This Is MS Multiple Sclerosis Knowledge & Support Community

So...way back in 2008, a group of us on TIMS started discussing a theory and a research paper. We took it to our local university doctors. Marie's doctor found she had vertebral reflux, but didn't know what to do. Jeff's doctor found he had double jugular stenosis and said it was OK to put info on the internet, and see if more pwMS wanted to be tested. He had a plan to deal with it.

No money changed hands between patients and caregivers. We just shared our experiences, for free. That's the way we roll on TIMS...we help each other. Whether it was Lew helping me learn how to help Jeff deal with his diagnosis, or Jimmy teaching me about vitamin D....no one charged me a fee. The truth is free, and friends don't make money off of friends.

My motto has always been, Go local. I only approached Californian universities, since that's where we live. No one could have ever envisioned what happened. I know I sure didn't. Neither did Dr. Zamboni (I know, cause we've talked about this.)
Fast forward a year later.

Please be careful when utilizing third parties to get diagnosed and treated for CCSVI. Questions to ask:
1) Where does my membership money go? Why do you need money from me to give me information I could get on the internet for free?
2) Has this doctor you are sending me to actually trained with Dr. Zamboni/and or has this doctor consulted with the others currently treating CCSVI?
3) Has this doctor performed angioplasty on the central veins? (this is VERY important)
4) What do I do if I restenose? 47% of Dr. Zamboni's jugular angioplasty patients restensosied...odds may be I'll need a second or third intervention. What then?
5) Who will provide follow up care for me at home? Do you provide for this?

We are in the beginning stages of understanding the full implication of Dr. Zamboni's discovery. We don't have all the answers yet. Please be careful. Caveat Emptor and all that.
cheer

I second what Cheer says (though I'm not "famous" nor started a Facebook page like her - so maybe it doesn't matter to anyone what I say).

Going local IS how this MUST be done. I'm not trying to minimize (in any way) people who have gone to Poland/Bulgaria/India nor anywhere else. Especially those in Canada who are in a predicament I can't even begin to understand - though God help us in the US with this new healthcare bill/system being modeled after that debacle and the UK system ...

Believe me, I signed my wife up for every list out there ... Poland/Bulgaria as early as CCSVI started to click with me. But then we also got on Dr. Sclafani's list (though offered an initial February date, chose to wait until the summer and we all know what happened then), and even got two doctors interested in CCSVI ourselves ... one who is treating now - his name is not out there yet that I'm aware of, but he has done at least 4 procedures to date, and another who will be doing follow-up care on my wife and then probably begin treating people as we recruit to him. (going to be a few months though, so don't get too excited).

We went regionally for the procedure (not quite 'local') but now are getting local follow-up care with a doctor we brought into the mix. He's not ready to perform procedures yet (but will be attending some upcoming CCSVI conferences) - and will especially be looking at my wife's May-Thurner.

Again, going local is a great thing ... she feels her May-Thurner has re-occluded. Right after her procedure she had her symptoms basically disappear, but they have started to re-appear in her left leg only. She said she could FEEL the blood flowing in her leg right after the initial procedure (which was balloon intervention only), and as the blood flowed, her symptoms began to abate. Days later, she could FEEL the leg starting to have it's bloodflow restricted as well and symptoms started to come back. Tomorrow we're going to have the veins looked at again - and if it has indeed re-occluded (as we believe it has, for other reasons not just based on FEEL), stents will be used (which in MTS has been proven effective and safe).

So we're blessed to have local care, someone interested in CCSVI and ALL OF YOU who have helped us along the way ...

I want thank you from the bottom of my heart dear Joan for all you have done! Nearly one year ago I’ve met Dr Franz at internet and short time later I’ve discovered CCSVI at TIMS. Since that my life has changed completely because the first time in 14 years living with that disease I’ve got real hope & ALL WAS FOR FREE!!!
You won’t believe it guys but I’ve got the Liberation Treatment done in New Zealand two weeks ago because a FRIEND told me for FREE where to go!
Well, if I & some other driven PwMS can go local at 'The End of the World' you can go local everywhere too! We need to support & push each other but we DON’T need a further bunch of vulture/MSSOCs who are trying to make a living out of our suffering. We just DON'T NEED that! ;)
Take care
Arne http:www.csvi-ms.net/en

Cheer,

I've been reading here for years, and from Day One, I know you have always said "Go local." It will always be the best advice. It's so sad to see money being made off of the sick in this odd industry called "medical tourism."

We need you here at TIMS, cheer, for many reasons.

I especially love when you update your previous research posts which is very valuable for those who aren't comfortable using FB.

Hopefully, you will somehow be able to divide your time between CCSVI Alliance, which will be the undisputed leader in CCSVI advocacy associations (thank goodness), FB, and TIMS.

Thanks for everything, cheer!

~HP

I too believe in going local even though my local attempts have yielded few if any results. If and when I am treated it will be by local doctors. At Least I know I have a right IJV 100% blocked and also some valve and flap problems. Sometimes I think I have failed. But then I think "I had a CCSVI MStery party and we raised $4350.00 for BNAC !!!!!". So my sister-in-law and I did something very positive and it makes me feel good. cheerleader, when your Alliance gets going, expect a donation from me. I did get the word out in St Louis to many many doctors and researchers but there are no receptive ears.

Last week I saw a new neurologist and tried to hand her a copy of the NYT article and she made a disgusted face and waved her hand dismissively. I just wanted to crawl into the woodwork.

ozarkcanoer

Our dear member LR has just reported about a thrombosied jugular vein which had been treated in Bulgaria. She had angioplasty there and two weeks later her IJV is closed shut with a clot. This is a real risk...there can be complications, and if you travel far and have a complication, what then?

We are still at the beginning stages of understanding why veins re-stenose ....PLEASE, if you can go local and work with doctors in your area, you have a much better chance of getting complete aftercare. And if you can wait, please do so. We will know so much more in the months ahead.

I know the slick videos and claims of miracle cures are compelling, but it's not real. This is a medical procedure with risks...yes, the gains might outweigh the risks, but we don't know that right now. Please stay home. Please work with the medical professionals in your area...and if you have to wait, then work with your government to change the system.

I know, I'm a bossy know-it-all....but this is important, too important to just sit silently by while people are spending huge sums of money and possibly hurting themselves.
cheer

Thanks Cheerleader for the wise words of caution. A commentary in a Canadian newspaper recently stated there are two groups of people involved with M.S.--those who live with it and those who live off it in a $6 billion per year industry.

Just as there have always been some who will exploit M.S. for financial gain, there are some who will also exploit CCSVI for financial gain. That does not suggest that all who are treating CCSVI are doing that, just that cheerleader's comments are a good alert to be careful. I very much appreciate suggested ibasic questions to ask before proceeding.

Many years ago, I asked a pharmacist why drugs for M.S. (which I do not take) are so expensive. He replied "Because the drug companies will charge whatever the market will bear and for M.S., the market will bear almost anything." Interesting observation from a professional in the field.

The same could be true of some who want to see how much the market will bear for CCSVI. We do need to be cautious and diligent.

Once anyone gets integrated into the CCSVI community, they have a decent chance of getting passed a name of a local or regional doc. But as an underground railroad goes, there are a lot of people getting left behind. Supply just doesn't meet demand.

Also there is the concern that insurance will stop paying for this. That worries me.

Go Local, Go Expert, Go Available, Go Go Go...there are good arguments for each of these, in my opinion.

I will tell you now, we've brought 2 doctors into the CCSVI fold (and they've been passed along privately which apparently is how this is going to have to go for now), and I'm still writing letters/emails weekly to many others. I've gotten a few responses, and I know there is interest from a few others.

The problem I'm running into NOW, is we don't need them to treat my wife ... so I can't say, yeah we'll be there on xx day when they call or email. So it might be shady too, why is this guy writing to me and I call him and he has no interest in getting treatment from me for someone he knows personally.

I'm trying to PM some people from this site near those doctors to get tested/treated. The other problem is they obviously want their first cases to be local (and it seems a lot of people on this site want to hold out for Dr. Siskin or Dr. Hubbard or someone even local to them).

I'm still working on it though - if for no other reason than to educate the doctors ... and pique their interest.

Sorry again I can't help you Canadians ...

cheerleader, You are not a bossy know-it-all, LOL. I'm with you 100%. If it weren't for the thoughtfulness and intelligence displayed by the original members of this board and all the scientific papers provided I would probably have dismissed CCSVI just like many mainstream doctors are dismissing it. I want to see the science have a chance to prove the correlation between MS one way or the other. I want to have the Liberation procedure shown to be effective and safe. I am afraid there are people who want to take money from patients for their own gain. I'm afraid there are CCSVI hysterics who blame everyone in sight and are looking for conspiracy theories. It is difficult to be moderate but hopeful but that is what I am. Keep doing what you are doing and thank you with all my heart.

ozarkcanoer

I support the 'stay local' position. But what North Americans mean by local is somewhat different from Europeans. I went to Athens to get a surgeon who only uses balloons not stents. It is a three hour flight which would mean a Canadian would have hardly moved in their country!!

I hope everyone will be able to stay on their continent before too long. The wait lists in North America appear to be very long. In Poland waits have dropped quickly as more sites have become opperational. I find it difficult to condemn any Canadian who travels to Europe but please keep in mind you are increasing your risk factors. 10-12 hours at high altitude is not a great idea just after venoplasty or stenting, you are adding to your risk factors. Having said this I would travel across the pond if it was my only option to get venoplasty in the next 6-12 months.

Tough choices, I know.

MarkW