# Multiple Sclerosis - Liberation Treatment **URL:** \ **Category:** Miscellaneous and Personal Stuff I Must Share\ **Created:** [November 22, 2009, 1:25pm UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519 "2009-11-22T13:25:48Z")\ **Posts on this page:** 20\ **Page:** 1
**Author:** ![Uzi](https://avatars.discourse-cdn.com/v4/letter/u/91b2a8/32.png) [@Uzi](https://boards.straightdope.com/u/Uzi)\ **Post date:** [November 22, 2009, 1:25pm UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519/1 "2009-11-22T13:25:48Z")
As reported on W5 last night. [Link](http://www.ctv.ca/w5/) An Italian doctor figured out a link between blood flow in the brain and MS. All the people he has tested who have MS have constricted veins from their head. Essentially, this is like having your plumbing backed up and shit leaking all over the place. On those he’s performed treatment on, they have decreased relapses and better quality of life. My wife has MS. Finally, she has hope of dropping all the expensive drugs. Even if the surgery costs $80K like one doctor charges, that is only 8 months worth of drugs. If it works, hopefully the insurance companies get their heads out of their asses and see the cost benefit of paying for the surgery. And if any of you have any pull with those who do research on this sort of stuff, see if you can get them to start studies to confirm that this works. MS is progressive. The sooner that people are treated the less chance they have of permanent damage. Thanks. ---
**Author:** ![Serenata67](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/serenata67/32/10646_2.png) [@Serenata67](https://boards.straightdope.com/u/Serenata67)\ **Post date:** [November 22, 2009, 3:46pm UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519/2 "2009-11-22T15:46:22Z")
My dad and my fiance’s dad both have MS… something I’ll have to look into. Thanks for putting that out there! ---
**Author:** ![cerberus](https://avatars.discourse-cdn.com/v4/letter/c/71e660/32.png) [@cerberus](https://boards.straightdope.com/u/cerberus)\ **Post date:** [November 22, 2009, 6:24pm UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519/3 "2009-11-22T18:24:58Z")
The mechanism for MS is the autoimmune attacks on the myelin. This new thing sounds like a secondary therapy, as I can’t see how CNS vasoconstriction mediates immune system function. But a clinical trial may be warranted. ---
**Author:** ![mnemosyne](https://avatars.discourse-cdn.com/v4/letter/m/c4cdca/32.png) [@mnemosyne](https://boards.straightdope.com/u/mnemosyne)\ **Post date:** [November 22, 2009, 6:34pm UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519/4 "2009-11-22T18:34:51Z")
Doctors at the Ottawa Hospital have been having success with bone marrow/stem cell transplants in patients with rapidly progressing MS. It’s still a small study, but is based upon improved MS symptoms in patients who had transplants to treat leukemia. I’m not comfortable sharing the second-hand results summary that a friend of mine (a nurse) has told me (in part because I don’t want to mis-state any results), but I do get a _very_ promising feel for this procedure! ---
**Author:** ![Canadjun](https://avatars.discourse-cdn.com/v4/letter/c/76d3ee/32.png) [@Canadjun](https://boards.straightdope.com/u/Canadjun)\ **Post date:** [November 22, 2009, 7:08pm UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519/5 "2009-11-22T19:08:08Z")
> [@cerberus](#): > > The mechanism for MS is the autoimmune attacks on the myelin. This new thing sounds like a secondary therapy, as I can’t see how CNS vasoconstriction mediates immune system function. > > But a clinical trial may be warranted. From [Neurologists Investigate Possible New Underlying Cause of MS](http://www.buffalo.edu/research/article.html?id=105620009): > [@](#): > > “The prevailing wisdom that central nervous system damage in MS is predominantly the result of abnormal immune responses against the patient’s nervous tissue has been challenged by research findings, which have demonstrated a significant neurodegenerative component in MS and the progressive loss of neurons” said Zivadinov. > > However, these inflammatory and neurodegenerative processes occur concurrently in MS and vary considerably among patients, making it difficult to identify the cause, or causes of the disease. Consequently, the origin and development of MS remains poorly understood, and its cause remains elusive." ---
**Author:** ![Shirley\_Ujest](https://avatars.discourse-cdn.com/v4/letter/s/45deac/32.png) [@Shirley\_Ujest](https://boards.straightdope.com/u/Shirley_Ujest)\ **Post date:** [November 23, 2009, 2:11am UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519/6 "2009-11-23T02:11:57Z")
Thanks for the linkage. I am always fascinated with medical breakthru’s or new attempts in any horrible disease. ---
**Author:** ![Uzi](https://avatars.discourse-cdn.com/v4/letter/u/91b2a8/32.png) [@Uzi](https://boards.straightdope.com/u/Uzi)\ **Post date:** [February 5, 2010, 6:48pm UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519/7 "2010-02-05T18:48:24Z")
Reviving the dead: My wife and I are going to Poland at the end of March for the Liberation treatment. The doctor there is so overworked that he is no longer taking patients. They are building a new facility to handle all the potential patients. She had her tests done at False Creek in Vancouver. It shows a very small left jugular vein. She’ll probably need the whole vein stented to open it sufficiently. Since I first posted there have been a lot of changes and support for the testing and treatments. Lots of universities are starting to do research now. The Buffalo study is proceeding to stage 2 and wants the authority to do testing of people off the street outside of the study. A good place to start is [ThisisMS](http://www.thisisms.com/forum-40.html) to get an overview. Also, the Facebook site [CCSVI](http://www.facebook.com/?ref=home#!/pages/CCSVI-in-Multiple-Sclerosis/110796282297?ref=ts) is an excellent source of information. The person who runs it, Joan Beale, was essential in getting CCVSI brought to North America and getting Standford doing the first study here. ---
**Author:** ![Harmonious\_Discord](https://avatars.discourse-cdn.com/v4/letter/h/74df32/32.png) [@Harmonious\_Discord](https://boards.straightdope.com/u/Harmonious_Discord)\ **Post date:** [February 5, 2010, 6:52pm UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519/8 "2010-02-05T18:52:29Z")
I’ll be hoping she sees improvement. ---
**Author:** ![Ferret\_Herder](https://avatars.discourse-cdn.com/v4/letter/f/e47774/32.png) [@Ferret\_Herder](https://boards.straightdope.com/u/Ferret_Herder)\ **Post date:** [February 5, 2010, 8:23pm UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519/9 "2010-02-05T20:23:55Z")
> [@Uzi](#): > > Since I first posted there have been a lot of changes and support for the testing and treatments. Lots of universities are starting to do research now. The Buffalo study is proceeding to stage 2 and wants the authority to do testing of people off the street outside of the study. I’m not entirely sure what the last sentence means. My guesses include an extension study, amending the current study to have more participants be allowed to enroll, or perhaps open up the process to be allowed as “compassionate use” to very severely afflicted individuals. (Compassionate use could be good in that people in desperate straits might have access, but unfortunately any information gained from treating those people can’t be used for research purposes.) Whatever happens, I wish the best for your wife, and may she have better health to come. - FH, medical researcher-type-person and Institutional Review Board member ---
**Author:** ![zoid](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/zoid/32/336_2.png) [@zoid](https://boards.straightdope.com/u/zoid)\ **Post date:** [February 5, 2010, 8:45pm UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519/10 "2010-02-05T20:45:08Z")
Best of wishes **Uzi** I really hope this is every bit as beneficial as it sounds, for your wife’s sake and everyone else with MS. ---
**Author:** ![Skammer](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/skammer/32/143_2.png) [@Skammer](https://boards.straightdope.com/u/Skammer)\ **Post date:** [February 5, 2010, 8:49pm UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519/11 "2010-02-05T20:49:35Z")
Can I ask, what type of MS does your wife have (relapsing-remitting or chronic progressive?) and how severe are her symptoms? My SIL has been in a wheelchair with MS for 10 years, and is gradually losing more and more of her mobility - she can’t even move her head anymore and can barely talk above a whisper. MS treatment to stop the progression would be miraculous, but her muscles are so atrophied it’s hard to imagine her ever recovering even if a cure were found. ---
**Author:** ![Uzi](https://avatars.discourse-cdn.com/v4/letter/u/91b2a8/32.png) [@Uzi](https://boards.straightdope.com/u/Uzi)\ **Post date:** [February 5, 2010, 10:43pm UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519/12 "2010-02-05T22:43:54Z")
> [@Ferret\_Herder](#): > > I’m not entirely sure what the last sentence means. My take was to allow people to get tested there like they could at any private clinic equipped to do the testing. I imagine they’d use the results as part of a study. I could be wrong, though. **Skammer** , my wife is RR. She is about a level 3 on the EDSS scale. She is mobile, but we are worried that she is progressing into SP. We have hope that once the disease itself it stopped, her body can then start the repair process and will retrain itself to use parts of the brain that haven’t been permanently damaged. Unfortunately, this treatment will only stop any further degradation (hopefully) and not repair damage. We have to hope that the body will do so on its own, or that further treatments will come around that can repair the damage. ---
**Author:** ![Markxxx](https://avatars.discourse-cdn.com/v4/letter/m/5daacb/32.png) [@Markxxx](https://boards.straightdope.com/u/Markxxx)\ **Post date:** [February 5, 2010, 11:54pm UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519/13 "2010-02-05T23:54:27Z")
Good luck to 'em and I hope it leads somewhere and quick ---
**Author:** ![KarlGauss](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/karlgauss/32/3713_2.png) [@KarlGauss](https://boards.straightdope.com/u/KarlGauss)\ **Post date:** [February 6, 2010, 12:48pm UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519/14 "2010-02-06T12:48:17Z")
Do we know if surgery on the veins in someone with established, long-standing MS has any benefit? It’s one thing to fix the veins _before_ there’s been any inflammation due to the leaky vessels, high pressure, etc, but it may be quite different once the body has responded to the leaks by causing inflammation (and demyelination). I’m not trying to be argumentative, and I’m certainly not “thread sh…ting”, I’m just interested. Of course, I would be dishonest if I didn’t say that, on principle, I am always wary of unproven high priced surgery and/or other interventions. This is especially so for relentless and vicious diseases such as MS and cancer, where the sufferers, quite understandably, are often desperate for a cure. In many cases, what is being sold is no more than ‘hope’ and the purveyors of the “cure” are just cashing in on people’s misfortune (to be clear, let me state explicitly that I don’t think ‘greed’ and exploitation, are the motivating factors in this new approach to MS understanding/treatment. Not at all.) ---
**Author:** ![Uzi](https://avatars.discourse-cdn.com/v4/letter/u/91b2a8/32.png) [@Uzi](https://boards.straightdope.com/u/Uzi)\ **Post date:** [February 6, 2010, 3:04pm UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519/15 "2010-02-06T15:04:50Z")
> [@KarlGauss](#): > > Do we know if surgery on the veins in someone with established, long-standing MS has any benefit? Those people that Dr. Zamboni has treated, as long as their veins remain clear, do not relapse. Essentially, they no longer have MS. They still have the damage that MS caused because a lot of it is permanent. Some of those damages the body can repair, some it can’t. > [@](#): > > I’m not trying to be argumentative, and I’m certainly not “thread sh…ting”, I’m just interested. Questions that everyone of us has asked. > [@](#): > > Of course, I would be dishonest if I didn’t say that, on principle, I am always wary of unproven high priced surgery and/or other interventions. My wife’s copaxone cost $1300/month. She’s taken it for many years. It was claimed that when she first took it that it would prevent lesions in the brain. Her recent MRI that she got when she had her veins checked shows many lesions in her brain. In other words, it doesn’t work. Wonderful new treatments for MS include a chemotherapy drug that essentially knocks your immune system back and one that actually kills your immune system altogether. Yay, for the drug companies! Tysabri can cost upwards of $40K a year. It can also cause your brain to swell and kill you. Some of these drugs work somewhat, some don’t. Most are dangerous and, if the CCSVI theory is true, don’t address the cause of MS. The surgery in Poland will cost us ~$8000CDN. One time deal. Less than the cost of a year of Copaxone. Granted, in the US, the same surgery can cost $80,000. Essentially, it is a day surgery - angioplasty. The cost will come down once the surgery is more recognized as a treatment. But for $8000, I’m willing to gamble to get my wife back (actually, she is driving this, not me) Btw, the doctor who will perform the surgery in Poland, Dr. Marion Simka, will be in Vancouver to show the testing clinic how to properly perform the tests and to redo my wife’s tests next week as part of this. ---
**Author:** ![Uzi](https://avatars.discourse-cdn.com/v4/letter/u/91b2a8/32.png) [@Uzi](https://boards.straightdope.com/u/Uzi)\ **Post date:** [February 6, 2010, 8:46pm UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519/16 "2010-02-06T20:46:46Z")
I should add that the cost of things like Copaxone is not the only cost in drugs that a person with MS takes. They take all sorts of other drugs related to the symptoms that the main drugs cause and to combat other symptoms of the disease. If a simple surgery can prevent a newly diagnosed MS patient from having to use these drugs and alleviate them in current MS patients, then that is a good thing afaic. ---
**Author:** ![Qadgop\_the\_Mercotan](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/qadgop_the_mercotan/32/83_2.png) [@Qadgop\_the\_Mercotan](https://boards.straightdope.com/u/Qadgop_the_Mercotan)\ **Post date:** [February 6, 2010, 8:55pm UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519/17 "2010-02-06T20:55:09Z")
> [@Uzi](#): > > If a simple surgery can prevent a newly diagnosed MS patient from having to use these drugs and alleviate them in current MS patients, then that is a good thing afaic. Big **if** , though. Good luck, I do hope your wife improves. ---
**Author:** ![Cat\_Whisperer](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/cat_whisperer/32/4839_2.png) [@Cat\_Whisperer](https://boards.straightdope.com/u/Cat_Whisperer)\ **Post date:** [February 6, 2010, 9:04pm UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519/18 "2010-02-06T21:04:14Z")
I really hope this works for your wife, **Uzi**. While the constricted veins might not be the whole story in MS, hopefully opening a constricted vein will cause some improvements (I can’t imagine that having a seriously constricted vein is a _good_ thing). It doesn’t sound like an easy, risk-free surgery, but it also sounds like there is no particular reason not to try it. ---
**Author:** ![Uzi](https://avatars.discourse-cdn.com/v4/letter/u/91b2a8/32.png) [@Uzi](https://boards.straightdope.com/u/Uzi)\ **Post date:** [February 6, 2010, 11:31pm UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519/19 "2010-02-06T23:31:05Z")
> [@Qadgop\_the\_Mercotan](#): > > Big **if** , though. Not a big if, a little one. It also gets smaller each day as more studies start to confirm Zamboni’s theory. I think once the Buffalo study announces their findings you will see a big push either way. Considering that they want to continue the study it makes me think their initial findings are confirming what Zamboni has said. Another confirmation is from those people who have had the surgery already. Most people report some improvement after their surgery. That could be placebo affect although being able to control limbs that you could barely move before is pretty amazing for a placebo affect. What isn’t placebo affect is none of the people whose veins remain open have a relapse. Placebo can’t stop the relapsing of MS. They have found this to be true at both Stanford and Italy. ---
**Author:** ![Qadgop\_the\_Mercotan](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/qadgop_the_mercotan/32/83_2.png) [@Qadgop\_the\_Mercotan](https://boards.straightdope.com/u/Qadgop_the_Mercotan)\ **Post date:** [February 7, 2010, 12:00am UTC](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519/20 "2010-02-07T00:00:22Z")
I hope it works. Here’s a discussion of this therapy at **Science-Based Medicine** , a generally respected site: [Multiple Sclerosis and Irrational Exuberance | Science-Based Medicine](http://www.sciencebasedmedicine.org/?p=3185) They caution against over-optimism. [Next page](https://boards.straightdope.com/t/multiple-sclerosis-liberation-treatment/518519.md?page=2)