Notes from CureIous' at Stanford

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

Postby Cece » Mon Jun 06, 2011 8:08 pm

Now there's some cute kids!
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Postby CD » Mon Jun 06, 2011 9:18 pm

Mark, I loved your first video of your CCSVI procedure. Actually I loved all your videos, and the well written updates too. All so well done.

That pool looks delicious. I bet your kiddies love it. They are so adorable. Thanks for sharing all this with us.

I am very happy that you are doing so well. I can't wait for your updated video. I have shared your CCSVI procedure video with some of my family and friends. It is helpful when people don't have a clue what you're talking about. :)
your friend,
CD
Where there is a will, there is a way. "HOPE"

CCSVI Procedure December 2010
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Postby CureIous » Tue Aug 02, 2011 9:41 pm

Thank you for the kind replies to my last post on this thread.

Tomorrow marks exactly 2 years since I had my MRI/V and consult, a decidedly low key event, if one were a spectator that is, and what an exciting 2 years it has been. Thoughts of course will be with Holly, Oliver, Jeff, Marie, Sharon etc. those that paved the way for the rest of us Stanford 39 (just picked a name for the group), me somewhere around 24ish.

I recently got layed off, and had to beg for it, being one of the last 3 out of 50 at peak manpower. Certainly not how I anticipated the job to end, was looking for 2 months and would be glad to survive it, being out of the trade for 3 years, instead, worked 7 months, and the last 48 days there were spent on 12 hour shifts, 7 days a week, in the heat. I laughed in the heat's general direction, usually around hour 11 as it started to cool down.

Now that's done and am enjoying the rest of the summer with the girls and family, gonna take em fishing this week, soon as I get back from Stanford.

Tomorrow I make one more trek, this time by plane, no long drive, no hotels, no follow up procedure, (anticipated), a totally solo adventure, no need for assistance, help (financial or otherwise), just a long day trip and back home again.

Today instead of prepping, I jaunted over to the ENT to confirm the suspected deviated septum, then jammed both a head CT and a knee MRI into one visit to the scanning center, found out the tech's father died of MS, late onset and rapid decline, it's amazing how you can even mention MS and immediately tell if someone has a personal experience with it in some way. He also has 2 others in his circle so what the heck, I did what any sane rational TIMS'er would do, jammed on home in the 100 degree heat, grabbed a copy of Marie's book and my updated video (with more in depth intro), and went back! :)

And that my friends, is what it's all about, at least to me. Small little spritzes of good will from my overflowing fount of blessings.

Such a contrast from 2 years ago, August 3rd, 2009, when my life seemed to consist of one continuous chain of need and little else.

Tomorrow, I fly alone, completely and utterly independent. That alone is worth the price of admission.

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 CD » Tue Aug 02, 2011 10:47 pm

Mark, thank you. That was priceless. :D

Enjoy your time with your beautiful family. You certainly worked hard for it.

I wish you a nice, safe trip and back again, with a smile on your face when you return.

That good deed, to help people, and by spreading the word CCSVI, was truly a great gift to give.
Be well,
CD
Where there is a will, there is a way. "HOPE"

CCSVI Procedure December 2010
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Postby CRHInv » Wed Aug 03, 2011 3:44 pm

Woohoo! Good for you Mark! I am glad you continue to do so so well. Did you get that pool back up for the girls this summer? I am sure they are pleased to have you home again.
I am only at 21 months, but I am looking forward to making the same trip you are going on, but in October.
Be sure to give us the details when you get back!
Take good care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby CureIous » Wed Aug 03, 2011 11:17 pm

CRHInv wrote:Woohoo! Good for you Mark! I am glad you continue to do so so well. Did you get that pool back up for the girls this summer? I am sure they are pleased to have you home again.
I am only at 21 months, but I am looking forward to making the same trip you are going on, but in October.
Be sure to give us the details when you get back!
Take good care,
Beth


Hi Beth! Just got home, had a terrific jaunt up the coast. Such pinpoint precision and a little luck combined into a very busy but not as harrowing as I thought kind of day. Yes, I did get the new, and much larger pool up even before starting the overtime at my job, knowing that most of the summer would be gone before I could get to it again so slaved away after work and on weekends. Kids have so much more room, even the neighborhood kids are coming over to join in sometimes!

What a day though. Had this nagging thought in the back of my head to put one of Marie's books in my carry on and a copy of my video. No sooner I sat down in my window seat, than a nice lady sits down next to me and notices my shirt (it's my sentimental shirt from my previous visit). One thing leads to another and pretty soon the plane was landing and we were still talking. I'll be emailing her some links and such, gave her that copy of the book, she happens to have a personal connection with MS/probable MS and was all ears. Hate to divulge any more without permission of course but it was a great plane ride.

Shuttle got me to the new, and I mean Stanford spared no expense kind of new, imaging center on Sherman just off El Camino. If any of you guys get sent there, fear not, it is five star all the way, even the changing room looks like your own personal lounge, it is NICE.

So they got me out of there in the customary hour and a half and just caught the Stanford V line shuttle around the corner (in front of Radio Shack FYI) which goes straight to the hospital. Very convenient and free!

But, Dr. D was caught up in a meeting so had to wait a bit, by that time I was close to my shuttle coming for the flight back so we wasted no time. Long story short, my stents are in perfecto condition, only thing he was zeroing in on was an area downstream on my right side, where the subclavian (inonimate?)vein intersects the RIJV, as he was pointing out an area where it appears a valve might be acting up. I recognized the spot immediately and will post up a pic of it later. More intriguing than anything and absence any really GOOD reason, it will probably remain as such.

Alex was jazzed to see the book (I stole a picture of her reading it haha!), but that was my autographed copy so we'll have to get her another one. After all, she's the one that scheduled just about everyone in that book eh? :) Dr. Dake and I talked shop a little bit, especially since the new imaging center uses a 3T scanner so I asked if he built a new protocol and yes indeed he did, including one that *measures the flow of blood down the jugular veins!". That was a head snapper. He's going to send me something later on my measurements and such. I asked if he would be using the Haacke protocol of course and he said no. Anyways, that 3T machine is really REALLY powerful, towards the end when they did the contrast, oh man that sequence that runs right then for a continous 15 minutes makes your stomach muscles twitch and contract, very uncomfortable.

Looking through the images now, they've really improved the system substantially since 2009, now you get the whole MRI on one DVD instead of the 3-4 CD's. There's sequences on there that are new too, one is called Perfusion of all things. Not sure how to read it but the name says a lot. I'm watching the 4D flow right now, what a trip. There's another one called "rapid CBV", so much more information than before it's incredible. The Rapid CBV also has a color version. Might post up a quickie movie of that later. Would have been great to have before/after's of those particular sequences, if only the clock could be turned back! They should be very useful in the upcoming study, contrasting blood flow through the head pre-post op is a valuable piece of information is it not? I'm looking at the columned view of all the CBV scans, very impressive. Try to get those posted up too.

All I see is vast improvements across the board. He mentioned something about going over the MRV protocol with a neurologist, and all he is waiting for now of course is the neuro department to say what they want. He intimated what we all know and understand, that essentially the ball has been lobbed back in their court, and it's cut bait or fish time and they can't have it both ways, demanding "further study", then refusing to participate in one that's laid out in front of them. Bravo. Many a Dr. would have thrown in the towel already and gone back to their normal lucrative illustrious practice eh? Speaks volumes.

Anyways, my stents are great, flow is great, nothing to see here folks. I know it's not very PC nowadays to talk about how great stents are, but for some of us, they've done just fine and continue to do so.
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 CRHInv » Thu Aug 04, 2011 6:24 am

Great update and great news Mark. I am so happy this is all working out for you and your family!

That new machine sounds a bit scary, twitching muscles and all. I will get an update out after my trip.

Take care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby magoo » Thu Aug 04, 2011 7:41 am

Fantastic Mark! Good flow, perfect stents, good health, 2 years later...all of the things we had hoped for when we made our way to Stanford in 2009!!
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 esta » Thu Aug 04, 2011 10:29 am

tx so much mark

having had a stent for a year and only hearing negatives, i feel so much better hearing this, believe me!!

i have intimal hyperplasia, but still feel better.

i'm going to dr arata in newport beach calif. next (3rd procedure), because i believe valves are the problem, and he will be doing my LJV and azygos with another stent, so now i won't worry as much...and ck out my stent, and hope of all hopes be able to do something...
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby Sharon » Thu Aug 04, 2011 10:33 am

Good news Mark!

My daughter and I are on our way to Stanford for the two year follow-up. Will be imaged at the Sherman Center also. I am expecting a good report because I am feeling quite good.

Sharon

p.s. those cute kids are growing up - enjoy your time with them.
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Postby Cece » Thu Aug 04, 2011 11:20 am

m going to dr arata in newport beach calif. next (3rd procedure), because i believe valves are the problem, and he will be doing my LJV and azygos with another stent, so now i won't worry as much...and ck out my stent, and hope of all hopes be able to do something...

But all the IRs agree that the valves are the problem. Particularly the immobile fixed leaflets that block flow. Dr. Arata thinks the annulus or ring of the valve can be torn without complications; this is where the other doctors disagree.

But with the stents there is clotting or intimal hyperplasia. Neither stenting nor ballooning is worry-free. I wonder too how he could know that you need two stents without having interrogated your veins.

:(

The Newport Beach clinic has sometimes overstated its case, starting last September when they were claiming 100% no restenosis.

If there is intimal hyperplasia in the stent, yes, he will be able to do something! What's done is place a stent within the stent. That sometimes stops the growth. It could also be intimal hyperplasia at the ends of the stent where it irritates or rubs the vein. I think that is harder to treat.

Sorry for any unsolicited opinion. I am sensitive to what we hear from Dr. Arata's patients sometimes.
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Postby Cece » Thu Aug 04, 2011 11:29 am

Anyways, my stents are great, flow is great, nothing to see here folks. I know it's not very PC nowadays to talk about how great stents are, but for some of us, they've done just fine and continue to do so.

Crazy thought but what if stents work better in bigger veins, since bigger veins might more flow and flow is good for the endothelium?

Maybe stents work better in patients who are more physically active? You'd fit that description from the sounds of it.

I like reading your updates, especially considering how long it's been since your procedure and how well you continue to do.
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Postby esta » Thu Aug 04, 2011 11:49 am

CECe i said it wrong
my LJValve will be cut and then i gather angio'd , and my azygos possibly stented as they won't know until they're in there.
this is all through my consultation with dr. hewett.
he feels this all should have been done the first time, but i don't think they knew enough then and about the first time is best scenario nor dr arta's aggressive procedures.
i am waiting till feb (my choice) so anything about them is good to hear.
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby esta » Thu Aug 04, 2011 11:53 am

cece tx for the info re the stent and the clarification re the valvus thing. i'm still hedging in that direction...not too confident on 'the others'.
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby Cece » Thu Aug 04, 2011 12:05 pm

Do you know what tool they use to cut the LIJV valve?

If you are paying out of pocket for procedures, you have my deep sympathy and support in whatever type of treatment (aggressive or moderate or cautious) you think gives you the best shot at this.
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