/17. Dr. Arata came to see me this morning. Headache again this morning, but not as bad. Same spot. My heart was still regular, the Heparin had been discontinued about 4am, and the Coumadin level was considered therapeutic. He cleared me to go home, as did the cardiologist a little while later. I was released at about 1:00, now 10 days since being admitted.

Kathy drove the 4 hours from Las Vegas to come get me, and we turned around and headed home. I was pretty weak and didn’t feel like doing much, but we did talk on the way home about it all.

Now all I have to do is recover from the 10 days in hospital, be careful not to do anything that might cause bleeding, monitor the Coumadin levels, get an ultrasound in a few weeks to make sure my veins are still open, and see if all this will improve my MS condition. Nothing is free in this world is it?

2/13 and 2/14 - Out of ICU

2/13. Now able to move a little, I spent all day Sunday in the ICU. My veins were open, but I was still in Atrial flutter and I was on Heparin, and also still a real risk of bleeding. The Coumadin was also being brought up to therapeutic levels. My left groin wound (from Wednesday’s procedure) had opened and bled several times, causing all kinds of concerns for the nurses.

Kathy had been with me all week, checking out of and back into hotels as we kept thinking we’d be leaving anytime. We had no idea my vein would keep clotting, and we had no idea that my heart wouldn’t come back into rhythm on its own as it had previously. We decided that Kathy had to get back to Las Vegas to take care of business while I pickled and fermented, so she took the 4 hour drive home on Sunday night, getting home around 9pm. Before she left, she stopped by Verizon and picked me up an iPhone, so I could do a little more than rot my brain watching TV all day.

2/14. About 4:00 today I was transferred out of the ICU to the DOU (Definitive Observation Unit), which is a notch below the ICU. I had been through 5 procedures in 5 days, and in the ICU for 4 days hardly moving while completely alert for about 99% of the time. I managed to walk over to the DOU from the ICU, and other than a few brief moments of standing up and another short walk on Saturday, this was all the exercise and movement I got.

Prior to heading over to the DOU, I spent some time thinking about why my heart was out of proper time. I asked Dr. Arata if it would make sense to have me cardioverted to sinus rhythm, and he agreed it would be a good idea. I had a cardiologist assigned to me since I arrived because of the atrial flutter, so Dr. Arata coordinated this with the cardiologist. We got the cardioversion scheduled for the following day.

One other thing I should note here is the progress of my MS symptoms. Dr. Arata and others kept asking me about how my legs were among other issues, and I can honestly say I have no idea. Laying in a hospital bed for this length of time with minimal movement and abnormal bodily function was really no way to tell how I was doing. The one thing I can report though was my head felt clearer - a bit less cog fog than previously.