Findings at FCSC Vancouver/Canada

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Post Reply
User avatar
mangio
Family Elder
Posts: 288
Joined: 9 years ago

Post by mangio » 9 years ago

hey Jugular,
I just read the Berlin trial results and feel I just fell off a cliff.
Zero people with CCSVI being reported to have the condition!
What is going on?
Can't take all this up/down and will post after the Hamilton
conference as per requested.
Txs.

User avatar
mangio
Family Elder
Posts: 288
Joined: 9 years ago

Post by mangio » 9 years ago

newfie-girl,

I'm sorry I guess one of our computers are not working. I can read
your post on thisisms.

It probably does not matter now as I just read someones post
from abroad about the Berlin results and can't convey how sad I am feeling. Zero. Nada. How can this be?

User avatar
ozarkcanoer
Family Elder
Posts: 1273
Joined: 9 years ago
Location: St. Louis, Missouri
Contact:

Post by ozarkcanoer » 9 years ago

mangio,

I don't know anything about the Berlin studies. I am counting on the Buffalo study to help shed more light on CCSVI. And we don't have too long to wait !! Keep your fingers crossed.

ozarkcanoer

User avatar
letsfundccsvi
Newbie
Posts: 9
Joined: 9 years ago
Location: ON, Canada

Post by letsfundccsvi » 9 years ago

Could someone enlighten as to where we can find out more about the Berlin trial data? Thx

User avatar
Squeakycat
Family Elder
Posts: 411
Joined: 9 years ago
Location: Yehud, Israel

Post by Squeakycat » 9 years ago

letsfundccsvi asked

Could someone enlighten as to where we can find out more about the Berlin trial data? Thx
Here: Berlin "Study" Thread.

Apparently the study has not yet been done so any conclusions are a bit premature.

User avatar
fiddler
Family Elder
Posts: 398
Joined: 9 years ago
Location: Fredericton, Canada
Contact:

Take it easy...

Post by fiddler » 9 years ago

Folks, as I understand it, the Berlin study started a week ago, or so, and can't possibly have had any results yet. It sounds more like someone is trying to start an "urban myth", similar to the bulls*it about the "two deaths" caused by the liberation treatment. Take it easy... I know its hard to do because I want to believe and am afraid of being disappointed, but if you have a chance to look at a lot of these threads and the information in them, it's pretty clear that CCSVI has to be something at least somewhat real, because if it wasn't it would be a hoax much bigger than Orson Welles' "War of the Worlds".
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

User avatar
mangio
Family Elder
Posts: 288
Joined: 9 years ago

Post by mangio » 9 years ago

gammastang,
please accept the pause as we sort out all that is happening. Feb. 7th
is the big conference in Hamilton and many top surgeons are attending
for a reason. Please be patient and stay in touch.

User avatar
Johnson
Family Elder
Posts: 979
Joined: 9 years ago
Location: Ucluluet, BC
Contact:

Re: procedure

Post by Johnson » 9 years ago

mangio wrote:mangio
PostPosted: Sat Jan 30, 2010 1:48 pm Post subject:
TorCan,
I will post a message to you. txs/
and,
newfie-girl, pm
It might be nice if everything was not "PM", and so mysterioso... after all, I presume that we are all in the same boat here. Maybe not.
My name is not really Johnson. MSed up since 1993

User avatar
mangio
Family Elder
Posts: 288
Joined: 9 years ago

Post by mangio » 9 years ago

Johnson, I was just going to wish someone
well on a journey to India, (as I travelled there long ago) and
hopefully share some cheer with N.G. Didn't think anyone would
want to read such things as we have been told often
to stay on topic and have been trying to respect the guidelines.
My apologies if I offended anyone. Txs.

User avatar
Mechanicallyinclined
Family Elder
Posts: 128
Joined: 9 years ago
Location: Manitoba Canada
Contact:

Post by Mechanicallyinclined » 9 years ago

Don't wory about it Mangio. No appologies necessary!

I think the buffalo study is hugely important as it is a study of significant size.
I'm sure alot of eyes from the medical community are watching that one.
I know my MS clinic is watching that study. They mentioned it to me. Don't think people aren't paying attention! Gotta keep pushing through the right channels though!

User avatar
lilsis
Family Member
Posts: 38
Joined: 9 years ago

Post by lilsis » 9 years ago

Dr. Godley,

I understand dominance from one vessel to it's contralateral twin is present in a percentage of healthy individuals, but are you able to explain when dominance is considered pathological?

Also, regardless of visible reflux, an insufficient difference in flow and cross-sectional area between supine and upright can indicate problems with cerebral outflow. Is your clinic performing doppler in both positions or just supine, and if only supine, are you able to give your reasoning for this decision?

One last question, we seem to be hitting a road block in discussing results with my sister's neurologist. Is there any way to have someone sit down with us and explain why things that appear significant to us may not be what they appear?

Respectfully,
Gwen

User avatar
Johnson
Family Elder
Posts: 979
Joined: 9 years ago
Location: Ucluluet, BC
Contact:

Post by Johnson » 9 years ago

mangio wrote:Johnson, I was just going to wish someone
well on a journey to India, (as I travelled there long ago) and
hopefully share some cheer with N.G. Didn't think anyone would
want to read such things as we have been told often
to stay on topic and have been trying to respect the guidelines.
My apologies if I offended anyone. Txs.
Don't mind me, mangio. I just saw this. I was probably having a rough day, and was feeling paranoid. I'm sorry to make anyone else paranoid.

/OT
My name is not really Johnson. MSed up since 1993

User avatar
mangio
Family Elder
Posts: 288
Joined: 9 years ago

Post by mangio » 9 years ago

Heh Johnson, thanks for your post. I can't get the stents because
I have so many complications from other autoimmune problems.
But I have decided to try angioplasty and hope that will be okay.
An ex-beau that is a surgeon in Victoria has talked to me at length
about all this from his experience with stents and given me some
strong advice to ponder.

He also told me he heard of a surgeon doing the liberation procedure on a very young person in eastern canada this month mostly
on compassionate grounds because of the severe nature of the
ms and was found to have ccsvi. But nobody else can
get the surgery until the data is clear enough to support Dr. Zamboni's
theory. He felt if the results were okay at Hamilton many in the I.R.
field would jump on this. He got paid as little as 400.00 for some
surgeries he did (out patient ) and thought he would get about
1200 for ccsvi. I told him he needs to work in Poland!

User avatar
PCakes
Family Elder
Posts: 849
Joined: 9 years ago
Location: Canada
Contact:

Post by PCakes » 9 years ago

Mangio,

That is incredible.

Please .. what is I.R. ?

Thanks,
PCakes

User avatar
happy_canuck
Family Elder
Posts: 269
Joined: 9 years ago
Location: Victoria, BC Canada
Contact:

Post by happy_canuck » 9 years ago

PCakes wrote:Please .. what is I.R. ?

Thanks,
PCakes
I think it's "Interventional radiologist" -- the smart scanning types we need to pull this off!

Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tiny ... 44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tiny ... 3wzmkmg</a> ~Facebook</strong><br />

Post Reply
  • Similar Topics
    Replies
    Views
    Last post
  • US vs Canada
    by koneall » 1 year ago » in General Discussion
    12 Replies
    865 Views
    Last post by tzootsi
    4 months ago
  • Canada wins MS
    by jimmylegs » 5 months ago » in General Discussion
    1 Replies
    436 Views
    Last post by jimmylegs
    5 months ago
  • MS in Canada and the Americas
    by jimmylegs » 3 months ago » in General Discussion
    0 Replies
    427 Views
    Last post by jimmylegs
    3 months ago