If you are interested in CCSVI, best to check out the board on thisisms.com - they have an entire forum dedicated to it. Many have had it so far. They USED to do it at Stanford but stopped and are now gearing up for studies. Not too many places in the States are doing it - but some have been fortunate to find docs willing to take a chance on it (it hasn't been studied and regulated fully yet). Many are going overseas to do it (mostly Poland I believe). People are experiencing great results, though they aren't always long lived (some re-stenose and have to go back again, etc.). Apparently it is great results right out of the starting gate and then it may fizzle a little bit. For those who have done it, many are touting it as excellent.

As for talking to your neuros about it - don't hold your breath. The whole underlying principle behind CCSVI is that it is NOT a neurological issue - and thus neuros don't like it too much (well that and the pesky fact is hasn't been well studied yet! )....You need an IR (interventional radiologist, I believe) on your side.

Anyhow for more specific info, check out the TIMS site...

but be careful - there are some real 'nuts' on there....

Here's a newsletter from the group in Buffalo, they are open for diagnostic testing now and I feel a roadtrip coming on!

http://www.medhelp.org/posts/Multipl...I/show/1166246

Proper name: Buffalo Neuroimaging Analysis Center (BNAC)
Their website:
http://www.bnac.net/

This just in! Email response from BNAC on cost of testing:

"Dear Cindy:

The ccsvi testing program is $4500. Please note that while reports and images are given, no diagnoses or treatment recommendations can be provided. I am away from the office until next week so am not able to send you more information. I have copied my colleague as she can send you the attachment describing the program.

Regards,
Cheryl"


Less than an hour later, from the esteemed colleague:

"Cindy,
Here is a little more about the program. If you have any questions please do not hesitate to ask.

The following is included:

MRI of the brain and neck: This MRI is designed to collected special pictures of your brain and neck. The MRI will last 60-90 minutes.

Doppler ultrasound: A non-invasive test that uses reflected sound waves to evaluate blood as it flows through a blood vessel. It helps doctors evaluate blood flow through the major arteries and veins of the arms, legs, neck and more recently with the new instruments also the flow trough the brain. It can show blocked, reduced or reversed blood flow through the major vessels of the neck and head. This exam will last about 45 minutes.

Clinical visit with a neurologist: You will have a physical examination which will include blood pressure, pulse, and functioning. You will be asked questions regarding your medical history as well as what medication you currently take and have taken in the past. There will also be questions about your MS diagnosis, symptoms, and relapse issues. The tests will evaluate disability associated with MS, leg, arm and cognitive function, and fatigue. The visit will last approximately 60 minutes.

Neuropsychological evaluation: You will complete a group of tests which are designed to assess memory, cognitive functioning, hearing, verbal learning, motor function and mood. This testing takes about 2 hours.

Blood sample: You will be asked to contribute 2 tablespoons of blood for evaluation of specific genetic factors related to higher MS disease susceptibility and severity.

This study has no funding assistance. At this time, there isn’t any health insurance reimbursement for any testing component. You have agreed to pay $4500.00 for the testing and reports.

Thanks,

Christina Brooks
Administrative/Project Coordinator"

Kinda sounds like a clip joint, Cindy???

Silly old broad, I don't think it's quite that seedy!

I've been looking around for the cost of the procedure itself and the average looks to be about $11,000 USD. So, including the tests, for about $20k a trip to Europe might be priceless.

Will ya'll send me five bucks?

Well, yeah, ya Midage hotshot, after you edited your post to add all that other info..

I think it's about like any treatment for MS.....it's success depends on the individual who's receiving it. I think the percentage of people with MS who have the blockage was 56%....I might be wrong.....so this procedure just might help you if you have this blockage.

I wonder if this improvement lasts indefinitely? There hasn't been enough research or followup on people who've had this.....but there really hasn't been enough time elapsed to study it.

Didn't Wheelchair Komakazi have this done? Seems like he wrote about his procedure.


Edit to Add: I found the thread about Marc: http://neurotalk.psychcentral.com/post634252-1.html

Initially, I would love to know if I was even a candidate for CCSVI, i.e. do I have a blockage. The Buffalo study is strictly for this question, I believe.

Marc has a very agressive MS or maybe not MS at all. He may not be the example I would base my decision on.I am watching for both negative and positive examples. Marc would be a negative, sadly.

LDN, Tysabri and all the other medications are all hopeful to help with MS.

I would be willing to take a chance on this. Other than Stanford using stents, the procedure does not seem as risky as when I had my gall bladder removed or even a C-section.

I have always wished for just one day when I felt better than the day before. Does it last? I am not sure I care at this point. The Liberation Procedure just gives me an optimism that I have not really had before now.

On one of the YouTube videos, one woman could jump. How I understood her excitement.

Cindy I think it's great. Wonderful road trip idea.
I just wondered about one thing BNAC mentioned.

http://www.bnac.net/?page_id=517

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.

That makes sense the above.

But if you pay the money is the below true, or did I miss something?

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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Also
http://www.bnac.net/?page_id=534

Is this the new one you will be in, a study and procedure with balloon?

COMING SOON…..

We are excited to announce a new pilot research study conducted by the Departments of Neurology and Neurosurgery to evaluate the safety and effectiveness of intravascular angioplasty for the treatment of venous narrowing in the treatment of Multiple Sclerosis (MS).

Thirty (30) MS patients will go through a two phase study which will include selective Venography followed by a balloon angioplasty procedure. Study testing will include Doppler ultrasound, MRI with MRV, physical and neurological examinations, CT Angiogram (CTA) of the head and neck and CT Perfusion (CTP) of the head.

All of these tests will be performed at baseline (prior to any treatment) and at 1 month after treatment. A subset of these tests will also be performed 3 and 6 months post treatment.