A copy of the email I sent today.
Jessica:
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.
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
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.
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.
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.
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.
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.
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.
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...
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...
My take on CCSVI
Geez, 9 months since my last post. Still juicing, and my visit to the neurology department at Mayo was uneventful in that I retained my pilot's license another year!
I was rear-ended in a pretty bad accident in March and my 3/4 ton Suburban was destroyed. I was sitting at a stop sign and a Jeep hit me from behind about 55-60 mph. I've had trouble getting back into shape over the past few months, but overall doing ok. A little overweight is my biggest compaint on that.
I have been following the CCSVI like many people with MS have. I have a good friend who is an anaethesiologist who has been helping me do the research, and I've been watching the evidence grow that a liberation treatment might be a remedy.
I am only aware of a few US treatment centers. Most of the “centers” in the US are medical tourism coordinators that will send you to Poland, India, Mexico, or otherwise, and charge fees for sending you to these places.
After doing the research and following the results of many people who have undergone it, I've decided I will be having a CCSVI procedure shortly. I am convinced this is the way to go. Will it work, or am I convinced I'll be normal again? No. What I am willing to do, though, is rule it out, with my own money, that it will or won't work. If I recover, great. That's the best possible outcome and I'll be throwing a party if so. But if it doesn't treat me and I have to keep looking, at least I can cross this off the list instead of wondering for the rest of my life.
I will be doing my procedure here in the US. I believe many of the overseas clinics are good and safe, but I am just too busy to take a week to go to India. If I am going to visit India one day, it's going to be to look at the wonders of India, not to spend it all recovering from surgery. There are some US clinics getting around the politics of treating MS with the CCSVI/Liberation Procedure by stating they are treating something other than MS when diagnosing a narrowed vein. There are other reasons a person could have stenosis in their veins, and interventional radiology and vascular surgeons have been around for long enough to have their own specialty. There are also quite a few other symptoms that can result from venous insufficiency, and it seems for now, the political trick is to address those symptoms. The surgery is not too risky or invasive, and doctors have been doing angioplasties and stents for years. If the MS improves while treating other direct symptoms, you and the clinic can say, "wow, what a great side effect."
To me, that's a better idea than taking the interferons and when I get flu symptoms we'd say "wow, that's a bad sde effect."
All this really does give some credibility to conspiracy theory though. Understandably the drug companies will fight it, given the interferon drugs cost about $1500-2000 a month and once people are on them it’s pretty much for life. Look at the math. When I first got diagnosed, I calculated I would spend $1,000,000 over the rest of my life ($1,500 x 12 x 50 years = $900k, $2,000 x 12 x 50 years = $1.2m) for the privelige of stabbing myself with a drug that has a known efficacy rate of 40% and an almost guaranteed series of side effects. If 400,000 in the US have it and 70,000 in Canada, plus another 1.5 million around the world, it would certainly appear there’s some financial incentive for the drug companies to resist CCSVI. If everyone in the US and Canada took the drugs, it’s a $10 billion a year medication. Worldwide, it’s another $30 billion.
But there a lot of people - like me - who don’t want to take the drugs or are too sick, or not sick enough, or other variables. Many wait until symptoms are unbearable. There are around 40 large pharmaceutical companies. The whole industry is around $400-$500 billion, and if the various MS drugs are $20 billion +/-, I would estimate these drugs represent somewhere around 3-8% of their total sales. I haven’t done all the research, but I’m probably close.
So the question is…….what’s the motivation behind stifling all these people with MS? History has proven repeatedly that good science will defeat money. Look at everything from Polio to Kodak film. Technology eventually prevails. But it is slow. People with MS are impatient. We’re all seeing a potential remedy for our condition, and many are willing to go to India or Poland or Mexico to undergo a somewhat risky treatment that may not work in all cases. This shows the desperation of MS people, especially Canadians. In fairness, the flip side is they want the science to prevail before the flood gates open.
I’m sure I’ll know more after I have my CCSVI procedure next month, but I would suggest it’s likely CCSVI will be commonplace in the US within 5 years after the science has had a chance to fully develop. It will likely become another alternative for people, but not the be-all and end-all that so many people want it to be (including me). Remember, I am in “good shape” as far as the disease goes. Mine hasn’t progressed too much, and while I can't stand the ways my life is affected by MS, I am pretty aware there are a ton of people with MS who can barely move, or are in such pain they can barely function, or couldn’t survive a surgery because they have so many other health issues. Those people are less likely to be surgical candidates even if the probability of recovery is 90%.
That said, I am pretty disgusted at both the US and Canadian governments for not allowing treatment centers to open up - in a controlled way - and make it so people can get the treatment here instead of flying off to other countries. To me, the 2,000 people who have spent $10,000 to get the surgery ($20 mill so far) in other countries because of their desperation and unwillingness to deal with the politics is a pretty sad statement of the politics itself. If insurance doesn’t want to pay for it because it’s “experimental” and not FDA approved, I get that – liability does play a role in this, as does the opportunity for greedy people willing to prey on us desperate people. But to treat CCSVI like it’s criminal, forcing people to go spend their money elsewhere, is just crazy. All that good science and money is being sent overseas.
MS people are desperate to improve their quality of life, there is a tidal wave of evidence to suggest CCSVI might help them, and we’re sending people overseas to try it. That’s sickening.
As I said, I'm going to go ahead with the testing via MRV and the Ultrasound, and if I have narrowed veins, I will get the procedure. I hope for the best and prepare for the worst like in any surgery (I have been operated on 9 times in my life mostly for baseball injuries, so I'm not immune to it). I need to know if this is will be relief for me or not. Sitting around, stumbing and peeing my pants all day waiting for the government to give the green light when the procedure is something vascular surgeons already do every day just seems silly. I've wasted $10,000 on worse things, and I don't feel like this will be a waste. Stay tuned.
The Master Cleanse 1/31/10
Ah yes, the cleanse. Surviving on Lemons, Syrup and Cayenne Pepper. Did that for 14 days and feel great. Dumped a few pounds, symptoms reduced a bit, and the holiday garbarge seems to be gone. Do a Google search on this. You'd be mazed at how well it works.
Heading to the Mayo Clinic tomorrow for my annual checkup so I will report back some more when I see the doc.
Heading to the Mayo Clinic tomorrow for my annual checkup so I will report back some more when I see the doc.
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