Stanford Relapses?

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

Stanford Relapses?

Postby Rokkit » Wed Feb 17, 2010 12:09 pm

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?
Rokkit
Family Elder
 
Posts: 669
Joined: Tue May 19, 2009 2:00 pm

Advertisement

Postby Cece » Wed Feb 17, 2010 12:27 pm

Hey, that's a good question....
"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
Cece
Family Elder
 
Posts: 9040
Joined: Mon Jan 04, 2010 3:00 pm

Postby cah » Wed Feb 17, 2010 12:34 pm

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.
"There is only one good, knowledge, and one evil, ignorance." Socrates
User avatar
cah
Family Elder
 
Posts: 336
Joined: Tue Oct 27, 2009 3:00 pm
Location: Germany

Postby CureIous » Wed Feb 17, 2010 2:52 pm

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
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
User avatar
CureIous
Family Elder
 
Posts: 1210
Joined: Tue Jul 14, 2009 2:00 pm
Location: Riverside, CA

Postby magoo » Wed Feb 17, 2010 4:04 pm

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!!!!!
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.
User avatar
magoo
Family Elder
 
Posts: 557
Joined: Thu Sep 10, 2009 2:00 pm
Location: Charlotte, NC

Postby CRHInv » Wed Feb 17, 2010 5:55 pm

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.
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.
User avatar
CRHInv
Family Elder
 
Posts: 402
Joined: Sun Aug 30, 2009 2:00 pm
Location: Chandler, AZ

Postby ozarkcanoer » Wed Feb 17, 2010 6:19 pm

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

ozarkcanoer
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 2:00 pm
Location: St. Louis, Missouri

Postby mrsilkykat » Thu Feb 18, 2010 8:27 pm

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.
Kat
User avatar
mrsilkykat
Family Member
 
Posts: 67
Joined: Tue Dec 01, 2009 3:00 pm
Location: Berkeley, CA

Postby Loobie » Fri Feb 19, 2010 4:57 am

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...
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA

Postby Sharon » Fri Feb 19, 2010 7:04 am

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
User avatar
Sharon
Family Elder
 
Posts: 1239
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado

Postby coach » Fri Feb 19, 2010 7:41 pm

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.
User avatar
coach
Family Elder
 
Posts: 201
Joined: Wed Jun 02, 2004 2:00 pm
Location: georgia

Looking forward to Stanford

Postby kenneb9 » Fri Feb 19, 2010 11:15 pm

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
User avatar
kenneb9
Family Member
 
Posts: 26
Joined: Wed Jan 06, 2010 3:00 pm
Location: California

Postby mrhodes40 » Sat Feb 20, 2010 8:10 am

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.
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby cheerleader » Sat Feb 20, 2010 9:00 am

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
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5075
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Stanford Trials

Postby Opera » Sat Feb 20, 2010 1:09 pm

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.
User avatar
Opera
Family Member
 
Posts: 83
Joined: Thu Jan 14, 2010 3:00 pm

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service

cron