First time~you tube~ "before" and 1 day "after" CCSVI
 

This is amazing. This sweet lady put up her videos of how she walked and moved around before the CCSVI procedure, and then 1 day after the surgery, how she walks and moves now. She is incredible and is willing to answer all your questions.

DENISE MANLEY BEFORE CCSVI LIBERATION SURGERY. THIS VIDEO WAS TAKEN 2 DAYS AGO.

http://www.youtube.com/watch?v=lvwCuPXrKgI


DENISE MANLEY LESS THAN 24 HOURS AFTER CCSVI LIBERATION SURGERY YESTERDAY

http://www.youtube.com/watch?v=KYNhYtVojSQ

Must watch and listen..

Cool, Lady, Thanks. I hope it works like that for a lot of MSers..:hug:

I was impressed enough that I'm asking my doctor and/or my neuro about it the next time I see them.

I'm getting IVSM this week, so I have to follow up with both doctors after that, so I'm seeing what kind of research I can dig up. I dont think my neuro will be bothered to read it, but I'm pretty sure my regular doctor will be interested. (his dad has MS)

I'm not real eager to have someone do any surgery around my neck, but if it helps make my symptoms improve, that would be cool.

I still want to see a lot more successes before I'd have the surgery.

Amazing! I can really relate to that first video. I kept saying "that's how I move"!! I'm so happy for her. :)

I wish I could get more specifics, i.e. where she is and who was her doctor. I am trying to find out more but was unsuccessful.:(

does anyone know what tests she had prior to the procedure?

I have to wonder....is this for real? The results seem just too good to be true, less than 24hrs after a surgery?

I also am a bit of a skeptic.

I want soooo badly for this to be real, but the realist in me says "woah! not so fast!" isnt that awful? I cant celebrate this girl's new freedoms.

I really want this to be the answer. quick, clean, easy, and no real downsides to it. it is just too good to be true. :o

I'm a bit of a non believer about this one. Just not sure.
anyway, to add...

http://www.youtube.com/watch?v=FwR3-...eature=channel

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! :o)....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! :eek: :p

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..:mad:

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. :confused:


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. :hug:
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.

You missed something, you/we can now have the scans & testing done electively by self-referral, this is not for a research study, it's a paid service. The objective is to learn and document whether I'm a candidate for the liberation procedure which I would also pay for out of pocket.

Don't worry, I won't make any rash decisions, I'm slightly methodical and a tad on the systematic side. ;)

Oh, thanks Cindy. I would get it done too. It's only testing. I would really like the procedure to follow the testing. I am trying to find a place that does the whole gizmo. I am willing to travel, but not out of the states though.

I applied for Albany, NY, but didn't get any response. I think the procedure is waiting for the June 24th outcome reports. I know NYC is doing it somewhere.

It's like trying to find a needle in a haystack. As soon as I find a place, I am going. :D

What I want
 

I want you all to go and have the procedure.

I want to find out how it goes from people in this forum. You have credibility for me and if you meet with some success, I will know that CCSV is a viable option for us MSers.

I want testing to go on at Mayo. I keep wondering why the MN and AZ hospitals are not doing any research. Maybe they are, I just do not know really.

I watched the first YouTube videos of that woman. Then I saw her jump. It has been a long time since I was able to simply jump.

I don't care if it lasts a long time. I have just wanted something, if only for a day.

I am watching carefully. If it was in my neighborhood and by a doctor who understood what to do, I would pay money.

I want.

I agree with everything you said, except for your highlighted words. I would go over the deep end, if I had it all back for a day or even a week or month and then went back to the way I was. NOOOOOOOOOOO way!!!

Hey Sal - I still would take a day without symptoms, even if I knew there was only those 24 hours. It would not make me crazy at all, just resigned which is where I am mentally as of this moment.

To walk normally, to jump for joy, to dance goofy. To have a moment without the numb feeling, the spasms in my legs.

Yes, I watched that woman get so excited to jump. It hit me very deeply. It made me sadder than usual.

This week I'm feeling like that woman looked in the first video.

I dont like this feeling at all. I especially dont like it right now because there are houseguests in my house that seem to think that I can control these symptoms. I also dont like it because I dont know if this will ever go away.

I'm going to go do a follow up with my regular doctor about the steroids (neuro had my regular doctor do the Rx-ing of my IVSM because he was going to be out of town and wouldnt be available to help me if there was a problem)

I think when I do the follow up with the regular doctor, I'm going to ask him if I can have an MRI (in the really big giant open machine that one of Omaha's hospitals has...) I want to see if this was a back problem from a chronic back problem, or if it was from the MS, or a combination of the two. (I'm leaning towards it being an MS thing because of how crappy I feel)

But, while I'm in there, I'd like them to look at the veins in my neck. (isnt part of the investigation for the stenosed veins an MRI?)

I might not have the surgery immediately, but I would like to know if there was a problem that I could potentially deal with later.

I just dont like feeling like that woman looked in her first video. I'd like to feel like I did a couple of weeks ago instead. I felt great then.

I know of 2 PPMS male patients who had it done weeks ago, One could not have all veins helped at all, one a "successful" surgery. Neither has seen any gains. PPMS is very different from RR I also think.

I just read this today. Kuwait is giving all their MS patients the CCSVI Liberation Procedure free. Here is the report so far. If they all get improvement or cured that would prove something.

http://ccsviworldwidevictory.com/Kuwait.aspx

I watched a couple other youtube videos on CCSVI. They were from a gal in Melbourne-seemed more reasonable BUT who knows maybe the less than 24hr Denise is for real, too. Certainly want her to be :)
I will ask my neuro to order the scan-hope he will. Then I'll take it from there depending on the outcome. Even traveling to Italy (Dr. Zamboni, if possible) is probably less expensive than SCT out of the country.
Wishing us all well and Happy Mother's Day to all us mothers :D
Linda