Notes from CureIous' at Stanford

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

Re: Notes from CureIous' at Stanford

Postby dlynn » Fri Oct 04, 2013 8:11 am

Oh CureIous, I'm so sorry, this must be a difficult time for you. Life sure does throw us curve balls.
But it's good to hear you're still going strong.
God bless!!
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Re: Notes from CureIous' at Stanford

Postby CureIous » Sat Oct 05, 2013 12:03 am

dlynn wrote:Oh CureIous, I'm so sorry, this must be a difficult time for you. Life sure does throw us curve balls.
But it's good to hear you're still going strong.
God bless!!


Thank you so much DLynn.

Trying to be support for my wife. Her Mom was pure gold. Best Mother-in-law a guy
could ask for. All I know is 4 years ago, I was asking for help, and strength.

Now I am the help and strength, even though I don't feel that strong.

My open veins have a lot to do with that. Period.

That's my CCSVI advertisement for the year.
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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Re: Notes from CureIous' at Stanford

Postby CureIous » Sun Aug 03, 2014 12:03 pm

peekaboo wrote:Just heard from CureIous' good friend Don who tells me that he left Op Prep at 4:30pm the op will be roughly 2hrs and recovery about 3hrs. He will be getting double jugs way up high and another set by the shoulder.



In loving memory of Holly. It's been five years ago today. My buddy drove me up there as that was well out of range of my capabilities. He would call Holly with updates and she would post here. Meanwhile my wife and two girls were back here, my future son was gestating in the belly, the future was a big fat question mark, nothing else. Down to my last three shots of Avonex, no real hope for symptoms as it was hot like it is now. Insurance running out in a few months and very little support system. Neurologist trying to prescribe different drugs for symptoms which did absolutely nothing.

And another kid on the way, with no idea how I would be able to work and support my family.

What kind of man am I that is so young and so dependent on others? I am just a burden to everyone.

Which is why we named our son Noah, because Noah is all about new beginnings.

This year, I worked 7/12's night shift, driving 50 miles to and fro. Did that for nearly 50 days straight. Then, rented a 31' RV and took the family up to Big Bear for 3 days. Fishing, pontoon boat across the lake, and lots and lots of stars.

We had help with Stanford, lots of it. Without that it would not have been remotely possible. Which is why I like to revisit this thread every now and then, it was so nice being in a strange place getting strange things done on a wing and a prayer, and people like Holly backing you up.

And its five years later and still going strong. Just holding on for the ride here....
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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Re: Notes from CureIous' at Stanford

Postby CureIous » Mon Aug 03, 2015 6:03 pm

Good grief, was sitting outside with the dog enjoying the warmth and almost forgot it was August 3rd!
Six years ago today life changed for the good, and so far to the permanent. Last saw the neuro like 2 years ago or something so I guess that answers that.

The 4 stents are there but don't notice them nor had any follow up MRV's since 2012 I think. Don't take aspirin anymore, haven't had MS drugs since 08, definitely no MS flareups, improvements realized shortly after the procedure are still stuck, well I would say the improvements improved, then leveled out.

So at this point, I know there is residual brain damage, scar tissue, black holes that will most likely always be there like a hidden tattoo, but with MS most of the day-to-day grind involves symptoms affecting the body and mind. And I just don't have any I can point at and say, "definitely MS".

Just moving on with life, youngest son who was in the belly when the stents went in is starting kinder next week. Just blows my mind, because I am really truly THERE for all of it, all the school functions at both schools, a near teenager in the house atop all that.

It was the #1 thing that concerned me back then, could barely participate in the simplest tasks at home, if I could remember at all, and with another baby on the way, sex unknown at the time, what would 5 years later look like? THAT is the scary stuff, the unknowns.

Well, guess now we know, life couldn't get more stressful right now, nor be any better. I'll take the whole ball o' wax, just take away the fatigue and give me some memory back and I'll take it from there.

I will always consider myself one of the fortunate ones considering the journeys seen with others the past 6 years.


Not sure what that mysterious " MS" beast is doing, but the CCSVI monster remains tamed and timid, fine by me.

When I get insurance again may go get an MRI, see what the state of the union is. No reason to get an MRV unless symptoms or otherwise dictates, so, patent stents are an assumption, no reason to believe otherwise.

Take care all.
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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Re: Notes from CureIous' at Stanford

Postby dlynn » Tue Aug 04, 2015 9:16 am

Hi CurIous,
I'm so happy for you, all good news!! I had the procedure four times but unfortunately, my veins restenose
each time. If it wasn't so expensive, I'd have a 5th in Brooklyn, with Dr. Sclafani... of course.
But if fatigue is still a bit of a problem for you, I have really good results with ldn. It's like a miracle for me and I do
not like taking drugs at all. If you'd be interested in it you can p.m. me and I'll give you the name of a prescribing Dr.
God bless*
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Re: Notes from CureIous' at Stanford

Postby NHE » Wed Aug 05, 2015 2:39 am

CureIous wrote:Good grief, was sitting outside with the dog enjoying the warmth and almost forgot it was August 3rd!
Six years ago today life changed for the good, and so far to the permanent. Last saw the neuro like 2 years ago or something so I guess that answers that.

The 4 stents are there but don't notice them nor had any follow up MRV's since 2012 I think. Don't take aspirin anymore, haven't had MS drugs since 08, definitely no MS flareups, improvements realized shortly after the procedure are still stuck, well I would say the improvements improved, then leveled out.

So at this point, I know there is residual brain damage, scar tissue, black holes that will most likely always be there like a hidden tattoo, but with MS most of the day-to-day grind involves symptoms affecting the body and mind. And I just don't have any I can point at and say, "definitely MS".

Just moving on with life, youngest son who was in the belly when the stents went in is starting kinder next week. Just blows my mind, because I am really truly THERE for all of it, all the school functions at both schools, a near teenager in the house atop all that.

It was the #1 thing that concerned me back then, could barely participate in the simplest tasks at home, if I could remember at all, and with another baby on the way, sex unknown at the time, what would 5 years later look like? THAT is the scary stuff, the unknowns.

Well, guess now we know, life couldn't get more stressful right now, nor be any better. I'll take the whole ball o' wax, just take away the fatigue and give me some memory back and I'll take it from there.

I will always consider myself one of the fortunate ones considering the journeys seen with others the past 6 years.


Not sure what that mysterious " MS" beast is doing, but the CCSVI monster remains tamed and timid, fine by me.

When I get insurance again may go get an MRI, see what the state of the union is. No reason to get an MRV unless symptoms or otherwise dictates, so, patent stents are an assumption, no reason to believe otherwise.

Take care all.
Mark


Thanks for checking in with us. It's great to hear that you're doing well!
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Re: Notes from CureIous' at Stanford

Postby 1eye » Fri Aug 14, 2015 1:57 pm

If interested, you could try gettin biotin powder (100%) compunded into 300 mg per day tablets. It seems to be doing something for me. Stamina not increasing yet or at least by much, still heat-sensitive, but core strength still improving...
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: Notes from CureIous' at Stanford

Postby CureIous » Wed Jan 13, 2016 11:27 pm

Well hello, long time.

For the few that are left here, have some very interesting news to report.

Yesterday I was the unfortunate victim of a rear end collision. Welcome to LA.

Anyways, ended up going back home cause neck was whiplashed, Dr. ordered x-rays,
naturally. I left with a CD of the shots of course. Take a look. I'm always keen whenever a free looksee
of the stents is available. Here's a great shot. (Much more later promise)
Where's Waldo?

Image
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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Re: Notes from CureIous' at Stanford

Postby Robnl » Thu Jan 14, 2016 4:50 am

still here...... i got a nice, full color ct scan...you can clearly see my stent.

How about thr whiplash and vertebrae??
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Re: Notes from CureIous' at Stanford

Postby CureIous » Thu Jan 14, 2016 9:35 am

Whiplash and vertebrae appear fine. Take note I had 4 stents implanted, 3 on left, 1 on right. Now go back and look at the scan again..
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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Re: Notes from CureIous' at Stanford

Postby CureIous » Thu Jan 14, 2016 9:52 am

Image

Look closely, what do you see?

Image
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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Re: Notes from CureIous' at Stanford

Postby Robnl » Thu Jan 14, 2016 2:06 pm

Ehmmm, do i miss a stent?
And i dont understand what you mean with the next two images...
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Re: Notes from CureIous' at Stanford

Postby CureIous » Thu Jan 14, 2016 3:47 pm

The two fingers are pointing at the *new* location of the "missing" stent on the right side. Basically the worst case scenario happened, exactly what happened to Oliver, down the right side into the SVC, then the Right Ventricle of the heart, and I'm supposing some medically certified angels gently guided it back up into the outlet for the right pulmonary artery, where it currently resides. Otherwise..... think Oliver's all over again. It truly is miraculous where it ended up, with nary a symptom. This was only discovered after I perused the x-ray cd after the accident/whiplash injury, just saw the path report on the xray, was really curious what the pathologist had to say about it, he duly noted the cervical stents x3 which a blind man could find, then for the other, noted as follows: "endovascular graft present at the level of right hilium and left side of neck".

THat is correct insofar as location, unfortunately the damned xray tech couldnt be bothered to let me know um, I had a migrated stent. I told him before the scan he would see 3 left and 1 right. Now I know they are not there to dx your condition, but they can maybe say, "um, your so-called cervical stent aint cervical bro".

I put together a quick thumbnail here using my Dr's KILLER anatomy book pics which are impossible to get online. Image
Image

To say it's a miracle this didn't get lodged inside the ventricle is an understatement.

considering how "busy" things are in there.

Image
Last edited by CureIous on Thu Jan 14, 2016 4:52 pm, edited 1 time in total.
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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Re: Notes from CureIous' at Stanford

Postby magoo » Thu Jan 14, 2016 3:55 pm

This is truly terrifying. When was the last time your stents were looked at? I didn't think stents could move after endothelial tissue grew over it.
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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Re: Notes from CureIous' at Stanford

Postby CureIous » Thu Jan 14, 2016 5:02 pm

magoo wrote:This is truly terrifying. When was the last time your stents were looked at? I didn't think stents could move after endothelial tissue grew over it.



Exactly. That is why my local doc is going to write up something to submit to ISnvd so others can find out. My last scan was here back in 2013 I believe.Have to dig into that some more, but over 6 years later it popped out. Right side always concerned me for obvious reasons. Left side not so much, there's 3 interlocking, it is much narrower plus it has quite the route to get down that far.

This ct scan should illuminate more, can't wait to share. Doc said I already won the lotto..
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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