CTEVD Study at Buffalo Neuroimaging Center (CCSVI related)

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

Postby jay123 » Wed Dec 09, 2009 6:34 pm

Yes, I just reviewed mine. I can see where you need to have a lot of experience to know what the heck you are looking at!
User avatar
jay123
Family Elder
 
Posts: 381
Joined: Mon Sep 21, 2009 3:00 pm

Advertisement

Postby jenf » Wed Dec 09, 2009 7:47 pm

Very exciting stuff.... I didn't realize that the films I had had such detailed images1! I've uploaded several of them (I think w/and w/o Gladium) and the are available on You Tube at the following URLs: http://www.youtube.com/watch?v=QC0XC3JvnNM, http://www.youtube.com/watch?v=XGJT3kRcH5c, http://www.youtube.com/watch?v=vQ5l_rLlt_U, http://www.youtube.com/watch?v=FLaOZatNazw. Looking at some of the other images of CCSVI on You Tube, I tried to decipher my own images. I'm not a doctor, so if anyone else knows how to read these, I welcome any input. May be my imagination, but on one of the side images, I almost think I can see an abnormality.... Thank you to everyone here... I don't know where I would be without this group!
Jen
RRMS - dx 06/09
LDN 4.5 mg - 06/08
jenf
Family Elder
 
Posts: 106
Joined: Thu Sep 17, 2009 3:00 pm
Location: Albany, NY

Postby bestadmom » Wed Dec 09, 2009 7:56 pm

Jenf,

The links didn't go to your mri's. Can you check them?

mb
User avatar
bestadmom
Family Elder
 
Posts: 722
Joined: Mon May 18, 2009 3:00 pm
Location: CT

Postby ozarkcanoer » Wed Dec 09, 2009 7:57 pm

jay123 and jenf, can't you guys get appointments with interventional radiologists, or neuroradiologists to help you interpret you scans ?

ozarkcanoer
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 3:00 pm
Location: St. Louis, Missouri

Postby Sawdoggie » Wed Dec 09, 2009 8:07 pm

It was hard to tell from the avi's as the images were small (if you copy and paste the link and remove the comma or period at the end they work). Did you have an an actual MRV on the disc?

I have an appointment with my neurologist tomorrow to talk about my Buffalo images. He said in an email that the brain MRI was interesting in light of the CCSVI theory as that it suggests a high iron concentration where it would be expected. He had a neuroradiologist look at the MRVs and all I know was that there are abnormalities and he suggested coming in and talking about it. It should be interesting.
User avatar
Sawdoggie
Family Member
 
Posts: 63
Joined: Mon Sep 07, 2009 3:00 pm
Location: Cincinnati, OH

Postby jenf » Wed Dec 09, 2009 8:58 pm

Bestadmom,
I just checked them out and I'm not sure why they are directing to the home page on You Tube. Here they are again: http://www.youtube.com/watch?v=FLaOZatNazw, http://www.youtube.com/watch?v=vQ5l_rLlt_U, http://www.youtube.com/watch?v=QC0XC3JvnNM, http://www.youtube.com/watch?v=FLaOZatNazw. When I cut and paste them, they do work.

Now that I know there's more on the CD than just an MRI, I will make an appointment with my GP and a radiologist tomorrow. I've been trying to figure out where to go from here. I've traveled all over New York state, from Buffalo to Long Island, trying to get answers. I'll do anything within my power and means to get to the bottom of this "condition".

When I first approached my Neuro about CCSVI back in September, he told me there wasn't anything to the theory. I didn't stop there. I went to a doctor who attend the CCSVI conference in Bologna to get her input. After meeting with her, I found out about CTEVD study in Buffalo. I signed up for that and drove out to Buffalo. That was three weeks ago. After that, I made an appointment with a Vascular doc. When he advised me he couldn't help me, I decided to take a break in my quest. Now, after a few weeks, I'm ready to start the fight again.

I'm just not sure exactly what to do next. Because of the recent explosion in the news of CCSVI, I thought it was best to let things quiet down a bit before revving back up again. So, here I am, revved up and ready to go... and I'm open to suggestions!!
Jen
jenf
Family Elder
 
Posts: 106
Joined: Thu Sep 17, 2009 3:00 pm
Location: Albany, NY

Re: CTEVD Study at Buffalo Neuroimaging Center

Postby NHE » Thu Dec 10, 2009 2:02 am

jenf wrote:I just checked them out and I'm not sure why they are directing to the home page on You Tube.


The problem with the links is due to the commas. Please see this post in the Forums FAQ.

NHE wrote:Q: Why doesn't the URL I put into my message work?


I hope that this helps.

NHE
User avatar
NHE
Volunteer Moderator
 
Posts: 3333
Joined: Sat Nov 20, 2004 4:00 pm

Re: CTEVD Study at Buffalo Neuroimaging Center

Postby NHE » Thu Dec 10, 2009 2:30 am

bestadmom wrote:The mrv is on the mri disk from Buffalo.

ozarkcanoer wrote: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.


The information that I read was that JNI was only performing MRVs on a limited number of participants in the study. I think that it was the first 250. They may have already completed these and may no longer be performing MRVs as part of the study.

NHE
User avatar
NHE
Volunteer Moderator
 
Posts: 3333
Joined: Sat Nov 20, 2004 4:00 pm

Postby CureOrBust » Thu Dec 10, 2009 4:49 am

User avatar
CureOrBust
Family Elder
 
Posts: 2910
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby Dragonfly » Thu Dec 10, 2009 8:50 am

I participated in this study shortly before Thanksgiving. I had both MRI & MRV, and I have the CD. I am waiting to have it looked at the medical university where I work (just too much going on with the holidays). My mother participated as a control (I have MS, she doesn't). We both had the Dopplers, but only I had the MRI/MRV.

The interesting thing is that BNAC called her this morning and asked her to come in on Saturday morning for an MRI. I find this very intriguing, because as far as I knew, the controls were not getting an MRI. Anyone know of any controls in this study who had an MRI?

Rebecca
User avatar
Dragonfly
Getting to Know You...
 
Posts: 13
Joined: Wed Sep 30, 2009 3:00 pm

Postby EnjoyingTheRide » Thu Dec 10, 2009 9:51 am

I just received the email below from the CTEVD people. Some good and some not so good stuff:

Good

Trial is underway. Results for first 500 will be ready in late January. I seem to be in the potential pool for the phase 2 trial.

Bad

No doppler or MRV results will be shared with patients or patients' doctors.

I'm very excited that this study is going on. If it proves a correlation between CCSVI and MS then we are all off and running.

If I'm not going to be able to view the results of my testing, and I don't think that this study will have a problem finding enough participants, I may pass. That's a long distance for me to travel, and I don't travel as well as I used to ( full-time wheelchair user). We will see.

I xxxx'd out any info that I thought they may not want the whole world to know about.


"Thank you for your continued interest in the Combined Transcranial and Extracranial Venous Doppler (CTEVD) Evaluation in MS and related Diseases study. Chronic cerebrospinal venous insufficiency (CCSVI) is an ongoing problem when blood from the brain has difficulty flowing properly to the heart due to blockages or stenoses (narrowing of the veins). The main goal of the CTEVD study is to investigate the prevalence (frequency) of CCSVI in patients with multiple sclerosis (MS) when compared to healthy controls (HC) and controls with other neurological disorders (OND). Another important aim of the CTEVD study is to investigate the relationship between CCSVI and clinical, magnetic resonance imaging (MRI) and environmental-genetic outcomes in MS patients, HC, and controls with OND.

I am aware that you have already been in contact with our team regarding the study. We would like to keep you at the front of our contact list and continue our screening procedures with your cooperation. We have received an enormous response to recent media reports about our study. Due to the number of applicants and limited funding we are providing you additional information on our study and requesting some details about you in order to assist us in evaluating your eligibility to participate. Currently, enrollment will be closed until late January 2010 in order to evaluate initial study results on first 500 enrolled subjects. If you would still like to be considered for this study or any future studies, please follow the instructions in this message.

1) Applications will be processed according to our study criteria and in the order they are received.
2) Please only use the xxx email address to communicate with our study. An automated voice messaging system (xxxxx) has been established to direct you. Voice messages are not being returned at this time.
3) If you decide to write to the email address above, you will receive a response with instructions to complete an online questionnaire.
4) Once the team evaluates the information you provide in the questionnaire, you will be contacted to inform you if you are eligible for further screening. This process can take at least 1-2 months.

Please note this is a research diagnostic study - there are no treatment interventions planned in this study. The study procedures include doppler/ultrasound testing, blood collection, a clinical examination and completion of an Environmental Questionnaire. Interested participants can also have an MRI performed. A subset of these individuals with also have an MRI of the neck veins.


You must:
- Be an adult or child with confirmed MS
- Adult MS must be supported by fulfillment of the McDonald criteria
- Pediatric MS must be supported by fulfillment of Krupp and International criteria
- Have a disease course of Clinically Isolated Syndrome (CIS), Relapse-Remitting (RR), Secondary-Progressive (SP), or Primary-Progressive (PP) supported by the Lublin criteria
- Have normal kidney functioning as supported by lab work performed within 2 months of MRI testing (within 2 weeks if other criteria are met)
- Be able to communicate effectively
- Pass screening for MRI and contrast agent safety
- Be able to travel to Buffalo, NY to complete testing (we only have this site for testing)


You must not:
- Be in active relapse or have steroid treatment in 30 days prior to MRI
- Have any vascular or heart problems
- Have severe cognitive impairment/dysfunction
- Have a history of drug or alcohol abuse, cerebrovascular disease or cerebral vascular malformations, head injury or brain trauma
- Have any vascular malformations (Bechet Disease, Budd Chiari Syndrome, Congenital vascular malformations, Deep Vein Thrombosis within the past year, Chronic Venous Insufficiency of the lower limbs)
- Be pregnant or expect to be pregnant during participation

If you are writing on behalf of a relative or friend, please instruct him/her to contact us directly at this email address: xxxxxxxx

Please do not make any travel plans until your enrollment is confirmed. All testing procedures are paid for by BNAC. However, there is no financial compensation for your participation, or travel and related expenses.

No Doppler or MRV reports will be given to participants or their physicians. Research MRI reports of the brain can be made available upon request.

If you think you are eligible to participate and are willing to travel to Buffalo, NY for testing, please take a moment to complete an online questionnaire which has been designed to assist our team in determining your eligibility as well as providing valuable clinical data for your research record. The questionnaire can be accessed by going to:

https://xxx.xxx

If you have already completed paperwork, thank you for doing so. I am still asking you to complete the online questionnaire so that we can gather additional information about you and so that your information is entered automatically into our database which will allow faster screening for the study.
Due to the overwhelming response, it will take some time to contact you for any next steps. But you can get the process started by completing the online questionnaire. Thank you in advance for your patience.

Kind regards,"[/quote]
Mitch
Please visit my blog at www.enjoyingtheride.com
User avatar
EnjoyingTheRide
Family Member
 
Posts: 75
Joined: Thu Nov 12, 2009 4:00 pm
Location: Maine

Postby bestadmom » Thu Dec 10, 2009 8:13 pm

Jenf,

I just looked at your scans on youtube and they aren't the mrv. The mrv is of the neck, and you can see the arteries and veins. They are series 3 and 300. I hope you have them and can post them.
User avatar
bestadmom
Family Elder
 
Posts: 722
Joined: Mon May 18, 2009 3:00 pm
Location: CT

Postby jenf » Fri Dec 11, 2009 6:05 am

Hi Bestadmom,
I don't... these are several of the MR's, but none include scans similar to what I've seen online. I didn't think these would be sufficient. I do, however, have a prescription for an MRV from my Neurologist. I will call around today and find out where I can get one done. I'll also make sure to bring the CCSVI protocol with me when I finally get an appointment. Thank you for taking the time out to look at these and to post a response... I've been checking TIMS constantly hoping someone would see something in the scans that I couldn't! I'll keep the group updated in my progress.
Jen
jenf
Family Elder
 
Posts: 106
Joined: Thu Sep 17, 2009 3:00 pm
Location: Albany, NY

Postby Dragonfly » Fri Dec 11, 2009 8:53 am

I finally figured out how to export my MRVs from Buffalo as movies. Perhaps someone would be willing to look and comment. Here is the one without contrast:

w/o contrast

And the one with contrast:

w/ contrast

Any thoughts?

Rebecca
User avatar
Dragonfly
Getting to Know You...
 
Posts: 13
Joined: Wed Sep 30, 2009 3:00 pm

Postby jenf » Fri Dec 11, 2009 9:22 am

Hi Rebecca,
There's no image in your post. I participated in the Buffalo study as well, and the CD they gave me only has my MRI's, with and without contrast. Do your images show your veins? Mine do not... if so, try posting them to You tube. That's how I was able to post mine. Unfortunately, it didn't help, because they were MRI's...
Jen
jenf
Family Elder
 
Posts: 106
Joined: Thu Sep 17, 2009 3:00 pm
Location: Albany, NY

PreviousNext

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