Unsupportive Family Members, can someone help me?

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

Unsupportive Family Members, can someone help me?

Postby cathyb » Sun Apr 11, 2010 12:19 pm

Hi, Everyone.

I have been on thisisms for only about four months, and largely due to my fortunate disease situation (I would call it 'stable') I have had the luxury of taking the time to let events unfold before I start working locally. Last week, I finally took my first steps into getting tested for CCSVI by requesting a test at Georgetown. Hopefully, it will come through (the nurse I faxed the request to seemed pretty interested to get the request even though the first fax failed thanks, Kinkos! ;)).

I have been sharing info about CCSVI since I found out about it; it makes very, VERY good scientific sense to me. I never expected family members to ask me a question about my belief that this is real that I cannot answer (largely because I found the answer somewhere on thisisms). For the most part, I have a very skeptical-of-MS-breakthroughs family which I largely blame on the Tysabri fiasco.

Anyway, the question is this: What results/changes have people seen on MRI after they have been liberated? I can't find the information on thisisms, either positive or negative. I was hoping someone could point me in the right direction so that I can squash this discussion by people that really do love me and want me to get better, but that tend to be people that feel objective measurements like MRI are bottom-line important.

Thanks to anyone that can help, I apologize for the long-winded post.

Cathy
User avatar
cathyb
Family Member
 
Posts: 63
Joined: Tue Dec 29, 2009 3:00 pm

Advertisement

Postby Zeureka » Sun Apr 11, 2010 12:46 pm

Maybe you can tell them of a quote from Zamboni mentioned in an article of Franco Pepe: "Many of my patients have shown benefits. Many did not have relapses. The number of cerebral and spinal lesions is reduced. And it improves the quality of life of the MS ill people. Not only: to be sure that results would last with time we waited a few years."

In addition, there are now so many testimonials on improvements from patients treated in eg Italy, Poland, US and Kuwait. You could for example show them the recent Canada TV movies and article on the interventions in Kuwait (for links see latest entries of MEDIA COVERAGE ON CCSVI!!!! thread on TIMS).

And in addition here on TIMS there is the tracking project and on facebook there are lists of Zamboni testimonials. Just to name a few described improvements: less fatigue and feeling of more energy, being able to move a hand and/or toes again, improved sensitivity issues of all kind, improved eyesight issues, and stimes improvements in feet for walking or going up steps... no curing miracles, and noone claims this! But hardly any patient had not at least a smaller (or stimes larger) improvement.
Last edited by Zeureka on Sun Apr 11, 2010 1:36 pm, edited 1 time in total.
User avatar
Zeureka
Family Elder
 
Posts: 481
Joined: Thu Jan 14, 2010 3:00 pm
Location: Italy

Postby cheerleader » Sun Apr 11, 2010 1:01 pm

the people on the tracking thread are starting to come up on their one year MRIs at Stanford. Jeff will be there the end of this month, and we'll update on the tracking thread.

http://www.thisisms.com/ftopict-8346.html

Dr. Zamboni's wife and the first patients he treated endovascularly have had no relapses or new lesions- as long as their veins remained open. Of course, I don't believe white matter lesions are the whole story...it's more about axonal degeneration and gray matter loss--most progressive patients don't even have many white matter lesions, or changes in lesion numbers. The neuros use the lesion count, most look at that for drug efficacy. And if it helps your family members understand, here's Dr. Zamboni's study-

Outpatient endovascular treatment of CCSVI was feasible, with a minor and negligible complication rate. Postoperative venous pressure was significantly lower in the IJVs and AZY (P < .001). The risk of restenosis was higher in the IJVs compared with the AZY (patency rate: IJV, 53%; AZY, 96%; odds ratio, 16; 95% confidence interval, 3.5-72.5; P < .0001). CCSVI endovascular treatment significantly improved MS clinical outcome measures, especially in the RR group: the rate of relapse-free patients changed from 27% to 50% postoperatively (P < .001) and of MR Gad+ lesions from 50% to 12% (P < .0001). The Multiple Sclerosis Functional Composite at 1 year improved significantly in RR patients (P < .008) but not in PP or SP. Physical QOL improved significantly in RR (P < .01) and in PP patients (P < .03), with a positive trend in SP (P < .0eight). Mental QOL showed significant improvement in RR (P < .003) and in PP (P < .01), but not in SP.


link
best of luck,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5094
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

.

Postby Lyon » Sun Apr 11, 2010 1:07 pm

.
Last edited by Lyon on Mon Nov 21, 2011 4:38 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 2:00 pm

Postby Zeureka » Sun Apr 11, 2010 1:16 pm

Thanks Cheer, I was actually remembering sthg on MRI results from the Zamboni paper and just did not know anymore where to find it - so this is of course more convincing than digging out a quote...great you have always all this data ready on track...I have gaps in my brain stimes...and remember having read thing s.where, but where.... But really without exaggerating: you are always so organised and knowledgeable! Thank you!
User avatar
Zeureka
Family Elder
 
Posts: 481
Joined: Thu Jan 14, 2010 3:00 pm
Location: Italy

Postby cathyb » Sun Apr 11, 2010 1:25 pm

Thank you SOOOOO much everyone, I cannot tell you how much I appreciate your help. Thisisms is SUCH a great place. Where else can you find people that know so very, very very much and are so willing to help when you can't find an answer. This is all so new, and people are really asking some good questions now, and I am glad I have a place to go to get (and consequently GIVE) real and accurate answers. :)
User avatar
cathyb
Family Member
 
Posts: 63
Joined: Tue Dec 29, 2009 3:00 pm

What is scientific evidence

Postby fiddler » Mon Apr 12, 2010 5:46 am

Lyon, I don't mean this facetiously: what should be considered "scientific evidence"? Do only fewer active lesions count? But what about the generally held belief (by MS researchers) that simply counting active lesions is, well, way too simplistic? Do quality of life and reduced relapses not count because they are too subjective? In that case, you would have to say that few (if any) current drug treatments have scientific evidence of effectiveness. If you do accept such more subjective evidence as being scientific, then what about the papers published by Zamboni... why do they not count as much as similar drug studies? It would be good if someone could suggest definitions of "scientific evidence" and then compare all MS studies on that basis.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
User avatar
fiddler
Family Elder
 
Posts: 398
Joined: Wed Dec 02, 2009 3:00 pm
Location: Fredericton, Canada


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