This Is MS Multiple Sclerosis Community: Knowledge & Support

Stanford was the first to treat outside of Zamboni's study. We're getting to the point where there are quite a few patients who are quite a few months out from being treated at Stanford. I've yet to hear of a single Stanford RRMS patient with a relapse. How far out do we have to get before this becomes meaningful?

Hey, that's a good question....

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

just what I though quite a few times. But I think it will NEVER become meaningful to (certain) professionals unless it's a randomized placebo controlled blah.

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"There is only one good, knowledge, and one evil, ignorance." Socrates

True, not a randomized trial, but I didn't need that level of evidence to go up there, just from what I read here on an overall basis.

6 months out, relapse free. Not "MS" free, but no definitive verifiable true-blue relapses, and that I am 100% sure of.

Hey almost 7 months! Within 1 day of my 3rd kid being born too! How great is that?

Mark

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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

Mark, anytime now huh? Baby number three!!! You know you will be outnumbered now, right?!! Congrats!
I would love to know how many Stanford patients have continued to improve or have settled into their new and improved normal. I know I had a few setbacks which I've found out were unrelated to MS or CCSVI. Once they were settled I was back to feeling normal and good!!! I am having some issues with Plavix and asprin, but don't know exactly what's wrong yet.
Stanford patients chime in, we'd love to know how you are doing!!!!!

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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.

No relapses or new progression for me. Just the opposite. Little things keep getting better. I have a new set of shoulder exercises thanks to my OT SIL and am looking forward to healing even more.

Only wierd thing... I think I am having hot flashes all of the sudden. I am 47, so it might just be time, but the timing is strange. They started as soon as I went off the warfarin. I have been checking today to make sure I don't have a fever. They are mild compared to what I have seen friends go through, so I started wondering if maybe I just have a fever. I will keep checking.

Rhonda, I guess if it isn't one thing, it is another! Enough! I have other plans! Boy is it nice to make plans.

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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.

Sorry to be off-topic, but has anybody heard what is going on with Dr Dake and Stanford lately ? Thanks.

ozarkcanoer

OC,

Stanford officially says "After careful review at Stanford, we have determined that the initiation of a clinical development program leading to a possible clinical trial will be the next step so that we can fully examine the possible risks and benefits of the intervention procedure etc etc etc..."

I guess this means they are beginning a program to determine if they want to do clinical trials. They're going to hang around until they see which way the wind is blowing. I don't imagine there will be any help from them for awhile. Wouldn't want to rush things just for us MSers. rush this.

In other news, I heard from a friend that our mutual neuro said the neuros (including herself) attending a conference think Zivadinov has "gone off his rocker". His newsletter was "unprofessional". They/she are willfully misunderstanding him, saying "he says he is the only one who can see CCSVI on the ultrasounds." They think he is brilliant but nuts.

I get the feeling the neuros will continue to stand in the way of this Big Time.

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Kat

I have to speak up here since I'm a Stanford SPMS person. I've had (knocking on wood hard) no progression and my first procedure was 7/15/09. I continue to get used to my new normal and continue to have subtle improvements. I, for one, am GLAD to have stents. My jugs could be trying to re-stenose as we speak and those bad boys could be keeping me open. Count me in the no disease activity camp from Stanford. I hope I don't have to eat those words...

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

I am another Stanford "stenter" who is relapse free and feeling good. I am almost nine months out - I can honestly say that I do not feel MSie anymore. I still walk with my limp and I still have foot drop, but there are positive subtle changes happening in my leg and foot ---- I can actually bend my toes!
The Stanford group may not have been blinded or controlled and the docs out there can say we are experiencing the placebo effect ---Whatever!! -- Do I care? Of course not! We were very fortunate to have had Dr. Dake standing with us -

Sharon

I agree Sharon. Sounds as if Stanford may be waffling on some things. I think that Dr. Dake was brave and courageous to take on MS patients and Cheer was brave to seek his services and share the information so that others could benefit.

We are trying to get into Stanford this next month for screening, not under DR. Dake. Of further note a little off subject, Woundn't it be great if MS patients got this attention
http://www.ge.com/innovation/vancouver/ ... ml?C_ID=HP

I am doing well too. I am still trying to get over the nerve issue I was person #2 so my stent is big. My physical therapist and physiatrist (rehab MD) both note the profound difference in flexor spasm levels. I have no change in mobility level I still walk with a cane but I am working now.

My pattern pre stent was slow progression, I am not sure it is long enough to say with certainty I am not progressing, but we are rapidly approaching that time frame--I always knew at holidays that I was "worse" than the holiday before. 4th of July is my mental check point . If I am able to go to the beach to watch the fireworks or something like that...I'll know for sure.

I was treated 5/19/09. 9 months.

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I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Jeff continues to do well...no relapses or progression- ten months out. He just supervised a move for our family (down the street to a nice new home) while I was in Florida with my Dad in hospice and after he passed. Jeff was able to work, take care of our kid and get us moved in and unpacked while I was gone. He said it would have been impossible pre-stents. Jeff remains convinced this has put the brakes on his MS. I know that the Stanford gang doesn't want to give false hope (it's a kind-hearted group of people) but we're coming up on Jeff's one year scans, and I'm excited to see if there will be any remyelination in his brain, or increase in gray matter. We feel very blessed-
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Joan, my deepest sympathies to you re your Dad. Hope you are taking care of yourself. I am very happy to hear about Jeff's progress. Wish him all the best.


Apart from the official version of Stanford that they may have clinial trials, does any one have any other information as to what is happening currently in Stanford re CCSVI.