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.