CTEVD Study at Buffalo Neuroimaging Center (CCSVI related)

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
ibex
Getting to Know You...
Posts: 22
Joined: 9 years ago
Location: Switzerland
Contact:

csvi-ms.net

Post by ibex » 9 years ago

SammyJo wrote:Who is maintaing http://csvi-ms.net/en
That's me. muse and me started this website project in July.
SammyJo wrote:That would be a good site for all CCSVI resources.
It's our goal to collect all the relevant CCSVI information and to present them in a somewhat formal way.
Any collaboration is welcome. From sending content or suggestions by e-mail to writing directly on the site. Anyone interested can send me a PM.

I propose to continue the discussion concerning http://csvi-ms.net on http://www.thisisms.com/ftopict-7832.html .

BTW: I'm happy that media discover CCSVI. I've already added this news to our website.

User avatar
Needled
Family Elder
Posts: 361
Joined: 10 years ago
Location: Connecticut
Contact:

Post by Needled » 9 years ago

Jacobs has established a dedicated fund for their CTEVD study. The details are listed below. I emphasized the “Purpose of donation” just because I thought it was important. The good news is that for those of you interested, there are now three dedicated CCSVI research funds from which to choose: Dr. Dake’s MS Innovations Fund at Stanford (if you donate, please do so in memory of Holly), Dr. Haacke’s MS-MRI fund, and Dr. Zivadinov’s BNAC CTEVD study at Jacobs. If it would be helpful to put details of all three funds in a separate new post so they’re all in one place and easier to find, let me know. By the way, I’m not endorsing or pushing donations or funds – I’m just putting the information out there for anyone who wants to know about it.
Description of the scientific research for which the fund was created for: Neurologists at the University at Buffalo are conducting a research study that could overturn the prevailing wisdom on the cause of multiple sclerosis (MS). The researchers will test the possibility that the symptoms of MS result from narrowing of the primary veins outside the skull, a condition called “chronic cerebrospinal venous insufficiency,” or CCSVI. This narrowing restricts the normal outflow of blood from the brain, causing alterations in the blood flow patterns within the brain that eventually causes injury to brain tissue and degeneration of neurons.

The preliminary findings are based on a pilot study conducted at the Buffalo Neuroimaging Analysis center (BNAC) part of the Jacobs neurological Institute, University of Buffalo, and at the Universities of Ferrara and Bologna, Italy. The study showed that several abnormalities affecting the predominant pathways that return venous blood from the brain to the heart occurred more frequently in MS patients than in controls.

The new study will involve 1,600 adults and 100 children. The cohort will be comprised of 1,100 patients who were diagnosed with possible or definite MS, 300 age-and-sex matched normal controls, and 300 patients with other autoimmune and neurodegenerative diseases. The technical name of the study is “Combined transcranial and extracranial venous Doppler (CTEVD) evaluation in MS and related diseases”. Enrollment in the study has begun and will continue for two years. MS patients from across the U.S. are eligible to participate in the study. To determine if the preliminary findings can be repeated, Dr. Zivadinov and Dr. Weinstock-Guttman organized the present study, which will evaluate both the velocity of blood flow through both the brain's blood vessels and the extracranial veins, using Doppler ultrasound.

All study subjects will undergo a general clinical examination and a Doppler scan of the head and neck, blood draw, extensive environmental questionnaire to identify potential MS risk factors, MRI of the brain to measure iron deposits in lesions and surrounding areas of the brain using a method called susceptibility-weighted imaging. A sub-cohort of consecutive patients and controls will undergo MRI of the veins of the neck to confirm diagnosis of CCSVI.

Purpose of donation: To support the CTEVD research study currently taking place at the University of Buffalo. At the moment, the rate of enrollment in the CTEVD study is limited by available local resources. Your contribution will allow faster enrollment in the study and provide important data before specific endovascular treatment can be recommended to the patients with MS.

Mail donation: Please make checks payable to the University at Buffalo Foundation and mail it to University at Buffalo Foundation, Center for Tomorrow, University at Buffalo North Campus, Amherst, NY 14260. Please be sure to write on the check that the donation is to support the 9333-648226 – Buffalo Neuroimaging Analysis Center Fund.
On-line donation: go to www.buffalo.edu Click on the Giving to UB link. Click on the Make a gift online link. Follow the instructions. Please be sure to type in the box “Please specify any additional instructions:” that your donation is to support the 9333-648226 – Buffalo Neuroimaging Analysis Center Fund.
[/b]

User avatar
Sawdoggie
Family Member
Posts: 63
Joined: 9 years ago
Location: Cincinnati, OH
Contact:

Post by Sawdoggie » 9 years ago

I just got home a little while ago from partipating in the BNAC study. It was very interesting and it included the doppler study, environmental questionaire, physical evaluation and history review with Dr. Weinstock-Guttman, and almost 2 solid hours in the 3-T tube (that was a really long time to remain still!). Everyone that I met with in Buffalo was outstanding. I have no idea if they saw anything out of the oridinary with my circulation in the doppler or MRI. I did get a copy of my scans but I am not an expert at reading them though it does look like a good opportunity to get my neuro involved.

All-in-all, I am glad I participated and am optimistic that the BNAC study can really help open some doors and minds, literally and figuratively. I am now anxiously awaiting their first unblinding.
Last edited by Sawdoggie 9 years ago, edited 1 time in total.

User avatar
HappyPoet
Family Elder
Posts: 1413
Joined: 9 years ago
Contact:

Post by HappyPoet » 9 years ago

Hi Sawdoggie,

Thanks for writing such a terrific post about your experience and thanks for participating!

Have you looked at your scans yet to see if there's any obvious stenosis like beechwood297 saw on his images (collar bone pinching his only jugular)?

Will you be asking a local doctor to read your scans? Trying to get your neuro involved is a good idea.

Best of luck and thanks again.

~HP

User avatar
bestadmom
Family Elder
Posts: 722
Joined: 9 years ago
Location: CT
Contact:

Post by bestadmom » 9 years ago

Sawdoggie,

You were able to leave with your scans?

Please let me know exactly what you got.

thanks
Last edited by bestadmom 9 years ago, edited 1 time in total.

User avatar
Sawdoggie
Family Member
Posts: 63
Joined: 9 years ago
Location: Cincinnati, OH
Contact:

Post by Sawdoggie » 9 years ago

I picked up the disc from their X-Ray department about 15 minutes after I was finished. The CD is the raw MRI scans without any interpretation. I don't have any results as obviously nothing has been read yet.
Last edited by Sawdoggie 9 years ago, edited 1 time in total.

User avatar
ozarkcanoer
Family Elder
Posts: 1273
Joined: 9 years ago
Location: St. Louis, Missouri
Contact:

Post by ozarkcanoer » 9 years ago

I will be participating in the Detroit MS-MRI study on Dec 7 conducted by Dr Haacke. I asked the study coordinator if I would get a copy of the scans, and she said YES. I guess I will have to be persistent and make sure I have that CD in my hands before I leave Detroit to come home.

radeck
Family Elder
Posts: 398
Joined: 10 years ago
Contact:

Post by radeck » 9 years ago

MRV is for venous and MRA for angiography. I think both are practically the same thing, ie displaying the vessels. If you post pictures here we can help find out if and what kind if stenosis you have.

jenf
Family Elder
Posts: 106
Joined: 9 years ago
Location: Albany, NY
Contact:

Post by jenf » 9 years ago

Radeck,
I have an MR from my Buffalo trip. I'm not sure what type it is though. I've looked at it, but cannot make any sense of it. If members on here know what they're looking for, Id be more than happy to post it online. I'll try and upload it tonight, then post the link to the site. And to think, parents are concerned with their children posting provocative pictures on the web.... Nothing like putting your brain out there!! LOL!!
Jen

User avatar
bestadmom
Family Elder
Posts: 722
Joined: 9 years ago
Location: CT
Contact:

Post by bestadmom » 9 years ago

Jenf,

Pls post your mri if you can. Many of us know what we are looking at.

User avatar
ozarkcanoer
Family Elder
Posts: 1273
Joined: 9 years ago
Location: St. Louis, Missouri
Contact:

Post by ozarkcanoer » 9 years ago

:D I'm going to Detroit at some unknown time to be imaged by Dr Haacke. I had been scheduled for Dec 7, but I was notified that it had to be postponed. So just a few minutes ago I decided to sign up for the Buffalo study. What do I have to lose ? Since they aren't going to start up again until February 2010, maybe I'll be accepted to go to Buffalo when there isn't 8 feet of snow on the ground, LOL. And maybe sometime soon Dr Haacke's nurse coordinator will call me for the Detroit study too !!

User avatar
bestadmom
Family Elder
Posts: 722
Joined: 9 years ago
Location: CT
Contact:

Post by bestadmom » 9 years ago

Jill,

Will Buffalo give you the disk? I heard they were no longer doing so, but I don't know if that is true.

User avatar
ozarkcanoer
Family Elder
Posts: 1273
Joined: 9 years ago
Location: St. Louis, Missouri
Contact:

Post by ozarkcanoer » 9 years ago

bestadmom, I think Buffalo will give participants a copy of any MRIs done, but nothing else. But Dr Haacke's nurse told me that I would get a copy of Dr Haacke's MS-MRI imaging. I don't know if Buffalo is using the same protocol as Dr Haacke or not. I may get 2 MRIs, LOL. But I am not counting my MRIs before they are hatched, LOL.

User avatar
bestadmom
Family Elder
Posts: 722
Joined: 9 years ago
Location: CT
Contact:

Post by bestadmom » 9 years ago

Jill,

The mrv is on the mri disk from Buffalo.

Michelle

User avatar
ozarkcanoer
Family Elder
Posts: 1273
Joined: 9 years ago
Location: St. Louis, Missouri
Contact:

Post by ozarkcanoer » 9 years ago

That's good to know, bestadmom !! It will probably be months before I go to Buffalo, even if I get chosen, which I may not be. But I was assured by Dr Haacke's nurse coordinator that I will be given a new date for Detroit.

ozarkcanoer

Post Reply
  • Similar Topics
    Replies
    Views
    Last post