CTEVD Study at Buffalo Neuroimaging Center (CCSVI related)

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CTEVD Study at Buffalo Neuroimaging Center (CCSVI related)

Postby jenf » Thu Oct 01, 2009 6:20 am

I just stumbled on this active trial in Buffalo yesterday and immediately looked into it. It's designed to evaluate blood flood in MS patients, healthy controls, and controls with other neurological disorders.The acronym stands for "Combined Transcranial and Extracranial Venous Doppler evaluation in multiple sclerosis and related diseases (CTEVD study)". Has anyone else signed up for this? I contacted them yesterday and am awaiting my phone interview. Very exciting news!!!

So now, I have a prescription for an MRV, and a potential spot in a clinical trial to help validate this theory. I don't know what to do with myself! I feel like all the stars are aligned and things are falling into place. Isn't that called kismet or something? In either event, I am soooo thankful to have found out about the CCSVI theory.

I saw a Neurologist who attended the conference in Bologna to get feedback from her. She thinks the theory is worth exploring, but believes more studies need to be done. Since I am still healthy (for all practical purposes), I thought participating in this trial would be my way of "paying it forward" to other MS sufferers. I have been blessed with immense support around me and have thus far, guided my own treatment plan.

I will keep this group updated on what happens.
Jen
RRMS - dx 06/09
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Postby mrhodes40 » Thu Oct 01, 2009 11:43 am

Oh wow that sounds promising Jen!! How cool that they are doing a transcranial doppler test.

I agree this needs more studies, but am really glad you are going to participate in advancing the work.

Recognize it is possible for an MRV to not show the stenosis though... is the person doing that in contact with Dr Dake?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby bestadmom » Thu Oct 01, 2009 11:49 am

Jen,

There are several threads about this on here and a few people on TIMS have participated. Search on Jacobs Neurological or JNI for more info.

Dr. Dake is not involved in this. It is to support or refute Zamboni's findings.
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Postby mrhodes40 » Thu Oct 01, 2009 11:53 am

:oops: I didn't pick up on the fact it was JNI again....

but the MRV is what I was asking about in relation to Dr Dake being involved....
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
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Postby cheerleader » Thu Oct 01, 2009 12:09 pm

Hey Marie-
Dr. Zivadinov (Buffalo Neuroimaging Analysis Center) from Jacobs was very proud to announce in Bologna that Jacobs is doing the Zamboni doppler protocol (as taught by Erica) + MRV. The best of both worlds. He made a competitive comment to Dr. Dake when he saw Dr. Dake's presentation showing MRV technology and the importance of 4 D imaging..."we'll have to get our paper published before you!" Zivadinov stressed that it was important to see the veins in 4D as well as study flow. I think Jacobs has got the protocol down.
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Postby jenf » Thu Oct 01, 2009 1:03 pm

Hi Cheer,
So then, do you think this is a good study to participate in? I'm in NY (although several hours from Buffalo). As I mentioned in earlier posts, i did get the script for the MRV, but don't really know what to do with it (short of getting one done). I'm concerned that if i do in fact have CCSVI, it may be overlooked by doctors who aren't trained in what to look for. I'm also not in a dire hurry to get anything done. I feel great overall, and I credit that primarily to LDN. That said, when I learned of this study, I thought it was a great way to approach this issue; get a definite "yes or no" in the process; and potentially be part of the research that may prove to be invaluable for MS'ers worldwide. I'm still waiting for them to call and do the medical screening over the phone.
Jen
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Postby cheerleader » Thu Oct 01, 2009 1:21 pm

jenf wrote:Hi Cheer,
So then, do you think this is a good study to participate in? I'm in NY (although several hours from Buffalo). As I mentioned in earlier posts, i did get the script for the MRV, but don't really know what to do with it (short of getting one done). I'm concerned that if i do in fact have CCSVI, it may be overlooked by doctors who aren't trained in what to look for. I'm also not in a dire hurry to get anything done. I feel great overall, and I credit that primarily to LDN. That said, when I learned of this study, I thought it was a great way to approach this issue; get a definite "yes or no" in the process; and potentially be part of the research that may prove to be invaluable for MS'ers worldwide. I'm still waiting for them to call and do the medical screening over the phone.
Jen
RRMS - dx 06/09


I would suggest you speak to the folks at Jacobs when they call, and ask for their advice as to the MRV. Perhaps Dr. Zivadinov can help you find an MRV technician in your area, or he may suggest you have it done at Jaocbs while you are there. They know what to look for! I think making the long trek to Buffalo is a good thing to do (I went to college in Rochester, so I know it's about a 7 hour drive from NYC...) It's good for MS research and potentially good for you. Glad you have such great support!
cheer
Last edited by cheerleader on Thu Oct 01, 2009 3:19 pm, edited 1 time in total.
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dx dual jugular vein stenosis (CCSVI) 4/09
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Postby Dragonfly » Thu Oct 01, 2009 2:33 pm

I will be participating in the CTEVD study while I'm home in Buffalo for Thanksgiving (currently live in Charleston, SC). This study covers an MRI AND MRV, as well as the dopplers. It even includes what the person I spoke with calls a "mini-neuro exam." My mother is participating with me as a control.

Based on the results, if they find any abnormalities, I will go ahead and see Dr. Dake for an evaluation. I submitted all of my history/MRI/insurance information to Alex earlier this week. If they don't see anything, I don't need to waste Dr. Dake's or my time.

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Postby patientx » Thu Oct 01, 2009 3:04 pm

Jen and Rebecca:

You may want to speak with the study coordinators, to make sure they will give you the results of your doppler tests. I think it's worthwhile to participate, regardless, but if you're looking to leave with a copy of the results, and they keep them confidential, you may be disappointed.
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Postby Dragonfly » Thu Oct 01, 2009 4:04 pm

I did ask if I would receive the results, and I know I was told I would receive the reports of the MRI/MRV in the mail. Apparently, radiology is a little overwhelmed and it takes some time to read the scans. I know we will not be given the actual scans, but I was told we would be given reports. I did not specifically ask about the doppler scans, I will look into that further. I'm not looking for anything other than confirmation/repudiation that I have abnormal veins.

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Postby Sharon » Thu Oct 01, 2009 4:31 pm

Rebecca - give Buffalo a follow-up call just to make sure about the records. Early on in July when I was checking the study out, I was first told that the reports and the images would be given out if requested. On a follow-up phone call they said they would not be reporting back to the participants in any way - no images, no reports. They could have changed their study protocol since July, --you need to make sure you are asking the right question.

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Postby Lyon » Thu Oct 01, 2009 8:18 pm

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Postby jenf » Fri Oct 02, 2009 4:17 am

Good point Patientx!! I hadn't even considered that as a possibility... I have a script for an MRV, so I guess I'll do that as a first step. Next, I'll volunteer for the study, if I'm not already on a plane to see Dr. Dake!! I've just got to figure out where to get the procedure done as I understand that this condition can be overlooked by an untrained Radiologist. Unless I can just send the MRV results to Dr. Dake for his own evaluation? Does anyone know if this is possible??
Jen
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Postby Dragonfly » Fri Oct 02, 2009 5:59 am

According to Christina at the Buffalo Neuroimaging Analysis Center (part of Jacobs), who is my contact person for the study, participants receive MRI and doppler reports in the mail, approximately 8 weeks after participation. They do not send MRV reports, so I was wrong about that. But since they are sending doppler results, that seems to be a good enough start to help me decide whether I should pursue this with Dr. Dake or not. Thoughts?

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Postby patientx » Fri Oct 02, 2009 6:51 am

Rebecca:

It sounds like you got info right from the source, so that should be good enough to make a decision. But I got the impression that the BNAC study consisted of only Doppler scans, without the MRV. And, checking their website, they do not mention anything about MRVs.

Jen:

I am far from the expert here, but if you are going to get the MRV on your own, you may want to check with Dr. Dake beforehand. I believe with MRIs (and MRVs), much depends on how the tests are set up; what sequences are used, what slices are taken, etc. I think what you see depends on the protocol, in addition to the skill of the radiologist. So, you might want to see if Dr. Dake will recommend a specific protocol. Others here have done this.
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