Reply
 
Thread Tools Display Modes
Old 07-28-2010, 08:29 AM #11
mrkmyword's Avatar
mrkmyword mrkmyword is offline
Junior Member
 
Join Date: May 2010
Location: Israel - and my head
Posts: 53
10 yr Member
mrkmyword mrkmyword is offline
Junior Member
mrkmyword's Avatar
 
Join Date: May 2010
Location: Israel - and my head
Posts: 53
10 yr Member
Exclamation Some more information

This story was shown in Canada Nov 2009 on a News Mag show called 'W5'
http://watch.ctv.ca/news/w5/the-libe...nt/#clip237746

They've been doing a lot of updates and before I moved from Canada -I tried to get my Nero to send me as a test case. There was a test team setup in Buffalo with Dr Zamboni (the doctor who discovered this) My Nero told me I could only get the testing done to see if I have the blocked veins - but not the procedure. Darn!

Sorry Eddie I didn't watch the utube clips so if I am repeating what was on it I apologize.

I have been following this closely for a year - because it had just 'exploded' on the internet and The MS Society of Canada was bombarded with questions and allegations that donated money was not being spent on new types of therapies like 'The Liberation Treatment'. What were they doing with research money if not researching this

The discussions and media coverage that ensued was very exciting. Folks with SPMS were demanding to go through the procedure no matter the risks and the Government should cover it. I would agree at this point

My neurologist in Canada was being pragmatic.
I was sure he was bombarded with calls for appointments. He asked me to wait because the procedure is delicate and can only be done by experts. They were still learning and trying to understand the ramifications of the procedure.

Interesting enough when I met my new neurologist in Israel he said the same thing - he was concerned it was a lot of hype there wasn't enough data to support a theory that this treatment is 100% safe and works
http://liberation-treatment.com/


In Buffalo the test conclusion.
http://liberation-treatment.com/resu...-trial-buffalo
In the Buffalo test: quote
'55% of MS patients who participated in the initial study were found to have the venous abnormality that Dr Zamboni termed CCSVI, with an additional 10% who were borderline. This compares to a near 26% of patients without MS who were also found to have the condition' end of quote

Hope I haven`t thrown this thread into a loop.

I`m really pleased this was brought to the forum and if anyone would like more information that I gather from Canada -let me know and I`ll be happy to post it here
__________________
DX:June 2007
Plasmapheresis:2007
Cyclophosphamide :07/08
Rebif 44 :2008 -09
Copaxone: 2009 ongoing
atypical RRMS


NEVER assume!
I may not look sick but you should see my brain!
.

.


“The thing that is really hard, and really amazing, is giving up on being perfect and beginning the work of becoming yourself.”
Anna Quindlen(American Author, Journalist)
mrkmyword is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SallyC (07-28-2010)
Old 07-28-2010, 10:06 AM #12
SallyC's Avatar
SallyC SallyC is offline
In Remembrance
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
SallyC SallyC is offline
In Remembrance
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
Default

Quote:
Originally Posted by kicker View Post
Sally,

Where (state, country) is your friend having it done?
I believe, in Arizona?????
__________________
~Love, Sally
.





"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
SallyC is offline   Reply With QuoteReply With Quote
Old 07-28-2010, 10:15 AM #13
kicker's Avatar
kicker kicker is offline
Grand Magnate
 
Join Date: Jan 2008
Location: Ellicott City, MD
Posts: 3,834
15 yr Member
kicker kicker is offline
Grand Magnate
kicker's Avatar
 
Join Date: Jan 2008
Location: Ellicott City, MD
Posts: 3,834
15 yr Member
Default

Aarcyn - Your state!!!!! Marc's doctor was told he couldn't do it anymore in NY. Think Mitch went to him too.
__________________
Kicker
PPMS, DXed 2002 Queen of Maryland
Wise Elder no matter what my count is.
kicker is offline   Reply With QuoteReply With Quote
Old 07-28-2010, 12:48 PM #14
Aarcyn's Avatar
Aarcyn Aarcyn is offline
Senior Member
 
Join Date: Jan 2008
Location: San Diego, CA
Posts: 1,776
15 yr Member
Aarcyn Aarcyn is offline
Senior Member
Aarcyn's Avatar
 
Join Date: Jan 2008
Location: San Diego, CA
Posts: 1,776
15 yr Member
Default

Quote:
Originally Posted by SallyC View Post
I believe, in Arizona?????
ARIZONA??????

I have a new sx. Good time to call my doctor and get information.

Since my dx is PPMS, I would be a great lab rat for the Liberation Therapy just because I am different....
Aarcyn is offline   Reply With QuoteReply With Quote
Old 07-29-2010, 01:28 PM #15
kicker's Avatar
kicker kicker is offline
Grand Magnate
 
Join Date: Jan 2008
Location: Ellicott City, MD
Posts: 3,834
15 yr Member
kicker kicker is offline
Grand Magnate
kicker's Avatar
 
Join Date: Jan 2008
Location: Ellicott City, MD
Posts: 3,834
15 yr Member
Default

Aarcyn, You are different!
__________________
Kicker
PPMS, DXed 2002 Queen of Maryland
Wise Elder no matter what my count is.
kicker is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Aarcyn (07-29-2010)
Old 07-29-2010, 02:14 PM #16
sw8689 sw8689 is offline
Junior Member
 
Join Date: May 2008
Posts: 43
15 yr Member
sw8689 sw8689 is offline
Junior Member
 
Join Date: May 2008
Posts: 43
15 yr Member
Default

My two cents...
Let's be very clear here, this procedure is not 100% safe. Angioplasty can have complications, and if a stent or other method is used to keep the vein open, this can cause even more complications. Hence the reason, both Canada and the USA, have decided to undertake trials. The veins have a good chance of returning to their prior state if not stented, so this part of the procedure needs to be perfected as stents are made for arteries not veins.

The ccsvi theory makes sense to me, as another condition, or as the reason our immune system is attacking our mylin sheath because of the iron build up in the brain from the blood not flowing out freely.

I don't believe the theory is about lack of oxygen to the brain, this would cause random ischemia, where MS lesions often have a certain characteristic. My understanding is that the theory is that the lack of free flowing blood out of the brain causes iron buildup, causing a certain toxicity, therefore causing the immune system to react and attack the myelin sheath.

Regardless, once permanent damage is done, axions are cut, that is it normally, some myelin will repair, some won't, so full recovery, back to the old days I believe is going to be a rare occurrence. However, if the recovery is 20-30-50%, or it is caught in the early stages that is where I believe our miracles will be.

I hope this helps, and if I have misunderstood some of this, please don't hesitate to jump in to clarify.
sw8689 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dejibo (07-29-2010), dmplaura (07-30-2010), EddieF (07-29-2010), SallyC (07-29-2010)
Old 07-29-2010, 04:24 PM #17
EddieF's Avatar
EddieF EddieF is offline
Member
 
Join Date: Oct 2009
Location: USA
Posts: 702
15 yr Member
EddieF EddieF is offline
Member
EddieF's Avatar
 
Join Date: Oct 2009
Location: USA
Posts: 702
15 yr Member
Default

Iron test would show normal ranges you think? I've always wanted to boost it for rbc's and strength but iron pills constipate me immediately so I never took them.

Oxygen has to play a small role or HBOT wouldn't help? I've read it's used in other countries for MS. I know HBOT helped 9yr old autistic child say a word (friend of a friend of a friend) but thats another forum.

I suppose stents aren't as good in veins because blood has less oxygen? What exactly happens different besides psi/flow artery vs vein stent?
EddieF is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SallyC (07-29-2010)
Old 07-29-2010, 04:53 PM #18
sw8689 sw8689 is offline
Junior Member
 
Join Date: May 2008
Posts: 43
15 yr Member
sw8689 sw8689 is offline
Junior Member
 
Join Date: May 2008
Posts: 43
15 yr Member
Default

I am not sure about wether or not ingesting iron would have an impact on the amount in the brain. One would think it would as the more iron one would have in the blood the more would be back up? I will research this and see what I can find.

I do think oxygen will play a role of some kind. However, not in the formation of lesions or we would be in even more trouble. When the veins are "liberated" and the oxygenated blood flows freely into the brain I would think that this would help in fatigue and what we all call brain fog, don't you think so? And contrarily when the iron enriched blood is free flowing out there is no chance for buildup.

May be away until next week if you don't here from me, leaving tomorrow for a short trip.

Cheers
sw8689 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SallyC (07-29-2010)
Old 07-29-2010, 04:55 PM #19
Aarcyn's Avatar
Aarcyn Aarcyn is offline
Senior Member
 
Join Date: Jan 2008
Location: San Diego, CA
Posts: 1,776
15 yr Member
Aarcyn Aarcyn is offline
Senior Member
Aarcyn's Avatar
 
Join Date: Jan 2008
Location: San Diego, CA
Posts: 1,776
15 yr Member
Default

I am wary of stents. I have been watching/reading about CCSVI. It seems very unbalanced in that the successful testimonies outweigh the unsuccessful attempts. That, in itself, is worrisome.

I guess the glass half empty is better than the glass half full.

With all that said, I still would love to be a lab rat. I am looking into the Hubbard Foundation. I think the cost of having the MRI (or is it MRV?) is $2,500. Not small chump change for me.

It would be nice to know if I am even a candidate. I am also waiting for Univ. of Buffalo's second phase.

Just think Kicker! I could be a reliable source...if you trust me! Now, donate to me!!!

I can just drive to San Diego, have the procedure and then enjoy the ocean view. Sounds like an amazing vacation. Donate to my cause now! And a part of me is kidding (you don't have to send me $), the other part is actually serious!
Aarcyn is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SallyC (07-29-2010)
Old 07-29-2010, 05:51 PM #20
sbiefeni sbiefeni is offline
New Member
 
Join Date: Jul 2010
Posts: 1
10 yr Member
sbiefeni sbiefeni is offline
New Member
 
Join Date: Jul 2010
Posts: 1
10 yr Member
Default

Quote:
Originally Posted by kicker View Post
I'm from Missouri (The show-me state, not really but not a believer in U-Tube videos.) Stuff is never certain to me. Too much is easy to fake. Too many believe stuff themselves. 2 people I trust has had Angioplasty with no results. I'm cautiously but hopefully waiting for better evidence.
Kicker,

I tent to mistrust information I see until it is proven. However, there are so many of these videos.. ask yourself.. what do these people have to gain by making these videos? And I thought about it further, all the naysayers out there, depending who they represent, have alot to gain.. have you ever calculated how many billions of dollars are spent each year on MS drugs?

So I compare, how much money does anyone stand to gain from doing angioplasties.. and how much money do huge multinational corporations stand to lose if MS found a better treatment, or possibly cure, that does not cost $20-$30,000 per year, per person?
sbiefeni is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
dmplaura (07-30-2010), SallyC (07-29-2010)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
CCSVI-I can't help but think that there actually my be something to this! Riverwild Multiple Sclerosis 75 06-30-2010 07:23 PM
CCSVI Video SallyC Multiple Sclerosis 5 06-29-2010 09:04 AM
CCSVI question Aarcyn Multiple Sclerosis 7 03-09-2010 06:43 PM
Ccsvi Jules A Multiple Sclerosis 3 09-13-2009 12:08 AM


All times are GMT -5. The time now is 10:39 AM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.