11/29/10 Second Report to Dr. Arata on Progress

A copy of the email I sent today.


I received the CD of my procedure last week. Thank you (or whomever you need to thank) for sending that. Friday the 26th was my 30 days post procedure, so I’ll report to you the progress thus far.

As to my progress, the following areas are where I have found improvements:
1) My left leg remains stronger in doing things like bending down to pick things off the ground, and last Wednesday I developed a leg cramp in my left hamstring while swimming strenuously. Normally one wouldn’t think that was good news, but I thought it was given I haven’t had enough strength in my leg to get a cramp there.
2) My left leg remains stronger in my walking gait, but not a lot of change in my stamina in how long I can maintain that. I am still very clumsy if I try to jog and still can’t run. I can, however, jump in the air and spin, landing 180 degrees turned. I can do this both ways.
3) Swelling in my left foot remains gone and my ankles remain about the same size.
4) My balance remains about the same as previously reported.
5) My bowel is very close to normal. Previously I thought it was almost corrected, but I have had some small issues with this. I don’t think I get the very early warnings of bowel movement; I think I am getting perhaps the third or fourth warning instead of the final warning where the emergency is happening. This is still quite an improvement over before, because I don’t have to spend each morning making sure all is clear before going out. I can pretty much tell now.
6) Headache – or lack thereof – remains unchanged.
7) My eyesight remains about the same as my previous report.
8) My breathing remains unchanged from last report. It is clearly much deeper and fuller.
9) I don’t feel dehydrated. Even today when it was quite cold and I didn’t drink anywhere near as much as I usually do, I didn’t feel dehydrated in the body, just a little thirsty.
10) My leg fasciculation, tremors, and spasticity are all but gone. Little ones now and again.
11) Heat intolerance appears to be greatly improved, though it is pretty cold now and I don’t have much ability to test this.

Other Issues I am unsure of or have not improved:
12) Still no change in sleep
13) My bladder control still has not improved. Smell and color have been consistent since last report.
14) My left leg tingle seems to have subsided since last report.
15) My heart rhythm has remained sinus since last report. I have gradually increased the intensity of my swimming workouts.
16) If I put the ball of my foot on a step or slight ridge, my legs (both) will shake. I remember this was one of the original things the neurologist would do to test the involuntary movements of my legs and one of the initial things leading them to believing I had MS. I don’t think this has really changed.
17) I still see varicose/spider type veins on my knees, interior sides. This is still mild, no change.

Thank you again. I will report back in another 2 months.

11/18/10 My thoughts on Conspiracy and the future of CCSVI

I have been asked alot lately about Dr. Michael Arata and Pacific Interventionalists, and why there is so much resistance to CCSVI if it is so successful. I am not a conspiracy theorist, but I can certainly understand how people would believe the CCSVI wave of evidence is being squashed by the powerful drug companies. Big Pharm retaining their profits is a good, simple explanation to a disabled person on why they (we) are being oppressed. The Canadian Government certainly hasn’t helped the position so far, but I don't think the idea holds any water.

I have a good friend who is an anesthesiologist in California who is as mainstream as anyone when it comes to protocols and practices in medicine. He holds a license to literally play God with hundreds of patients a week, and he uses some of the most potentially lethal drugs in the world on a daily basis. His underlying medical degree is as an osteopath, so his training and belief in blood flow is there to begin with. He was one of the people I relied on heavily as I researched CCSVI. Thrilled that I was visibly walking better, we chatted about this very topic last weekend drinking a beer while gazing over the Pacific Ocean.

He believes, as I do, that an overwhelming deluge of evidence will overcome the resistance in time, but the hype has to be removed in favor of science. When CCSVI and the theory of opening veins ends up being proven in scientific settings over the next few years, like anything else in the medical world, it will end up being part of a defined protocol. Remember, Dr. Zamboni had said early on there was a 100% correlation with CCSVI and everyone who has the procedure will get substantially reduce or get rid of their disease (or something to that effect - sorry if I am misinterpreting his position). That built up a lot of hype as the be-all end-all cure, so as more and more people began to test the theory, some holes began to come out.

Some people didn’t see immediate improvement, and some didn’t have narrowed veins. Some who have had the CCSVI liberation have re-stenosed. But were those people all confirmed MS patients? Were there other underyling or contributing factors? Is there a single, unifying element? MS is the "maybe, might be, could be" disease to begin with and it shows up in all of us different ways, so it is pretty apparent there was not going to be one smoking gun in all cases. Once the holes are filled and the evidence becomes more clear, protocols will be defined and resistance will fade in favor of good medicine.

That said, I think it's a bit ridiculous at this point that people in the US and Canada would be forced into overseas options. Not that I have anything against overseas hospitals, but why not have all this great science obtained here at home? 400,000 people in the US and 70,000 people in Canada is quite a good statistical sample.

As to travelling thousands of miles to meet with a doctor you don’t know to do an “experimental” procedure, I agree with the nervousness and underlying concerns. Doctors like Michael Arata in LA are among the pioneers, plain and simple, and his practice bears a lot of risk. I would predict virtually every interventional radiologist and phlebologist (and potentially vascular surgeons) in both Canada and the US will have CCSVI incorporated into their practices within 5-10 years and CCSVI will be the mainstream, unifying element in MS. But for now, we have about 10-20 choices to open our veins, most of which are overseas.

I decided even if it didn’t work, or if Dr. Arata was not forthright, etc. etc. etc. that the risk was still well below the potential reward. I decided that going to LA was a good choice, because the surgery center was right across the street from an Emergency Room. I really didn't think it would get to that level, but that idea helped me in my "worst case" analysis.

CCSVI isn’t going away anytime soon, and as more and more doctors get on board, we will see more and more adjustments and refinements to the surgery and testing procedures over time. And of course, once the FDA and the insurance companies are on board, the cost probably will come down to a $3,000 outpatient procedure, being done as routinely as any other existing surgery my anesthesiologist friend witnesses daily. That will be a great thing for MS. Until then, those of us who don’t want to wait have a pretty viable option in Southern California.

11/8/10 - My first report to Dr. Arata

The following is an email I just sent to the doctors at Pacific Interventional to report on how my condition is as of today.

Hello, Jessica,

Dr. Arata told me he would like us to check in at 2 weeks and then beyond as to the status of my progress. Do you happen to have the CD of my procedure yet so I can have it all together? Please mail to the address you have on file for us. Thank you.

As to my progress, the following areas are where I have found improvements:
1) My left leg is significantly stronger in doing things like bending down to pick things off the ground. I used to brace my legs together to do this, and now it is easy to bend and lift.
2) My left leg is significantly stronger in my walking gait. I get spring from the step instead of the foot drop and my foot and legs go through the normal look and feel of a walking step. It does fatigue still though and the foot drop does come back after about 20 minutes of walking. I am still very clumsy if I try to jog and still can’t run.
3) My left foot had been mildly swollen for some time. I couldn’t see the tendons and veins on the top of my foot and my left ankle was larger than the right. This has all gone away. The swelling is gone, I can see my veins and tendons just like on my right foot, and my ankles are about the same size again.
4) My balance, especially when walking in crowds, is significantly improved. It feels like all the stabilizer muscles that control the subtle foot and leg movements to keep me standing and walking, and dodging, have been restored. I can’t say for sure because I don’t know how many of these failed, but it is fair to say these have significantly restored, to the point where I am no longer hesitant to walk in crowds like at a mall or a trade show.
5) My bowel I would say is as close to normal as I can recall. Previously I would not get the signals that a bowel in the colon until the last moment, which would then often be followed by an accident. I began to manage this by making sure I had relieved myself prior to going out during the day. Since I can now feel it inside, I can now move to a bathroom and relieve the situation normally. I think this is normal but like many things with this disease, there may be some other improvements or complications I can report later on.
6) I no longer wake up with a headache. I had told Dr. Arata that I didn’t even realize this was associated, as I thought I was just waking up dehydrated from not having enough water the evening before. I would get up, drink some water and the headache would go away. The headache was never very severe, but certainly did exist. I haven’t had this for at least a week or so.
7) My eyesight seems a little clearer, though I can’t say for certain how much.
8) My breathing seems much easier and fuller/deeper, but again, I couldn’t provide a measurement of how much.
9) I don’t feel dehydrated. Again I don’t have a way to measure this, but it simply feels like water is absorbing better into my body. I feel stronger and more hydrated on less water intake.
10) My leg fasciculation, tremors, and spasticity has greatly reduced. Most mornings when I awoke would lead to a 5-10 second leg shake upon stretching while still supine. Most mornings now I don’t have this, and on the mornings when I do have it (perhaps 2-3 times since surgery), it’s just a second or two.
11) Heat intolerance appears to be greatly improved.

Other Issues I am unsure of or have not improved:
12) Dr. Arata mentioned that sleep difficulty is often associated with the symptoms of CCSVI. I can’t really report any change in my sleep. I have been fortunate to have slept well all my life, and I experienced no change in this after surgery.
13) My bladder control does not seem to have improved as yet. I would say, however, that it has changed. My urine seems to be a different color. Initially it was very dark after surgery which I think was the contrast filtering out, so I don’t count that 2 or 3 day period. However, my urine is now a lot lighter in color and it smells different. I don’t know if it smells better or worse, just different. Perhaps sweeter might be a way to describe it.
14) My left leg tingles a lot more at times when I use it a lot, like yesterday when I did a lot of walking, stretching, wandering the mall, etc. I don’t know if this is good in that things are coming back to life or bad in that it’s like my leg falling asleep.
15) My heart rhythm has been very steady since surgery. When I exercised (mostly swimming) before, my heart had a tendency to go out of rhythm sometimes, and seemed to be worse when I really pushed it. This would also happen if I drank a little too much alcohol. Since the surgery I have been in sinus rhythm. I have swam for exercise twice, used the exercise bike 3 or 4 times. I swam today for 90 minutes and never felt like my heart was going to go out. Today was the hardest I pushed myself since surgery. I don’t know if this is a CCSVI or MS related issue or not, but it certainly seems so to me given the change I have seen thus far.
16) If I put the ball of my foot on a step or slight ridge, my legs (both) will shake. I remember this was one of the original things the neurologist would do to test the involuntary movements of my legs and one of the initial things leading them to believing I had MS. I don’t think this has really changed.
17) I still see varicose/spider type veins on my knees, interior sides. This is still mild, no change.

Thank you again. I will report back in another 2 weeks.

Mike House

11/2/10 Some Math and a New Hypothesis

Quick Question: which will flow more water in a common household plumbing line, a single 3/4 inch pipe or two half inch pipes? The answer often surprises people; it's the 3/4 inch pipe. This is possible because of the reduced friction in the larger pipe vis the two smaller ones, but also by the simple math we use to calculate the area of a circle. Recall that the area is PI times the radius squared. Thus, a 3/4 inch pipe is .441 sq inches, while two half inch pipes is about .392 sq inches. The 3/4 inch line is about 10% more than the two smaller pipes.

So how does this pertain to CCSVI and vein narrowing? The human jugular veins and Azygos vein are major return lines to our circulatory system. These veins are usually around 10-12mm in most people, or let's say an average of 11mm. Assume each of these veins is narrowed or blocked at one point, as we're seeing in CCSVI exams like mine, down to 8 mm. One might think that's not too much, only a 3 mm reduction, or just under 30%. But not so fast. Use the same formula for calculating the area. An 11 mm vein should have a cross section area of 95 sq mm, while an 8 mm narrowing/choke point drops that area down to about 50 sq mm, an almost 50% reduction. Narrow the vein to 7 mm and it's 38 sq mm, almost 2.5 times less than the 11mm vein.

Now combine the three. Two Jugulars and an Azygos all narrowed by a few millimeters means a significant reduction in blood flow, perhaps as much as 50-80% in these important veins. I'd suspect some MS patients are even more blocked. I really am having a difficult time understanding how the medical community has missed this for all this time.

I'm not a doctor, but the drain line in our sink clogged up today and my contractor mind kicked in. Open the drain line and the sink operates properly. Obsessed with blood flow these days, I couldn't help but think how utterly simple the repair for an MS patient is. Open the veins and let the blood flow, allowing the body to work freely. Come on, really? Is it really that easy?

Thinking about this simple formula and the fact that my legs improve daily to the point where I am almost ready to book a ski vacation, it dawned on me today that MS is not a disease at all. It's a condition, not unlike a broken leg. A thousand years ago I'd be flogged for such a contrarian thought, but we live in more civil times and I get to throw my thoughts out there for discussion and possible ridicule.

If blood restriction leads to venous back pressure and thus in turn leads to perfectly symmetrical lesions surrounding veins causing damage to the myelin sheath, you have a condition, or an affliction, not a disease. If a person wraps a tourniquet around their neck and dies of cardiac arrest, they didn't die from heart disease; they died from the restriction of air flow which led to the heart attack. Under this obviously loose hypothesis, the MS patient isn't suffering from an incurable disease, simply because MS isn't a disease. Rather, the MS patient suffers from an affliction of somehow malformed veins, possibly from a vitamin D deficiency since birth, which led to the neurological problems that have vexed us all for years. Repair those choked veins, and the affliction goes away.

Blasphemy you say? Aren't severely disabled MS patients who don't leap off the table after a CCSVI still diseased? I don't think so. I think they have several months of rehabilitation ahead of them (as I do) to recover from severe atrophy and other neurological damage, but when the affliction goes away, the neurological condition becomes muscular and the healing can take place, the patient can recover. I'll bet anyone suffering from MS would be willing to hit the pool or the gym as able to recover once they know they can recover. All they need is to know that they are improving, not worsening.

I am convinced that CCSVI is not a cure for MS. I am equally convinced it is a release of a condition leading to the disability that will allow healing of MS patients. I started this blog a couple of years ago with a belief that diet and exercise would do better than any MS medication in dealing with this "disease". I think I was half right. Because good diet and a lot of body movement promotes blood flow, it's no surprise that I was holding my own pretty well. But I was also fighting a difficult, possibly impossible battle and I needed something more. I knew somehow I didn't need drugs. I'm not an anti-drug person, but it just didn't make sense that any drug would help with MS when I never believed MS was a disease of the immune system attacking itself. "More" seems to be the opening of my veins to allow 50 to 75% more blood to flow, promoting the healing of this horrible condition.

I have a long road ahead to fully recover. My legs are still a little weak, I still don't have the bladder control of a normal person, and I still have some other issues to deal with. I know other people who have had the CCSVI surgery have other challenges to overcome, especially those who have become less and less mobile. But I'm willing to work at it and do whatever I need to. To anyone and everyone who has had a CCSVI procedure done or is considering it, I offer that the surgery should e treated like the repair of a broken leg or arm. The surgery itself and the medications don't do the healing. They simply allow the healing. Diet and exercise will do the rest, as the blood will flow even more.

Back to the pool tomorrow and the juice and enzymes continue.