1/27/11 Liberation Surgery round 2

Fearing my veins had closed back on me, it was again time to begrudgingly go see Dr. Arata at Pacific Interventional, and packed up and drove the 4 hours to Orange County. We arrived at the new digs they now recommend for CCSVI patients, the Ayers Hotel on Bristol St. at the junction of the 55 and 73 freeways, just 10 minutes from the office. It’s an awfully nice hotel for the price, kind of a stately Victorian look and feel, and they had a little goody pack in the room for us specially prepared from the Pacific Interventional staff. A lot of people travel a long way for this surgery, and I think this touch would help settle a lot of nerves.

We arrived at 9am on Thursday January 27, 2011 at the newly combined office and surgery center at 1640 Newport Blvd. in Costa Mesa. Previously, Pacific Interventional’s CCSVI program was a bit spread out. The MRV was done here, but their consultation office was a couple of miles away and the surgeries were performed at numerous different locations around the LA area. My previous surgery was at the Downey Surgery Center, and while I had no problems going to that particular location, it was a long way to drive, and I can envision out-of-towners not familiar with LA being a little anxious about it all. I was quite glad to see the consolidation of their operation to the Costa Mesa location.

As I was being prepped, Dr. Arata came by to discuss the procedure and I had my usual litany of questions for him. We didn’t have a pre-surgical consult or test this time, opting straight for the surgery, so we used this time to chat about my condition. Interventional Radiology is a discipline that is as much diagnostic as it is procedure, and much more is learned from being inside the veins than by the use of non-invasive external testing such as an MRV or Doppler. Given my symptoms had returned and surgery was inevitable, we saved a few bucks bypassing the MRV.

I am always impressed by his professional answers, which always seem a notch above the vague answers usually provided neurologists for patients with MS. Dr. Arata had done almost 3 months more of these procedures since my last meeting, and his theories have evolved a bit. Dr. Arata told me that he is becoming more and more convinced, almost to the level of 99+%, that MS and CCSVI has some kind of correlation, but conceded isn’t 100% directly correlated. He further said that the people who most respond to the CCSVI treatment are the people who have symptoms of CCSVI, such as morning headaches, heat intolerance, cold feet and hands, cog fog, among others. Patients who have MS but don’t have the CCSVI symptoms sometimes don’t respond. That said, many of the CCSVI symptoms are similar to MS, and when the CCSVI symptoms are relieved, the idea seems to be that many of the MS symptoms will follow.

During pre-op, Dr. Arata didn’t have many answers for me about how much or why I had re-stenosed, reserving his opinion for the procedure. I’d already committed to it, so I was ok with that. We prepped and I was in the OR at 10:00, right on schedule. Dr. Arata went into my right bicep again, primarily because I am tall and too torso-long for the catheters to reach the jugulars from the femoral area. Before I had really even settled in, the catheter was in my right jugular vein, the contrast was applied, and it was clear it had re-stenosed somewhat. He opened another backflow valve with an audible pop and it hurt like heck. I passed out, just like last time. When I came back to, my right jugular was flowing nicely and Dr. Arata was then trying to gain access to my left jugular.

I felt the catheter inside the base of my neck and I could feel he was struggling to try and get to the left jugular. I think he spent about 45 minutes trying to access it, and finally after several attempts, he instructed the surgical staff to prep my neck for direct access. After another 30 minutes or so of attempting access from my neck, Dr. Arata advised me he was going to have to stop the surgery and admit me to a hospital another time for further intervention.

The problem: my left jugular was completely blocked. Almost no blood was flowing through, and it was so blocked that the contrast wasn’t able to show the specific location on the X-ray machine, so Dr. Arata and the X-Ray tech utilized an ultrasound to find the vein. His theory, which admitted was not 100% certain, is that the scar tissue buildup from the previous surgery had caused an occlusion. He said he simply didn’t have the tools to be able to remove the occlusion in the surgery center, and that we needed to do the remainder of the procedure in a hospital. I think the reason was because of the elevated risk, the available tools, medicines, and crash preparedness that a hospital has over a surgery center.

Before we shut it all down, Dr. Arata took a look at my Azygos vein that got the stent back in October, and he was able to confirm it was not occluded, narrowed, clotting, or otherwise. Dr. Arata said it was a “superhighway.” This was good news. Dr. Arata said he hadn’t seen a blockage like this yet, which raised the anxiety level a bit.

I realize this may sound scary and might deter people who are wary. But my objective in this blog is to report as factually as I can the events, and then provide my thoughts on it. Never once was I worried or scared about what the doctor was doing. I was more worried in the days leading up to the surgery that the relapse of symptoms was caused by something other than a blockage or restenosing. Surprisingly, my initial thought, my gut feeling, when Dr. Arata struggled so much to get into my left jugular was, “This is actually good………I’m not imagining my symptom relapse, I have restenosed, and this completely confirms – at least in my case – the correlation between my condition and my veins and blood flow. My wife Kathy and business partner Ross also both had the same initial thoughts. CCSVI and blood flow is unquestionably an integral piece of the MS puzzle.

Let me be clear. I think this is a hassle. I think this is way beyond an inconvenience, and I think I am still looking at some healthy risks ahead to correct the current situation of the left jugular, and also at the constant monitoring of my veins to ensure they don’t build up scar tissue or stenose again. I also must be prepared for the event that it might. But inconvenience is different than what I probably have in store for my future if I turn my back on this. MS is a horrible condition, and so many people with it are so much more disabled than me. I’m 45 years old, a former professional athlete, and I hate having this disease. I hate it more than anything I have ever experienced in my life. I live every day with lousy legs that won’t run, skate, ski, or even jog. They barely allow me to walk still, and every business meeting I have all day is interrupted by a bathroom episode or two.

I wake up most nights to go to the pee, I sleep with underwear and a safety pad so I don’t wet the bed, and when I get up in the morning, I need to spend a good amount of time clearing out my bowel any way I can so I don’t have an accident. I live in constant fear that I’ll lose my legs completely, and that I’ll lose other things like the use of my arms and eyes, that I won’t be able to maintain my FAA flight medical or that I’ll lose the ability to even go motorcycle riding which I have taken up recently to fill my need to experience the beauty of the outdoors. I also live in the constant fear that I won’t be able to provide for my family, which for the moment is OK. I’m fortunate that we have a lot of income property helping us pay the bills, and that our construction company is currently running without my 100% attention, and that our travel agency (Sportfish Hawaii) is also helping out.

I thank God that we have doctors willing to find a way to help people like me. I am appalled at the Canadian government and institutions like Stanford for refusing to allow doctors to practice the procedure of CCSVI liberation. I get that the FDA and insurance companies snub it and exclude it because of the status of the evidence, but I’m into this for $20,000 now which is nonsense. Even more nonsensical is the number of Canadians who have to travel to get this treatment. Or the number of Canadians who end up overseas. However, it’s amazing to see the facility and practice that Pacific Interventional has built to service this. These doctors are pioneers, plain and simple. And they care. They have bedside manner, and they explain things. They tell you the science is incomplete and the correlation isn’t clear. But it’s obvious to me with the improvements in their practice, their patient backlog, and the intensity at which they study this whole discipline, that they believe they are on to the greatest medical breakthrough for Multiple Sclerosis of all time. If they can make it through all the bureaucratic red tape and the unfortunate lawsuits that will probably come with the territory, I believe others will follow en masse and eventually this will gain FDA approval and mainstream acceptance. And when that happens, everything written about this disease prior to 2008 will prove to be a pile of trash. MS will prove to not be an auto-immune disease, and it will be curable.

I don't think CCSVI is the whole cure, as I've written before. I think there are other factors that need to be addressed. I don’t think Dr. Arata is a miracle worker. I do think he’s a very good vein surgeon, and I also think he is on a mission to do his part in the MS/CCSVI world’s quest to figure this disease out. I also think that the hand-in-hand disciplines of Phlebology and Interventional Radiology are who MS patients should turn to.

By the way, I’m writing this report 7 hours after surgery today. Even with one jugular completely closed, the re-opening of the right side has led to more activity in my legs, reduction in the cog fog, and my eyesight is sharper. Now it’s time to get that left side open.