tag:blogger.com,1999:blog-46551909945225587742024-02-06T18:03:43.421-08:00Beating MSMultiple Sclerosis (MS), like most adult onset disease, can be beaten without drugs. Juicing, enzymes, exercise, CCSVI, and changes in lifestyle will likely do a lot more.
Join me on my quest to rid myself of the disease, share your thoughts and experiences.
You aren't alone.......MikeMike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.comBlogger88125tag:blogger.com,1999:blog-4655190994522558774.post-36336449649659569602015-12-30T19:06:00.000-08:002016-01-07T19:07:01.928-08:00Moving to Facebook<div class="p1">
<span class="s1">I forgot to tell everyone that I have made a lot of progress, but I have moved the updates to Facebook. It seems there is a lot more activity on Facebook, more people leave comments, and there is a lot more interaction. I will leave this Blog up for those who see the facebook posts and want to read the history of my condition, but I won't be updating this Blog regularly. </span></div>
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<span class="s1">If you want to follow me on facebook, search Mike House. I live in Las Vegas. Send me a friend request and you'll get all the updates, which I do every 1-2 weeks. </span></div>
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<span class="s1">Happy 2016</span></div>
Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com0tag:blogger.com,1999:blog-4655190994522558774.post-89869819055877375852014-07-18T14:15:00.001-07:002014-07-18T14:15:21.445-07:007/18/14 My Most Embarrassing Admission Turned Good?<br />
<br />
Throughout the history of this blog I've tried to be as honest as possible about my condition, my mood, my thoughts, my attitude, you name it. I've admitted a lot of things on here that might be in the TMI (Too Much Information) category, but I've always left out one detail that I felt was a little too embarrassing to write about. So here it is....I've been wearing a diaper to bed for about 4 or 5 years (I guess I am supposed to say absorbent undergarment, but a spade is a spade is a spade). Lots of emasculating things come along with my MS diagnosis. As if losing my ability to walk properly wasn't bad enough, I had my heart out of rhythm, the headaches, the brain fog, the urinary issues I wrote about, the bowels, and of course, the nighttime wee wee.<br />
<br />
So yes, I was a bedwetter too. And quite a good one. I'd fall asleep on the couch and wake up to a nice round patch on the front of my shorts, clean up and go to bed, then wake up with the sheets soaked. After about 10 times of that happening, I finally agreed to wear a diaper/undergarment so at least I kept it contained and no extra sheet washing was required. What I wife I have to have dealt with that wonderful morning treat.<br />
<br />
The good news is, it seems to have gone away. As I began to lose weight (260 as of today, so about 55 lbs gone so far), put my heart back into rhythm (almost 9 months of sinus now or 25 million beats), eliminate the brain headache and fog issues (almost a year now), and generally improve my overall health, I feel like I just got a new reason to believe I remain on the mend. This one has to be a legit improvement from a neurological standpoint. I stopped losing control of my bladder while sleeping. Wow. Instead of whizzing all over the bed and waking up from feeling it on my leg, now I wake up when it's still inside and my body taps me on the shoulder and says "Hey Mike, you gotta go.....might want to wake up and use the toilet." A groggy stumble to the bathroom has proven much better than a fully awake swearing session about soaked sheets and sleeping rest of the night on a towel or the floor. Ahhhh, the joys of MS. Sleep is good. Dry sleep is better.<br />
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Also, no sooner than that happened, I have also noticed some real improvement in my legs. Not sure how to describe this one as I'm certainly not fixed, but there is some initial trigger stability I've felt lately, despite it being 107 degrees here. It's very slight and may just be a fluctuation, but I'd thought I'd report this too in case it turns out to be the start of another neurological re-connect.<br />
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<br />Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com1tag:blogger.com,1999:blog-4655190994522558774.post-80995284153661193112014-06-05T11:14:00.001-07:002014-06-05T11:14:53.853-07:006/5/14 Where does the time go?<br />
<br />
Last post was April 14th. Time seems to slip away so quickly....seems like I just posted. <br />
<br />
1) Heart: in. Somewhere around 22,000,000 beats all in sync. This one still amazes me as I spent 4 years in Afib (recall it was about 2 in paroxysmal and 2 in persistent). I was pretty much preparing to have my heart out the rest of my life, but I'm almost to the point where I don't think about it much anymore. And frankly, that's pretty nice. I may not even need to report on this any more.<br />
2) Weight: I don't know exactly. I got below 270 for the first time in 4 years (which, by the way is only 20lbs over my baseball days), and I haven't weight myself in a month. My guess is around 265 since I've been averaging a pound a week of loss, but I'll report back as soon as I get the guts to weight myself again. I don't like being disappointed with this....kind of wrecks my day. So I usually weigh myself on a weekend or something. The cool thing about the weight is I don't really think about it much anymore. I figure the way I'm eating the weight loss is just a function of the health and body realignment. Weight loss is just a byproduct, and I feel like I'll just land where I'm supposed to land. Kind of hoping it is in the 230 range, but we'll see. It's only 20-30 more lbs to go. Maybe by Christmas I'll be at my ideal weight.<br />
3) Legs and bladder.....still no change, although it is really hot here in Vegas now and us MS folks are really beat up by the heat, but for some reason I am detecting some trigger strength I haven't seen lately. Not sure if its a trend or something passing as has been the case with many things leg. More on this in a bit.<br />
4) Exercise....I'm back in the pool! I used to swim with the Las Vegas Masters but when I was in afib I was getting scared to swim. Felt like the aerobic nature of swimming was stressing out my cardiovascular system too much so I downgraded to an exercise bike and the quad. I told myself when I got back to 270 I'd hit the pool again. Been back in there since the end of April and it feels great. Swimming is a pretty boring sport for me, but it is a lot more lively with a team all pushing each other and a coach yelling at us from the deck. <br />
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So the leg thing is a little strange. I've reported many times in the past I felt this stability or that coming around, but it really has been up and down. I know that not getting worse is a plus, but as anyone who knows me knows, that isn't the goal. The goal is to be done with this. And the latest sensation I've been getting with my legs might possibly be an indicator that I'm improving in this area. Trigger strength is word I use to describe the initial reaction when a muscle is fired from the nerve. For example, hold the arm out straight and have someone pull down on the hand. The initial strength is what the neurologists measure, so for lack of a better word and not being trained medically, I call it trigger strength. There are various loads that get placed on the legs when walking, squatting, going around a corner, etc. For most people they don't even think about them, but with my legs I have to be very cognizant of them because when I have weak trigger strength in some of these things, I can go down like a sack of potatoes falling off a truck. Lately I've noticed, for about a week straight, that I have some extra trigger strength in my right leg as I walk around a corner. Just writing about it to document and see if it's a trend. Hope so....<br />
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What else? Headaches, gone. Superficial Temporal Vein presence/pain, gone. Medications, none. All I do now is eat mountains of veggies. See the pic below. That was dinner at sweet tomatoes last night. Bit of a horse feeding trough........<br />
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Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com0tag:blogger.com,1999:blog-4655190994522558774.post-25048617926051518932014-04-14T19:21:00.001-07:002014-04-14T19:21:15.131-07:004/14/14 Just a quick update.........<br />
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Weight: down to about 270-275. High was 315 +/- when gluttonous nutrition began.<br />
Jeans: 42's are out. 40's in for some middle relief, very close to needing a belt. Almost to the closer which is the 38's. Extra innings might be 36's but I doubt it.<br />
Bladder: larger, more volume. Urgency and relief same.<br />
Bowel: as normal as I could imagine. Unreal how awesome this is.<br />
Heart: Fully sinus since November 6th, 2013. That's about 16,500,000 beats all in a row. Even more unreal how awesome that one is!!<br />
Legs: weak. Damn I wish I could see some sustained progress on these. I get little glimpses of good here and there, but other bad days. <br />
Attitude: Skewed recently as a result of some major challenges at the office. Seem to have resolved for the most part, so let's see.......<br />
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Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com0tag:blogger.com,1999:blog-4655190994522558774.post-75631364845913032462014-01-22T16:16:00.000-08:002014-01-22T16:16:20.232-08:00<div style="background: white; line-height: 13.45pt; margin-bottom: .0001pt; margin: 0in;">
<span style="color: #333333; font-family: "Helvetica","sans-serif"; font-size: 10.0pt;">1/22/14 Go 100%<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Helvetica","sans-serif"; font-size: 10.0pt;">I
got a facebook post from a buddy the other day.
He said, “You've created an opportunity. Whether it's Kimberly's (energy
healing therapist) hands or food or shocking your heart or exercise or riding
your quad or your crazy ass dog or the combination. This is the first time that
you could possibly be without any medication giving the food its first true
opportunity to let your body heal itself.<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Helvetica","sans-serif"; font-size: 10.0pt;">“There is no other way to reverse vascular damage. No drug, no treatment, nothing. This (proper food) is 100% successful. You must be 100% compliant to get 100% benefit. Accidents happen and there is also things that will sneak in. For instance, the oil they put in the brand of hummus you eat. Fresh and easy brand has less. You can scoop out the oily part to reduce it, making it yourself oil free would be best. Fine tune your food and eliminate the bad fatty oily. Go 100%.<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Helvetica","sans-serif"; font-size: 10.0pt;">“Will this work at 90% or 98% compliant? I don't know. I can't wrap my head around not doing it 100%. The hard part is going 95%, fine tuning the last 5% is relatively easy. Would it make a difference if to not put the proper torque on the bolts of a bike, not hammer the deck nails in all the way, a few wire nuts off the wiring in the house? <o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Helvetica","sans-serif"; font-size: 10.0pt;">“If this way of eating was a pill it would cost hundreds of thousands of dollars. Get the maximum benefit go 100%. If you paid for it wouldn't you want maximum benefit?<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Helvetica","sans-serif"; font-size: 10.0pt;">“Yes, small amounts of refined sugar and cream will affect your hormones dramatically. Yes, when eliminating vitamins and the other things you were or are taking, it will take time for your body to adjust. <o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Helvetica","sans-serif"; font-size: 10.0pt;">“You are so close.<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Helvetica","sans-serif"; font-size: 10.0pt;">“Put 90 dollars in pennies in a back pack that's the 50lbs extra you are carrying. You get to take 5 to 10 pennies out a day. That's the rate of healing there is to your vascular system when 100% compliant. <o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Helvetica","sans-serif"; font-size: 10.0pt;">“For weight loss I was a little reluctant because I want maximum nutrition. But in a week or 2 you will start to lose about a lb a day, while staying with the same plan remove high glycemic food.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Helvetica","sans-serif"; font-size: 10.0pt;">Now
this friend of mine is the one who convinced me to go to the plant-based life,
as he walks the walk himself. He has
lost weight, got his cholesterol under control, controlled his glaucoma, and
all kinds of other blood parameters. He
isn’t a nutritionist. He isn’t a
doctor. He’s a guy who likes to ride and
wants to see me healthy and walking normal again. He’s the one who also told me I might be walking
normally again by May. <o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Helvetica","sans-serif"; font-size: 10.0pt;">How
dare he say things like this? Who is he,
not trained in medicine, to make such predictions? Well, I’ve lost weight. Down to 283 last time I checked. Was about 315 in October when I started this,
lost a bunch right away, stagnated for a bit at 290, then another 7 off. 30 pounds in 4 months, eating until I’m full,
heart in rhythm, full of nutrients and hydrated. Stopped taking almost all the supplements,
and I take no medication. <o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Helvetica","sans-serif"; font-size: 10.0pt;">I
previously reported eight or so measurable improvements. And now it’s starting to happen. The legs have started – just a little bit –
to work in harmony. I know because I
feel it. My wife knows because she
always could tell who was walking down the hallway and I scared her last night
as I walked into the laundry room.
Literally. Walking on hardwood
floors for the past few years, the right leg is normal and the left leg flumps down clumsily. Now, the left leg walks almost normally too,
to the point where the heel lands first, rolls down to the ball of the foot,
and thrusts for the next step. The trained eye could spot a problem, but it is pretty good.<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Helvetica","sans-serif"; font-size: 10.0pt;">I
can’t sustain it for too long, the left quadracep feels like I have a charley
horse every now and again, and of course the rough terrain and standing on one
leg remains difficult. But I can’t
believe it. Mayo Clinic never got me
this far. Not UCLA, University of Utah, nor
any doctors here in Las Vegas. CCSVI
came close, which is why I did it so many times. But for the clotting, CCSVI would probably have advanced me more.<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Helvetica","sans-serif"; font-size: 10.0pt;">I
don’t know if I will continue to improve.
I am starting to like my odds. A
heart that has beaten some 8 million times in sinus rhythm probably helps, as
does being hydrated. I drink a third of
what I used to and drink when I’m thirsty now, instead of all day drinking and still
being thirsty.<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Helvetica","sans-serif"; font-size: 10.0pt;">As
my friend said, I am so close and it sure feels like it to me too. I am beginning to dream about walking
normally again. I’ve even had a couple
dreams about running, but I’ll take this a step at a time. Literally.<o:p></o:p></span></div>
Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com0tag:blogger.com,1999:blog-4655190994522558774.post-58286513450050743622013-12-10T11:48:00.003-08:002013-12-10T11:48:43.738-08:0012/10/13 3,427,200 Beats and Counting - and other results<br />
<br />
As I reported previously, my heart went into sinus rhythm on November 6th, and it has stayed that way ever since. That means at some point today I will pass 3.5 million heartbeats with no skips, wiggles, extras, or quivering jello in the atriums. Just 3.5 million beats sounding as steady as the beat of your favorite song. I followed up with the cardiologist a couple weeks ago, and the look on his face as he studied my sinus EKG was as though someone had just handed him a Rubik's cube. Some confusion, some analysis, but no real understanding. He told me he was sure I would have gone back into Afib. He was happy for me, but very surprised. <br />
<br />
I can tell when I'm in Afib and not. But I was checking my pulse about every 10 minutes for the first few weeks. I seem to check it now about once every few days. My goal is to take my heart for granted again. Take that the right way as you read it........I don't want to consciously think of my heart every minute of the day. It needs to just be there in the background, doing its job quietly.<br />
<br />
I've been just over two months on the vegan/plant-rich diet, and I've dumped about 20-25 lbs. It shows and my energy level has improved a lot. I still have another 20-50 lbs to go, and I say 20 to 50 more because I don't really know what my ideal weight is. I played professional baseball at 250 and I was massive and strong, so I am not sure if I should be around that weight or less. I am pretty sure that eating like this is going to just end up where it wants to end up. <br />
<br />
I had an old friend from high school visit this week and he asked me how it's been going. We went to a restaurant last night and it was right at the freezing point. We enjoyed the evening together and with other friends, talking stories about the good old days, and when it was time to leave, I got up and walked to the car almost as though I never had this disease. It was actually almost bizarre. Hands in pockets walking hasn't been synonymous with me for some time. But because it was cold, I tried. No problem. Someone walked in front of me. I dodged and weaved. No problem. <br />
<br />
All throughout this disease I have had good days and bad days relative to my level of disability. I don't really know how to rate it or rank those days, but I can make a general statement that it's generally been worsening with a few slightly less bad days. I would rate my legs at somewhere around 20-30% of normal. I can stand, walk with difficulty (and not much stamina). I can't jog or run, or climb stairs without holding on. Strolling completely wipes my legs out, but walking pushing a shopping cart through a store works pretty well. Lately I have gone through more good days and I can feel way more stability in my legs, especially when I stand without holding on to things. I have been able to put pants on by sitting in a chair, lifting my legs into the pant holes, then standing up out of the chair to pull them up without using my hands to stabilize myself. I've got up off the couch around 50 times without using my hands. I walk around in the house with a lot less scuffing of the left foot from foot drop. I can walk down stairs gingerly and slowly but without holding on to the rail (maybe a bump or a grab here and there if it doesn't feel right). <br />
<br />
And now the latest. I haven't written about this before because I wasn't sure what to make of it. In April this year, I got some kind of small bug and felt like I was going to get sick. I didn't actually take any time off work or lay around in bed, and I really didn't get the sniffles or anything. But my voice went hoarse. I thought it was allergies, of course, and really didn't put much into it. I went to see a doctor at about 3 months into it, and it turned out I had a partially paralyzed left vocal chord. Could have been the virus, could have been scar tissue from the major surgery on my neck in 2011, or it could be related to the MS. Or there is no explanation at all. <br />
<br />
I went all through the summer with it hoarse and scratchy, into the fall, and I went to see him again about five weeks ago. No improvement. The doctor literally had no suggestions for me. I was pretty deflated. I sat in his exam chair, I slumped over, put my head down, and wept a bit. This second appointment was before my heart came back, and I remember thinking how is it possible for a person to get MS, a disease that isn't well understood and certainly has no medical clarity on cause, treatment or cure, then get Afib, a second disease that has no medical clarity on cause, treatment or cure, and now a third? I just thought about how many times I've gone to a doctor in the past 7-10 years with no good news. Sure some were great. I have well documented the CCSVI results I've had and some others, but my god. I'd lost most of the use of my legs, my heart was working at 65% of normal efficiency and I was at risk for stroke and/or heart attack, and now my voice is going with no explanation? How do I run a business and negotiate with people or walk projects or discipline employees or just function like a human if I can barely walk or barely talk? What's next?<br />
<br />
As much as I hate to admit it, I've had many talks with myself over the past few years about whether or not I'd see my 50th birthday. This second appointment with the throat doc got me thinking once again I have little chance of making that. It's a tough thing to reconcile......going from a professional athlete to a crippled guy with a 65% heart and no voice isn't the best feeling.<br />
<br />
Long story short, my voice seems to have turned the corner. Over the past few days, talking has been less effort and I have less hoarseness in the voice. 8 months and suddenly it decides to start improving. Three doctor visits in the past month have yielded interesting and hopeful results. Heart is working properly for the first time in 4 years. Legs working better. Voice improving. <br />
<br />
Why? I have a dog, I'm eating plants and not animal products, I'm seeing an energy healer, and I went to my 30th high school reunion. I think these four things have somehow conspired to turning me around. I wrote about being more hydrated a couple posts ago, and now my mind is clearer, no morning headaches, and so on. It feels like I have re-programmed my body to heal instead of deteriorate. <br />
<br />
I have a business partner who is a pretty perceptive guy, more to the intangible than the tangible. He said I'll be jogging in two years. I have a friend I work with who is helping me stay motivated with the food choices. He says I'll be walking normally by May. I don't know about either prediction. Just wanted to document them in case. I can't rule it out at this point. <br />
<br />
<br />
<br />
<br />
<br />
<br />Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com0tag:blogger.com,1999:blog-4655190994522558774.post-17020938654608517392013-11-12T16:15:00.000-08:002013-11-12T16:15:07.408-08:0011/12/13 The end of A-fib?<br />
<br />
<div class="MsoNormal">
I am taking a chance here writing about this one because I
am terrified of jinxing it. My heart is
in sinus rhythm. There, I said it. If it falls back to Afib, let’s just deal with
it. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If you go back a few entries in this blog – quite a few
actually, you’ll see some writing about my heart and it going into Atrial Fibrillation. I’ll spare you the hunt and give you the
highlights. About 4 years ago, right
after hernia surgery #2, I had my first bout of A-fib. I freaked out, went to the emergency room, got
a pile of tests, and a beautiful nurse injected me with blood thinners. The nurse’s shift ended, and I went to a hospital
room to ponder what the hell was wrong with my life. It naturally converted overnight, so I got
out of the hospital the next morning and figured it was just a result of the
surgery.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Over the next 3 months, it seemed anything sweet or sour
kicked me back into Afib, as well as any heavy exercise like swimming. And so began the annoying journey known as Paroxysmal
Atrial Fibrillation. Fancy word. Translation: Anxiety Life Sentence. “Don’t worry, Mike,” said the docs and
nurses. “Even though we know nothing
about why people get this and have no solution, it probably won’t kill you so
long as you stay on the appropriate anticoagulant medication. Thousands of people have it. Thousands.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I realized right then and there I not only had one disease
that nobody can fix, but now I had two. The
emotional yo-yo of being in and out of regular rhythm began, and this carried
on for about two years, until one day I was in a sushi restaurant with a couple
folks for lunch, and it popped out of rhythm once again. I tilted my head like a curious dog, and
thought to myself, “that one felt different.”
I had a feeling that it wasn’t going to convert, and two years later and
two attempts to electronically cardiovert it, my atriums remained as a
quivering pile of Jello.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Fast forward to about a few months ago when suddenly my
hydration levels improved. Then fast
forward to about 5 weeks ago when I went to the plant-based diet. I woke up one morning and I said to myself, “I’m
almost 50. I need to get my heart sorted
out because if I don’t, I am going to start aging quickly.” <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As usual, I had to take action on my hunch. TV commercials for long term medications were
out. I jumped on the phone and asked my
doctor friends if I should start thinking about an ablation for my heart. Yes, was the response. An ablated heart in sinus rhythm is better
than a non-ablated heart in Afib.
Ablated hearts don’t always stay in rhythm, though, so I needed some
more answers. I went to see an Afib
specialist here in Las Vegas last week, and we scheduled me for a TEE and
cardioversion. The plan was to take a
good look at the size and shape of my atriums and determine if I was ablation-worthy. Doc specifically told me that he didn’t
expect the cardioversion to work given I’ve been persistently chronic for two
years, but it would give him good information about the ablation
possibility. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I went into the hospital two days later, and assumed the
position I’ve become way too familiar with.
I knew of the anesthesiologist through another friend, and I asked him
the proper way to administer propofyl.
IV was established, and soon I was wheeled into the Cath Lab and dosed gently into La-La land. I woke up after what seemed like somewhere
between eight hours and three months to the words, “Mike, Mike, Mike, wake up,
you’re in recovery. Your heart is in
sinus rhythm.” Turned out I was under
the milk for about six minutes, they did the TEE, gave me a good jolt, and I converted
first time.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
WHAT?? I couldn’t believe it. I had to be dreaming. It was like someone reattached my hand after accidentally cutting it off
two years prior. I smiled, even
giggled. I couldn’t pull my fingers off of my throat, checking my pulse every ten seconds.
Then the worry set in. I wondered
if it would last……..my wife wondered too. I woke up the next morning, after some 75,000 beats (amazing how many times our hearts beat when you really do the math), and I thought to myself....."This is different, I think this might stick."<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
I’ve been sinus since. Tomorrow will be a week. I’ll follow up with the Doc on the 25<sup>th</sup>,
but as I sit now, I have more blood circulating through my body than I have in
the past five years. I found a new toy
and I can’t put it down. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If it does stick, that will be result #7 since becoming hydrated from seeing my healing therapist and going full vegan with the food. Let's hope it's lucky #7, and there's some more where that came from. </div>
Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com0tag:blogger.com,1999:blog-4655190994522558774.post-63462977412817564262013-10-31T17:22:00.003-07:002013-10-31T17:27:37.837-07:0010/31/13 Eating Like a Horse, or maybe a cow<br />
<br />
26 days ago I started a vegan diet. To be clear, it's not for ethical purposes or animal treatment issues or the USDA being funded by the meat and dairy associations. I know that exists and though I have an opinion on it, that isn't consistent with the purpose of my blog. The purpose of this blog is to report on my condition, and share things that are working and things that aren't. It's also to hold me accountable and keep a running tally of how this is all going. <br />
<br />
A few weeks ago, I learned that the inner lining of the arterial and venous walls (known as the endothelium) can be damaged in some people who eat a meat and dairy rich diet. I also found out that it can be repaired in some people by a plant-based diet. Furthermore, I learned that living on a plant based diet can reduce inflammation and improve overall vascular health for some people. Therefore, I surmised, if MS is rooted in a hypoxic or blood-depleted environment in the microveins inside the brain where the MS lesions exist (which is indeed what I believe), then the vegan or plant-based diet may be the answer.<br />
<br />
So now I probably sound like a believer in Roy Swank, or perhaps a follower of some version of the Gerson theory. I guess if it looks, sounds, and feels like a duck, it's probably a duck.<br />
<br />
I have gone through various phases of dieting throughout my life. I've never eaten an entirely garbage diet like fast foods all day every day, and I've also never eaten an entirely perfect diet (whatever that is), like apples and carrots. I have noticed, though, whether I was eating generally well or eating generally poorly, I've never removed meat, eggs, milk, and cheese from the equation. So now that I am isolating that, if there is indeed a link between vascular health, inflammation, and blood perfusion to the consumption of animal products or lack thereof, I will find out.<br />
<br />
I have been coached and encouraged for awhile on doing this by a few people, but the problem has always been consistent motivation. Who wants to eat flavorless grass all day? And as the 16 year old son of my business partner put it, "I've come to realize that everything that tastes good is bad for you and everything that is healthy takes like crap." The other problem is when you get right down to it, people who don't have any medical problems such as MS have all the answers, usually found on the latest Today show or a google article. <br />
<br />
I've had about 90 meals since starting this out. Of those 90, I had chicken wings the second day and some turkey lunchmeat the 4th day, and I went to a board meeting on the 8th day and ate a pile of Cheeseits and Kit Kats because it was there. Otherwise, 0% animal products (unless it's in some ingredient I don't know about in something). Finding places to eat and get a variety of plant based foods is not an easy chore. Sure I downloaded some vegan apps, but for the most part I eat berry smoothies with fax seed and almond milk, sometimes Kashi cereal, for breakfast, a giant salad and soup from Whole Foods for lunch and late afternoon snack, and something at home like another salad for dinner. I've found some Thai restaurants and a place called Veggie House that does some cool things to tofu, mushrooms, and veggies to trick me into thinking I'm eating meat.<br />
<br />
Results so far? Not what I'd expected. I'm actually pleasantly surprised.<br />
1) I am not craving meat, eggs, milk, cheese. This one is strange.<br />
2) I am gorging myself on veggies all day so I'm not hungry, thus finding my blood sugar doesn't seem to be spiking, causing that late afternoon sugar binge. I feel satisfied most of the day.<br />
3) Hummus farts have been spectacular. Just amazing. Length, volume, odor, office reaction. All of these have been at least an 8. Night time dutch oven with my wife has been a 10 a couple of times.<br />
4) Energy has been pretty good and quite stable throughout the day. Even riding the quad has been more enjoyable as I'm not so exhausted at the end.<br />
5) And, yes, you knew this was coming, the poops have been legendary. Regular as can be, too.<br />
6) Last, it's delicious. There are a lot of combinations to really make this a tasty deal. That was a nice surprise too. <br />
<br />
I think this is tying nicely into the hydration I reported earlier this month. My wife reports I look smaller in the gut, which was seconded by another person last night. I haven't weighed myself yet. Waiting for some change in my pants and shorts as I've been pretty disappointed in my scale these days. Hoping that thing will smarten up with all this......<br />
<br />
The cooler weather has made walking a tad easier, so I've had a tendency to get up from my desk more often and take the dog for a walk around the shop. <br />
<br />
Hopefully this plant life is going to help. If nothing else it will tell me if I'm going to improve my vascular health and lose some weight. Seems it probably isn't going to hurt.<br />
<br />
<br />Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com1tag:blogger.com,1999:blog-4655190994522558774.post-90647585430185160992013-10-08T11:41:00.002-07:002013-10-08T11:45:33.282-07:0010/8/13 HydrationThanks to a few friends and family, I have been reminded
that my last blog entry was almost a year ago.
So, I haven’t died, I haven’t miraculously healed, but I can report I’m
somewhere in between and it feels more like the latter. I think my main tendency in writing this is
to only report when real changes take place, good or bad.<br />
<div>
<br />
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
All throughout the time I’ve had this disease, I could never
really understand what was happening to me –or really why. That’s nothing new to anyone with MS – the “could
be, may be, might be” disease. Drs. and I
knew the Myelin was degrading, but there is no consensus of understanding of why. I didn’t know if the disease was rooted in
auto-immunity (current prevailing opinion) or was punishment for throwing rocks
at squirrels as a kid. But one thing I did
know was that I was dehydrated. I was
always constipated, my throat always felt dry, and I drank a lot of water for
really no reason as it just flowed right through me. Lots of water in, lots of water out, still
feeling dry. Looking back, I wish I had
some type of cellular hydrometer to measure and quantify my level of hydration,
because I think it’s a crucial part of solving this puzzle.<o:p></o:p></div>
<div class="MsoNormal">
In conjunction with these thoughts of hydration, I’ve been curious
about WHY the CCSVI process worked. What
was going on inside the head? The body?
The cells? Is it the iron molecules as
Dr. Zamboni suggested in his studies, or did the body have a temporary (perhaps
permanent) avenue to reinvigorate and introduce blood – or more blood - into our
microveins? I don’t think anybody really
knows yet. Many have offered up ideas
and people really love to get the human body all tied up in knots complicating
things to the millionth degree. There
are 40-60 known clinics around the country doing CCSVI procedures, and probably
hundreds of vein care doctors who do it without advertising, all with varying
degrees of success – and opinion. The MS
Society and many doctors think it doesn’t work with any degree of regularity,
and say results, if any, are short-lived.
Even my success is seen as a failure in the medical community because I
ended up re-clotting to the point where I lost my ability to be a surgical
candidate on the left jugular any further.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Everyone agrees MS is a disease caused by lesion growth in
the brain, but nobody seems to agree what the root cause is. Many theories have emerged over the years,
and blood flow, as one theory, has come and gone. Prevailing thought on all the mainstream
websites is that the disease is an auto-immune deficiency resulting from the
body attacking itself. Many of us who
have this disease don’t believe that for a number of reasons, not the least of
which is the failure to explain why no lesions in MS patients are below the
shoulders. The disease has been
relegated to the back rooms of most neurology clinics and doctors’ offices because
it’s the ugly stepchild disease that can’t be fixed or really treated
properly. Doctors throw medicines and
drugs at it that have no more proof of efficacy than CCSVI. In short, MS is a great big bowl of bad
spaghetti and nobody knows why. The
extra bonus is they tell us we’re getting closer to finding the solution every
day, but there doesn’t seem to be any proof of that either.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So back to hydration.
My theory for some time now has been that MS isn’t an autoimmune disease,
and that CCSVI works (even if temporarily) because of blood perfusion. The missing link, I am thinking, is
hydration. Not the feeling thirsty kind
(although that would certainly kick in), but being hydrated at the cellular
level. The kind of hydration where your
skin feels less dry and more pliable.
The kind of hydration where constipation is part of your past, where you
hold a much higher volume of urine before having to empty, the kind where water
consumption does something inside instead of flowing right through, and when
you forget to drink water in the afternoon one day you don’t end up with a
massive headache. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Well, that’s exactly what’s happened for me. After a few sessions of seeing a healing
therapist, a woman about my age who has had an amazing gift for healing
her whole life, I have become more hydrated, and I have several improvements in
my condition to prove it. </div>
<div class="MsoNormal" style="text-indent: 0px;">
<span style="text-indent: -0.25in;">1) </span><span style="font-size: 7pt; text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">I have never lost the ability to squat down like
a catcher in a baseball game and stand back up, but I did lose the ability to do
it without holding on to something.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">I
can now.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">My legs have become stable
enough to do that a few times in a row. I still have trouble walking any
distance over a couple hundred feet, but I can usually go down stairs without
holding on to anything.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">Up is still
tough.</span></div>
<div class="MsoNormal" style="text-indent: 0px;">
<span style="text-indent: -0.25in;">2) Wet sneezes.</span><span style="text-indent: -0.25in;">
</span><span style="text-indent: -0.25in;">Ask anyone around our office.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">I
sneeze 20-30 times a day, and they are always 2-3 times per event and always
dry.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">I could sneeze at a dinner party
right in someone’s face and they’d think the open window was letting in a
breeze.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">Until now.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">Sneezing is down considerably, and much more productive.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">Every time I sneeze now we have to get out
the squeegees and wipe the windows down.</span><span style="text-indent: -0.25in;"> </span></div>
<div class="MsoNormal" style="text-indent: 0px;">
<span style="text-indent: -0.25in;">3) My urinary volume has almost doubled.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">I still don’t pump it out, it’s still urgent,
etc., but it’s less frequent because the size of the bladder trigger has
increased, substantially increasing the time between bathroom visits.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">I now generally wake up once a night to
urinate, occasionally two.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">Imagine how
that feels for sleep and waking up in the morning.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">If you’ll recall, at my worst, I was going to
the bathroom every 20-45 minutes, waking up exhausted every morning.</span></div>
<div class="MsoNormal" style="text-indent: 0px;">
<span style="text-indent: -0.25in;">4) Morning headaches gone.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">Yes, gone.</span><span style="text-indent: -0.25in;">
</span><span style="text-indent: -0.25in;">Everyone who works with me at our office knows I’ve spent the better
part of an hour or two every morning for the past few years trying to get rid of a hangover-like
feeling.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">CCSVI initially did this too, by the way.</span></div>
<div class="MsoNormal" style="text-indent: 0px;">
<span style="text-indent: -0.25in;">5) </span><span style="font-size: 7pt; text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">Bowels as close to normal as I can imagine.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">No constipation, no need to help things along
like enemas or Magnesium.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">I just go to the
bathroom regularly now.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">I haven’t had an
accident in a long time because I use my mornings to make sure I’ve emptied before
going to appointments and I’m still so used to doing that I’ll probably never
stop.</span></div>
<div class="MsoNormal" style="text-indent: 0px;">
<span style="text-indent: -0.25in;"><br /></span></div>
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<o:p></o:p></div>
<div class="MsoNormal">
It’s a bit of a bummer writing about 5 improvements in my
system, 3 of which involve disgusting bodily fluids. So, I’m sorry. Deal with it……I have to. But If these aren’t indicators of a higher
level of hydration, I don’t know what would be.
Anecdotal? I suppose, since this
isn’t a controlled study. But these are measurable
improvements that I, and others, can see.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, now the question is, have I crossed the line into a
healing environment? Is CCSVI a
temporary alleviation of symptoms that allows a greater understanding of what’s
happening? Is the real issue circulation? Is blood accessing the microscopic arteries
and veins that supply the areas where we lucky MS people get lesions?<o:p></o:p></div>
<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
What this fees like to me is hydration is leading to an
environment in which healing, ie, myelin regeneration, can take place. We won’t know for a while because even
in the perfect environment nerve cells are the slowest to grow. So stay tuned. I’m hoping to report some leg improvements in
the near future. I’ll just to keep it
under a year this time.<o:p></o:p></div>
</div>
Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com0tag:blogger.com,1999:blog-4655190994522558774.post-68036702522210789602012-10-24T13:33:00.004-07:002012-10-24T13:33:28.855-07:00
<span style="font-family: Calibri;">10/24/12<span style="mso-spacerun: yes;"> </span>Keep
Swinging<span style="mso-spacerun: yes;"> </span></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Two weeks ago I flew to Virginia to meet with a vascular
surgeon as per suggestion from my last meeting with Dr. Arata.<span style="mso-spacerun: yes;"> </span>After a presidential campaign-like whirlwind
trip that lasted 25 hours with stops in New York, Baltimore, Washington, DC,
Annandale, VA, and Minneapolis, the upshot of the meeting was that I am way too
high of a risk to do another vein reconstruction.<span style="mso-spacerun: yes;"> </span>The risk for loss of patency (i.e. won’t stay
open) is high, and more importantly, the inability to control bleeding in the
existing scar tissue is a real concern.<span style="mso-spacerun: yes;">
</span>This is similar news to what I’ve got from several vascular docs
before.<span style="mso-spacerun: yes;"> </span>The doc in Virginia is, however,
requesting all my films and procedures from Dr. Arata so they can consider some
other options for me.<span style="mso-spacerun: yes;"> </span>We’ll stay up on
that.<span style="mso-spacerun: yes;"> </span></span></div>
<span style="font-family: Calibri;">After that news, I re-contacted Dr. Arata to set up another
inverventional procedure.<span style="mso-spacerun: yes;"> </span>I got home
yesterday after that.<span style="mso-spacerun: yes;"> </span>This trip was to
try and find a way to either re-open the graft or to reconnect the native
jugular to the base of the superficial temporal.<span style="mso-spacerun: yes;"> </span>As a side note, this was procedure #11 for
me.<span style="mso-spacerun: yes;"> </span>It was #9 with Dr. A (the other two
were at Mayo), and this was the fifth location I’ve been on my back in a gown
while he poked his tools inside.<span style="mso-spacerun: yes;"> </span>The
staff at Pacific Interventional knows me quite well.<span style="mso-spacerun: yes;"> </span>Not sure if that’s a good thing……..</span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Anyway, Dr. Arata found a few things.<span style="mso-spacerun: yes;"> </span>First, the bypass graft done by Mayo Clinic
last August was outright gone and essentially absorbed into my existing tissue
in the surrounding area.<span style="mso-spacerun: yes;"> </span>I guess it said
to itself, “I’m not needed, so I’ll just take my ball and go away.”<span style="mso-spacerun: yes;"> </span>So anything to do with the idea of opening
that or saving it is out.<span style="mso-spacerun: yes;"> </span>Gone.<span style="mso-spacerun: yes;"> </span>Not an option.<span style="mso-spacerun: yes;"> </span>Second, he wasn’t able to navigate his tools
inside the vein(s) to reconnect or stent any of the native jugular because of
the spaghetti bowl mess I have in there now.<span style="mso-spacerun: yes;">
</span>Third, the collateral that has been developing since the bypass graft
clotted is actually doing well and has formed into a decent pathway.<span style="mso-spacerun: yes;"> </span></span></div>
<span style="font-family: Calibri;">While I was lying on the table in a sedated state (by the
way, I vaso-vagelled again), Dr. A told me about these things he found.<span style="mso-spacerun: yes;"> </span>In my state of loopiness, I asked him what
the plan was, and he told me there is a good chance we could reconnect the
original native veins together by a kind of hybrid surgery/intervention
procedure where the surgeon gains the access to the area and he does the
stenting.<span style="mso-spacerun: yes;"> </span>He said he would discuss this
with some surgeons in the coming days.<span style="mso-spacerun: yes;">
</span>He told my wife of the findings as well.</span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">As I went to the recovery room and then headed home with
Kathy, I began to think about many things surrounding my condition.<span style="mso-spacerun: yes;"> </span>The obvious connection I have to open veins
and better walking is well documented for me, so the things I thought about
were more related to this opening of the vein and why this is so difficult.<span style="mso-spacerun: yes;"> </span>I thought about how the technology has
evolved in the past couple of years to address the clotting issue on initial
CCSVI procedures.<span style="mso-spacerun: yes;"> </span>I thought about how
the venous bypass last August was so successful but was rendered useless when
it clotted again.<span style="mso-spacerun: yes;"> </span>I thought about how
fortunate I was to have Dr. Arata right there inside my veins with the tools
and the knowhow to gently pry open my collateral a little more but made the
choice to not do that, knowing if that collateral clotted from an intervention
I’d get worse.<span style="mso-spacerun: yes;"> </span>The decision to stop then
and there and consider other options was great.<span style="mso-spacerun: yes;">
</span>Leaving me no better and no worse and with other options to consider was
just a great medical decision.<span style="mso-spacerun: yes;"> </span></span></div>
<span style="font-family: Calibri;">Mostly I thought about what was next.<span style="mso-spacerun: yes;"> </span>I have to keep swinging.<span style="mso-spacerun: yes;"> </span>If I stop swinging, I might get a walk, but it’s
more likely I’m going to be out.<span style="mso-spacerun: yes;"> </span>This is
a long at-bat.<span style="mso-spacerun: yes;"> </span>I’ve swung 11 times at these
CCSVI pitches and I’m still not out.<span style="mso-spacerun: yes;"> </span>I’m
down.<span style="mso-spacerun: yes;"> </span>I’m wondering “why me.”<span style="mso-spacerun: yes;"> </span>I’m wishing this wasn’t such a huge part of my
life.<span style="mso-spacerun: yes;"> </span>But I’m not out.<span style="mso-spacerun: yes;"> </span>With 11 strikes, the only possible way I’m
still up to bat is I keep swinging and fouling it off.<span style="mso-spacerun: yes;"> </span>I get enough of a piece to stay alive.<span style="mso-spacerun: yes;"> </span>It might end up being one of the longest
at-bats in history, but I’ll keep swinging until I miss completely and I’m out
or I get some solid contact.<span style="mso-spacerun: yes;"> </span>It seems this
is just my nature. </span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">We’ll explore the possibility of this hybrid
surgical/intervention, and in the meantime I will also look into the idea of
furthering the reduction of the inflammation, which heightens my symptoms, by other
means.</span></div>
Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com1tag:blogger.com,1999:blog-4655190994522558774.post-57267004582563138792012-09-25T10:32:00.002-07:002012-09-25T10:32:39.635-07:00
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">9/24/12<span style="mso-spacerun: yes;"> </span>Doggone it……</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">I went to see Dr. Arata in LA a couple weeks ago to see how
the collateral was holding up in the left jugular.<span style="mso-spacerun: yes;"> </span>I was beginning to feel some more of that
irritating presence in my left temple, my legs have not been doing very well
over the summer in the heat, my bladder is almost devoid of any emptying
pressure, my bowels not doing quite as well as before despite the magnesium,
and in general I feel a bit of a decline from my last post.<span style="mso-spacerun: yes;"> </span>The good news is the brain fog and morning
headaches seem to be not returning.</span></div>
<span style="font-family: Calibri;">Through an MRV I learned my collateral is holding steady and
the right jugular is still doing well, so it remains fairly clear about the
correlation between my MS and my veins.</span><br />
<br />
<div class="MsoListParagraphCxSpFirst" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">1)</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><span style="font-family: Calibri;">I’ve had my left internal jugular vein open and
close so many times this is undeniable.<span style="mso-spacerun: yes;"> </span>Every
time my vein has been opened up, my condition improves.<span style="mso-spacerun: yes;"> </span>Every time my left jugular has clotted back
down, my condition worsens.<span style="mso-spacerun: yes;"> </span>And it’s not
just subjective.<span style="mso-spacerun: yes;"> </span>All my friends, family,
coworkers, etc. all notice the difference.<span style="mso-spacerun: yes;">
</span>I’ve had 9 angio/venoplasties and one vascular reconstruction.<span style="mso-spacerun: yes;"> </span>The improvement after the reconstruction is
quite well documented, and I sit about 13 months post op after it clotted about
6 -7 months ago with symptoms slowly deteriorating.<span style="mso-spacerun: yes;"> </span>It doesn’t get much more obvious than that.</span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">2)</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><span style="font-family: Calibri;">For me, the left jugular has a greater impact on
my walking and bowel/bladder symptoms than the right.<span style="mso-spacerun: yes;"> </span>I have a slower reaction to the loss of blood
flow with the right open and it seems by having the right open my brain
function, brain fog, morning headaches, and the like is still good, but there
simply isn’t enough flow on the left side to keep my legs and pelvic symptoms
under control.<span style="mso-spacerun: yes;"> </span></span></div>
<br />
<div class="MsoListParagraphCxSpLast" style="margin: 0in 0in 10pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">3)</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><span style="font-family: Calibri;">Given my problems are accentuated by the left
side blockage, and the symptoms are more slowly building because of the collateral
that formed on that side, what can we conclude, if anything?<span style="mso-spacerun: yes;"> </span>Is the collateral allowing blood flow equal
to, more than or less than prior to any intervention?<span style="mso-spacerun: yes;"> </span>Is it deoxygenated blood, loss of blood
nutrients, or the venous hypertension contributing to those symptoms?<span style="mso-spacerun: yes;"> </span>Is it all, both, or neither?<span style="mso-spacerun: yes;"> </span>How close is the blockage and associated
back-up to the lesions in my head?<span style="mso-spacerun: yes;"> </span>Are
these lesions sensitive to hypoxic or stagnant blood?<span style="mso-spacerun: yes;"> </span>Are they sensitive to the pressure build
up?<span style="mso-spacerun: yes;"> </span>Is there a way to transvenously
stimulate the lesions to promote healing?</span></div>
<span style="font-family: Calibri;">The most frustrating thing in this disease, beyond the
quality of life, is the constant onslaught of nonsense I read in every medical
journal or article that reads something like “MS is a disease affecting the
auto-immune system, causing the body to attack the myelin sheath.<span style="mso-spacerun: yes;"> </span>There is no cure, but there are treatments
that can help improve the quality of a person’s life.”<span style="mso-spacerun: yes;"> </span></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">So let’s be clear.<span style="mso-spacerun: yes;"> </span>I
live with this every day, I can feel the symptoms, I’m reasonably intelligent,
and I’m pretty in tune with my body thanks to an athletic history.<span style="mso-spacerun: yes;"> </span>MS is not an auto immune disease.<span style="mso-spacerun: yes;"> </span>It shows up with neurological issues that
affect people in thousands of different ways.<span style="mso-spacerun: yes;">
</span>It is rooted in vascular hypoxia, and the treatment (and possible cure)
is to improve oxygen transfer to levels of normal people let the body to heal from the inside
out.<span style="mso-spacerun: yes;"> </span>Yes this is my opinion, but one day
this will be proven through the proper scientific methods.</span></div>
<span style="font-family: Calibri;">For now, I’m awaiting a consult for another vascular surgeon;
a guy who understands what we’re doing here and gives me the best probability
of success.<span style="mso-spacerun: yes;"> </span>Because I have the two bad
jugulars, I’m down to a few limited choices on how I can get my left jugular
flow improved so the upstream veins in my head can deliver proper oxygen transfer.<span style="mso-spacerun: yes;"> </span>I have two useless jugulars on my left side
right now (native was stented then bypassed, and the graft shriveled up) and I
have enough of a vein left below the skull to potentially attach another graft.<span style="mso-spacerun: yes;"> </span>I could possibly wait for the collateral to
fully form into a proper vein, them incrementally balloon it over 3-6
procedures to get the flow up to the desired levels.<span style="mso-spacerun: yes;"> </span>I’m willing to take anticoagulants – even indefinitely
– if I have to, but I do have to tread lightly so the next thing I do has the
best chance of success.<span style="mso-spacerun: yes;"> </span></span><br />
Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com2tag:blogger.com,1999:blog-4655190994522558774.post-33503091621316719052012-06-11T17:11:00.001-07:002012-06-11T17:11:23.690-07:006/11/12 I'm afraid to Jinx it.......<br />
<br />
As I had previously posted, I was riding a bike and using the Abdoer Twist in my living room to begin the process of getting a move on with the slow process of recovery. And it was having interesting results in that I could do the bike for a reasonable period of time and actually walk after. Since that time, I've had some interesting twists (no pun intended). My right leg, the injured one, has been very slow in healing, making me realize just how badly I injured it. My left leg, the one more affected by the MS, is hard to determine how its coming along because the right leg is so weak. <br />
<br />
I finally went to see a doctor about my injured right leg. An MRI revealed I tore the PCL on the right knee and in the process of dislocating the right hip, it has caused a disruption in the ligaments giving me a clicking sensation and causing me to have a pain reflex and fall down. One fall was at a casino, so I guess I let that opportunity to cash in slip away.......<br />
<br />
The doctor ordered Physical Therapy for my right leg, so I started going to a rehab clinic 3 times a week. Also a few weeks ago, we took a weekend trip over to Lake Powell. Despite the cooler weather that weekend, my son really wanted to play in the pool. I ended up playing around with him in the water and found that taking some weight off allowed me to move my legs around quite freely. I even reached a point where I could stand with the 170 pound beast riding on my shoulders.<br />
<br />
On the drive home from Lake Powell, my wife and son convinced me to join the new gym that opened up in town. It's a national chain, has a rock wall, all kinds of sport courts, a pool, and a million exercise machines. So between the physical therapy and the pool work, I somehow have ended up becoming a bit of a gym rat again. <br />
<br />
Now to confuse the story a little more, I'll add another element. A friend recently told me about the benefits of taking iodine. A few drops a day to help clean things out, he said. I figured it couldn't hurt. so I added this to my good food, protein rich, magnesium and other supplement diet. <br />
<br />
Fast forward a couple of weeks now. After a few weeks of therapy, pool work (i.e. walking, running, jumping, squats, etc. in the water), and iodine, here's what I can report. <br />
<br />
1) I go into the gym with a limp on my right leg. I come out limping on my left. The right loosens up and strengthens during the workout, but the left (remember it's more affected by the MS) fills up with lactic acid and feels like I just finished a marathon. Both legs are becoming stronger though.<br />
<br />
2) I have been coughing up more mucus than I have in years. It's gross but the cleaning out effect is quite remarkable. <br />
<br />
3) My urine is dark and smells awful, and no clear urine has passed in a couple of weeks.<br />
<br />
4) My bowels have been dark and gross as well.<br />
<br />
5) I feel stronger overall in my body than I have in 5 years. <br />
<br />
6) I've put off posting to the blog because I don't want to jinx it. <br />
<br />
I can't put it off anymore. Too many people follow this and have requested the update. So I'm breaking down and posting the update, reporting that I feel pretty darn good, the left temple presence is minimal except during the hardest workouts, my legs are both strengthening, and perhaps most notably, I am sleeping through the night without having to go to the bathroom.......more consecutive nights than I've had in a long time. <br />
<br />
<br />
<br />
<br />
<br />Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com0tag:blogger.com,1999:blog-4655190994522558774.post-65074620302970025522012-04-11T19:44:00.000-07:002012-04-11T19:44:16.445-07:004/11/12 Riding a bike like old times<br />
<br />
I had another visit at Mayo Clinic yesterday with a cardio-thoracic surgeon. I'm always so amazed at how prepared these doctors are when they walk in the room to talk. Most of the time they know more about me than my parents, and this visit was no different. I discussed the symptoms and we discussed the risks. Overall I am much better off since doing the CCSVI in Oct 2010, but not as good as the height of my recovery toward the end of last year. <br />
<br />
Doc looked at my latest intervention on 2/28, and he thought it was a good thing that my right jugular was huge and though my left side was occluded, it had formed a good sized collateral that seems to be relieving the pressure somewhat on the left side. We had a nice lengthy discussion, almost an hour, and his final offering to me was that the surgery could be done, he'd be willing to do it, I'd likely survive it, but he'd have to go into my chest to attach to the inominate vein or the superior vena cava whic increases the risk and lengthens the recovery, and also it would very likely disrupt the collateral that has relieved some of that pressure. Most of all, he felt the risk of loss of patency (i.e. the vein staying open again) was not good. In short, he felt that I was clotting the left jugular because the flow dynamics were simply not calling for it, and it was closing up essentially from lack of need. <br />
<br />
Who knows if that's right or not, but it does represent one plausible theory. So that's two Mayo Clinic doctors recommending against another surgery. Still waiting on some more appointments.<br />
<br />
So what's this about riding a bike? <br />
<br />
I have an exercise bike in the living room and I ride it in the mornings while watching TV. I get my pushups in and I do my abs on my abdoer twist, and get myself pretty limber, but since I hurt my right leg on the dirt bike again, I haven't ridden the exercise bike. Now, I have to admit that part of the reason I don't like the exercise bike is because I usually ride it for 10 minutes then have to sit on the couch for an hour or so because I can't walk. Well, in the ever changing world of the wonderful disease, suddenly I'm riding this bike like I used to before the disease. All last week and Monday and Wednesday of this week I rode for 30 minutes or so and got off fully walking and able to carry on with my day. I've also noticed that my ability to hold urine has improved a little and that the bowel seems to be heading back toward less constipation and more control. Small improvements to be sure, but noticeable. <br />
<br />
I haven't been able to ride a pedalling bike for any length of time for 2-3 years or more. Now suddenly I can ride the thing for 30 minutes and get off and walk around. What gives?<br />
<br />
<br />
<br />Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com2tag:blogger.com,1999:blog-4655190994522558774.post-61664863454874827122012-04-02T18:53:00.000-07:002012-04-02T18:54:09.089-07:004/2/12 What do we fight for? Is it worth it?<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfD4tKBBuFXkaepI4KyujiKgY9VkKCjwVOpEhokB4K4tEtsQVvPmjQulFHEqdyC9FYmYrMPWe648cCMxnn9V6PGz2GOfqUfv3z8T16Bj2x-B4gXtSTs9C84ut8O7Mdmgs2XkUJNdjQLm1i/s1600/1228081323b+(2).jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfD4tKBBuFXkaepI4KyujiKgY9VkKCjwVOpEhokB4K4tEtsQVvPmjQulFHEqdyC9FYmYrMPWe648cCMxnn9V6PGz2GOfqUfv3z8T16Bj2x-B4gXtSTs9C84ut8O7Mdmgs2XkUJNdjQLm1i/s200/1228081323b+(2).jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One and only time on a horse......Los Osos, CA</td></tr>
</tbody></table>
After coming to the full realization that my left jugular is now flowing like a muddy arctic river in December, most of my efforts now have turned to what to do about it. I had a vascular consult with a Doc from Loma Linda in Southern California and another visit with Dr. Stone at Mayo last week. I have several calls and records in to others and I have a few more consults scheduled, which I'll share after they take place. <br />
<br />
The Doctor at Loma Linda initially had a lukewarm repsonse to my case, but as Kathy and I talked about it with him, the interest level rose to the point where he took it to the conference level with his staff and will get back in touch with us shortly. We were quite encouraged after that visit, because after we left they caled right away to get some more details and dates. We also got another call from one of the docs we had been waiting on for a few weeks, so the drive from Loma Linda to Phoenix was a pretty upbeat.<br />
<br />
At Mayo, Dr. Stone flat out told me he felt the risks of another surgery were signficantly higher than the first reconstruction and said he isn't going to do it. I have a lot of respect for him professionally, so I won't go into the sordid details of our discussion, but suffice it to say he doesn't want to be the guy who sees my last breath. <br />
<br />
As we drove home from Phoenix on Friday, we had 5 hours or so to digest things before we hit the truly amazing Hoover Dam bypass bridge. Why does my left jugular keep clotting? I don't have a hemotology makeup conducive to clots. My legs don't have DVT, and my arms and legs actually look fairly muscular. My head isn't swollen, my eyes aren't popping out of my skull, and one of the thigs Dr. Stone said was that if I didn't have MS, as a vascular surgeon he wouldn't even consider the surgery in the first place, let alone the second. Said it would be something tantamount to medical blasphemy, because veins collateralize and return blood to the heart. My blood pressure is normal, too, so that's another reason.<br />
<br />
So why does it keep clotting? The right side is huge and flowing beautifully. Is that the cause? That I'm returning the volume of blood needed to work properly so the left side collapses enough in low flow conditions to start a clot?<br />
<br />
It's a million dollar question to be sure. But even more challenging is what to do about it? Here's the rundown on the dilemma.......<br />
<br />
1) The MS disease itself seems to be at bay, with no attacks for quite some time. <br />
2) The overall symptoms have been stable for a little while. I was getting a LOT better through the end of the year and then pulled back a lttle bit, but not to the point I was when I started this whole thing. My left leg was getting elephant-like, and I've maintained the normal leg look. Urinary symptoms are a little worse, walking is a little worse, bowel is a little worse but still much better than before.<br />
3) I have a little bit of a presence (like a dull ache) in my head, left side, from the temple to the upper jaw, that seems to escalate when I try to exercise. It subsides a little when I clear my ears as if I am on a plane in the climb. <br />
4) I feel like I'm hung over on most mornings and it takes awhile to get whatever is in my head to drain out and get things going. <br />
5) The left jugular, though plugged up, has collateralized to a surprisingly large degree. It isn't a nice straight drain like the native should be, but it's about a third of the size of the right jugular.<br />
<br />
If I have another vein reconstruction, I face all the surgical risks such as death, nerve damage in other areas, etc., and the possibility of yet another failure. If I don't have the surgery, I face the probability of the left temple presence worsening, and MS coming back active, taking me down another notch and/or adding more failures to perhaps my arms which are currently unaffected.<br />
<br />
It's torture. I can't believe I have to go through this type of analysis at 46 years old. Why don't I get to run or even walk like a normal person? Why do I have to have every business meeting interrupted by a bathroom emergency? Why can't I just bend down and fix something like I used to? Or take my son to Colorado to ski during spring break? Some might say it's hell.<br />
<br />
I often wonder why I go through the fight every day. Is the chance of a worsening MS condition worth the chance of a severe surgical complication? Can I live with myself if I get worse without contuing to try? Is another reconstruction just going to result in another clog? Is it possible to gently open the collaterals with the angio balloons? Is there another way?<br />
<br />
Then I see my wife and son. There's no torture. There's no hell. There's only survival and a search for answers. I figure I'll go see somewhere between 5 and 8 vascular surgeons, then sit down with all the data and discussions and make a decision on how to best proceed. In the meantime, I'll keep my head up 90% of the time and minimize my sorrow for the other 10%. <br />
<br />
<br />
<br />
<br />
<br />Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com0tag:blogger.com,1999:blog-4655190994522558774.post-11471283818609867902012-02-29T13:29:00.000-08:002012-02-29T13:29:38.404-08:002/29/12 Is Silence Golden or Bad News?<br />
<br />
The facts are the facts, so I guess I just have to report them and let the rest fall where it falls. After doing so well for a few months, I began to feel a few little problems in Mid-January. I lost a little bit of spring in my step coming down stairs, I had trouble on the motorcycle riding down hills as I started creeping up on the tank by not holding myself back on the pegs, and perhaps most telling, I was starting to feel that presence I have in my left superficial temporal vein when the blood isn't flowing. Knowing I had an appointment at Mayo in 2 weeks, I decided to wait and go to that to see if some of my fears were coming to fruition. <br />
<br />
On February 13th I headed to Phoenix and had an ultrasound done of my jugulars. After being in the room with the tech who does the test for an hour, and then having the radiiologist come and try to find it, I knew things weren't going well. The long and short of it was 100% occlusion of the left jugular yet again. I then went to my appointment with Dr. Stone who, after reviewing the films, extended his hand to me and said as we shook, "Well we tried." When I asked about further options, he advised he wasn't going to do the surgery again because in his opinion the risks outweighed the benefits.<br />
<br />
I have no intention in this blog to be disrespectful to any doctor, especially those who had offered me help and hope, but in making that assessment, I don't think Dr. Stone really considered my future as an MS patient who is currently 46 and otherwise very healthy. I'm as good a candidate for surgery as anyone, and I'll take a 3 or 4 month recovery over a slow decay any time. So suffice it to say my trip to Phoenix wasn't so enjoyable.<br />
<br />
The following two weeks saw my left leg continue to tingle as though I were sitting on a table with my feet off the ground, and I felt my balance continue to wane a bit. I didn't lose much elsewhere over this period, but it was clear that I've slipped back some. <br />
<br />
I contacted Dr. Arata again to see what to do and after the scheduling process, I went to see him yesterday in hospital. While on the table, he poked around my left jugular and found it was completed impenetrable from both the bottom and the top (as a side note, to access the top of the clot, the wire catheter went all the way from my groin up through the right jugular, around my head and down to the left jugular. It looked like a big shepherd's crook). That was the bad news.<br />
<br />
Dr. Arata told me that native veins have small, hairlike pieces that hold the vein in position and help provide the blood and oxygen, but a graft like I had absolutely required the blood to be flowing from the top in order for it to survive. He told me the graft had essentially died and shrivelled up inside my neck. That was worse news.<br />
<br />
There was some good news though. He was worried that I might have lost the capability to have another vein reconstruction, but the procedure yesterday showed him I was a great candidate for a second surgery, given my overall health, age, condition of the jugular below the skull, and other factors. While I was still groggy on the table he explained it to me and also called my wife, so as I drove home, we talked about it at length. <br />
<br />
One of the stated goals found in this blog is to rid myself of this disease. I think I've actually already done that because I haven't had any MS attacks for quite some time, and while I cross my fingers that I won't have another, I do say this with some confidence. So if the disease is out, the damage needs to be repaired, and this means there really isn't any option. Surgery is what's needed to get the vein open again, and I have the benefit of learning that I will probably have to stay on an aticoagulant for a longer period of time, perhaps indefinitely, to help avoid the graft failing again. <br />
<br />
Dr. Arata's staff is working on getting things set up. In the meantime, I sit here at my computer reporting once again, that CCSVI, while it has risks, is correlated to MS at least for me. And anyone that wants to say this is a placebo effect would be incorrect. Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com1tag:blogger.com,1999:blog-4655190994522558774.post-67965865741761503372012-01-30T16:16:00.000-08:002012-01-30T16:16:33.562-08:001/30/12 My leg looks like a leg againMy son Jake has been posting up some videos of us out on the dirt bikes lately. We got a GoPro helmet camera and this has become one of the ways we can document how things are going. Unfortunately, we haven't done such a good job at editing them so what you have it a rambling on of us riding through the trails here in Nevada, so we will try to get that edited asap.<br />
<br />
We went for a ride again over the weekend. Sunday the 29th was up to a spot we call the garden of eden for some skinny trails, both single and slightly wider than single track. I ended up doing literally thousands of whoops (bumpity bumps or moguls for the skiers) until my legs felt like they were going to fall off. I've developed a new way to go over the whoops, kind of a hybrid method between how I was doing it (i.e. slogging through them sitting on my butt while holding on for dear life) and how they are supposed to be done (standing on the pegs in the athletic position letting the bike do the work underneath). It's made the ride a lot quicker and more fun, and my legs seem to tolerate it well. <br />
<br />
Ah yes, the legs. Those appendages below the butt that are supposed to give us the ability to ambulate perpendicular to the ground at a speed commensurate with the needs at the moment. I remember when mine did that. I've forgotten what it feels like to run or even jog, and I don't remember walking without having to put a great deal of effort into it. No question my walking is better, but I'm not out of the woods yet. <br />
<br />
The big thing to report today is what my left leg looks like, namely a human leg that matches up with the right one. The bumps on my ankles are the same, and I can see my veins and other features on the top of my foot. Just before my first CCSVI, my left leg was swollen. No features were visible on the top of the foot, and it looked a bit like my foot was inside a balloon. I got the CCSVI and immediately noticed the features the next morning, but as I clotted up each time over the fillowing year, I had various degrees of swelling show up. Then in August after I had my vein reconstruction, my leg looked like I got iinto a knife fight for awhile, then it was swollen up for a bit, the wounds wouldn't heal for awhile, and then I managed to get contact dermatitis from the neosporin. The thing has even looked like a memory foam mattress from the edema. Today, it looks like a leg. Still have the scars from the sutures, but it looks like a leg. <br />
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Hopefully soon it will work like a leg. <br />
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ps. Since increasing my magnesium intake I have averaged two unassisted bowel movements a day. What an immense relief this part of the puzzle is. Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com1tag:blogger.com,1999:blog-4655190994522558774.post-13371264856745027482012-01-09T09:00:00.000-08:002012-01-09T09:00:40.429-08:001/9/12 New Year, New LearningAnyone with MS knows there are times that trying to deal with this disease is just overwhelming. I have thought many times that if I just stayed where I am now and didn't get any worse I could make it to the end of my life feeling ok. Then there are the times when I ask myself, "what's next?" when something goes wrong or I have a day that doesn't seem to be an improvement. It sometimes feels like driving down a long, narrow, winding road at night with just the parking lights on. With no idea what's around the next corner, a quick sense of relief is soon followed by the challenge and uncertainty of the next one. It's exhausting, and no matter how many corners you make it around without being hit, you can never let the guard down.<div>
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As my legs continue to strengthen (I'll post a video of me coming down stairs soon) and my nights of waking up in a soaked bed seem to fade, it's hard to not feel like my 10-try CCSVI was worth it. grueling, disappointing, frustrating and irritating as it was, Dr. Arata and Dr. Stone combined in ways they will likely never know to get me on a path where I feel I can not just avoid those dark corners, but to actually shine some bright lights down the road. It's hard for people who have never known me as an athlete to think of me as an athlete, and wonder why it's so difficult for me to accept being hindered. I don't often see people who knew me before the disease, so I'm out of sight and out of mind. Doctors don't see me on a daily basis and only try to address their specific disciplines. My son is only 13 (nearly 14) and he kind of understands but not really. So it's up to my wife and I to figure things out. And I say this again....my goal isn't to just "not get worse." I want this disease out of my life. Period. And that is what I will achieve.</div>
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Between searching the internet, talking with friends who are doctors, and friends who are non-doctors, it's clearly a lengthy road to recovery. CCSVI is still not well understood by the medical community, and many people who have had their veins opened up have not experienced much relief and/or had complications. Because I had the initial relief from the hypertensive environment and </div>
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I continue to see something measurable fairly regularly, I have the benefit of feeling what is happening. My thought is the MS disease itself is gone and now I have to weather the passage of time for the nerve damage to heal. Nerve cells take the longest to repair in our bodies, so this makes sense. It also makes sense that, if true, I will regain function in the reverse order that I lost it. So from the day my veins were finally opened back in August, my daily mission is to do anything I can to keep improving. Easier said than done, but any progress is hope.</div>
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Lately the thing that seems to be improving is my bowel function. Perpetually constipated for the past few years, my wife and I have come across magnesium in our research. It seems I have had a magnesium deficiency for some time and didn't know it. Both times when I was in hospital in 2011 my exit was delayed because I was low on magnesium. I thought that was surgery related and didn't put much into it, but as we began to research the symptoms of magnesium deficiency, it became clear this was something we needed to research further. </div>
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Many symptoms of magnesium deficiency are also symptoms of MS. Only 1% of the magnesium in our bodies circulates through the blood, and therefore extrapolation of magnesium blood tests does not suffice as a true test of the levels of magnesium in our bones and cells. Many articles state that magnesium helps in the enzymatic reactions of some 300 bodily functions. Calcium contracts muscles while magnesium relaxes them. Magnesium is absorbed into the lower intestine and colon and helps hydrate that area, easing constipation. Too much magnesium leads to diarrhea, so it's not too difficult to experiment on the proper levels.</div>
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The main problem with Magnesium is it is not well absorbed in many forms. I have tried numerous pills and supplements, and also injections, with no real success. We recently tried a product called Natural Calm, which is Magnesium Sulfate in powder form that is mixed in water, and this seems to be doing the trick. Between the CCSVI, i.e. improved blood circulation, and the introduction of more magnesium into my system, my bowels are working much better. No more enemas and frustrating mornings trying to clear out before a meeting. I'm much more regular too, another clear sign of improvement. </div>
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As 2011 ended last week and 2012 rolled in, I closed my eyes for awhile and I wondered if this would be the year things turn around. It's been a tough road for these past 5 or 6 years. Between the economy and this disease with all of its complications, I have wondered many times what I did to deserve all this. The answer never seems to show up, but perhaps if I can turn it around and keep improving this year, the experience will have been worth it. </div>
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<br /></div>Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com2tag:blogger.com,1999:blog-4655190994522558774.post-75423508887913740402011-12-12T18:43:00.000-08:002011-12-12T18:43:38.420-08:0012/12/11 Conclusive Evidence <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">A quick break on some sandy terrain</td></tr>
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Those who follow this blog know I spend a lot of time on the trails riding my KTM, and this weekend was no different. Saturday I rode with Kathy and Jake on their quads, and Sunday I was out with my friend on his Yamaha. I wasn't really too in tune with how much I've improved on the bike until Sunday when we rode some 65 miles on a wide range of terrain types. At about 50 miles into the ride, my legs were just exhausted. Gone. Done. For the last 15 miles, the ride was significanty more difficult and I became a spectator on my bike. Let me explain.</div>
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When I first got the bike last year, my legs were weak but improving after my first CCSVI. I was also brand new to riding, and obviously not very good at it. Accordingly, I didn't have a very good gauge on my progress either as a rider, or more importantly, on my disease. Then my left jugular began to clot and I went into the hospital in February, coming out after 10 days and on Coumadin (off that stuff now). My legs were ridiculously weak by then, but I wanted to ride to get out and enjoy. I fell off so often it was not funny, except it really actually was funny - at least to everyone else. Most people think of falling off a motorcycle as quite an injury threat, but most of my falls were more like no-leg tipovers when I lost momentum and couldn't get a leg out to save myself. All my riding buddies talk about how slow motion and animated my falls are as they laugh at me.</div>
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Over the past couple of months, my riding has really improved. I'm not afraid of the sand anymore, my cornering has improved immensely, especially in the soft stuff, and I seem to just charge up most of the hills without too much trouble. That is, until mile 50 yesterday. After some amazing scenery and terrain of every imagine, we hit the whoop section (skiers would call these moguls). I tried to work my way through them as I had the rest of the day, but that was it for standing up on the pegs. As I said above, the legs were gone. I had to sit down for most of the rest of the ride, and suddenly I was like a spectator on the back of a hay wagon. I suddenyl started falling in the ruts more and slogging through the sand like I was back earlier in the year. And suddenly it was clear to me. I have improved as a rider, and more importantly, my legs are stronger.</div>
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One of the reasons I love the bike so much as a form of exercise is because for the most part my feet stay on the footpegs in one place. The rubber on the bottom of the boots stick onto the serrated pegs, and all my adduction and abduction issues subside, leaving me with overall leg strength to manage. Sunday became 100% clear that my legs are so much stronger and I'm a better rider to prove it because my legs are helping with turns, bumps, whoops, weight shift, and all of the other things legs do on a bike. The first 50 miles I had strength, and the last 15 I didn't. It was conclusive, obvious, powerful, and quite exhilarating. </div>
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We got back to the truck and my riding buddy had to peel me off my bike and I had to sit down for a good half hour before I could even stand up. We then loaded up and headed home, and I felt empowered that another little step in my recovery seemed at hand. <br />
<br />Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com0tag:blogger.com,1999:blog-4655190994522558774.post-42249566923483658222011-11-28T12:42:00.001-08:002011-11-28T13:05:31.544-08:0011/28/11 Bedwetter no more?Quite possibly one of the most emasculating and embarassing things about having MS for me is the loss of bladder control. I have almost all of the urinary problems people describe: frequency, urgency, incomplete emptying, dribbling, inability to go, starting and stopping, no bladder pressure, and of course, loss of nocturnal control, aka bedwetting. Perhaps one of the most motivating things about having had a CCSVI procedure (and the subsequent vein reconstruction) are the little victories that seem to come along every now and again. <br />
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I've never really posted about one of my MS problems because I assume most MS people know of this to be an issue and also because a 45 (now 46) year old man shouldn't be dealing with the inability to wake up before peeing in the bed at night. But I do. For about 3-4 years now, somewhere in there anyway, I started having to go to bed with a diaper. I could beat around the bush and call it an adult undergarment, but let's call a spade a spade - I've been sleeping with diapers to try and keep my wife from divorcing me over having to wash the sheets every day. I was treating my bed like a dog treats a fire hydrant almost nightly. First few times it happened was a shock followed by some intense anger, disbelief, and worry. It's hard to feel sexy and wanted waking up in the middle of the night in a puddle the size of a bathtub, fetching a giant beach towel to mop some of it up as I lay awake wondering why my life has gone this way. It's emasculating as anything I can imagine.<br />
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The good news is, since my vein reconstruction on August 12th, I seem to have this one beat. No incidents for a good 3 months now so I decided to go out on a limb and write about it. I'm back to sleeping in my normal bedroom garb (I'll try to keep that vague for decorum purposes - no need to ruin anyone's appetite), and I wake up one or two times a night to get some relief, then wake up in the morning without foul or foam. Kind of a nice feeling, actually. A far cry from waking up every hour - 6-8 times a night - in soaking wet sheets and spending day after day exhausted. It just wasn't a great day when I finally went to Walmart to pick up the product......<br />
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Anyway, not to belabor the point in a weird subject, I see this as another little sign that perhaps I'm moving toward the right direction in terms of my overall progress. Remember, my goal is to say I HAD MS, not have it, and things like this help me in my pursuit. Perhaps writing about it will help keep someone motivated to do what's necessary to keep the jugular veins open and circulating well. Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com2tag:blogger.com,1999:blog-4655190994522558774.post-4375813814129166082011-10-31T08:35:00.000-07:002011-10-31T08:39:23.445-07:0010/31/11 Getting Better, but.....?Big Bear Lake in Southern California hosts one of the great Oktoberfests every year, and this past weekend was time for us to get together with our friends from San Luis Obispo and enjoy the annual pagan ritual. Last year was a real bummer for me. I felt so alone in a sea of people dancing, partying, drinking and generally enjoying themselves while I stood outside, heart out of rhythm, legs the worst they've ever been, and generally not enjoying myself. <br />
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What a difference from a year ago. Last year we went to Big Bear a couple of weeks before my first CCSVI and I was miserable as I felt my legs slowly drifting into the black hole, but shortly afterward I began to feel some real hope as a result of that procedure. I had about 6-8 weeks of relief from the first CCSVI, and it became the beginning of this one year (to date) journey of the open vein. Come January, my left jugular had clotted and my symptoms began to return, and thus 2011 became a year of trying to get the clotting under control. 9 procedures including a vein reconstruction later, my progress is beginning to feel like I'm heading in the right direction again.<br />
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But it's not without its challenges. As part of our Big Bear ritual, we bring the motorcycles and ride the hundreds of miles of fire roads and other trails around the area. It's downright beautiful around Big Bear. 6-7000 feet, above the smog of LA, seldom rains, and smells like pine about everywhere you go. Saturday we rode about 50 miles, and Sunday we got about 55 in. On Sunday, we were running a little late, so we tried to find a shortcut over the mountain. After a reasonably good climb on nice terrain, it suddenly got rocky and narrow, with ruts and potholes everywhere. <br />
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I can't stand up on the bike for any length of time, and I also can't really stand in the athletic position required to navigate the slop. I thus have to sit and try to make my way up the rocky hillside as best I can and my eyes jiggle as it becomes more and more difficult to keep the momentum. Obviously, this is where most of my low speed falls take place, and my riding partners have to come and rescue me. <br />
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I made it up a fair distance, then lost control and slid down into a big rut, then got the bike stuck. I didn't fall, but I was hopelessly stuck on some boulders down in a giant rut the height of the bike. My buddy came back to find me and he got the bike out as I took every piece of energy I had to try and crawl out of the rut. A normal person would just climb out and walk up with the bike, but with all the progress I've made, this situation is definitely where the intense weakness and loss of motor strength shows up.<br />
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Strangely, this time I wasn't so mad about it. I usually get quite upset when I can't walk out of somewhere, but on this day, I just crawled out of the hole, got back onto the bike and did my best to navigate down the hill back to the better terrain. <br />
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We got home late last night and I popped up this morning to go swimming. So I guess it's fair to say I am getting better, but........I still have a ways to go before I'd call this fixed. <br />
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Sure had a nice time though.Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com1tag:blogger.com,1999:blog-4655190994522558774.post-86161554027995762682011-10-14T19:55:00.000-07:002011-10-14T19:55:39.709-07:0010/14/11 The "Spiral"I have been asked a lot how the saphenous vein was increased in diameter to become my new jugular vein, so I'll try to explain. <br />
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Imagine the saphenous vein is removed and laying on a table like any normal drinking straw. Slice along the top side of the straw, then lay it down flat on the table so now it's like a ribbon. Now, wrap the ribbon around a metal pole of any diameter in a spiral, like a barber's pole or a toilet paper roll, and stitch it up while on the pole so it holds its shape. When you do this, you can increase the diameter to any amount, so long as the ribbon is long enough. This is why they took the whole thing out of my leg. Snip the ends so they are straight, and insert the newly widened tube into the neck and call it a jugular vein.<br />
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The crucial component of this is patience. Dr. Stone said the surgeons all took turns stitching up my new jugular vein because it was meticulous and tedious work. Each and every stitch - hundreds of them - had to be deep enough into the tissue to give it structural support, but not too deep so as to penetrate the blood side which would allow the stitching material to interact with the blood flow, causing the very clotting we we trying to avoid. <br />
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This surgery isn't for rookies or anyone with an afternoon golf game.Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com1tag:blogger.com,1999:blog-4655190994522558774.post-22235791825073076772011-10-14T19:35:00.000-07:002011-10-14T19:40:05.713-07:0010/14/11 Feelin that way........<span style="font-family: inherit;">Opened my eyes to a new kind of way<br />All the good times that you saved<br />Are you feeling,<br />You feeling that way too<br />Or am I just,<br />Am I just a fool......</span><br />
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<span style="font-family: inherit;">Journey hit the nail on the head with this one. </span><span style="font-family: inherit;">I’m now 9 weeks post-op and as has been the case every time I circulate blood like a normal human, I see improvement in my gait and breathing initially, and now that my wounds are all dried out, instead of feeling like a fool, I'm really starting to feel some of the benefits I felt back last October when I had my first CCSVI done. Walking is improved, bowel is improved, fewer or no morning headaches, cog fog reduced or gone, MS hug is gone, and I have a general feeling of better health from the greater breathing and oxygen intake. </span><br />
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<span style="font-family: inherit;">Anyone who has read this blog will know I am convinced MS is not a neurological or auto immune disorder. That explanation simply isn't plausible to me. I think MS lesions on the myelin sheath, unlike cancer cells that are living, are cells or cellular material that have died from a hypoxic condition in the microscopic veins after arterial delivery has been completed. Veins carry about 25% of the oxygen that arteries carry, but they need that remaining oxygen to keep the drain side of the circulatory system alive. Because of lower oxygen levels and/or saturation, I think stagnation in the venous flow over time kills cells on the myelin when the microscopic pathways become hypoxic. I think that restoration of venous flow through CCSVI raises that level of oxygen saturation required for cells to remain healthy, and perhaps eventually even restore. Remember, nerve cells are the slowest to regenerate. I think this explains why MS generally doesn’t onset until people are at or near 40, why we feel some type of immediate relief from a CCSVI angio but not fully heal immediately, and why the repeated infusion of oxygen might slowly over time allow regeneration of the myelin. What auto-immune hyptothesis even comes close?</span><br />
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I've been posting to this blog for a couple of years now as a way to keep myself accountable and to share news with friends and family about my condition. All of us MS guys and girls know what a hassle it is to answer the old "how you doing" every time we talk to someone. And of course people care, but I've always wanted to be treated like a normal person since I got this stupid disease. Thus the blog. It's easier. <br />
"Hey, Mike how's it going?" <br />
"Not too bad, you read the blog lately?" <br />
"Yeah, seems it's going well." <br />
"Yep, so let's talk about business, motorcycles, music, or something else more important because I'm not sick today."<br />
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Now suddenly, in the past few weeks the traffic on my blog has elevated significantly, and the number of people writing to me has increased tenfold. Either I'm a great guy who everyone wants to talk to, or my experience at Mayo has lit up some kind of hope firestorm for those MS turned CCSVI turned occluded jugular/DVT patients. I'll go with the latter.......<br />
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Think about it. How cruel is it that we have MS, get lured into all kinds of magazine article false senses of hope with promises of new drugs and procedures, and then CCSVI comes along promising utopia - until the mighty thrombus takes over. Can we get a break?<br />
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I think so. I really do. Re-read what I think MS is. Then go talk to a doctor who may not agree. Then form your own opinion.<br />
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I didn't invent or discover CCSVI, but I am helping to bring it to mainstream medicine. I was just another guy who wanted a better future without wheelchairs and had my veins opened. I had relief initially, but experienced complications of thrombosis clogging up my left jugular. Since I was already a Mayo patient, I went to them to see what to do about it, and blindly became the first to providing a solution for both myself and for others who have had this happen to them. <br />
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M<span style="font-family: inherit;">y case was a huge step toward moving CCSVI toward mainstream medicine and out of the illicit, evil world of dastardly people who want to walk to the market (shame on us). I was the first patient at Mayo Clinic to have a vein bypass for the purpose of relieving well-documented MS symptoms. I am also the first to demonstrate, from a truly excellent facitlity, that there is a solution for many people who have a CCSVI procedure that results in complications like this.</span><br />
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Now obviously, Dr. Stone is a great doctor and Mayo is a great facility, and the calls they will get just from my blog alone will probably increase. But really, there are a great deal of vascular surgeons out there who can and will do this once the FDA, insurance companies, and the Canadian health care system realize the vascular component to MS is irrefutable.Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com0tag:blogger.com,1999:blog-4655190994522558774.post-38520786338324830582011-09-26T08:18:00.000-07:002011-09-26T08:18:22.449-07:009/26/11 6 weeks are up, time to get goingLast Friday was 6 weeks postop. The neurologists are happy and Dr. Stone, my vascular surgeon, says we're good to go bungee jumping if I want to. Now, I'm not so sure about literally jumping off a bridge attached by nothing more than a shock cord, but I do have some items on the agenda to get rolling here. First up this weekend was a little motorcycle riding. A group of people we know rented out the Sandy Valley Motocross track on Saturday night for a birthday party, so I thought that would be a good time and place to start the exercise. <div>
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While the 23 year olds and others with some skill jumped their way around the track, I putted around as best I could given a 6 week postop absence of activity. I rode both my 525 dual sport and my 300 2-stroke (both KTM's of course), to just see what the differences and similarities were. The 300 is so much lighter and handles the ruts betters, but the 525 just has so much more torque for getting going on the low end. I got about 30 laps in for about 90 minutes of exercise. It felt good. I sweated quite a bit and it felt great to just get out and do something physical. </div>
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Sunday came and my arms and neck were really tired and sore, so I guess that's a good thing.</div>
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Got up this morning and rode the stationary bike for 20 minutes then walked down the street for about 2000 feet. In the past, after the bike I have had to sit down and get some strength back, but today I could do both reasonably well. I still have some wounds in my leg not healed yet though. Of the 15 incision areas, I still have 3 that haven't quite healed, so I'm not free to hit the pool yet, but I am looking forward to that too. </div>
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For the next few weeks the goal is to get off the Pradaxa anticoagulant (3 months postop) and slowly get some exercise going, then when the wounds are healed, increase the pace. I'm sure when the Pradaxa is out of my system the healing will increase even more, especially the wounds. </div>
Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com0tag:blogger.com,1999:blog-4655190994522558774.post-66187651422100579292011-09-22T12:25:00.000-07:002011-09-22T12:28:56.753-07:009/21/11 Shock the Neurologist<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: xx-small;">Mayo Hospital from above</span></div>
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I went to the Mayo Clinic yesterday for a follow up with Dr. Wingerchuck, my neurologist. We're now about 5 1/2 weeks postop and he wanted to see how I was doing from a neurological standpoint. I gave him the discussion about the surgery lag still a little on me and all the wounds and stitches haven't healed yet, but he wanted to see how I was progressing - or IF I was progressing. <br />
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Both Dr. Wingerchuck and his fellow put me through the standard tests. Eyes, hands, etc. When they got to the left leg, which has been the weaker one, they were both taken aback. I can lift my thigh up from seated position, extend my lower leg from seated position, and hold my foot up when resisted downward all significantly better than before. I also walked for them and they noticed a significant improvement in my gait.<br />
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Dr. Wingerchuck would be a great poker player. His demeanor is tough to crack. He's a serious, educated doctor with enormous credentials who understands the disease as well as anyone, and he doesn't get too excited about things. So to get any reaction from him is significant, and he clearly acknowledged I was improved. It was quite a moment for me. <br />
I asked them for a report to get to me as soon as possible so I can restore my pilot medical, which they said they'd do. But I also asked them to really look into the CCSVI phenomenon from a number of different angles. I reminded them of all the people from Canada and the US who are travelling overseas for a chance to see results like I have, and that the doctors in some places are refusing to address it. I told him that, at least based on my results, that the relationship between vascular circulation and neurological symptoms is real, which he agreed, but Dr. Wingerchuck appropriately replied by stating it was his job to be one of the skeptics about these things, and that further studies were needed. I agreed, but said to him that Mayo Clinic is one of the few places in the world that could bring this to the mainstream. <br />
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In any event, back to my condition. I walked a bunch yesterday and my leg worked quite well. <br />
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It's amazing what the slightest improvements do for the psyche. Hope goes a long way in this world, and for me to know unconditionally that I have turned the corner in my battle makes my life carry that much more meaning and significance. Family and friends love me anyway, but this is about my personal battle, and when I feel progress, I feel hope, and that hope turns to confidence. I so wish for others with this disease to be able to feel it.<br />
<br />Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com1tag:blogger.com,1999:blog-4655190994522558774.post-5295179578276547312011-09-14T15:40:00.000-07:002011-09-14T15:40:04.525-07:009/14/11 Still some Surgery Lag, but doing well<div class="MsoPlainText" style="margin: 0in 0in 0pt;">
<span style="font-family: Consolas;">Feeling quite good the past few days. 4 poops in 2 days, none assisted, is good. I'm about 4 1/2 weeks postop now and of that 30-odd days, I have not had to use any form of assistance for 27 or 28 of them, so there is definitely no placebo effect on this part. </span></div>
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<span style="font-family: Consolas;">My scars are healing......all 17 of them (15 in the leg, 2 in the neck), pretty nicely. There are a couple taking longer because every time I walk it tugs on the area a bit more than the others so they clearly won't heal up as quick. </span></div>
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<span style="font-family: Consolas;">Walking is better, breathing remains excellent, heart in check, poop better. Only thing is the urination which has essentially no change, though it does feel now and again that the pressure is better and I'm holding more between visits. That one's a little tougher to quantify, so I won't call that yet. </span></div>
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<span style="font-family: Consolas;">It's so strange thinking about why blood flow would help this. It makes me think about what MS </span><span style="font-family: Consolas;">lesions are. Are they living and growing or are they dying pieces of the myelin sheath?<span style="mso-spacerun: yes;"> </span>I theorize they are dying parts of the myelin as a result of a lack of oxygen perfusion due to blood stagnancy. CCSVI could possibly be renamed to CCSVS with the last "S" meaning "stagnancy." </span></div>
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<span style="font-family: Consolas;">Oxygen perfuses every millimeter of our bodies which is one reason the arterial side of our circulatory system is under such pressure. It is to ensure the oxygen delivery to the furthest reaches of our bodies from the fingers and toes to our brains. The key to this theory is the high pressure perfusion is complimented by the low pressure recovery of the deoxygenated blood. As the oxygenated blood is fully delivered to the far reaches there is a brief moment where is goes from high pressure to low pressure as all of the oxygen is released into the organ. At this point the blood is merely a carrier of the spent, deoxygenated blood to return it to the heart/lung system for reoxygenation</span></div>
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<span style="font-family: Consolas;">Stagnancy in the short term is not a problem. Veins have a unique collection and delivery system that allows the body to function and divert even when blocked. But long term stagnancy of venous blood in areas of the body especially the brain leads to the gradual decline in functioning and health of the organ that needs oxygen to survive over time. </span></div>
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<span style="font-family: Consolas;">Following this theory, in the case of MS that stagnancy over time leads to the degradation of the nerve and myelin coating. Because MS symptoms are so random in nature and the affected nerve may control anything from the legs to bowels to arms to vision, the oxygen disruption could happen anywhere within the brain barrier leading to the nerves. </span><span style="font-family: Consolas;">Why random?<span style="mso-spacerun: yes;"> </span>Nerves are microscopic and any one or combination can be affected by the stagnant, deoxygenated blood.</span></div>
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<span style="font-family: Consolas;">In the meantime, I'm just happy I'm improving......can't wait for all the scars to heal so I can get back to exercising. </span></div>
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Mike Beating MShttp://www.blogger.com/profile/15423403292974610938noreply@blogger.com0