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...

1 comment:

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