Results from CCSVI trial in Buffalo

Hmmmm, maybe if MS was contageous things would progress faster in trying to help us all! It really bites to have to beg for help for 26 freaking years. I hate using a wheelchair and being below and looked down upon! By the Grace of God we will conguer!

1000 people worldwide have had this simple procedure done since Nov. with positive results!!

TRANSLATION -280/500 = 56% HAVE MS = 100% HAVE CONSTRICTED VEINS!!!!

I AM NO SCIENTIST BUT I CAN DO MATH!!!!!

First off I have never complained about having MS, but have been so thankful for all I have learned and taught others through the years! I've had MS since I was 17 years old! Now 26 years later being 43 I do deserve a chance to walk/run, ride a bike, stand for more than a minute, to write, etc! I am still fighting & struggling every day to live my life as best I can. But I am so tired and weak. I wonder a lot of times is suicide the answer to freedom? Holy cow! Tell me please will I have a chance for liberation? I would give anything to dance with my husband to be!! Luv u all! God bless.

The stupidest thing I have ever heard. Let's study this possible miracle cure, but first we will use low tech diagnostic tools. If we fail at proving this to not work based on that, then we will be forced to actually move forward and do some real test with advanced diagnostic tools that can actually tell compared to what they were using. What kind of lunacy is that? Why would they not first use the best technology available to them unless they want to move as slow as possible.

You need to do your research man, what have you got to back up a wild statement like you have just made????

Does medicare pay for this treatment. If I was to come to Buffalo could I have this treatment done? I had a sonagram and we could see the narrowing, but my heart Dr. wouldn't do te procedure.

I am a 45 year old woman with MS. I have been suffering for 14 years. In the begining Dr R. Bell in Calgary Alberta was hopeful for me. Then a couple years in he put me on copaxone. That was a mistake! Not only did I get worst but my injection sites collapsed. Six years of that junk left me used and abused. My last visit with him he told me I was on a slippery slope and I should just go home and smoke some dope. Thirty years in the MS field and thats the best he has for me. Screw you Bell! One would think if he has no answers for me he would be jumping for joy at the prospect of The Liberation treatment helping me. Oh I guess I asnswered myself, he can still jump. Maybe DR. R Bell should sit his butt in a wheelchair for acouple of days and then he might get on board with the Liberation Treatment. I am now living in Ontario and have found the same opposition and useless advice. All these so called MS specialists are a very sick group and I pray every day they will answer for themselves in Hell.

I have been reading and watching and talking and advocating since Dr. Zamboni's discovery was announced last year to get Canada moving on testing us MS patients for CCSVI screening with no success. My neurologist is the head guy at a large hospital in the capital of Canada and does not believe, he has also spent years doing other research and spending donated monies for the last 25 years with no success. I was 46 when I was diagnosed which in itself is unusual. I have hit a road block as I take my injections and watch my body deteriorate daily. Reading all the stories about others getting liberated in other countries is just down right depressing. I am happy for them but the average person does not have the money to travel to Poland or wherever to get treated. We must get this moving in Canada so poor people like me can be treated equally with the richer people. Just like I have always said all it takes is money and not everyone has that luxury. I feel that the lower income people of Canada are being discrimanted against getting proper health care.

We are in the same boat. Would love to be able to afford to go to Poland. We also Dr. with a neurologist in Edmonton (Dr. Warren). My husband was 45 when he was diagnosed with PPMS and 7 years later is dealing with many proplems.

I have secondary progressive MS with PPMS first diagnosed in 1992. It has been a slow decline and now I have constant headache and vertigo. Ringing in the ears and weakness on my right side. I can still walk with a cane but I fall much more lately. The world is fuzzy and I am not a happy camper. Over the years I have discounted many of the theories about MS and did not allow myself to take encouragement from any of them. Bur CCSVI is different. To me it fits with everything I have read about the disease. If MS is caused by restricted blood flow plus say two other characteristics ocurring in the same person and fixing the blood flow fixes the problem....why do we care what the other characteristics are? Lets accept the cure and move on with our lives. I go to Sofia Bulgaria on June 1, 2010 for liberation. I had an MRV at Westmount in Montreal last week and both of my jugulars look like twisted garden hoses. $20 billion a year is a hefty reason for the drug companies to work against a cure and physicians who have travelled to countless medical "conferences" on sunny golf courses paid for by drug companies may be caught in the middle.

Michael Duffy

Please let us know how your liberation treatment went. Do you see any improvement?

Lisette Bradshaw

Michael, my Mom has PPMS and we are desperately looking for feedback from anyone who has had CCSVI done. Could you PLEASE let us know?

I have a young friend who went to Poland this summer who had the procedure done and with great success........34 year old young single mom.......she was having difficulty walking..........now she is on the mend........for the first time she can actually dress herself while standing! I encourage anyone with the opportunity to get this procedure done.......Go ahead with it full force........even its not proven statistically how long it will last.........better to have a few good productive years than sit in a wheel chair or worse while waiting........for stats........

Hi Michael, I am wandering how your liberation went, what they found, was the Azygos also involved and what your improvements so far have been?......cheers Alexander from Sydney Australia

hi, my gf brother has very serious MS, he cant walk...we are looking for someone who can perform this jugular stenting, and from your post i realise that you gonna do it in Bulgaria, since i live in serbia, its near by, could you please send me contact of the clinics in sofia on my e mail: ivkojic@yahoo.com , i would highly appreciate it

Patrick,
Please let us know if you had any success with your doctor. My daughters neurologist will not even consider CCSVI and her GP will not refer her to an IR or vascular surgeon because this is considered experimental medicine. Luckily she has been watching her diet since she was diagnosed and for the last year has been taking mega doses of vitamin D (5,000 IU daily--can get it at Wal-Mart)and is doing better this year than last. She very much wants to be tested for CCSVI and is considering going to Scotland.
Ted,
I hope you can find a local doctor who will help you both. In the meantime if you aren't taking lots of Vitamin D, I hope you will.

I, as a m.s. patient have been asked for the last 17 years by my neuro's, " touch your chin to your chest, do you feel pain in your neck?" Well tomarrow a.m. I'm gona have severe neck pain and go to the MD and request an MRV of the neck to rule out CCSVI!And while your at it doc,throw in a SWI to see if I have a build up of iron deposits around the veins! Hey Doc, do a dopular ultrasound to seee if I have a narrowing/twisting or outright blockage! BAM! That should be enough medical evidence to rush anybody who has a confirmed dx of MS into surgery! Thank you MD Zamboni! I have real hope in my heart for the first time in ages!

I, as a m.s. patient have been asked for the last 17 years by my neuro's, " touch your chin to your chest, do you feel pain in your neck?" Well tomarrow a.m. I'm gona have severe neck pain and go to MD and request an MRV of the neck to rule out CCSVI!And while your at it doc,throw in a SWI to see if I have a build up of irion deposits around the veins! Hey Doc, make yourself look like a big genious and do a dopular ultrasound to seee if I have a narrowing/twisting or outright blockage! BAM! That should be enough medical evidence to rush anybody who has a confirmed dx of MS into surgery! Thank you MD Zamboni! I have real hope in my heart for the first time in ages!

Dr. Zamboni has said he is AGAINST using stents and only uses the balloon angioplasty. Stents are dangerous and much more invasive surgically, plus the doctors using them for CCSVI make lots more money.

My mother died of primary progressive ms.
I also have ppms. My fiannce has gallopping secondary ms, and she is losing her cognitive abilities at an alarming rate. She is a very sweet and friendly individual and I love her endlessly.
I have never begged for anything in my life. However, having to live on a disability pension leaves us with no money for travel or private hospital fees. I am begging now for her to have this new investigation and procedure, before we lose her to this hellish disease. PLEASE someone help us!!!

My brother has PPMS. We, as a family were looking at ways to raise funds here in Manitoba. We were planning a raffle, but can't get a licence from our government as you need to be a charitable organization or a non profit organization. Does anyone know if there is a CCSVI charitable organization set up that people could go through to legally raise funds. I only find one that you can do donations to, but, the funds are only used for research not to help people travel for treatment.

I have relapsing remitting MS with fairly minimal physical disability. My biggest complaint is energy. I have less and less. I tried Avonex when I was first diagnosed, I would rather be dead than feel like I did for the 9 months I was able to tolerate the medication. I am very frustrated by the response of the medical establishment. They seem to really be dragging their heals. They want to study and test with control groups etc. Wait! Wait! Wait! It will probably be 10 years before the medical establishment can figure out if this treatment works to their satisfaction while people get sicker and disabilities increase Meanwhile they keep pushing these drugs that as far as I can see don't work at all or if they do it's minimal. For me, the side effects where unbearable. I would like to at least be able to explore if I indeed have CCSVI. If the Liberation procedure would relieve some of the problems I suffer, I would be delighted. I don't understand why they can't begin testing for CCSVI and develop a protocol to assess MS sufferers before and after the procedure. I know these researchers get a great deal of their funding from drug companies. When I was taking Avonex, it cost $!,000.00/mo. I was supposed to have to take for the rest of my life. I suspect the medical community would like MS to be an autoimmune disease that required these expensive drugs for life. The liberation procedure provides the first glimmer of hope to feel better since I was diagnosed. It seems my only option is to try to find the $10,000.00 and go to Poland as a medical tourist. This is sad!

I understand that jacobs neuro in buffalo is only accepting 30 people from the first study to try out stents in the constricted veins.and they would be studied for a good year before anyone else would receive a procedure. from that first study those 500 people . I asked why stents and not just the balloon procedure and they said some veins re-constricted ??? I dont agree with this --it would be faster to let everyone go to a vascular surgeon-get the balloon procedure and when I see the ms doctor they can study me then.this is a sign of dragging it out.trying to figure out how to make more money and the hell with my health.If the vein re-constricts then do it again or the stent. not everybody is going to have that happen.and why do I not have a say on my own body to have a simple procedure (several hours in a hospital)because it is a study but I know I have the constricted inner juglar.it has to be opened up more so the toxic iron on MS peoples brains flushes this iron causes the neuro problems its toxic levels,they already know about the veins and the iron so I have to sit here and stay sick until they find another excuse to prolong this.

HOW CAN I GET MY WIFE INTO THESE TEST IN BUFFALO

I currently have MS, after the treatment what would happen to the lesions that are currently on the brain or spinal cord and neck?
thank you for the quick resonse...Marie

Here is a link to the Canadian Press article that mentions the 80% figure for people with MS.

http://www.google.com/hostednews/canadianpress/article/ALeqM5h9fFcp3BUaMrK7YnuZlWEAgfVkvw

Don't forget that in a Canadian Press article by a reporter who interviewed Dr. Zivadinov of BNAC, she states that the 62% figure included people with CIS (clinically isolated syndrome) who have not yet been diagnosed with MS. Typically only a portion of people with CIS go on to develop MS. When the CIS people were excluded from the results, then 80% of people with MS in the study were found to have Stenosed Veins (CCSVI).

Why this figure was not included in the press release from BNAC I do not know, but I did write to the author of the Canadian Press article and she confirmed that she got the 80% figure directly from Dr. Zivadinov who conducted the BNAC study.

This figure is much closer to Dr. Zamboni's findings, and remember that it appears the BNAC study only used doppler, not MRV to test the veins, where as Dr. Zamboni's study used both. There have been several people who tested negative from Doppler who were later found to have CCSVI that was visible on MRV (a type of MRI that looks at veins).

I also read somewhere that many of the healthy controls in the study were relatives of people with MS, so if CCSVI is all or partly genetic, then that could explain finding it in relatives of people with MS.

I personally feel much more hopeful based on all this information. I look forward to the release of the study results in April.

I am not a health care professional, just a person with MS, what I write is not intended as medical advice.

In your article synopsis you state that 26% of patients in the study without MS were also found to have the condition. Are you certain that info is correct? Where does the Buffalo article state that?

Third paragraph in the article states:

When the 10.2 percent of subjects in which results were border line were excluded, the percentage of affected MS patients rose to 62.5 percent, preliminary results show, compared to 25.9 percent of healthy controls.

So I rounded 25.9 to 26%

Although I just noticed they mention in a later paragraph the number to be 22.4%

The finding that 22.4 percent of healthy controls also met two CCSVI criteria requires continuing investigation, he says.

Also I recall something about investigating the healthy subjects who tested positive. But I can't seem to find it right now.

don't confuse the issue just get me a fix!!!!!!!!!!