Notes from CureIous' at Stanford

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Rose2 » Mon Dec 20, 2010 12:00 pm

YESSSSSSSSSSSSSSSSSSSSSSS!!!!! YES, YES, YES, YES.
Awesome. Perfect! You are one very good placebo!
Congrats on back in the saddle. Stress test and all. You Rule and Thank You Dr. Dake. Never stop!
I am with you. I am sending in my California State Lic forms to take my Lic off of Hold. Got some classes etc.
Sounds like you did Backflow Prevention Device Certification? That testing goes like that. intense and one slip and bye bye..... all of our testers sweat bullets no matter how long they have been at it.
YOU DID IT! YOU AND NICE BLOOD FLOW. NOTHING LIKE SOME GOOD O2!
SINCERELY, ROSE ;)
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Postby CureIous » Sat Jan 15, 2011 7:05 pm

Well here's another update-y thread bump, I like to save up at least a couple things to mention, all is well, better than well, actually going great, so much more than I expected.

In my mind, since the procedure in August of 2009, there were these little mental road markers, call them hurdles, things to overcome, but more like milestones, "okay, I'm still good at 3 months, how's that heat thing going" etc. "Still holding at 1 year? How about compared with 6 months?". Climb a hill in the searing heat? Skydive? Not particularly the outdoorsy type, but all important little ticks next to the mental list, question being, can I do it, how do I feel, am I forcing it, am I kidding myself, is this really what's going on?

A lot of that covered the strictly heat fatigue woozy lethargic misery which had become just the new norm. Relapse or not, those symptoms never left.

For me though, the real litmus test had remained to be tried, namely going back to work. Friday was my 3rd day on the new job, okay, a job's a job, don't need a medal nor a chest to pin it on, but being unemployed since December of 2007, partially due to being on disability for a year for the MS stuff, partially to get the Stanford+3 month follow up out of the way, and lastly because this is not a good economy for my line of work, which covered the rest.

So, not with trepidation, fear, uncertainty, nor hesitation, I got a work order to begin Wednesday A.M., for about a 3-6 month job, 25 miles from the house. I know my last job, being 45 miles of LA freeway grind, would leave me fatigued and spent before even starting, no matter how vitamined up I was. Coffee, useless. And it only got worse from there as the day wore on, but I put a face on it, never mentioned to any of my coworkers this MS thing, because industrial construction does not have any handicapped parking for a reason, it's performance based, you work for the contractor, utilizing your skills in your trade, he pays you, end of story. If you can't do that, said contractor is well within his rights to not employ you. So all that was left out of earshot, off the table, and only existed in my head. Oh, I did a good job faking it, my 50% was good enough, and the ALWAYS PRESENT notepad and pencil ensured I had my foreman's wishes prior to him heading back the other direction. However, sometimes I wouldn't have anything to write with/on, and it created a very big problem, because if he left, and I didn't "have it", it was gone, I wouldn't even remember what he said I was supposed to be working on.
It was truly embarrassing to have to say, "what did you want me to do again?". They know I am smart, and capable, but this just appeared to be playing stupid.

It wasn't, and I couldn't explain the whys and wherefores, or ask for special treatment. They Just Dont Do Things Like That.

Let alone the abject FEAR I had, of my head spinning hesitations in the field, my slowness to respond, and how that may realistically endanger others. Ours is an extremely dangerous field, cranes, rigging, torches and hot metal, all in an extremely volatile mixture that is all around you at all hours of your work day. Situational awareness, and keeping things totally straight in your head, what you are doing, where's that 10,000 Lb. piece of 24" pipe going, was it rigged correctly, and all that stuff, left me very very thankful I was mercifully, not at my own behest, relegated to the fabrication area, where things are all in one little spot, and I have some control over my work day, and thereby am able to manipulate the circumstances to accommodate my immediate needs. In all seriousness, the thought of hurting someone else, or killing someone else, due to my less than stellar functioning brain, kept me awake at nights.

So yeah, with 3 kids and a wife, no other career path I can just pick up at age 41, bills piled up to the rafters, me really REALLY needing to be at the top of my game right now and get to it, this Wednesday, Thursday and Friday were beyond the shadow of a doubt, the most pivotal 3 days since this expedition began 7/2009.

So I warmed up the week before (VERY out of shape right now vs. norm) by doing some concrete work in the backyard. Plus there's new neighbors moving in, so I helped them too, plus got ready for going back to work. Then Noah decided to pull an all nighter the night before my first day. Strike one. 4 hours is difficult to function on, when you need to be bright eyed and bushy tailed the first day. With the industry being so down right now, there are 200 guys ready, willing, and able to take your spot in a second. In fact, the employer said, "non-performance to xyz standards = free trip to parking lot", and they had no qualms mentioning the 200 guys ready, eager and willing to take your place. I really REALLY need my A game right now. Come on body, brain, can I count on you right now? Can you rebound and get with the program after idling for 3 years? Only one way to find out!
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby magoo » Wed Jan 19, 2011 12:09 pm

Good luck Mark!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby HappyPoet » Thu Jan 20, 2011 12:30 am

Mark, I wish you the best of luck! You deserve this job, and I know you can do it! I will hope and pray that all goes well. Please let us know how your first days and weeks go, thanks!

I want to add that I appreciate reading all your updates. You're an excellent writer, and TIMS is lucky to have you relating all your experiences, thoughts, and feelings.
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Postby Rokkit » Thu Jan 20, 2011 7:22 am

Yeah Mark, I hope you kicked yesterday's butt and today is nervous to see you coming.
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Postby CureIous » Sat Jan 22, 2011 7:22 pm

Doing such a good job for them, they handpicked me for that elusive overtime yesterday and all day today, nothing easy either, it was a great workout, but you get paid for it haha. Never been better, or at least that I can remember. Plus when I get off, I don't have that "been run over by a steamroller please God just get me home so I can collapse" feeling.

So, after all this the past few weeks, I'd say the future is looking especially bright. This "thing" seems to have some teeth and longevity, for that I am thankful.

Just stepped on to the train folks, so far it's been a great ride, not conducting, nor did I know where it was going back then, or have much control over that anyways.

Unfortunately, the 2nd half of my update somehow either didn't get submitted/clicked by me, or was censored to 404 land on here. Impossible to tell. I'd like the admin's to at least let me know either way if they could. It was done right after the first update post.

Basically, just for the record, having a job was by no means any part of the point, it's just a job. Strictly speaking, it was about placing maximum stress on someone who hasn't worked in his trade for 3 years, has MS, is extremely sensitive to heat, lack of sleep, freeway traffic, work, the mental demands of the whole "hurry up and go why are you standing there" type of job I have, and whether any of that has been improved to the point that the procedure, at least from a practical rubber meets road perspective, has helped.

Plus there was a mention of my languishing video, which has totaled over 9,000 views so far, about 8,000 more than originally expected. Someday I'll get the follow up one posted, got all the footage, shame to have it stuck in my puter. What's neat though, since in this day and age internet video hits are okay, but it's not about hit counts, it's about if anyone gets anything out of it, and seeing that this thread, as it sat for 4 months, 25 pages back, got almost the same increase in views, in lockstep with the video, meaning that people were clicking on the link to TIMS that was in the comments part of the youtube page. That's great that people are seeing that, then coming here to TIMS to learn more! Mission accomplished.

Have a great football Sunday e1. Thanks for the nice comments, I do read them on my phone on lunch or whatever, can't get to the computer much these days.
Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby prairiegirl » Sat Jan 22, 2011 7:33 pm

Really great to hear your news-- thanks for sharing it! :D
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Postby HappyPoet » Sun Jan 23, 2011 5:28 pm

Mark, thanks for another terrific update!

I knew you could do the job, and you do it with excellence. If anyone deserves that overtime pay, you do!!

Let's hope the admin can help you find Part II of your update. Just the thought of missing even one of your "from a practical rubber meets road perspective" kind of expression makes me sad. It's these expressions that make your writing come alive.

I'm so glad that at the end of your day, you don't feel like you've '"been run over by a steamroller please God just get me home so I can collapse."'

Best of luck with work. :)
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Postby CureIous » Mon Feb 07, 2011 6:39 pm

Had a nice talk with the foreman today, was REALLY hesitant to even mention MS, CCSVI or the like. He was the one I worked under at my last job, when I was in the Alky unit (Alkylation not alcohol haha), requiring us to be rubber suited from head to toe upon entry, heavy thick rubber, you can only imagine what that does to an already barely-treading-water heat stressed brain. I measured my ability to do my job in minutes, before confusion, wooziness, all that great heat stress stuff set in. It was one of the most stressful work situations I've ever had, a body that won't perform, a mind that won't think, and no relief in sight.

As luck would have it, I got transferred out of there into a much more stable and easier job, through no effort of my own, and was able to eke out an existence, thankful every day to be done with the rubber suits from hell.

That was the tail end of 2007, the last time I worked in my trade. 2008, disability, relapse, then of course the fortuitous encounter with some info someone sent me on this Zamboni guy, and the rest is history.

Enter in brand spanking new year 2011, an opportunity to begin work again, at a different site, and as that same luck would have it, the very same foreman, and many of the same coworkers. Now, everyone wants to know, "where the heck ya been for 3 years?". It's gone by so fast, formulating an answer comes off a little, well, lame.

The way things work in the real world is as follows:
1. The employer in general is paying you to perform a function that completes a task that thereby profits the employer, who pays you a wage for said task. Duh.
2. Unfortunately, as I related to same foreman later on in the story, there is no handicapped parking on a construction job. That's reality. Oh sure, people will sigh, pat you on the back, share your plight, heck, they might even do a collection for a time, but in the end, asking for any kind of favoritism, no matter WHAT the reason, is a good way to short circuit any hope of excelling or thriving in the trade. Neither would I ask, so in the end, I never mentioned any of the above shortcomings, "fake it til ya make it" as they say.

So last Friday, I gave this same foreman, who I have a really good rapport with anyways, a copy of my operation video, with a more illustrative introduction for the extreme neophyte.

When I came in this a.m., the first words out of his mouth were, "boy, do I have a lot of questions for you" haha. So we talked a bit during work, then about 30 minutes afterwards, and he was just absolutely amazed at the entire thing. So was I, to FINALLY be able to speak freely, but not in any sense whatsoever of requiring special accomodation etc. etc. Perish the thought!

Rather, I was more keen to go back in time and explain what was really happening back then when I worked under him in that refinery unit that was handcrafted in Haades, and that any shortcomings back then were not by choice, and not because of laziness, or not caring, and I know you had to tell me stuff three times like a little kid, but that's what it took for things to sink in.

His response? "You should have told me, I would have done anything to help you through it " yadda yadda.

I know, but see, when you also have 30 other guys going through the same purgatory, and here's you, Mr. Special, getting the white glove treatment, well, no matter the reason, you lose something that is very precious in the field, Respect of your coworkers. I mean, what do you do, put out a flyer? Wear a sticker on your hardhat that says, "Special Person with Disability, please step aside"?

Now, I know that in other work situations, where physical type labor is not a factor, such issues can be addressed and dealt with in a manner that is favorable to the employee, office work, managerial, whatever.

Such is not the case in my trade. This is about SO much more than punching a clock and collecting a check, it's about providing for your family, it's about the satisfaction that you did the best job you can do, and leaving it behind the gate and going home and celebrating your family, confident in the knowledge that tomorrow will be likewise, and the bottoms not going to fall out, and the body and mind will function the same way, and don't worry about it even a little bit.


So I explained all of the above to him, and he just kept asking more questions, because in our trade, flow of liquids through pipes, going through check valves, restrictions and the like, is in the "no explanation needed" category.

And I really really wanted him to know, that the 2007 version of Mark, is long gone, and Lord willing, aint coming back, and I feel better than I did 8,9, 10 years ago, and all this stuff seems so easy now and effortless. Kinda bored but it's a living haha. A pretty good one at that.

Right now, they have been taking up a collection, and doing fundraisers through my uni0n to support a father of 3, who played football in his younger years, is about my age, and possibly due to the high impact nature of his earlier injuries, now has ALS, with less than a year to live. He's four years younger than me with a beautiful family. He comes to visit the guys often, it's weird for someone to "look normal" and have such a fate that awaits him in less than a years time, and has such a good attitude about it. "Things could be worse" as they say.

This is all about giving back. I'm going to find out if he has any online site set up. I don't think so. Anyone know how to go about something like that? I know hard luck stories are a dime a dozen, but if you saw the pic of him and his three young kids and wife.....

Considering how many CCSVI people had earlier head/neck/whiplash type injuries in their past, makes one think if there could be any dovetailing of CCSVI research that may assist other areas like ALS, granted that we're talking apples and oranges here...

Thanks for letting me ramble. Things couldn't be better. Seriously...
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby bretzke » Tue Feb 08, 2011 5:59 am

Mark-

Your story is amazing. Any way you can get this into the media to share with others?

Brian
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Postby CureIous » Sat May 28, 2011 9:30 pm

Hi all, just a quick note on my neuro visit on Friday, I had lost my insurance last year, so my previous visit was a bit after my 1 year follow up with Dr. Dake, and have been keen to place every bit of scans, path reports and such from my Stanford dealings into my neuro's hands, to keep him in the loop, as he is intimately familiar with my condition pre-op, so I just got my insurance back this month and went to see him, of course with a personalized autographed copy of Marie's book in hand (naturally!). He's not one for long conversational visits, so was trying to get in as much info as possible in the short time available, needless to say, he "informed me" that Dr. Dake had stopped doing the procedures (aha! they are checking on things eh?), which of course gave me an opening to mention the upcoming trial, which perked his ears up a bit.

Overall, a very positive visit, he is a kind man and very gracious, so a soft touch is the order of the day, I've simply from the beginning, put as much info and papers and path reports and cd's of every scan into his hands, and left it at that, hoping that he will be more than a little influenced by what is plainly and unmistakingly a near 180 degree turnaround sitting right in front of him, was even a bit surprised I wasn't on any drugs, nor had any symptoms that required assessment. I related how well things are going at work and how much easier it is now to deal with the heat and stress and the like, he told me not to brag, I'm like, "no, it's not that, it's more observational cause I can't believe that guy is doing that stuff and where the heck did HE come from?" lol.
Or as Erkel would say, "did I do that?".

He thanked me for thinking of him r.e. the book, I gave him the RD background on the genesis of the book and it's author. At my behest, we are doing a VEP (Visual Evoked Potentials) next Thursday, and he wants me to let him know as soon as the results come in, this one test that is basically the only objective finding available when it comes to my situation, the rest being self reported, and last year when I took it about 9 months post-op, he was very excited just because it was stable, being that I've had no optic neuritis related symptoms since the procedure, including during the summer heat when they would always flare up really bad, hopefully this test will show either stable, or perhaps a bit of healing?

I would think that maybe, after 2 years, it may show some healing, but that's anyone's guess at this point. I made sure to plug the Hubbard Foundation, which he was completely unaware of, his ears once again perked up when I mentioned IRB, registry and all that, so he must not be actively checking into things frequently, hopefully this will give him a nudge in the right direction, that no, this goes a bit farther than me and Stanford and Dr. Dake and here's the book and share it with your colleagues.

Did the best I could with what little time was available, at the end, he recommended we only do once a year follow ups. Imagine that eh? Used to camp outside his office begging for something, ANYTHING to relieve the symptoms, now he doesn't want to see me anymore! ;)

I'll report back the VEP results when I get them, those are so important to me personally, the ON, back in 2004, how it came up literally overnight, my eye all turned into the nose and all that, was a scary time, esp with no insurance, and call the 7 lean years over and done with here in 2011....
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby CureIous » Sun Jun 05, 2011 8:03 pm

Figure if I don't follow up with my VEP results now it's going to be awhile. Tomorrow I start on 84 hour weeks for about 3 weeks, only a handful of guys left, and I'm the only one left who isn't with the inside clique, based on performance, which I totally credit to my wide open veins ;)

Anyways, as stated before, I was scheduled for a Visual Evoked Potentials test last Thursday, and hounded the office on Friday to get the results, as this is the lone objective test from my POV that would show anything, and is beyond the pale of what is considered anectdotal. Plus I'm just dang curious to find out after nearly 2 years, if the new flow translated into new optic nerves ;) ;)

Not surprisingly, at least to me, it did not. Stable you want though, and stable you got, she was kind enough to read the entire report to me verbatim over the phone on my lunch break, but long story short, nothing has changed, which also means, nothing has degenerated, so according to the machine, and the path report, my results are indicative of a lesion in ( x) location causing (y) difference in how my left, and right side optic nerves conduct electrical flow, insert a bunch of jargon in the middle of that, but that's the crux.

Now, the *symptoms* insofar as the ON is concerned, the flashing dots of light, the color differences from one eye to the other, the pain behind the eye, light sensitivity, that funny stuff that happens when you go from light to dark and back again, well if it's there, I haven't noticed, the color shading is easiest to test on my own, and I do it frequently and it's exactly the same from one eye to the other. There's just nothing there that I can point to and say, "oh wow, that's definitely ON flaring up".


My 2 year follow up is scheduled for early next month, who knows what it will show, I suspect more of the same, lesions in the same locations, no new lesions, stents all wide open and flowing, so for now, with the neuro recommending once a year follow ups and no noticeable symptoms from my MS, with QOL vastly improved on a daily basis for close to two years, I'm starting to feel more and more like an "ex MS patient". Yes, that is heady, perhaps a bit cocky, and the thought will ALWAYS be there that the train could derail at any moment, so vigilance is always the order of the day, but still, for the most part, my life consists now of reaching out and DOING things, of initiating projects, of saying, "let's go out and do this and that how about it", of helping people, giving back to society, thinking ahead.

Vs. two years ago, when mere survival on a day to day basis was the norm, when reliance on others to pick up the slack (esp my wife) was the norm, when hope was something others had, because whatever things were like then, would only get worse. The purgatory of no mans land, not sick enough for government assistance, not well enough to perform my job, and nothing nothing NOTHING to look forward to but more of the same, while people look at you and see normal and must wonder if it's real or imagined.

I'll take anectdotal any day.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Opera » Mon Jun 06, 2011 3:39 am

Hi,

Thanks very much for keeping all of us informed about your progress. Much appreciated and gives us hope for a better future.

My very best wishes to you.
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Postby munchkin » Mon Jun 06, 2011 4:25 am

It is great to hear about your long term results and your ability to live a normal life. All of us have a little more hope.

Thanks for sharing.
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Postby CureIous » Mon Jun 06, 2011 7:42 pm

Thank you for the nice comments. At this point, it's about selecting different icing flavors for the cake, or adding .01 or .02 percentages in the improvement department.


And this, is something I missed every summer since my kids were little. This, is why I trekked to Stanford and rolled the dice.

http://www.youtube.com/watch?v=ZOl_ngBQhY8

and that, is what I want for everyone.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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