When to do CCSVI?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

When to do CCSVI?

Postby greenmtns » Thu Mar 31, 2011 6:07 pm

I am in bit of a quandry. I have been dx'd MS and I have a few but not dibilitating symptoms. I will be seeing a Dr. soon to check me out for CCSVI very soon. Since I am early in the disease do you think it will benefit me to get it? I know the doctor would be the one to ask, but I am thinking out loud. I feel that if I got it it might slow the progression, or should I wait until I have a major symtom such as paralysis before I do it. As I stated on my introduction I am the sole provider for my family and my peticular job (due to it's requirements) I could loose it if I am found out to have MS (safety issue).
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Postby CCSVIhusband » Fri Apr 01, 2011 5:28 am

Only you can decide that ...

A doctor also won't be able to give you much advice (based on my dealings with them) because they just don't know enough about the long term yet. Dr. Zamboni's patients who were first liberated have only about 5 years to their credit. Most doctors practicing in the US only have been doing liberations for slightly over 2 years.

Based on reading the tracking threads, you'd see that there is a wide range of people who get "benefit" from liberation ... one group seems to be people early in their course of "MS". However, you see that some in the early course get no benefit. Some with long term MS get benefit (some WOW benefits) ... and some get none, some get worse.

But again, only you can decide that. The best thing to do is talk to a doctor and see what they say, if you feel comfortable. ASK A LOT OF QUESTIONS.
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Postby Lyon » Fri Apr 01, 2011 5:32 am

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Postby jackiejay » Fri Apr 01, 2011 6:09 am

"some in the early course get no benefit"....

I am under the impression that the benefit to getting the treatment is to stop progression...therefore if you are in the early course with minimal symptoms you have nipped things in the bud, so to speak...
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Postby CCSVIhusband » Fri Apr 01, 2011 6:33 am

Sorry JackieJay, I did forget to add the part about stopping progression as a "benefit". I agree, that's a HUGE potential benefit. And it's also one you don't measure in days/months after liberation ... it's years, and it's not just a few years, it's 5, 10, 15, 20 years. It is an exciting possibility though - unfortunately for all of those skeptics, they'll be gone from this site (likely) by the time we could look back and say "I told you so" ... :lol:

That is the theory and 'potential' behind liberation.


I was speaking more about symptom abatement specifically ... there may be no "symptom abatement benefit" in either group of RRMS, SPMS, PPMS ... though there certainly appears to be some based on CCSVI tracking and things like that.

But the goal (and theory) in the end is to arrest progression --- and it may take way more years than anyone has been liberated to know the true lasting benefits of that. But 5 years so far is good for those in Italy ... and 2 years for those treated first by Dr. Dake is a good start ...

After all, you can't 'stop' progression if you never start it by going through with angioplasty/stenting (by the liberation of CCSVI theory). So, 2 years for that group is a darn good 'start' considering the overall trend of "MS" is disease progression and 2 years is a lot better than 0 days ... I HOPE it continues through the rest of their lives (until age would take its natural toll on a body).
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Postby Luvsadonut » Fri Apr 01, 2011 6:54 am

I'm in exactly the same position as you, I have been diagnosed 11 years with little disability. My main symptom is the inability to walk further than 1 mile (due to stiffness and feet that weigh 100 kilo :)), therefore my MS is unnoticed by most people. I was scanned and diagnosed with CCSVI last year and have yet to have the treatment, I support my wife and child completely (she gave up work to raise our child - on my recommendation..). After following this site for over 18 months I'm of the opinion that we are still years away (if at all) from CCSVI being a conclusive treatment for MS, however, I also believe that having the treatment may well stop/delay the progression of the disease, although possibly only temporarily. The way I figure it, is that if I have the treatment and it stops/delays the progression for a couple of years it will have been worth it financially, physically and psychologically. If we go with popular thinking that 33% get worse, 33 % stay the same, 33% get better I equate that to read, for 33% of people MS progresses as per normal and for 66% MS stops. I'm hoping to have the treatment this year and be one of the lucky lot in the 66% bracket. Since I was diagnosed I've been trying to 'buy' time by changing diets, using various therapies etc etc, at the moment, for me, CCSVI will hopefully give me a few more years until a more complete treatment is available.
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Postby dania » Fri Apr 01, 2011 7:03 am

Since your symptoms are few and mild I recommend waiting until more info is available. I had great improvements with the first time. But the were short lived. Tried 4 more timese and now all 3 veins are 100% blocked with scar tissue. I am worse than ever. More and more are posting they have a vein, now blocked. Some like me report being worse since the procedure. I am seeing patients going for their second , third, fourth and fifth procedure.
It works, the problem is keeping the vein open and the blood flowing.
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Postby CCSVIhusband » Fri Apr 01, 2011 7:52 am

I think Dania's case ... as bad as it may seem just goes to show that there is something to the theory of CCSVI.

Her veins are now closed ... and her MS is worse.

When her veins were open ... her symptoms abated.

She's right ... the key is getting better procedures and things in place.

So like I said, only you can decide the "risks" you're willing to take --- remembering that almost everyone who has had the CCSVI procedure, even those in the end who got worse, ALL say that there's definitely something to it. That's the part you won't hear from the skeptics, that there is something to CCSVI and its associations with "MS" ...
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Postby vivavie » Fri Apr 01, 2011 7:55 am

It will be a year on April 25 that I began that journey... unfortunately after many interventions due to procedure complications I am worse now than before. Many many have good outcome for the others be ready to dig in your pocket because you may need more than a few procedures. If this is not cover by your insurance I would not recommand it unless you can afford 4-5-6 X. When facing vein collapse, thrombosis, blood clot, hyperplasia it is not a choice to have another procedure. If your health is going down fast we all know there is no other solution available. Just know it is a gamble for your health and finances. Good luck
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Postby Lyon » Fri Apr 01, 2011 8:29 am

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Postby Blaze » Fri Apr 01, 2011 8:44 am

We all want to be in the "Wow" group after treatment. But, stories like Dania's and Vivavie's are also very real--and are what have me holding off for now. Thanks to both of them for sharing.

I don't think we have much information that angioplasty halts progression long term--although it would be fabulous if it did.

This is all such a learning curve for both the doctors and the patients.
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Postby patientx » Fri Apr 01, 2011 9:20 am

CCSVIhusband wrote:I think Dania's case ... as bad as it may seem just goes to show that there is something to the theory of CCSVI.

Her veins are now closed ... and her MS is worse.


This is pretty faulty reasoning. Maybe having completely blocked veins creates another problem, separate from the MS.
Last edited by patientx on Fri Apr 01, 2011 9:30 am, edited 1 time in total.
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Postby blossom » Fri Apr 01, 2011 9:22 am

i've said for a long time that if i were early on with little disability------- i would wait. things are changeing rapidly. this clotting and stuff unless they come up with something better than they got at the present time is pretty scarey.

there is a lot more feedback than there was when i had the procedure.

the best to you whatever your choice is.
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Postby dania » Fri Apr 01, 2011 9:31 am

patientx wrote:
CCSVIhusband wrote:I think Dania's case ... as bad as it may seem just goes to show that there is something to the theory of CCSVI.

Her veins are now closed ... and her MS is worse.


This is pretty faulty reasoning. Maybe having completely blocked veins creates another medical problem, separate from the MS.

Just to clarify, I did not get new symptoms. My symptoms got worse. Increase weakness, muscle spasms etc. If you think about it, the greater the stenosis the greater the symptoms.
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Postby LR1234 » Fri Apr 01, 2011 9:35 am

I think anything with the health in general will affect the MS whether its CCSVI, flu or a surgical procedure so in my humble opinion I also think that CCSVI in itself could cause problems which could worsen the MS not necessarily that more blocked veins is a direct cause of MS.
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