Announcement

Collapse
No announcement yet.

CCSVI Why can't they...

Collapse
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
    #1

    CCSVI Why can't they...

    Why is it such a problem for CCSVI? If you have a vein that has collapsed else where they fix it.

    If you have a broken bone they fix it why on earth can't they fix collapsed or twisted veins in your neck. Do the clinical trials (speaking for Canada. that is)

    Makes sense to me and It does seem to work majority of the time. Some may need replacing.

    If they don't want it related to MS call it what ever but help those that have collapsed veins. I think if mine were or are I would want them fixed asap... I don't know how many of you out there feels the same. but that's my two cents. Had to say something. I don't know if this topic has already been started.
    Not dx yet, had symptoms now for 4 years. First Neuro App was August 5,10.MRI DEC 8,2010 Finally done. Original MRI was for July 4,2011
    Tags: None
    #2
    Tinkering.

    The vein they are tinkering with is in your brain and you would not want to do any more damage to an organ that controls you life and survival.

    Plus it is a procedure that has to be approved by the goverment. Its still experimental and they are not sure of its ability to help.

    But I agree with you. I am willing to have it like yesterday. But there are regulations and protocol. It sucks.
    J. Tampa Florida

    Comment

      #3
      CCSVI options

      Originally posted by journeyman View Post
      The vein they are tinkering with is in your brain and you would not want to do any more damage to an organ that controls you life and survival.
      Actually the veins are just below your brain in your neck or lower (the jugular and azygous veins for example)

      Originally posted by journeyman View Post
      Plus it is a procedure that has to be approved by the goverment. Its still experimental and they are not sure of its ability to help.
      Here in the states, you don't need government approval, you need a Dr willing to do it

      Originally posted by journeyman View Post
      But I agree with you. I am willing to have it like yesterday. But there are regulations and protocol. It sucks.
      J. Tampa Florida
      There are currently 4 treatment studies that have been approved by hospital IRB's that are recruiting right now

      Dr. Mehta's group in Albany NY is recruiting 600 pwMS for a clinical trial, with 400 in the group to be treated and 200 to get "sham treatment" as controls, over a one year time period

      The next three I don't know as much about:

      1. Dr Siskin also in Albany NY

      2. Dr Arata in California (Pacific interventional)

      3. Dr Hubbard in California
      (search for the Hubbard foundation)
      Dr Hubbard is a neuro, whose son has MS, and was treated for CCSVI......

      I have also heard of studies/treatment being started in Rhode Island & South Bend, Indiana

      My wife is on the waiting list with both the Dr Mehta & Dr Siskin groups for treatment outside of the study
      (the upper age limit for the study is 55 & my wife is 56) as they have the most experience...

      Comment

        #4
        Question for bigfoot14. You listed many trials in the States. Do you know if they take Canadians for these trials? I sent emails to the Albany trial and haven't heard back one way or another.

        Comment

          #5
          Originally posted by rieshl View Post
          Question for bigfoot14. You listed many trials in the States. Do you know if they take Canadians for these trials? I sent emails to the Albany trial and haven't heard back one way or another.
          Yes, they do
          (plus keep an eye on the Hubbard foundation they have set up their IRB approval so that other clinics are able to treat using their approval....in Illinois where I live, 5 clinics have asked to be included)

          Dr Mehata's group offers treatment in the hospital (if you have insurance or are accepted for the study)
          or in their clinic (if you are self pay or are not accepted for the study) This is the waiting list my wife is on, as she is outside the age range they are accepting for the study

          Comment

            #6
            You can go to www.wheelchairkamikaze.com. He has several entries about CCSVI and why there are not more clinical studies being done. Money seems to rule everything including medical research.

            Comment

              #7
              Originally posted by jimwitthaus View Post
              You can go to www.wheelchairkamikaze.com. He has several entries about CCSVI and why there are not more clinical studies being done. Money seems to rule everything including medical research.
              If you search the Hubbard foundation website, you will see that there are 38 sites in the US that have applied to join their study so far.....

              This is starting to shape up as a turf war between
              neuros & pharma Vs IR's & stent makers.....
              some companies have both divisions, I'd love to be a fly on the wall during some of those board meetings...

              Comment

                #8
                Update

                Bump...

                The Hubbard Foundation now has 55 sites that have requested to be part of the treatment/trial/study under the Hubbard IRB approval (and for you Canadians there's one site in Vancouver, B.C.)

                As soon as each site is approved, the foundation will put the contact info on their website
                (look for CCSVI multi-center registry)

                Comment

                  #9
                  Bump again...

                  Dr Siskin's study has been approved by his IRB, and is now recruiting. The information on the study is available
                  http://clinicaltrials.gov/ct2/show?term=ccsvi&rank=1

                  I have added my wife to this list as well, as she fits the profile they are looking for

                  also the first clinic in the Hubbard foundation trial has been approved in San Diago...with many more to come

                  and as soon as one in Illinois gets approved, we will move my wife to one of those lists as a one hour drive is much preferable to a 14 hour drive

                  Comment

                    #10
                    I am going to have to wait patiently for testing available here if and when ever they do. I would really be interested in the Doppler test. I have no dx and most of these trials you need to be dx. It would be intresting to see the test in people who are getting a dx. It would be much quicker then waiting for a MRI. But I wait for the long process and hope that the clinical trials will prove that it does work. I would sure like to get my balance back and stop shaking when ever i have to stand.
                    Not dx yet, had symptoms now for 4 years. First Neuro App was August 5,10.MRI DEC 8,2010 Finally done. Original MRI was for July 4,2011

                    Comment

                      #11
                      Originally posted by zuzu20 View Post
                      I am going to have to wait patiently for testing available here if and when ever they do. I would really be interested in the Doppler test. I have no dx and most of these trials you need to be dx. It would be intresting to see the test in people who are getting a dx. It would be much quicker then waiting for a MRI. But I wait for the long process and hope that the clinical trials will prove that it does work. I would sure like to get my balance back and stop shaking when ever i have to stand.
                      The studies are starting to come, Dr Simka (from Poland) will be presenting a paper showing 97% correlation between MS & CCSVI.....

                      Comment

                      Previous template Next
                      Working...
                      X