I just thought maybe I would summarize what I know about the current and upcoming trials related to CCSVI and MS in case people are interested.
There are two current studies looking to confirm and find out more info about the possible correlation between MS and CCSVI. I think both have been swamped with interest, but at least it's good to know about them.
University of Buffalo Combined Transcranial and Extracranial Venous Doppler (CTEVD) Evaluation in MS and related Diseases ("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)." I think they are doing both MRI and Doppler, but the participants don't get the results.)
MRI CCSVI Pilot Study with MRA and SWI (multi-site study to look at correlation between MS, CCSVI, and iron deposits in the brain as seen by SWI MRI)
Here are a couple links with more info on Dr. Dake’s upcoming clinical trial with stents for CCSVI at Stanford (which he hopes to start early next year; however, I also read that he’s already had something like 700+ emails from Canadians who want to sign up):
* http://www.thisisms.com/ftopic-9176-105.html (post about halfway down starting with “Reporting as one of the few who were 'turned away at the gate'...”)
The MS Society of Canada has put out a request for research operating grant proposals related to CCSVI and MS at http://www.mssociety.ca/en/releases/nr_20091123.htm so it will be interesting to see what comes of this. It looks like the winner(s) will be announced in June 2010 and grants will start in July.
Also, there’s a balanced overview of the research on MS and CCSVI on the MSAA site at: http://msassociation.org/news_center/article.asp?a=ccsvi
PS I am still doing well, but am sort of inclined to give it a little more time before reporting much more.
When will you go back to make sure that the vein is still open? Of course, I hope it stays open, but like you said, there can be a failure rate.
I was sent the application for the Buffalo study and should be notified within 4 weeks or so, whether I will be accepted for the study. Of course, with this study, no corrective procedure will be done, if the stenosis is found.
I already know that I have a twisting in one of my jugular veins, from Doppler Studies a long time ago, for Migraines. I do not know if the "birth defect" as I was told, can be helped with the balloon. I would think if its twisted only a stent could straighten that out. That worries me, as I do not want a stent.
I hope that you will share more with us soon, about how you are feeling and any follow up appointments you will have.
I'm praying so hard, that this is the answer to the "MS mystery," Sho. You are our Forum Pioneer Woman.
Big Hugs and still praying for you, dearheart,
I had been working on a very simple explanation of CCVSI and the resources to learn more. This appears to be a good place to add this information.
The websites listed below are by general categories for your reference. These compliment what Sho has posted above.
DR ZAMBONI AND HIS RESEARCH
Dr. Zamboni’s published research
Fondazion Hilarescere –the organization he works for
This is the story that broke this idea wide open
POSITION STATEMENTS FROM MS ORGANIZATIONS
National Multiple Sclerosis Society – US
National Multiple Sclerosis Society – Canada
Multiple Sclerosis Society – UK
Myelin Repair Foundation –
PATIENT/CAREGIVER BASED WEBSITES DEVOTED TO CCSVI
Venous Multiple Sclerosis
CCSVI in Multiple Sclerosis
CCSVI STUDIES AND TRIALS
Studies are being done or proposed in Australia, Poland, Ireland, Canada, Italy and the United States – there will probably be more added later. Here are the links for two of these studies.
I just read the entire report from the MS Association website - it is well written, clear langugage, and outlines pertinent ideas. I would highly recommend everyone take the time to read this information.
Heather: That's fascinating that you already know that you have a twisted jugular vein. It seems unlikely to be coincidence. I have no idea if that could be fixed with a balloon or not. I hope you get into the Buffalo study.
I don't have to go back to Stanford. Apparently, if I get better and then start getting worse, that probably means that the veins have closed up again, but otherwise there is no follow-up visit. Of course, I've made myself paranoid worrying about restenosis, but I'm also glad not to have to deal with the stents.
I am going to do an update soon, but I had a very long day yesterday. We didn't get home until 10:30 (and I was actually functional at work today, even during an important meeting!) Plus, my ancient computer seems to be dying and it keeps going into slow motion every time I try to do anything.
> I think they are doing both MRI and Doppler, but the participants don't get the results.
That's right - with the CTEVD study in Buffalo, the patients will get the MRI, but not the doppler or the MRV. This is disappointing - I thought maybe I would be able to see the results of the doppler and take them back to my doctor, but without the results, there's no real point in doing it.
I'll check out the other study and see if it's any different. I'm willing to travel if it means test results, even if they aren't going to do any stenting or angioplasty.
I'm working on an update, but brevity is not usually one of my virtues. In the meantime, I just wanted to point out a couple things.
There is a video of a patient info session on CCSVI that was done by the MS clinic at Health Sciences Centre Winnipeg at:
On the whole, it's well done and the background info, in particular, I think is useful.
Also, the latest contact info for the upcoming Stanford trial is at http://www.thisisms.com/ftopict-9589.html. I think they are still pretty overwhelmed, but since it doesn't seem to be known how they are going to select the patients, it might be worth getting on their list if you're interested.
PS I will just say that I drove today for the first time since Labor Day weekend (and I shouldn't've driven then). I didn't go very far (parking lot and neighborhood streets), but my leg/knee didn't lock up when I tried to brake. I am still getting some tension in my thigh, but I think I'll be okay for a little driving around town (which is all I've done for a long time anyway).
I was very intriqued by this study. I am a nurse and about 2 years before I was diagnosed with MS, I was working in radiology. One day a rep. from an ultra sound company came in to demonstrate a new ultra sound machine. I was asked to be the pretend pt. for demonstration of the machine. While the rep. was checking the arteries and veins in my neck she mentioned that the blood in the vein was actually flowing backwards. I later asked one of the radiologists if this was something that I should be concerned about. He felt that as long as I wasn't having and problems, it was nothing to worry about. I completely forgot about it until I read the article in MS Focus. I inquired about the study and was disappointed at how much it would cost and that there wouldn't be any intervention or procedure done. I see my MS doctor in June. Hopefully there will be more information on CCSVI by then. My personal feeling is that there are many different causes for MS that would require more individualized treatments depending on the cause.
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