A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Post by gauchito » Tue Feb 09, 2010 1:34 pm

In addition to all well said, and having in mind that absolute priority for us is to get rid of this nightmare, it is perhaps worth mentioning that appealing of CCSVI has for all of us comes , consciously or unconciously, from the fact that it provides a reasonable explanation of the world for the first time. It is first class science and as such it needs to be ratified or rectified.
Until now we were getting increasingly disabled in wonderland. It`s been almost 150 years since first described. The humankind achieved lots of advancementsc in all fields in this time frame and this one remains a mistery?

I feel that with CCSVI, wheter true or not, the world might begin to change for us !

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Post by dee522 » Wed May 12, 2010 3:07 am

What is a 'doppler' vs. a 'venogram'. Please educate me on this. Did they start out with doing only on or the other and now Dr Simka is/has done both as well :?:

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Post by dee522 » Wed May 12, 2010 3:25 am

I have been getting what I have termed 'the 3-day headache' because from time to time I get these severe migraine-type headaches that last for 3 - 6 days then go as quickly as they came. No rhyme or reason, just gone :roll:

The headaches have been going on for about 3years now, and I just started Tysabri in January. My last MRI in April showed no leasions and no MS activity :D

But I go to sleep with it and wake up with it. WEIRD

I really want to stop taking Tysabri. thoughts of PML and the stain on my female reproductive system truly fear me. I seriously don't 'do' drugs and try to maintain a largely organic diet.CCVSI is EXACTLY what I need to put a stay on this MadnesS already :roll:

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Post by kevin4apenny » Wed May 12, 2010 4:03 am

Well I never ! I just got dumped by my GP for insisting on a referral for a doppler even to have it in writing that I 'cant have it'. ( had cointacted my 'Member of the Scottish Parliament' so I need a record .... but she seemed to take offence, and I really did get on with her until that point. So sasd that doctors treat people as neurotic when they ? dont understand our atypical symptoms and have NOTHING ot offer.
Thank you mrhodes ( hope I got you name right) for your informative input. I nursed MS for years with consequent frustration for my I am one of 'the guys'.
The way I see it, I am getting worse and my life is totally screwed u p as it is. We should n't have to fight fo this but we must. I have decided to have the treatment before I go beyond saving.
Good luck to all :)

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patient without patience

Post by 1eye » Wed May 12, 2010 4:59 am


I agree with all I have seen nurses and other medical professionals say on this forum. However remember there are other experiments underway to do with CCSVI: I believe Dr. Dake is either running one or intending to. Dr. Simka has published papers on his procedures for CCSVI, and Dr. Zivadinov has done different phases of a very large study which has not published yet.

Several other doctors are awaiting IRB approvals, including, including Dr. Mehta of Albany N.Y., and Dr. Sclafani of New York, N.Y.

There is some opposition to patients getting the procedure outside of clinical trials, which have been necessary in all drug based treatments, and this opposition is suspect because its major proponents have been recipients of sponsorship and money from the manufacturers of major MS drugs, which can reasonably be perceived as a threat to the 6 billion dollar MS drug market.

However there have been reports that Dr. Freedman, who has been a vocal opponent of this procedure, has started a CCSVI study of his own. He has in the past worked on stem-cell treatment, with limited success and some failure due to chemical toxicity.

Patients who have not had enough patience to wait for science to further elaborate, have gone to doctors at major in Poland, Bulgaria, Canada, and India. It will be further elaborated, and has been, by at least one study in a peer-reviewed journal in the imaging field.

Dr. Sclafani, in adjusting his application for his IRB's approval, has taken into account patient comments on this Forum.

Canada has had problems with conservative actions by physician organizations and their lawyers, who have threatened doctors licenses over CCSVI treatment. Similar actions by these people have taken place in several US states.

There are voluminous questions currently tabled with the Canadian House of Commons, particularly on the shutdown of medical and imaging programs and inability to be tested or treated for CCSVI, in alleged contravention of Canadian Health and Human Rights legislation.

The country of Kuwait, which has more financial power than Canada due to ownership of oil production, has begun CCSVI treatment of all of its 600 MS victims.

Finally, there has been published a paper documenting an agreement by vascular experts from 45 countries, in Washington, D.C. It recommends such experts treat cases of CCSVI with the same procedure, a simple balloon dilation using the same instruments as similar procedures done on veins throughout the body currently, for similar reasons.

This is a medical procedure done in hospitals, often in one day, however there is a lot of variation and it may be simpler or more complex depending on this variation.

I think that information should be enough to make an informed choice, but I agree that a person should make that decision for themselves, using the advice of doctors, and not by only reading this topic, or this forum.
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Re: Caution.....

Post by CureOrBust » Mon May 17, 2010 5:11 am

mrhodes40 wrote:Endovascular surgery is surgery
oooo.... i'd be careful with that statement if Dr Scalfarni reads it 8O He is a little touchy on this and prefers the term "procedure" :P

And just to weigh in a little with the "anecdotal" evidence, I saw my possible future Dr last week, and he said he had treated about 25 patients thus far; and by treated, the implication was he found something to treat in all 25 MS patients.

I put him in contact with Dr Sclafanis (they knew of each other, but did not know they were both treating CCSVI) and I joked about it being called a "procedure" and he could understand why Dr Sclafanis doesn't really see it as surgery, but still managed a smirk.

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Post by Asher » Mon May 17, 2010 6:51 am

I used to ride a powerful bike. I guess the risk was significantly higher than the 'risk' associated with the procedure, whether with or without stents.

In the absence of some radical game changer, MS entails an 'almost certain probable future' - severe disability and a quality of life that really sucks.

I'm on my way to Poland this summer, I've got nothing to loose, and in case it works, everything to gain.

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Post by lumpc1 » Mon May 17, 2010 8:32 am

me too asher, and as far as I am concerned life is not worth a tinker damn not being able to do that. it has been 4 years of hell.

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