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University neurologists launch multiple sclerosis research study

Published on October 24, 2009 at 1:21 AM · 58 Comments

Neurologists at the University at Buffalo are beginning a research study that could overturn the prevailing wisdom on the cause of multiple sclerosis (MS).

The researchers will test the possibility that the symptoms of MS result from narrowing of the primary veins outside the skull, a condition called "chronic cerebrospinal venous insufficiency," or CCSVI.

CCSVI is a complex vascular condition discovered and described by Paolo Zamboni, M.D., from Italy's University of Ferrara. In the original Italian patients, CCSVI was found to be strongly associated with MS, increasing the risk of developing MS by 43 fold.

This narrowing restricts the normal outflow of blood from the brain, causing alterations in the blood flow patterns within the brain that eventually causes injury to brain tissue and degeneration of neurons.

"If we can prove our hypothesis, that cerebrospinal venous insufficiency is the underlying cause of MS," said Robert Zivadinov, M.D., Ph.D., UB associate professor of neurology, director of the Buffalo Neuroimaging Analysis Center (BNAC) and principal investigator on the study, "it is going to change the face of how we understand MS."

Michael Cain, M.D., professor and dean of the UB School of Medicine and Biomedical Sciences, said a positive outcome from this trial would have enormous implications for the treatment of MS. "Being able to identify those at risk of developing MS before symptoms take their toll could change the lives of millions of persons who now face inevitable lifestyle restrictions."

Margaret Paroski, M.D., executive vice president and chief medical officer of Kaleida Health, parent of Buffalo General Hospital where the BNAC is located, commented: "Will Rogers once said, 'It isn't what we don't know that gives us trouble, it's what we do know that ain't so'. Challenging basic assumptions about diseases has lead to some very important discoveries.

"When I was in medical school, we thought peptic ulcer disease was due to stress. We now know that 80 percent of cases are due to a bacterial infection. Dr. Zivadinov's work may lead to a whole different way of thinking about multiple sclerosis."

The preliminary findings were based on a pilot study at the BNAC headed by Zivadinov, and at the Universities of Ferrara and Bologna, Italy, directed by Zamboni and Fabrizio Salvi, M.D, respectively. The study showed that several abnormalities affecting the predominant pathways that return venous blood from the brain to the heart occurred more frequently in MS patients than in controls.

This research, supported by the Hilarescere Foundation of Italy and the BNAC, was conducted to replicate the findings of the Italian investigators.

"Results of this preliminary study, which involved 16 relapsing-remitting MS patients and eight age-and-sex-matched healthy controls, showed that all the MS patients, but none of the controls, had chronic insufficient blood flow out of the brain," said Zivadinov.

Bianca Weinstock-Guttman, M.D., UB associate professor of neurology and a co-principal investigator on the pilot study, added: "The images from this study were acquired using a method called Doppler ultrasound. The method identified anomalies in the venous blood flow associated with strictures, malformed valves and peculiar webs within the large veins of the neck and brain"

Weinstock-Guttman directs the Baird Multiple Sclerosis Center at the Jacobs Neurological Institute (JNI), UB's Department of Neurology. The JNI and BNAC are located in Buffalo General Hospital of Kaleida Health.

Advanced magnetic resonance imaging scanning (MRI) of the MS study patients conducted at the BNAC also identified distinct areas of iron deposits in the brain, and showed that those deposits may be associated with the location of MS lesions and sites of impaired drainage. The scans also revealed increased brain atrophy and changes in the flow of cerebrospinal fluid in the MS patients.

These results, which form the basis of the current larger investigation, were presented at the 25th Congress of the European Committee for Treatment and Research in Multiple Sclerosis held in September in Dusseldorf, Germany

Comments
  1. Hope Maloney Hope Maloney Canada says:

    Are you still interested in people that might be interested in participating in a study? Please let me know what might be involved.
    Thank you, Hope Maloney

  2. Tynna McChesney Tynna McChesney Canada says:

    Are you still looking for Canadian MS patients to particpate in the study?  I would be interested, who do I need to contact?

    Thank you,
    Tynna McChesney

  3. Debra Hope Debra Hope Canada says:

    My sister is very interested in becoming a patient in your MS study.  She has been recently diagnosed, however, she appears to have had MS for decades according to the neurologist.  If you have any information on how she could participate, please email me at teachcda@telus.net or at work at hope@cotr.bc.ca

    thank you
    Debbie Hope

  4. Don Don Canada says:

    I'm interested in getting tested with Dr. Zamboni's recent discovery with vascular blockage. I was diagnosed with having M.S. when I was 21 years old and I'm now 57 years old.;

    I recently had to stop working due to my M.S. as I had a M.S. episode in March which enabled me. I am doing better but struggle daily with chronic fatigue and weakness.

    Please contact me at the above email address.

    Thanking you in advance.

    Don Gattoni

  5. Al Leduc Al Leduc Canada says:

    I have contacted my neurologist in Edmonton Alberta Canada and was told that this type of MRI or scans can not be done here.  His explanation was that there is not the technology here for this testing.  I would be willing to be involved with testing and undergo this procedure as soon as possible. I was diagnosed with MS in late 2004, but the symtoms started in 1995. I have a specialized oilfield business that is suffering to the point of folding due to the inability to function.  Please send a response to the email above.
    Thank you.

    Al Leduc    

  6. Diana Machek Diana Machek Canada says:

    I am a 44 year old woman who has battled MS for almost 21 years.  I have had it all; the blindness, not able to walk, the exhaustion, the bladder problems, numbness, tygeminal neuritis etc etc etc but worse than that, my 19 year old son was just diagnosed 8 months ago with this horrible disease.  I can tolerate this no longer knowing what he could be facing.
      
    Please if you are still recruiting people from Canada, please consider us both for this amazing revolutionizing finding.  We will go anywhere, anytime to be part of this and have a chance to live a normal life not one that includes stuggles on a daily basis with a lot of pain and uncertainty for our futures.
    Please contact us day or night.  

    Thank you for caring enough to "speak" out for all of us MS sufferers and their families.

  7. kate Errington kate Errington Canada says:

    I am a 62 old woman who was diagnosed with ms 9 years ago, I  have ran the gamut of exhaustion weakness bladder problems etc etc .  I am wondering about the study that is being done at Mc Master university and, how one could enroll in it.  I also suffer from a severe, debilitating  back problem and, if I could eliminate or, lessen just one of these problems my life would become much more easier.

  8. walker walker Canada says:

    Could you please get back to us in regards to how does one get started with the new test they have for MS. (re Dr Zamboni in Italy) And if we could get information on the cost of it. We watched the program on W5 Nov. 21/09 and this has given us hope for all MS patients. Thanking you so much for your reply. M & D Walker

    • Gary Sorenson Gary Sorenson United States says:

      Dr. Zamboni, My wife has had MS for 27 yrs. She can walk somewhat, but needs alote of help. She tahes alote of medication to help her. My question is; how can she have this procedure done in the US? We don't have alote of money, but I will do anything to give my wifes dignity back!

      • Michelle Angelina Badge Michelle Angelina Badge Canada says:

        I would love the opportunity to come to Italy and receive the procedure from you, if we have to leave our Country to get the medical attention we need. I am CCSVI positive tested in Sept 9, 2010 by Dr. Sandy Mcdonald, I was told by his technician that the results would be sent to you, I hope my results reached you safely. My husband diagnosed in 2004 was not tested. I want to help people again, I want to be an inspiration again. I want my dignity back. I was in the health Industry. I have a dream, and it is helping other people get healthy and fit. Please Help me get back to my job my calling.

    • marina  Bruni marina Bruni Canada says:

      I would like to travel to Italy to have these tests  and if possible try this treatment. Please if anyone could help.
      contact me tresses.salon@sympatico.ca

      • maria Clarke maria Clarke Canada says:

        Can anyone please tell me if anyone has contacted  Dr.Zamboni.    I have been searching for help for my brother Jim whom has MS, they have him on the list for the study in buffalo but chances are that they would not call him.......We would go to any measure to get this procedure done for him, taking him to Italy to see Dr. Zamboni would be all prayers answered.....Have you heard aback from the Dr?????? Any info would be a great help.....My prayers and thoughts are with all of you and your search.....

        thank-you
        Maria

        • Rachael Rachael United Kingdom says:

          Hi Marina, Your best bet is to contact Foundatione Hillescare and the team there. A google search will give you all of that information if you just type in contact details for the Poland Dr.s too.

          Facebook's 'CCSVI in Multiple Sclerosis' is a good place to get information...or ThisIsMS, Hope that helps Smile
          Rachael

          • Joy Joy United States says:

            As the U.S. observes "M.S. Awareness Month," I sure do hope that the strong new emphasis on CCSVI research is heard LOUDLY and clearly by Centers here.

            After learning just recently about the potential of these studies, I will NOT sit idly by, attending luncheon 'lectures' sponsored by Big Drug Companies, if the US medical establishment feigns ignorance. The NMSS (US)itself seems reluctant to move forward-- but soon they will have no choice.

            They (NMSS)ASKED for "MS awareness," and by gosh, they're gonna GET it!

            • Ginger  MacQueen Ginger MacQueen Canada says:

              Hey Joy! I too am disgusted with Canadian MS Society and our provincial health care. They are turning their backs on us when it comes to CCSVI. We are getting organized and going to March on May5 on Parliament Hill. We have petititions and tee shirts and info cards, we write letters to TV, radio etc. Just keep yelling and screaming and eventually you wont be ignored any more! Im going for surgery in Poland on March 30. Have you been scanned yet?

              • Joy Joy United States says:

                Hey Ginger, Not only have I not been "scanned yet," I haven't even seen my MS doc in way too long a time. I am a patient of one of the finest MS facilities in the US- the MS Center at Shepherd Spinal Center, Atlanta. HOWEVER, I lost health insurance coverage 3 yrs ago and have struggled to afford just the basic visits and regular meds not to mention premiums for "discounted health plan" that covers nothing much.

                Whew, sorry to digress! But I DO plan to find and see a radiologist and pursue the CCSVI hypothesis, especially since I'm lucky enuf to have RRMS.

                I already wrote you back a note saying: PLEASE report your experience in Poland! How exciting to  have that opportunity!!
                JSJ

    • Naser Naser United States says:

      Dr. Zamboni, my mom has a very severe case of MS, she cannot move her legs and hands whatsoever. She is in a wheelchair, she can only move her neck slightly. She had MS 14 years now. May you please provide me with some contact information so we can visit? Thank you.

      If anyone has any contact to Dr. Zambony, please email me full information on n.alabduljalil@gmail.com this is very important to me.

      Thanks

      • Farshad Farshad Iran says:

        Dear Dr. Zamboni,

        My Brother has had MS more than 15 years. He is 47 years old. At this time, he cannot move her legs and uses wheelchair. We just has learnt about your new MS treatment and are very excited about it.

        It will be highly appreciated if you provide me with some contact information for further action.

        If anyone knows any contact for Dr. Zambony, please email me full information on moja_hedi@hotmail.com. This issue is so much important to me.

        Thanks and Best regards,

        Farshad

  9. Michael L. Hayes Michael L. Hayes United States says:

    I see 2 points in relations to the Liberation treatment.  Number 1 is to proceed immediately with the testing for the veinous restrictions and have any that are found corrected(preferably by angioplasty).  Number 2 would be to apply this information into all MS research that is already in action.  The idea of not restoring restricted blood flow to my brain is not only repulsive but stupid.  Researching this finding with respect to MS is definitely warranted but should not preclude MS patients from seeking relief from their symtoms.

  10. Dr Robert H. Morris Dr Robert H. Morris United States says:

    I am a retired Ob/Gyn, CML survivor, 5-6th Phase 1 patient.  My 41 year old son, Richard Morris has recently been diagnosed with MS. Please let me know how he can be enrolled in your study.  Thank you.  Bob Morris

  11. Diana Machek Diana Machek Canada says:

    Hi, I posted a comment about myself and my son.  We both have MS.  I was diagnosed in 1990 but the neurologists feel I have had it since the age of 15.  My son was just recently diagnosed.  

    I have not had any one try to contact me regarding my post. Well I had one other person but he was in the same boat as myself (which is knowing nothing for hearing what is happening with the clinical trial/research into this.

    If anyone knows who to contact to get further information, please let me know.

    Diana Machek

  12. cyril cook cyril cook Canada says:

    I have m.s and I want to be come a part of multiple sclerosis research study.

  13. Lorena Lorena United States says:

    Italy is really cutting edge with M.S. studies.  This noted study is in addition to what I've been ready about Low Dose Naltrexone, which also appears to be VERY promising for those of us living with M.S.  

    http://www.lowdosenaltrexone.org/ldn_and_ms.htm

  14. Ehsan Ehsan Iran says:

    I'm stuying microbiology. In my M.Sc thesis I had studied some immunomolecular and infectious aspects of MS. Also I designed the first Iranian Multiple sclerosis blood-bank with more than 600 patients sample including DNA-RNA Serum-Plasma-PBMC.
    Now, I want to continue my education in Canada which have highest prevalence of MS. Could you help me?

  15. Lynne Heal Lynne Heal United Kingdom says:

    I am more than prepared to undergo the CCSVI or help be a patient to undergo any treatment like Dr Zamboni has done in Italy .Every operationis a 50/50 chance am prepared to be looked into. I have SPMS and in UK we need many drs and surgeons to help us.

  16. Marko Marko Serbia and Montenegro (Former) says:

    How can I get a contact address of Dr.Zamboni so I scheduled the surgery for his mother?

    mrkpejic@hotmail.com

  17. maggie maggie United States says:

    Please , please I need to contact with Dr.Zamboni. Could you please help me?
    Thank you

    mgenevadds@yahoo.com

    • Tanis Tanis Canada says:

      I want more info about how to become a Patient for the surgery, I think peoples negative comments are ridiculous, because there has been heart surgery for decades and basically this is the same type of tx. They have risks also and poeple do it anyways

      This community doesn't even have a MS society it blows my mind!!So I have to travel 4 hours to Sudbury, Ont. or 6 hours to London, Ont I have small children so I can not afford these trips or take time outta my Life to travel the kids need me..PLEASE HELP I wanna be a test patient PLEASE HELP!!!

      • Jeff Madison Jeff Madison United States says:

        To whom it may concern : I was diagnosed in 1994 with M.S. and have currently undergone 2 stem-cell treatments . My stem cell Doctor recomended I make contact with Dr. Zamboni. Please contact me by E-mail. Thankyou   Jeff Madison

  18. rahul trehan rahul trehan says:

    Could you please forward the email address of the principle investigator of the Buffalo group carrying out the trial and also details of other angioplasters in Europe or India.

  19. etab etab Jordan says:

    Two years ago I had a sudden killing pain just like explosion in my head while I was sleeping that waked me up terrified. Then it goes and turns to be a numbness in the left half of my head, I made MRI and was diagnosed with MS. If doctors need to study my case and apply this theory on my case, I will be glad because I can't afford the cost of the operation. Please contact me.

  20. Ginger  MacQueen Ginger MacQueen Canada says:

    I have had doppler and MRI and have been diagnosed with CCSVI. I am going to Poland and having liberation surgery on March 30. If you have any questions I will do my best to answer them.

    gingermacqueen@shaw.ca

    • Joy Joy United States says:

      Good Luck and God bless. I am certain that a detailed account of your experience will be most welcome, as will be the reported outcome of your procedure. I have enjoyed sharing the Canadian TV pieces on U-Tube which have helped educate people here about the possibilities to treat CCSVI. I wish I was a media specialist, but I'm doing my best since I learned the details. Very best wishes!
      JSJ

    • Barbara Perry Barbara Perry Canada says:

      Ginger,there are many people worldwide who will be rooting for you and anxiously awaiting your results.  I hope you will be able to add a comment soon after your procedure.

      My mother has recently been diagnosed with MS after about five years of being misdiagnosed with having mini strokes.  She has had a MRI that showed many brain lesions.  There was no mentioning of narrowing of veins. I am not familiar with doppler? Does anyone know where doppler testing is done in Canada?

      I applaud your courage!

      Is Buffalo University still looking for MS patients from Canada?

  21. Larry Edwards Larry Edwards United States says:

    The USA has to get with the program and help people with CCSVI.  My sister is in the early stage of MS, if this procedure will help her why can't she choose to have the surgery her in the U.S. then travelling to Poland. It should be her decision not the government's. It is all about money for the drug companys this has to stop.

  22. Larry Edwards Larry Edwards United States says:

    Thank you Joy for the link.  I will contact the local MS chapter and I am writing letters to my congress man and so on. Good luck to you.

  23. maria Clarke maria Clarke Canada says:

    We have just received my brothers MRV and Doppler results. Not the news we wanted to hear as they say that there is no blockage all is normal. This is so frustrating hearing this as we stood behind the Dr. Zamboni findings of MS.    I will not give up, We will take Jim for a second opinion if we have to..  Has anyone gone through this in regards to having the test done and results were normal?   Is there something we should ask these Dr's to examine??  

    Still Hopeful.

    • carol carol Denmark says:

      CCSVI Protocols
      PLEASE print this out for your doctors before you get scans, especially if they are using MRV (magnetic resonance venography) technology without doppler ultrasound. It is ESSENTIAL that the MRVs be done correctly:
      http://www.ms-mri.com/potential.php

      Dr. Haacke radio interview discussing trials and research.

      Read more about Consulting You Doctor about CCSVI at www.multiplesclerosissurgery.com

    • Betty Betty United States says:

      This happened to me too.  Also, to an MS patient I know in Canada.    We both had scans and they told us there were no blockages.  My friend in Canada has been emailing me telling me that we don't know how to do the proper scans here in the U.S. & Canada. She has been talking abut a doctor in Bolivia.  Another MS patient from Canada (male) had the surgery done for CCSVI in Bolivia and we are following his progress.  By the way, we have all had stem cell therapy and we were wondering if that had an effect on the test.  Have you had stem cell therapy?

  24. MARILYN LOURENCO MARILYN LOURENCO Portugal says:

    My name is Marilyn I'm 36 but I was diagnosed at 19.
    Dr. Zamboni has become my savior after all the years of pain and suffering. I'm in Portugal now and would love for you to e-mail me.

  25. Jessica Jessica Canada says:

    After 6 months of offering stem cell therapy in combination with the venous angioplasty liberation procedure, patients of CCSVI Clinic have reported excellent health outcomes. Ms. Kasma Gianopoulos of Athens Greece, who was diagnosed with the Relapsing/Remitting form of MS in 1997 called the combination of treatments a “cure”. “I feel I am completely cured” says Ms. Gianopoulos, “my symptoms have disappeared and I have a recovery of many functions, notably my balance and my muscle strength is all coming (back). Even after six months, I feel like there are good changes happening almost every day. Before, my biggest fear was that the changes wouldn’t (hold). I don’t even worry about having a relapse anymore. I’m looking forward to a normal life with my family. I think I would call that a miracle.”

    Other recent MS patients who have had Autologous Stem Cell Transplantation (ASCT), or stem cell therapy have posted videos and comments on YouTube. www.youtube.com/watch?v=jFQr2eqm3Cg.

The opinions expressed here are the views of the writer and do not necessarily reflect the views and opinions of News-Medical.Net.



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