Should I be tested for CCSVI?

[Starryeyes2]

I know that people have discussed this before on here but I didn't see what everyone's opinions were on this. There was an MS walk in Seattle recently and there were protestors there that were against the MS society because of the CCSVI? They feel that the MS society doesn't support this procedure and the protestors feel they are in "cahoots" with the pharmacuetical companies??

When I read more about it, they said that all people with MS have this problem with their veins being too narrow and one should have a vein MRI to see which one was blocked. Of course there were people stating that they or their loved one had this stent procedure done and months later they had much improvement.

I don't believe in "snake oil" treatments or other things that people claim cures the MS, but I do wonder if anyone else has experience in this or what the opinions are of everyone. I definately don't want to get my hopes up...

Thanks everyone!!

Kristi

[Khiba]

Thanks Kristi, for wishing me well!

I have submitted the information on the procedure to my insurance company and am waiting to hear if they will reimburse me for the expenses of the procedure. However, even if I do end up footing the whole bill, it was well worth it.

Since MS clobbered me in 2008, I hadn't had a vacation and kept on putting money in the vacation fund anyways, and that amount paid for my trip and the procedure. The fund is now empty again, but I feel like I can enjoy the rest of my life instead for a while. ;)

I don't know if Norwegian's are prone to MS like the Scots but being from a far north country, it wouldn't surprise me if those of Norse blood are susceptible. Who knows. I know the Neuros don't. ;) Yet anyway.

Lulu, I agree with you that with the blood flowing out of my brain more freely, I get the old crud out and with it toxins, maybe iron that has built up and overall feel just better. ;) Even if it is a placebo treatment, it was a great placebo for me.

[Lulu54]

One observation that I can make is anyone who has ever had or known a person who has had an artery stented will agree that after the procedure the patient almost immediately feels and looks better.

Coronary stents improve blood flow, much like these CCSVI procedures do.  The increase blood flow means better oxygenation.  The brain depends on oxygen to function just like the heart does.  When the obstruction is cleared or  the flow is improved to the brain, the person should feel better, look better, think better, etc. just like they respond to the coronary procedure.Same with stenting to the arteries for circulation in the legs in cases of peripheral artery disease.  That is my interpretation of much of the positive results but may not be the whole picture.


I hope that makes some sense.  

Lulu

[Starryeyes2]

Gosh-It sounds awesome to get rid of so many symptoms. My biggest impairment is the balance. I use a cane alot now when I am going to the mall or any amount of walking is involved. I am definately scared to do anything like the ballooning.

I am not Scottish--50% Norwegian tho. Did your insurance pay for this? I would think that insurance wouldn't want to pay for a procedure that isn't totally proven. I am totally envious of you but very happy that you have seen such improvement.

I pray that you will continue to "get better".
Take Care!!!

Kristi

[Khiba]

I had the MRV based on the Haake protocol and did have abnormalities in my right jugular and azygos veins. I saw them on the MRI! It was pretty obvious even to the untrained eye and my Dr confirmed what I saw. ( I got my CD right at the end of testing and went back to my hotel room and studied it for a few hours before I met with the Doctor to go over the results.)

I had the Liberation procedure done on Feb 18th in Costa Mesa, California and it was painless, with no bad after effects except a little pain in the neck muscles. It was worth every minute I spent having this done and every dollar I spent to get there. ( Just this week I found out a center just opened up in the Medical Center in Houston, TX  to do the same CCSVI procedure, but a vacation in California was so fun)

My overwhelming fatigue has about stopped. Yes I still get tired but its an overworked kind of tired and not the day stopping dropping like a stone fatigue like before. I haven't used Nuvigil, provigil or anything else in my arsenal for fatigue, except my morning coffee, since the procedure.

I feel like most of my brain fog has gone. Some days its around a little bit and I forget what I went into a room to get, or forget where I put my keys, but overall I feel sharper and more alive than I did before the procedure.

I have better balance and don't stumble as much or walk into walls. I can walk the block again without my walking poles and without counting my steps or using an iPod for the beat to walk to. I haven't had to take a laxative in the last 2 months either. Yay!

It's for sure NOT a cure.  It is a outpatient procedure with a good safety profile that can improve your symptoms. That seemed like a no brainer for me.  I would say if you can get tested for it, go for it. All you risk is an hour and a some money if your insurance won't pay for it. But you will know if your veins are blocked and refluxing or not.

Then you can either have the procedure, or not, or wait however many years it takes  research to decide whether the vascular issues of MS folks are worth working on. Its a personal decision.

My Dr. in California said that most of his patients are of Scottish descent and I think he said around 90 percent. Most of his patients are Canadian and a high percentage of Canadians are of Scottish descent. So if you are of Scottish heritage, it would be a compelling reason to look into this CCSVI. I am of Scottish and polish descent and am not Canadian. ;)

I didn't have stents. The Dr who worked on me doesn't like to stent the first time around.

So far, after 2 months, I feel like the ballooning is holding up and I am just improving slowly but surely.

Cheers,
Jessica

[sllowe]

Geesh, it's a sad day when the MS society fundraisers are protested.

I signed up for a study, just to see if I had the blockages. To actually go through w/stenting I cannot say I'd do at this time simply because they are veins.

Reason I'm bringing this up is because I was not notified of not being chosen, nor was I notified of future recruitement for the study.

All I received, which was long after the study completed, was a solicitation email from the same study group that included the steep fee associated with getting tested for the blockages.  I was disappointed to say the least. Who's in cahoots with who in that bed is anyones guess, lol

Thanks for bringing this up, Starry - I had no idea the madness went as far as protesting good work.

-Shell

[jujuminx]

From what I have read, the medical community cannot replicate Dr. Zamboni's "success". Being able to perform and duplicate medical results in trials is what makes a procedure "proven" or not.

From what I remember, the problems with Dr. Z's research begin with his selection of test subjects and continues through how the results were measured.

All this to say that although we all hope it turns out that proven medical therapy comes of this research, it is way too early to tell at this point.

Julie

[Mike_Shuswap]

Last weeek I heard on the news a couple new studies showed about 43% of the pwMS did NOT have ccsvi.

They also reported that something like 23% of the healthy, non MS people have ccsvi.

I may have my percentages slightly off, but they're as close as I can recal.

I'll be getting my results next week from the False Creek CCSVI study I participated in.

I'm hoping I don't have the condition, but if I do I'll have to figure out wether I should do anything about it.

Mike

[Starryeyes2]

Thanks Lulu and Jensequitur!
I see clearly what the hubbub is all about. I read blogs on people that had this procedure done and both people were very disappointed in the results.

I just got worried that I wasn't checking something out and would be sorry later. I feel much better hearing from you girls.

Thanks!!!
Kristi

[Lulu54]

From what I have read, the NMSS folks in the Seattle area may have misstepped when this CCSVI group wanted to have a booth at their walk to hand out literature. They could have done so, but it would have cost a lot of sponsorship money to do so.  It helped to escalate the mistrust that already exists.

The scene became ugly between PwMS and the CCSVI contingent and it made the news in Seattle as the protest escalated.  Unfortunately the people who got hurt the most were those folks with MS who came out to do good by participating in the walk.

The CCSVI  proponents want a huge chunk of NMSS money to go toward researching this idea.  That would cut the money being used in other research areas.  The NMSS has done some funding of research but not enough to satisfy everyone.

If you read what is on facebook and other places on the web, It appears that if you believe in CCSVI, you have to also believe that the NMSS and the pharmaceutical companies and the neruologists are all in cahoots in withholding this treatment because if we get cured, they can't make money.

The original work of Dr. Zamboni that started this excitement claimed that 100% of PwMS have this veinous flow problem.  Subsequent tests show that it just isn't so.  Dr. Zamboni himself recomends that no one else have this procedure done until more trials are performed.  Understandably, people who are desperate for answers now and not five years from now, have found other doctors to perform the same procedure, with mixed results.

Some people get better, some don't after the treatment.  For some the improvement is lasting while for others it was temporary.

We have a few people here who have had this done, with mixed results.

I would love CCSVI to provide answers to MS and how to treat it, but am concerned that it has been turned into a big money maker for medical tourism.  There are only a few places in the US that are performing this treatment.  If you have enough money, you can get tested in Bulgaria, China, Kuwait, and Costa Rica.  

Do the research and keep an open mind to both sides and you will see why it is a confusing and controversial topic.

best, Lulu

[jensequitur]

The people that advocate CCSVI are a little... well... intense.  They don't understand that treatments such as CCSVI are still very experimental, and the results so far have been anecdotal.  Meaning that somebody gets it done, says they feel better, but is that psychosomatic?  Or is it a real improvement?

The problem with CCSVI is that the procedure itself is a little dangerous.  You're basically ballooning a neck vein.  You can't put a stent in it, so there's nothing to keep the neck vein from closing back up.  Many people who have had the procedure done end up having to get it done again.  I think there is some truth to the idea that more blood to the brain equals better function.  But it's not permanent.  50% of the people who've had it done end up with restenosis of the neck veins.

They've also found that not everybody with MS has CCSVI.  So my personal theory is that MS causes CCSVI... but I'm not the one doing the research!

This is a good read, and worth the time:

http://www.wheelchairkamikaze.com/2009/11/ccsvi-vascular-theory-of-ms-separating.html