University neurologists launch multiple sclerosis research study

Published on October 24, 2009 at 1:21 AM · 53 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

The new study will involve 1,600 adults and 100 children. The cohort will be comprised of 1,100 patients who were diagnosed with possible or definite MS, 300 age-and-sex matched normal controls, and 300 patients with other autoimmune and neurodegenerative diseases. Enrollment in the study has begun and will continue for two years. MS patients from across the U.S. are eligible to participate in the study.

"The prevailing wisdom that central nervous system damage in MS is predominantly the result of abnormal immune responses against the patient's nervous tissue has been challenged by research findings, which have demonstrated a significant neurodegenerative component in MS and the progressive loss of neurons" said Zivadinov.

However, these inflammatory and neurodegenerative processes occur concurrently in MS and vary considerably among patients, making it difficult to identify the cause, or causes of the disease. Consequently, the origin and development of MS remains poorly understood, and its cause remains elusive."

To determine if these preliminary findings can be repeated, Zivadinov and Weinstock-Guttman organized the present study, which will evaluate both the velocity of blood flow through both the brain's blood vessels and the extracranial veins, using Doppler ultrasound.

The technical name of the study is "combined transcranial and extracranial venous Doppler (CTEVD) evaluation in MS and related diseases".

All study subjects will undergo a general clinical examination and a Doppler scan of the head and neck to acquire images of the direction of venous blood flow in different body postures. Participants also will provide blood samples, and complete an extensive environmental questionnaire to identify potential MS risk factors.

All MS patients will undergo MRI of the brain to measure iron deposits in lesions and surrounding areas of the brain using a method called susceptibility-weighted imaging. Iron findings on these images will be related to neuropsychological symptoms. The neuropsychological part of the study will be conducted by Ralph Benedict, Ph.D., professor of neurology and psychiatry at the JNI, UB's Department of Neurology.

A sub-cohort of 250 consecutive patients and controls will undergo MRI of the veins of the neck to confirm diagnosis of CCSVI.

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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

    • Chantal Carriere Chantal Carriere Canada says:

      My brother has ms. Would like to know how Much it Would cost for the treatment in italy or any that Would be able to help us with this matter. Chantal Carriere

      Chantaloconoraco@live.com

  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!

    • 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

    • 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

  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!!!

  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.

  26. richard richard United Kingdom says:

    What's the cost? and is it painful?

  27. Lise Bélanger Lise Bélanger Canada says:

    My brother in law has had MS for 27 years, he would like to know if the technique of Dr. Zambony will help him or if it's to late.  He is not in a wheelchair yet.  Is it possible also to receive information regarding that intervention.

    Thank you very much,

    Lise

  28. Erin King Erin King Australia says:

    Hi I saw your report last night on Sunday Night in Perth WA can you please let me know more about it and how I could get to try it please. I am a 44 year old women with 3 children and was told just over 2 years ago that I have MS and I am getting worse every day I would like to try your treatment. Please Help  

  29. shima shima Iran says:

    Dear Dr. Zamboni,

    My sister has had MS more than 4 years.She  is 35 years old. At this time, she hasnt stabilise. she walks hardly, she is thin. 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 berjis2033@yahoo.com. This issue is so much important to me.

    Thanks and Best regards,

    shima

  30. Ole Falch-Schmidt Ole Falch-Schmidt Denmark says:

    Dear Mr Zamboni
    My wife have got the diagnostic Azlheimers desises but she has a tested low blod circulation in the left side of her head according to the spect scanning do you think that you can do anything for us ???

  31. aiesha aiesha Australia says:

    I would like the contact details for Dr. Zamboni in Italy as I am interested in doing the ccsvi there. I have had MS for 4 yrs and I am desperate to do this as in Australia they do not support this procedure and the doctors that do have a totally different procedure

  32. Rebecca Nieto Rebecca Nieto United Kingdom says:

    Dr Zamboni,

    My friend has MS. She has had it since she was 16 she is now 30. She would be willing to under go treatment and travel anywhere required. Please help us, nobody seems the able to in this country and we feel really quite desperate
    O
    Kindly tell us what to do next

    Thanks so much - I anxiously await your response

    Rebecca

  33. Scott Scott Canada says:

    My wife has relapsing remitting ms and has had it for 14 years without any symptoms(THANK GOD).  Just her initial one.  She has to go for her next MRI in a month and have it compared with her scan a year ago to see if there has been any change.  She has been off her betaseron injections for 6 years, and now, without any evidence or proof, they want her back on her medication.  We have also recently talked with a man from my work who is now on permanent disability because of ms.  His ms is more aggressive and he is on a medication that consists of 1 shot a month that costs $6000-$7000, and has very severe side effects (brain cancer), which they have recently scanned and found in his brain.  I would like any help anyone could spare for info about the new procedures out their and get atleast our friend some choices that could get him off his drugs that are killing him

  34. Sue Barnett Sue Barnett United Kingdom says:

    My daughter has recently been diagonosed with Spinal Demntination, cervical and transverse myleitin and Spectrum MS.  She is 28 years of age and has been told by Drs here that her condition is progressive and there is nothing they can do but give her pain relief.  Since having a lumbar puncture  (which was attempted 3 times) she  rapidly deterioated.  Please can you help or point me in the right direction.  Many thanks.

  35. hora entezari hora entezari Iran says:

    I suffer from ms for 11 years how can l contact dr. Zamboni
    please reply at your urgent.

  36. sara sara Canada says:

    Dear Dr. Zamboni,
    My sister had an attack on her left eye , doctors said that it was an Optic Norotic which can be a sign on M.S and after they did an MRI and they said that she had to start medicine , right now it is been about 3 month that she has started injecting AVONEX once a week until this moment she had not any problem .
    I would like to know do you really think that this medicine can help and prevent future attack?
    What can we do in order to prevent any possible attack?
    I really appreciate if you can do me a favor and give me some useful information.
    Thank a lot .
    Best,
    Sara

  37. mohammad zarghami mohammad zarghami Iran says:

    How to visit prof.zamboni?

  38. a.sedighi a.sedighi Iran says:

    Dear Mr Dr.Zamboni
    I saw your method in internet and got interested in your method and hopeful for being cured.
    I am a 37 year-old woman, married and have a 7 year-old son. It's been about 4 years that I suffering from MS. Now I using Rebif.
    I would really appreciated if you could write me how I com take this method and where should I come, How much does it cost and more details.
    Sincerely yours,
    azam sedighi  

  39. Mahboobeh Khaleghian Mahboobeh Khaleghian United States says:

    Dear Dr. Zamboni

    My sister is diagnosed with  Pemphigus. We need your help to cure her completely.We are ready to pay all the expenses to cure her.Please give me your full contact info so we can arrange her diagnoses and start her treatment as soon as possible.

    Regards,

    Mahboobeh Khaleghian
    mahboobeh.khaleghian@yahoo.com

  40. Jenny Lewis Jenny Lewis United States says:

    Dr. Zamboni please I am a desperate mother of 4 with MS and need your help to try and sustain some quality of life, I believe in your procedure and would travel to Italy from the US, please let me know how to contact you and your dedication to this debilitating disease is greatly appreciated,.!  jslewis2007@yahoo.com

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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