10/28/10 A Day at Disneyland

Our son Jake had a class trip planned for today to Disneyland, so we all went to the park. I still find it a little bizarre that my surgery ended up being the same week as Jake’s school trip, but we’ll leave that explanation to the coincidence gods.

I found my legs still had the same sensory control but then realized just how long it had been since I walked normally. I am stupid and apparently have quite a short memory, so I tried to navigate the park like nothing has been awry for the past few years. My legs were tired from all the walking and step-ups from the day before, and they fatigued early and often. It was tough to walk the park for any length of time, but I think it was pretty amazing to have spent about 6 hours in Disneyland 2 days after surgery.

My ability to navigate the crowds (i.e. the sensory input and balance corrections) from my feet was just fine, and all the fatigue in my legs felt like it was muscular atrophy, not neurological signal loss. I don't know to prove or disprove that, but that's how it feels. We’ll see as it progresses.

10/28/10 I forgot about my poop!

I was so enthralled about my legs yesterday that I forgot to report on another exciting development concerning my bowel. Now, reading a blog about taking a poop is not something most people would want to read about, but I know that people with MS are interested because it often pertains directly to the situation. Warning: this is descriptive, so if you don't want to read about this crappy subject, don't!

When I got up yesterday at 7, I tried to move the bowels as usual. I didn't go, so as I often do when I can't go, I use a finger or an emema to get things moving, because I don't like having accidents. And Disneyland certainly wasn't a place I wanted to have an accident. I didn't have an emema with me and the finger didn't produce, so I was a little nervous that an accident might be imminent in the day.

At about noon, I had a feeling in my rear end I hadn't had in a long time. I felt like I had to take a poop. Now usually when I get this feeling, it is because the turd is heading out right now, and I have to find a place fast and get it out before I have to perform the patented "hand carry" I have developed and perfected over the past couple of years. Yes, I have crapped in my hand more than once, and I've had pellets fall out of my pants leg too. It isn't that fun at the time, but it is kind of funny to talk about it later on.

Anyway, I was near a bathroom, so an accident wasn't inevitable, but this trip was just amazing. Out of habit, I ran (figuratively) into the stall and sat down, bracing for the event. To a normal person, this poop - the first after surgery - was a non issue. To me, this was the greatest crap I've taken in 3 years. It was normal. It came out normal. It flowed normal, complete, and I felt relief inside after. It wasn't a bunch of bear pellets or a pile of brown slosh flowing all over half the bathroom. It was a normal looking human log. And it was more evidence that my body was liberating.

10/27/10 First Day After Liberation

I slept through the night, and the only inconvenience from the surgery I experienced was to keep the wound dressing dry as I bathed the following morning. I woke up around 7:00 and didn't have my legs shake as they usually do upon wake up. I noticed I didn’t wake up with a headache. I got up, and walked to the bathroom, and immediately noticed a difference. I felt strength in my calf and ankle. I didn't have to brace myself.

I found my bathroom tendency hadn’t changed overnight, and I had to press my stomach (Crede) to empty as before. But I noticed that I was getting more drainage with each press.

But the story today is my legs. All I wanted to do was walk around. I walked up and down the hall in the hotel, and I felt things in my legs I hadn’t felt in a long time. My gait felt more normal, with spring in my steps. I looked down at my feet. The swelling was gone and I saw the veins and tendons on the back of my left foot for the first time in 2 years. I picked things up off the floor a bunch of times, using both legs instead of propping myself and making a big production of it.

Kathy and I then went downstairs to go for a walk around Downtown Disney. This is an area just outside of Disneyland with shops and such. Only two nights before, Kathy and I had walked the same area, and walking really was a struggle. Inclines were difficult, and my left quadricep screamed, full of lactic acid, like I had just run a marathon. At one point, we went by the pool which was under construction, and around the edge there is a low concrete border that can be used as both a bench or as a step up. Kathy noticed all the work being done and stepped up onto the wall, and I remember deciding against following her up there. Now, only 18 hours after the procedure, I not only walked around Downtown Disney with Kathy, but I stepped up on the little wall to see into the construction area. I ended up doing it about 20 times just to confirm it was real.

I couldn’t believe it. I could balance better, and my walking was much more normal. I had a big problem walking around in crowds before, and I found my control and sensory input was improved so significantly that I could easily walk in amongst the crowds, making those little adjustments on our feet and legs that other people don’t even think about. I had spring in my step, and the quadricep heaviness/lag was gone. Yes, gone. We walked around the area for a solid hour or so.

With my legs beginning to tire, we went to a movie to kill a couple of hours, and then to the follow up appointment with Dr. Arata at 4:00. In the examination room, we shared the results with him. He was certainly happy for me, but not surprised. He told me that my bowel and bladder functions should slowly start to restore in a couple of weeks, and that I should slowly begin to see more and more deficiencies restored. He wasn’t able to tell me if I could expect a complete recovery or what sequence things would restore, just that things should start to normalize over time to some degree.

Outside the follow up appointment, my legs still working but clearly tired from all of the things I asked them to do just a day after surgery, we saw the couple we had met at Monday’s MRV going in to their follow up appointment. She had done her surgery and reported she had noticed more energy, better bladder control, sat in the sun feeling good, and some other small improvements. Both the lady and her husband looked liked the world had been lifted off their chest and they felt there was hope. We traded emails and phone numbers so we could keep in touch. We also met another couple that had just done their consult and were going in for the surgery the following day. We traded our stories and contact information with them too.

It was pretty exciting to feel such a change in my legs so soon. I walked around a lot today. I probably walked 3-4 times more than I have walked on a typical day in the past few months. My legs are tired, but they are tired in a different way than two days ago. Individual muscles feel tired, from lack of use and the compensating way I have learned to walk. I will curb too much enthusiasm for now, as I know I am not healed, cured, or otherwise, but I think I have restored hope that I will indeed complete the task that this blog was laid out to achieve. I'm used to hard work and pursing goals, and it feels to me like I have something to pursue in the recovery of my legs. How this feels to me is the neurological issue has been cleared for the muscular repair to now take place. Dr. Arata seems to agree, so let's see how it goes.

10/26/10 Liberation Day

To me, the name of this procedure sounds strange, but I guess it’s appropriate to follow suit when describing this. The typical MS patient feels like a prisoner in their body, because we’re really not 100% sure why it is that we can’t do things like we used to. We spent the first 2-5 years of the diagnostic process being told we’re stress cases or have something else going on, being told we’re interesting cases, or zebras, or as one put it to me, “If all my cases were like you, I’d shoot myself.” Then, after hours of wasted time in waiting rooms, MRI tubes, spinal taps and countless other tests, searching for clues on the internet, one day someone tells us we have MS. We feel somewhat vindicated that our issues have a name and relieved that we won’t be written up in some medical journal as the rarest disease ever known to man. And we’re happy that it’s “only” MS; after all, it won’t kill us. We feel good for awhile with all this once we figure it out, but then as daily life slowly resumes, we watch in horror as another one of our precious body functions gets worse, or another taken away.

It slowly saps our strength, our ability to enjoy the simple things like going on a jog, then a hike, then even for a walk to the car to go to a birthday party. Sure, we try to put on a good face, but when the things that used to be so simple are now so difficult, we slowly start to give up. For most, it reduces our zest for living, and for some, it reduces our will to live.

Today, yes, today, 10/26/2010, I had a CCSVI procedure done. For those of us who have decided to take the plunge and have our veins opened, the thought of breaking out of this jail can be quite liberating. So to restate it, I had Dr. Zamboni’s Liberation Procedure done today.

I arrived at the surgery center early again, scheduled for 11:00. After the paperwork and formalities were completed, I changed into the gown and lay on the bed. The prior surgery in the center went a little overtime, so I was wheeled in around 12:30. I really didn’t care that I had to wait 90 minutes. I had nothing else to do today.

They noticed I was taller than the average person (6’5”), so they decided they would do the surgery through my arm instead of the groin for fear that the catheters wouldn’t reach all the way. What I knew was this procedure was a combination venogram and angioplasty, with possible stent placement.

I was awake, but sedated, and Dr. Arata talked me through the whole procedure. The entry point was like a large IV between my right bicep and tricep, about 2” down my arm from the armpit. The catheter was inserted into the opening and into the vein, and he was off and running while the technician positionedthe X-Ray dome right over my chest so we could all see the screen. First up was the right jugular. I had to turn my head to the left so he could get the catheter into it. Turning to the left I couldn’t see the screen anymore, so he talked me through it. I then felt the balloon expanding in my vein as he opened it up.

The right side hurt a little, but it wasn’t overwhelming. Dr. Arata took before, during and after pictures of the blood flow, and was able to confirm it had improved. He also spent the time to confirm it wasn't re-collapsing as the ballon was removed. Unless they were playing an old movie of someone else, it was so obvious to anyone looking at it that the vein had opened and my blood was flowing freely.

On to the left side. I turned my head to the right (right ear in the pillow, left ear to the ceiling), and now I could see the screen. I watched as he probed the catheter into the left jugular and expanded the balloon again. This side hurt. Perhaps it was the combination of the pain and seeing the balloon inside me, perhaps I’m just wimpy, but this side hurt like heck. I started sweating, and then passed out for a minute or two. Full vaso vagel, and my blood pressure and pulse dropped off the chart.

I came to a few minutes later and of course was disoriented. I asked why nothing was going on or if it was over. Dr. Arata said something like: “He’s back, let’s carry on,” and they did. I saw the photos and the screen showing the blood flowing like a fire hose. It was a welcome sight, and I remember thinking that maybe this was going to work.

Blood flow is the key to many, if not all, bodily functions. Kathy had thought this procedure might be akin to filling a sink to brush your teeth. The supply line isn’t clogged, and the sink fills as it supposed to. But the drain line is clogged, causing the sink to develop a foamy water line of crud, toothpaste and saliva residue, and God knows what else. Eventually the water drains away, but the crud is left in the sink, meaning a trip to Walmart to buy some harmful cleaner over and over again to wash down the sink so it doesn’t stink, or stain over time. And all that was wrong was the pipes were closed, and a rooter down the pipes to open the drain was all that was needed to make the sink work normally. It all seems so simple.

Next was the Azygos vein. The Azygos crosses the spinal cord behind the heart, and Doctor Arata said he was finding in many cases it won’t stay open with the balloon. This proved to be the case with me, and after three attempts to open the vein and watching it collapse, he decided to put in a stent. He went with a 14 mm stent inserted into my 12mm vein, and after insertion, he got the blood moving. Again, I saw it all on the screen. It was a beautiful thing.

I remained alert through the rest of the procedure, and when Dr. Arata said “Ok that’s it, we’re done,” I wanted to leap off the table. The 15 minute process of unhooking me from the table ensued, and I was wheeled back to the recovery area, where I devoured a sandwich and some apple juice.

Minimal pain, no side effects, all was well, so I was released about 60-70 minutes later. I walked, yes walked, to the car with Kathy, and it almost seemed like I could drive. I didn’t of course, but I really felt quite good. I felt like “something” was different with my legs. I don’t know how to describe it, if it’s good or bad, or otherwise. But something was different. We got back to the hotel and that’s when I crashed. Kathy worked out at the hotel gym and I slept for a few hours. It’ll be interesting to see how this feels tomorrow.

10/25/10 Roll the Dice: CCSVI Consult

I visited Pacific Interventionalists in Orange County, California, this week, after deciding against the multitude of overseas CCSVI options. My wait was about 5 weeks from first contact with this group from LA, so all eyes were on the last week of October for us. I took a bunch of “before” videos in the weeks leading up to the fateful Monday so I could have a baseline for my functionality and capability in the event this works.

Kathy and I left Sunday the 24th and decided to stay at Disneyland so we could be centrally located between the testing and the surgery, and because our son Jake had a trip with his school to Disneyland later in the week. We chose Pacific Interventionalists in part for the obvious reasons. The proximity to our home in Las Vegas, the reasonable assurance of US protocols for tests and surgeries, and of course, having a good backup plan in the event of an emergency were all good reasons. But we also chose them because of their nonchalant approach to the procedure. CCSVI isn't experimental to this group. A Phlebologist, i.e., vein specialist, already performs these kinds of operations, and MS or no MS, this is the doctor one should see if indeed CCSVI is associated with an MS patient’s condition. Pacific Interventionalists take the simple approach and make it clear they are treating you for CCSVI, which carries a specific set of symptoms and has an established protocol. No stepping outside the license, FDA rules, or ethical boundaries. And if your MS happens to improve or go away, so be it. I liked that approach - it makes sense to me.

As the 9:00 MRV was being performed, Kathy talked to a married couple from Toronto in town for the same thing. The wife was in a wheelchair from MS and had been for a few years after what she described as a full life of raising kids and being a wife. The husband was clearly distraught over the whole affair, and he clearly wanted his wife back. They shared with us that the doctors she had seen in Canada were forbidden to do the CCSVI procedure, so when the Los Angeles option came up, she got on the list. Seems sad to me that the Canadian way would be to send all that good science overseas in the name of preserving science. But that's another topic. After the MRV was performed (finished up at about 10:00), I held the CD of 2000 odd photos of my veins in my hand until my consult later in the day with the surgeon, Dr. Michael Arata. The strangest feelings crept up as Kathy and I went for lunch at Joe Crab Shack on Pacific Coast Highway’s Miracle Mile. Does this CD show my veins are narrowed? Is this a lottery ticket that might pay off? Am I a candidate? Will this work? What if it doesn’t? Am I going to remain a prisoner in this body for the rest of my life? Will I be able to handle that? What if I can walk normally again? Or even run? What if I can go to the bathroom normally one day? What if it just doesn’t get any worse? Will insurance pay? Should we even submit to insurance? What if the doctors are shut down with the procedure being coined as illegal? What if this doctor is just capitalizing on desperate MS patients looking for anything to feel better? What if this kills me? Aye Carumba....what a day.

The time between the test and the consult was about 5 hours, but it seemed like a month. We decided to drive around all the old boating places of Newport Beach we used to frequent 15 years ago when we had worked there after the 1994 Northridge Earthquake. Kathy and I had a lot of Déjà vu moments as we drove the area alone, without our son Jake, like it used to be. We stared at boats – even saw one that was identical to our old Viking Sportfisher, holding the CD/Lottery Ticket in hand, trying to just be patient. I was as anxious as I’ve been in a long time. Kathy too. We got to the consult an hour early. Doctor Arata asked me what my troubles and symptoms were, and as I told him, he listened intently. Very soft spoken, yet highly intelligent, most of my fears were put to rest as we spoke about my challenges. He knew his practice, he understood veins, and he obviously has spent a lot of time doing his homework. CCSVI symptoms are typically morning headaches, cognitive issues, heat intolerance, difficulty sleeping, and some vascular issues like puffy/swollen legs. Of these, I had the morning headaches, heat intolerance, mild cognitive issues, and the swollen left foot and ankle. I sleep pretty well, at least. I’m pretty in tune with the fact that my condition hasn’t progressed as much as other people, but I also learned of (and have) a few other symptoms I really hadn’t thought about. I also know that MS attacks over time are likely to make me worse, so spending the time and money on a low risk surgery in order to raise my chances of not deteriorating really has justified this calculated risk.

Sitting in the exam room as nervous as a mouse in a room full of hungry cats, Dr. Arata said he had reviewed my films and they clearly showed I had narrowed veins. Right jugular worse than the left, and the Azygos looked suspicious, but would need the venogram to confirm or deny. He then told me something I found rather astounding. He said his practice has found an almost 100% correlation between MS and narrowed veins. Dr. Zamboni had found the same thing, but after other doctors in other areas found only 50% or thereabouts correlations, I had begun to think there was a chance I wouldn’t have the vein deficiency; hence the nervous day. Dr. Arata said he has only had one negative test, and that patient had a transverse myelitis diagnosis and he thought not really MS. The cynic in me thought there was a sales pitch involved, but something told me he was telling the truth. Dr. Arata made it absolutely clear to me that he was not treating me for MS, but for the symptoms of CCSVI, something he was comfortable, legal, within licensing, and within his normal vein practice to do. He also said he doesn’t only do CCSVI; rather this condition has been worked into the practice.

Sales pitch or solid information, call me a desperate MS patient looking for anything including a placebo – as some would say - I decided to proceed with the surgery. I think it’s pretty obvious there is a correlation between MS and CCSVI...it is certainly doubtful that a for-profit clinic would schedule surgeries 5 or more weeks in advance without meeting their patients prior unless they saw a high correlation. Roll the dice...