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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.
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And if everyone agreed with each other the world would be boring! :)
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I cannot help but wonder about what criteria needs to be put in place in order for CCSVI to have an impact. In other words, if the nerve is so damaged that CCSVI has no impact on impaired movement.
I watched several of the videos (thank you EddieF) and I am cautiously optimistic about the results. If it was free, I would have the procedure in a heartbeat. |
I want sooooo badly for this to be the fix!!! please, let it be the fix!!! I am standing with cautious optimism waiting for others who have more courage than i to do it first.
Gawd, Ima chicken! I want to know the results tho. :o |
Hi Aarcyn. Criteria is deformed, restricted, squashed, or plainly a vein that is much smaller in diameter then other side causing less flow like stepping on (cheap) garden hose. It just makes so much sense to my mechanical mind that if blood flow is reduced, oxygen is reduced, cells will die. So HBOT which i've read is standard procedure for MS (countries other then mine) works by increasing oxygen to the brain.
That's my guess. My first discussion asking/telling dr to order Doppler (1st step) is Monday. My regular Dr. Neuro I see end of August. He wanted a visit and is 70+ miles away. I believe every single video and just spoke about it with o.r. nurse friend. Simple procedure. Surgeon in NY told me don't hesitate if you need it. Simple. |
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The two people that I tracked going through the procedure were in wheelchairs and the Liberation Procedure did nothing beneficial. So I was postulating as to whether a nerve can be so damaged as to not benefit from the operation. Blood flowing and nerves, not sure how it all connects (pardon the pun!). The gabbycats woman had a setback at some point. I keep hoping to get an update. She has a FaceBook page but I was unable to figure out how to access it. (I am computer handicapped:)) |
Understood. I guess if lesions or nerves are so badly gone, it may not grow back BUT..would be nice to stop progression at least and this is only if the person has restriction. Did the 2 you follow give dimension of L&R Jugular? Good question. I possibly heard one person say 2mm in one side, 10mm other.
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Thanks Eddie, I have a friend going for this, in Sept/Oct. I'll let you all know how it goes. She is very excited and optomistic.
I do hope this will be the answer for a lot of us. I wish it could work on all of us. |
Sally,
Where (state, country) is your friend having it done? |
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:cool: |
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Aarcyn - Your state!!!!! Marc's doctor was told he couldn't do it anymore in NY. Think Mitch went to him too.
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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....:D |
Aarcyn, You are different!
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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. |
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? |
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 |
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!:D Now, donate to me!!!:D:D:D 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! |
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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? |
I am hopeful but with a degree of caution, The best thing I've heard is 2 I know who had procedure but with no success but they are still active in presenting information to others. I'm waiting to hear what Aarcyn says.:rolleyes::D
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Sorry if this is a repeat, but:
http://www.youtube.com/watch?v=E8drm...2c&feature=sub Kerri and Kylie, both Aussies and both post CCSVI! :) |
http://www.youtube.com/watch?v=iu2xN...eature=related
Time for me to get back into CCSVI research. My good, left hand's sensory loss has progressed in 2011. Most light touch is gone except index finger & thumb. I exercised my rear off this yr. Swam 2,100 laps 14x28 pool. I'm also tired of people I know being hosptalized from MS. |
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I had my procedure done May 31, 2010. It dramatically improved my life but I am not cured. I still have MS, I still have problems, but I did see real and lasting improvments. Just for the fatigue reduction alone it was well worth it. In the 1.5 years since the treatment I have not had any progression, just flare ups of pre-existing symptoms. |
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