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.
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.
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!
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 to get an overview.
Also, the Facebook site CCSVI 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.
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
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.
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.
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.)
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.
Questions that everyone of us has asked.
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.
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.
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.
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.