Notes from CureIous' at Stanford

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

Postby belsadie » Thu Jun 10, 2010 6:05 am

I am SO grateful for all the information given in this forum . You're all so smart!. The support given to the newly liberated by those waiting in line is most encouraging. I am asking for your positive thoughts and prayers- I am scheduled for evaluation and possible treatment at the end of this month [June]. I am so very anxious about their being stopped (remember the past fiascoes and disappointments) and the possibility of their not being evidence of CCSVI and therefore no treatment/liberation. My mind can't stop racing and I am forever preoccupied by these thoughts! Talk about trying to maintain a stress less environment.. Yeah,Right.......
I 'll continue reading the forum notes but probably won't be replying til this is finalized. I WILL post the results. KEEP ME IN YOUR PRAYERS
Thanks to all..........................................................................................
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Postby Trish317 » Thu Jun 10, 2010 9:47 am

belsadie wrote:I am SO grateful for all the information given in this forum . You're all so smart!. The support given to the newly liberated by those waiting in line is most encouraging. I am asking for your positive thoughts and prayers- I am scheduled for evaluation and possible treatment at the end of this month [June]. I am so very anxious about their being stopped (remember the past fiascoes and disappointments) and the possibility of their not being evidence of CCSVI and therefore no treatment/liberation. My mind can't stop racing and I am forever preoccupied by these thoughts! Talk about trying to maintain a stress less environment.. Yeah,Right.......
I 'll continue reading the forum notes but probably won't be replying til this is finalized. I WILL post the results. KEEP ME IN YOUR PRAYERS
Thanks to all..........................................................................................


Sending you prayers and good thoughts, Belsadie. Stay positive!
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Postby Algis » Thu Jun 10, 2010 9:59 pm

All the best Belsadie :) We're with you!
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Postby CureIous » Tue Jun 15, 2010 3:08 pm

Hi everyone, sorry no pretty pictures this time, (what?!), but did want to at least make a note of my most recent visit to the neuro's office fwiw.

At our latest consult a week or so ago, I mentioned to him about another EVP (evoked potentials) test, since we had an established baseline back in 2008, which confirmed , (at that time) my right eye was slower in response than the left, and that eye indeed was the first indication that anything was amiss back when I had my first bonafide flareup.

This of course is pretty standard issue for many of us as a first presenting symptom, something that drives you into the doctor when you wake up and your eye is turned into your nose seemingly overnight.

Anyways wasn't expecting much other than whatever the truth is, and I got it today, the eye is stable. That's it. No major fireworks, nothing concrete to prop up CCSVI, unless one considers from the outset, as I did, that stabilization is the goal, and any improvements beyond that are "gravy".

Well, so far mission accomplished, the nerve responses on the right eye are exactly where they were at the first test. In fact the nurse was quite excited to tell me that lol.

Symptom wise, there just really isn't anything there that makes me say, "oh there goes the ON again". No pains behind the eye, no more flashes of light or jittery tracking problems, definitely no turning-inwards but that hadn't been an issue since the first episode anyways.

Stable. This is good. No drugs either, that's even better, but to reiterate everyone else in here that "made that plunge", that is a highly personalized decision and against the advice of every doctor involved in this, FYI. I'm hopeful that at this point, with the blood flow stabilized, the reflux minimized and/or eliminated, my immune system not always on the attack (presumption there), MRI's showing stable, EVP stable, it's time to shift into neutral and coast, but with an eye on the road ahead and another on the rear view, just in case.

The graph is a piece of paper that makes squiggly lines, it doesn't embellish, nor does it have any placebo effects, it just is.

:)

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 Sharon » Tue Jun 15, 2010 3:36 pm

Hey Mark -

STABLE!!! No drugs. What a wonderful report.

Enjoy the summer with those three cute kids.

Sharon
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Postby magoo » Tue Jun 15, 2010 5:02 pm

So many good points in this latest report!!!!
Enjoy coasting and be well :D
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 prof8 » Tue Jun 15, 2010 5:48 pm

Hey Mark,

I haven't been in the CCSVI forum in months but came back today to find your recent post. There are a few people I have been wondering about and you were one! I'm glad to know that things are still stable for you. WHOOHOO!!

I am getting ready to go back and have a repeat scan done to see if the lower jugular vein blockage really did disappear on the venography. If I can get my act together, Dr. Dake said he is interested in seeing the venography results to compare to my MRV to try to figure out what happened. Since I haven't been on this board in months maybe there have been other people that had the same problem.

Anyhow, I don't mean to digress into my situation. I think it's awesome that you are still doing well. Good luck with everything.

Prof8
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Postby ozarkcanoer » Tue Jun 15, 2010 5:59 pm

Curious,

It is so good to hear your report. That means more hope for those of us still waiting to be liberated !

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Postby kc » Wed Jun 16, 2010 7:17 am

C
Actually this report sounds pretty good to me. Ok maybe I have fantasies that my procedure will make me bionic, but I will settle for normal. How do u feel? Do u have "the spark of life"? R u working?

kc
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Postby CureIous » Fri Jul 02, 2010 10:23 am

Can't think of a better time to post this up, than the one year anniversary of when I first learned of CCSVI, an obscure reference in an obscure corner of the internets.

Unfortunately, this was deemed too controversial to use on the Alliance website.... CCSVI+controversy? Now THAT'S a new one...


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

Independence ain't just for veins, people, it's what made our nation great.

Anyways, I'll let you be the judge.

I always tell my children, life is (partly) about finding out who your real friends are, friends will disagree with you as they are helping you load up the U-Haul. Friends won't smile at you on the one hand, then dump you when you won't perpetrate a fraud for them, they would never put you in that position...

Well, my friends list got a bit shorter these past few weeks, but that's okay, because realizing they were never friends in the first place is the true liberation...

God help us if we speak the truth anymore, it's all about facade, gimmickry, fighting fire with fire, appearances, truth is irrelevant, it's results that matter, no matter how obtained. Welcome to America.

It is very sad to see MS patients being tossed around like pawns in this high stakes game, and to see people willing to sacrifice anyone and everyone in their way to achieve a goal.

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 cheerleader » Fri Jul 02, 2010 10:53 am

Mark--
that's a great video. Honestly. I love it. I'm sorry you feel the friends list is shorter...I think it's more about the enemies list getting longer :) Not your enemies, but other, more general ones, and I think you understand.

I'm so thankful that you and Jeff and Lew and Marie and Sharon and Randi and Mel and Rhonda and a bunch of other really brave pwMS decided to looking into Dr. Zamboni's discovery for yourselves, and went to Stanford. Where would this all be, if not for you? It's been hard for me, knowing that there were people with adverse affects...(heart-breaking, actually) but to know that there have been successes, too, makes it a bit easier to take. The truth is, we are still only in the beginning of this adventure. Hollywood has courted Dr. Zamboni, and he has refused to sell his story yet...we don't know the ending of the script, and he wants to wait. In order to get the information out there, it is going to mean navigating some pretty treacherous waters.

Here's some really good news for you. IRs are taking this on for pwMS. A new doctor -leader of Society of IRs- in Baltimore just came forward last night on my Facebook page (!) I think there will be more research and science to come. I hope you know how much I admire you, and I'm saying this all publicly, because I want it on record....
thanks for everything, my friend-
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby tzootsi » Fri Jul 02, 2010 11:11 am

Great video, loved the music!
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Postby Flashover81 » Fri Jul 02, 2010 11:47 am

Great Video. The before and after pictures are amazing.. Thank's for posting..
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Postby ErikaSlovakia » Fri Jul 02, 2010 11:56 am

Thank you Mark for the video. I have just placed it on Slovak MS Forum as well.
I loved the music :)
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby ozarkcanoer » Fri Jul 02, 2010 12:01 pm

Curious,

An Academy award winner for Best Documentary for sure !! Was any of your stenosis at the C1-C2 level ? I know I could look this up, but I have CCSVI in my right IJV at C1-C2. I was tested at BNAC and there is complete blockage. My local guy said that this would need a stent and he is reluctant to treat me because he "doesn't know if it would help" :cry: .

BTW, I love the music.

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