Clinical Trial to be Started in Albany NY

Dr Mehta of the Vascular Group will be starting a new clinical trial for CCSVI in the next few months. Currently he is hard at work writing the protocol that he will follow for the trial. The planning and preparations for the trial is expected to take at least a month or two at this point so nothing is to be expected before the start of March. The testing and treatment is expected to follow closely with Dr Zamboni’s procedure.

Although, undecided at the moment they may be offering the procedure to those that cannot participate in the trial. The cost for the treatment has not yet been established.

With planning still under way and no information has been established regarding the full treatment plan they are currently making a potential patient list. Those selected will most likely be contacted sometime in March 2010.

Required information:

  • Name
  • Date of Birth
  • Address
  • phone number
  • Email
  • A brief history of any CCSVI Diagnostics or testing already done (if any)

Note: Lack of testing does not exclude someone from evaluation.

To be considered for this trial you can email: wilcoxm@albanyvascular.com

You can also choose to use the form I have provided by click on:
Sign up form

The Vascular Group website:
http://www.albanyvascular.com

Share and Enjoy:
  • Digg
  • del.icio.us
  • Facebook
  • Twitter
  • StumbleUpon
  • email
  • Print
  • Jenny
    I called 2 weeks ago and was told that I'd get feedback last week. I didn't. My name, number, type of MS, tests done and doctors name was asked.

    Name: Genevieve Laliberte
    [ personal information removed by admin ]
    MS Type: Secondary progressive
    I had an unconclusive doppler done by very sceptical and uncooperative people who don't want to believe this could help.

    Thank you
  • lori
    It will be a good day when this is available to all!!!
  • Nancy
    Have ms for 13 years i am curently on Avonex using cane to walk for balance,i called left message got a call back gave my name and adress someone else was supposed to call me back I have'nt heard yet i will love to have this done willing to travel.\
  • Sonia
    My husband, 43 years old, has secondary progressive MS. He was diagnosed in 1998.

    We URGENTLY need him to be healed of MS due to our complex family health issues.

    My son, 16 years old, has intractable epilepsy.
    My daugher, 7 years old, has a mitochandrial disease.
    I had another daughter who passed on at the age of 2 1/2 in 2001 with the same mitochandrial disease as her sister.

    I need to have a healthy member in my family.
    I look forward to your response and having a healthy husband.

    God bless!
    Sonia
  • Marie-Claude Lalonde
    Hy! Sonia my English might not be to good but I have to let you all know that this treatment Is a god sent. I went to Bulgaria in may to have the liberation procedure.I use to have progressive m.s but now I'm not so sure anymore.I have no more fatigue like I use to, no more tremors and vertigos.I am still walking with a walker but slowly the legs will get better.
    Still I will need an other doppler in 4 months the doctor told me so.It might restenose. I will pray for all of you take good care.
  • Allypablo
    Dear Sonia, I hope that your husband is able to get this procedure done as it really does sound like the very best solution and has the highest potenital of all of the things out there for MS. I would however look into LDN as a temporary solution for his MS if he is not OK'd right away for this procedure. My husband has taken it for 5.5 years now for MS. We were very fortunate that not only are all of his symptoms gone (except a little numbness and tingling in his palms), and he has not progressed in his disease. LDN is cheap, easy to take and very safe. It is not a cure, but is a very good thing to try if you can't have the procedure done right away. Kindest of regards, Aletha from Calif. There is a UTube vidio somewhere out there where I talk about what my husband went through if you think more info might be helpful.
  • Marlene
    It took 2 1/2 years to get a diagnosis of progressive MS. I have registered at a hospital in Poland and am on a waiting list into 2012. I am hoping funding, studies and surgery to unblock veins will be done in the US or Canada before 2012. There have been people, in North America, that have had the surgery, in Europe, to unblock the neck veins. I would be interested to hear how they are feeling now.
  • Jayne Thomas
    BORN IN 1959
    DIAGNOSED 2000 with R/R, now secondary progressive...have not had a relapse in over a year...I am now taking low dose naltrexone....I live in St Catharines, ON Canada

    I do not know about my jugulars but I have always had a problem with circulation...eg. varicose veins, coldness, feet are a light purple now...The distance for me to travel is not long, under 2 hours

    My cognitivity is still very good, as are my bladder bowels eyesight, the only thing is this chair attached to my bottom..I want it gone...I have 4 children I raised on my own with MS...the father left me because of the MS...I do this for them and for me...I know it's a vascular problem which is why I really would love to be part of this trial...to prove you right and THEM wrong...You are my last hope.
    peace and light to you
    Jayne Thomas
  • lisa p
    i'm from south dakota, im 26 and have had it since i was 13 years old would love to have this done.
  • Leslie J
    I was diagnosed with MS approx. 20years ago, since then I have noticibly slowed down and manifested typical MS symptoms. I am not able to walk alone, eat totally by myself, write by myself, I cannot drive due to right leg shaking. I'm very anxious and deperate like others with MS to squash this disease. My lovely daughters would certainly appreciate arresting this condtion and leading a normal functioning mother. Looking forward to any response. Leslie.
  • Marianne Z.
    Hi,

    I know the feeling of having so much life to live and yet it gets harder and harder to do so. My 8 year old daughter and husband need me too.
    The ball is rolling though, for all of us! Just never stop looking and fighting this terrible disease.
    I've asked my family doctor for a req. for scans at the False Creek Centre in Vancouver. Of course my neuro. wants nothing to do with it. :( Ah well, we all have to empower ourselves to fight for the care we need!

    Take care to all of you
    Marianne Z.
    PPMS
    Age 40
  • Neurologist
    This is an unproven theory and procedure. The current reports of responses to treatment are anecdotal and the research quality is poor. The risks are significant. The expense is great. Good, well designed, research trials are needed. Only then will we know if this is a step forward. Physicians and patients want the same things; however, the Hippocratic oath tells us not to knowingly harm - "I will give no deadly medicine to any one if asked, nor suggest any such counsel".
  • Lane_a1965
    Dear Neurologist. Do you know the mortality rate for angioplasty?It would be the same or less for CCSVI.the expense of the tests required and treatment would be considerably lower than medications for 2 months!! Do you know anything about multiple sclerosis?Go back to med school!!!!!or maybe you do research and are afraid of losing your current funing or pharmaceutical big fat bonus cheques!!!!
  • Ildapelingu
    I completely agrre with you Lane.
    This doctor doesn't know that my Avonex ps for 1 year cost me 1700 $
  • What are the risks? Do they outweigh the risk of letting the MS worsen? How does weighing the risks get to be the exclusive domain of the doctor? Why do patients not have a say?
  • Allypablo
    LDN is not a risk at all. It is cheap, safe and for my husband has been very effective. Yes, anecdotal (should not be used as a bad word in my opinion), but I have hundreds of stories saved where this has helped. Really worth trying while waiting for trials and research is completed for this procedure. My husband got his life back and is doing one to two sports a day, MRI's are coming back clean and he has not progressed in 5.5 years. Thanks, Aletha from Calif.
  • Shannon
    Could you please elaborate on the " significant risks " ?
  • Cjfrost
    Colleen

    Getting a scan is certainly 'NOT DEADLY MEDICINE'. And, if at least this scan was allowed then more data can be collected with a larger base to draw from and answer questions that many are having now. This is at least a step in the right and moral direction. Your reasoning does not make any logical sense.
    And what is so dangerous about this surgery compared to others? Do not all surgeries contain some form of risk? And yet we perform them to give those a better quality of life.
    I commend those fighting for their rights and not giving up hope. I am a healthy individual with a couple of friends diagnosed with MS and I intend stand by them and support them and fight any injustice that hinders the process.
    Pharma should also consider branching out as other businesses do when their current focus is out dated. If something is no longer needed then find something else to enhance the quality of life for man kind.
    To do a simple parallel: every day millions of people purchase lottery tickets in hopes of changing their lives. And every day after a draw, millions of people are still not lottery winners but the hope is not gone. They try again. We are not afraid of being disappointed or the outcome may not be what we dream of BUT DON'T YOU EVER STOP SOMEONE FROM HOPING!
  • Don't Stop Fighting!!!
    My mother was diagnosed in 1992 with PPMS. She is almost entirely dependant on having someone with her 24hours a day. The costs for devices for her has reached well over $250,000. Her neurologist tells us that there is nothing available for her and it will only get worse. We are aware of the risks that we will have to face as we continue along the path she is on. A simple procedure that is $5000 is something we are willing to do when there is nothing else available. In the past 18 years Doctors have not been able to find an answer to this problem so don't point the finger at our reasearch and our hopeful attitudes.
  • Amonteiro
    Please describe the significant risks of angioplasty to the jugular veins as well as the great expense.
  • Don't Stop Fighting!!!
    I have spoke to my Mothers neurologist and although there are risks, they are minor. Experimental drugs are more likely to cause "super infections". Angioplast is done everyday and relatively inexspensive. My mothers medication is over $1000.month, this treatment would save people with MS Billions.
  • Jennie
    I am very excited about these new developments but know my Dr, Dr. Freedman isn't on board yet after his visit to Dr. Zamboni's office in Italy. I also know we as Canadians, Americans, Europeans, Asians, Africans and Humans need to press our respective governments to move forward and open this up to every MS patient in a timely and cost efficient manner. I was diagnosed in January 2007 right after my wedding. I have more life to live, we all do.
  • Nicholas Tzortzatos
    I have been diagnosed 20 years ago, in 1989, I have 40 years. I have been trought interferons (alfa, beta), rebif, quimiotherapy, and the last one was the Stem Cells. I`m looking forward of something that will really make me feel good, and help my walking.
  • Jean
    I live in New York and I have MS and was also told that I have Venous incompetence right commonm femoral vein and left common femoral vein. Im not sure if this is anything you are looking for, but I also have been schedule for surgery on April 3rd for a venous clousure and pelvic venogram with possible left iliac venoplasty. Please let me know if I would be any help in this study prior to me have surgery.
    thank you very much for your time
  • JANE VITELLI
    BORN IN 1964
    DIAGNOSED 1988
    RELAPSING/REMITTING
    LIVE ON LONG ISLAND-CAN TRAVEL THERE W/IN 4 HOURS
    MRV FEB. 2010-OCCLUSION IN LEFT JUGULAR
    MY CHILDREN AND HUSBAND NEED ME TO BE HEALTHY
    I NEED TO BE HEALTHY, THE LEFT SIDE OF MY BODY IS SO WEAK
    I CAN'T WRITE ANY MORE, EATIBNG IS A CHALLENGE AND EMBARESSING
  • Sherry Dinnis Pitman
    Hi. I am a 48 year old woman and reside in Henderson Nevada. I grew up in Warminster PA. I have had headaches and Migraines all of my life. (Since I was 8) They changed though when I was around 28 or maybe a little older. No one could ever tell me what was causing them. In 1994 I started seeing my primary doctor. He tried every allergy/migraine med combo he could think of, with no relief. In 2007 I went to UCLA Medical center and was told by a Neurologist there that he was 100% sure that I did not have MS. In June 2008 I saw my now treating Neurologist here in Henderson, and he told me he is 100% sure I do have MS. Now I am on web sights all day learning about my MS. But the last several weeks, I am fixated on CCSVI, Dr. Zamboni, BNCA or anywhere I can get myself in to get help. e pain is in too many areas of my body. The back of my head and neck hurt so bad I cant even lay my head on a pillow. My legs have started and I even went temporally blind in one eye for a short time. I have always been a happy person. My nic name is giggles. I still hold true to that nic name even under these circumstances. I just want someone to help me. I believe Dr. Zamboni found exactly what I need. Please, wont you be the one to help me.
    With many Prayers...Sherry Pitman
  • Jim Sorbara
    I live in Toronto, I have Progressive MS. I'm very interested in being part of the study....please help me regain my dignity again.

    I pray to hear back from you.

    Thank-you.
  • Unfortunately, this site can only point you in a direction to seek treatment. Feel free to contact the Albany Clinic or any of the ones on the doctors/treatment page.

    Wish you the best.
  • van mcglothen
    I am a 50 year old male diagnosed with MS in 2005. I have a residence in New Jersey and would be very interested in being a part of this trial and possible procedure. Since reading about this treatment, I have for the first time, hope that I may be able to play piano again. I will fill out the form supplying you with the necessary information and pray that hear back from you.
  • LaVonne
    I am in New Mexico and would like to know if there are going to be help for this anywhere close here?
  • Nat
    Hopefully the Albany clinic can receive people with MS who lives outside the US. I am also wondering how much it will cost, since it's approximatively 5000 EUROS in Europe.
    Here, in Canada, I know it will be very long for any clinical trial to be started. Doctors here in Montreal are very sceptical with the Zamboni's procedure.
  • Jesse
    I heard about it through a person in Ottawa who had talked to the clinic directly, so I can only assume that they will be willing to take Canadians.
  • Liz
    There are more than 4ooo people already on the list for Dr Mehta!
  • Jesse
    That really doesn't surprise me since the number of people w/MS in North America is in the hundreds of thousands.

    Keep in mind that they may decide to open up the treatment to include those that are in the study. And I would imagine if that were the case they would likely select from the list of trial candidates first. But no guarantees.
  • Denise
    I have multiple sclerosis and want to be tested for CCSVI as soon as possible! I live in Pittsfield, MA. Please help me live!
  • Annette
    Reply to Denise,
    Apparently Georgetown University Hospital is conducting screening exams only. However, you must provide your Neurologists info- Georgetown will only release the results to the neurologist. In addition Georgetown University hospital is not providing treatment, again its just for screening. Good luck.
    This is the web site http://www.georgetownuniversityhospital.org/body.cfm?id=556557

    This location in New York claims to screen and treat CCSVI:
    http://www.communitycare.com/Practices/Interventional_Radiology/Contact_Us.asp
  • Allypablo
    Hi Denise, I have been writing to others on this posting. If you can get tested for CCSVI, that would be the very best thing. If you find however that you can't get on a list right away, please look up LDN on the internet. It has saved my husbands life, really. It is cheap, easy to take and for him it has been working. Everyone's body is different, but for him his symptoms went away quickly and he has not progressed in 5.5 years. It is not a cure however, but great to try in the mean time. He is doing one to two sports a day. no on makes any money with this drug because the pattent ran out years ago. We pay .77 cents a day. Worth looking into to try.
  • Rusty Patterson
    RRMS for three years.
    Otherwise healthy 48 yr old male willing to travel.
blog comments powered by Disqus