This Is MS Multiple Sclerosis Community: Knowledge & Support

http://www.thecoaster.ca/Community/2011 ... reatment/1

These two patients are both going to a clinic in California. I am not sure where they got this figure from, maybe from their clinic? The journalist printed it as if it is a fact.

Does it sound accurate? Inaccurate?

The article is a fundraising appeal. It has some disturbing factual errors. I would not trust the 85 percent figure. I wish these men success, but I also wish more fundraising would go to clinical trials. Spock thinking.

I'll have to look back, I can't remember the other errors. Really I was skimming for improvement reports only this was pre-procedure. The 85% caught my eye because it's not a number we've ever heard before. If their clinic gave them this statistic, I worry that this may be a marketing tactic that does a disservice to patients if it is not in line with what our actual results are.

Cece, I remember being disturbed by one clinic I spoke with when I asked about wheelchair access during an initial phone call. The person on the phone laughed and told me I could probably not worry about it since I would probably be leaving my chair there after the procedure, since that was the experience of "most" of their clients. I was so angry I did not schedule an appointment.

How could they say that? Especially to a person who had used a chair for eight years? Aside from being very unrealistic, it played on all my deepest emotions.

And as it turned out, while I did experience benefits I was very happy with from the doctor I ultimately chose, I most definitely did *not* leave my chair behind! But *that* doctor was very careful and respectful about setting my expectations properly, which I truly appreciated.

I am all for being accurate.

Thank you for your incredible efforts to keep bringing out information.

It is unbelievable that they'd say such a thing. Even if they'd seen some miracles, it's clear very early on that different people get different results!

edited to add:
Here's another quote, from another fundraising article, that worries me for raising expectations too high.

seems high to me. of course, if you only treat low EDSS, you might have more dramatic and positive responses. if you take all comers, including EDSS >8.5, then you certainly arent getting many back to work.

Bluesky, see you pm's

From the same fundraising article..
I guess exposure raises questions.. questions lead to truth. I hope.

http://www.ccsvi-tracking.com/ is showing 80% right now for "improvement of average symptoms"

This is really disturbing. Even geographical information is wrong. The article says the nearest treatment clinic is in These two men are in Newfoundland. .

Newfoundland is Canada's most eastern province. California is actually the farthest clinic, over 5000 miles away. Rhode Island, New York, Florida, etc. are closer. In fact, even Europe would be closer to Newfoundland than California.

I wish these two men well. I just hope they are not going into this with unrealistic expectations, but this entire story sets off alarm bells for me. If the author couldn't even get basic geography correct, what else was messed up in the story (besides the obvious 85%).

BlueSky, the information you were given is disgusting. Most of us on this site know that is false, but what about many others who haven't followed this as closely.

The best known US clinics (outside of our more informed group) seem to be Albany with Dr. Siskin and Pacific Interventionalists with Dr. Arata. Particularly in Canada, people know people who have gone to Albany and also PI has advertised here and at the Facebook site and given educational presentations in Canada.

I think the article is presenting the truth as the gentlemen know it, which is that there was no clinic closer than CA?

I am definitely learning my Canadian geography since getting involved with CCSVI.

The misinformation is appalling. All the more reason for the MS Societies, who are the main source of info for sooooooo many people, and for neurologists, another major source of info, to acknowledge that people are going to turn to other sources if they cazn't get reasonable information from their usual MS places because they are slow or closed.mined. I wish they could be better sources and not just turn people off or away so they end up in troubling situations for lack of more information. I feel incredibly lucky for the informatrion I was able to gather and the options I was able to choose form.

We used to be required to chek facts before printing stories, even in college journallism. OH MY I am so old-fashioned,

right on bluesky! except for the college thing, my reporting wasnt always so accurate!
This type of report is absolute BS

Hi Everyone,
I was able to go to the Hubbard Conference (yea) and one thing this discussion reminds me of is learning how many numbers have not yet rolled in.

I believe it was Dr. Ponec's lecture that discussed the # of patients "successful" with the procedure (I believe it was folks who noticed a moderate improvement or greater). The problem came in if you noticed how many patients had not yet returned the surveys. I asked him at lunch if he assumed (to be on the safe side) that all of the unreturned surveys were negative, would angioplasty still show enough positive responders to be statistically significant. The answer? Probably not, but he hoped they would not all be negative.

I encouraged him and the Hubbards to be proactive in calling these people to see how they are doing. Without those numbers, we are in the dark to a great degree. He heartily agreed -- I hope Dr. Hubbard follows through on that.

The only disappointing thing I noticed that day was that out of all of the patients there, none of them had improved motor function -- only cognitive function and improvements in fatigue (which is GREAT, don't get me wrong!). It did make sense, though, that we can't create myelin immediately, but we can improve the supply of oxygen to our brains immediately. Oh, and Bluesky, Dr. Dake discussed a tinnitus patient who was stented on the contralateral side, and the tinnitus went away on the table. He said that is typical for tinnitus. Wow.

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Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea

It's too bad so many people get so little from so many places. TV, the supermarket checkout, people are sitting ducks. I am just worried that some of this is Impropaganda from the Dark Side. Should I be Paranoid? No. So how did they know I was going to post this? Answer that one, if you can!

BTW wotthehell is a CCSVI needle? How does it open up my veins and send blood? Sounds gooey.

Somebody thought they were having great fun at this. Something about small minds...

"This has been another annoying info-mmercial brought to you by your favorite hoax, OhYes, the makers of Biff, the cola that refreshes."

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience