This Is MS Multiple Sclerosis Community: Knowledge & Support

If this is a question for me I am not getting what you are asking.

any takers?

Last message was for Scorpion. It was a joke but well... not funny. I drank too much wine today

I had the opportunity while at BNAC this week, to talk to a manufacturer's rep of the ultrasound machine from Italy being used by BNAC. I asked how it had been modified for use in detecting CCSVI from their standard model.

She said that the improvement was in software to provide better ability to detect the flow direction in the deep cerebral veins whose flow is slow and thus hard to analyze. The ultrasound machine itself is standard gear.

wouldn't he still have interest in the software though? or is it open-source?
on the other hand, colin rose had this to say:

Colin Rose said

May 21, 2010 at 13:29
Yes, it is puzzling that the true believers accept at face value the word of a varicose vein surgeon and disparage the comment of neurologists and a cardiologist.

He may have a financial stake in Esaote but it is not likely to be a big deal since the market is small but he almost certainly get something for giving courses on how to use the machine. More important is that transcranial doppler is useless. One is trying to look through bone that reflects sound waves at a mishmash of vessels with blood flowing in all directions; any pattern can be seen and interpreted in light of the patient’s diagnosis. That is why “special training” is required.

Zamboni probably gets most of his return from “CCSVI” via the Foundation he set up http://www.fondazionehilarescere.org/eng/index.html, the Scientific Committee of which is him and his friends to whom they dole out the money. As far as I can see there is no arm’s length vetting of grant proposals.

Personally, I have no interest in this topic after reading through the thread, but then I saw this Colin Rose statement:

'Yes, it is puzzling that the true believers accept at face value the word of a varicose vein surgeon and disparage the comment of neurologists and a cardiologist.'

I want to respond and please excuse me if I am off topic.
I am not exactly sure what Mr Rose is referring to here. It is totally misleading to make a statement that would infer that Dr Zamboni works in a vacuum. He happens to work with an incredible team of people, one of whom is Dr Farbrizio Salvi, a NEUROLOGIST, who is virtually his right hand man and is not to be pushed aside as if he was not totally involved, which he is. I know this first hand as I have been treated by Dr Salvi. He happens to be a true care-giver unlike some who would claim the status of 'Dr'.

And to make a sweeping statement that 'true believers' (that would be most of us with MS, thank you very much Mr Rose for underestimating my intelligence) 'disparage the comment of neurologists and a cardiologist' is a such a generalization as to make one wonder about this man's level of intelligence.

And why would we not take at 'face value' the word of a vascular surgeon who is studying the veins of the neck and their connection to MS?
Have people suddenly forgotten to connect the dots? Nothing is not related to something else. RELATIONSHIPS in our internal ecosystem is more important than guarding 'turf'..oh yeah, so is helping people that are suffering.

z

This topic is really getting very silly. If Zamboni really wanted to profit from CCSVI all he would need to do is quit his job, open a clinic and advertise for customers. He could charge whatever he liked and the whole world would rush to pay it. He could retire on a handsome pension in less then 12 months!

He won't do it because he is not motivated by profit.

One of the things that annoyed me the most was Mr. Rose's reference to Dr. Zamboni as a "varicose vein surgeon." Last week, I had a relatively non-invasive procedure to take care of the varicose veins in my legs. I had complete confidence in my doctor. He's performed the procedure hundreds, if not thousands, of times. However, I would NOT want him doing CCSVI testing and procedure on my darling man.

Calling Dr. Zamboni a "varicose vein surgeon" is really just funny to those of us who understand CCSVI. The sad, unfortunate thing is that, to anyone less knowledgable, it discredits him. Which is exactly what Mr. Rose wants to do.

It's pitiful.....and frightening that anyone will believe what's being written.

Well the first comment from Dr. Rose was responding to my amazement that people post on his blog saying things like "my friends a doctor and he says you don't know anything about anatomy!" when he is a cardiologist who has performed over 10, 000 angiograms, has a phd. in physiology on top of that AND teaches medicine. I didn't mean to leave that in there.

From what i've read, Zamboni was a vericose vain doctor.

It's pittiful and frightening indeed, especially when people like some of the posters here have blind faith in what they've read to such a feverent degree that they'll attack anyone who asks questions or at best employ evasion and mystification to not address the question i asked.

Welcome concerned,

You might find this thread illuminating:

http://www.thisisms.com/ftopict-11767.html

Feel free to let me know what you think.
.

BNAC and Zivadinov now own a doppler ultrasound machine from Easote. I was tested last week using this machine. While I was being tested a representative of Easote was in the room discussing the procedure with the sonographer !! My husband asked the Easote representative what was different between this "new" machine and the "old" machine. It seems as if it just a difference in software used to detect reflux in the deep cranial veins. It doesn't seem to me as if Dr Zamboni would make much of anything on this device even if he has a patent on some algorithm or other. The hardware is just like other Easote models. It is NOT Zamboni's machine !! It is Easote's machine and they probably agreed to implement this new software hoping it would lead to higher sales.

ozarkcanoer

I don't think there's anything illuminating about montel williams. nothing.

More sensational reports in the media, especially the sensational media (like montel), could just feed people more false hope without proper scientific testing being done. My mother hasn't been able to walk for 13 years, can only move one hand a bit, and her muscles are atrophied. She thinks because of the media reports that she can get this "operation" and get up and start walking...stop living in a nursing home...etc....


But if you want to put your plight right alongside psychic's and phoney paternity test, well... good luck!

just because a lot of people say something does not make it true. a million chimps (or even their second closest relative) on a million laptops making a million posts on teh internetz will never write macbeth, nor ever arrive at the truth.

Concerned -

You're right, your mom is LIKELY NEVER going to walk again. She's had permanent MS damage for too long to realistically think she'll jump up and run/dance ... you need to temper that. But you can watch videos on here and see results, or talk to people on here who have been treated and have seen significant results, or read blogs, or as I recommend actually contact the people personally and talk to them and learn their stories.

But is it POSSIBLE that if she got CCSVI treated (let's assume there's at least an 80% chance she has it and if you believe Buffalo the further along her MS the more likely it is she has it) that she might recover some of her lost functioning?

Let's say her body starts getting oxygenated blood, stops attacking itself as a result of CCSVI being treated, normal blood flow starts ... is that not better than not having it treated?

I mean she already can't walk ... what can it hurt?

At worse she's back to where she is right now ...

What IS the POINT your trying to make with your posts? To get someone to say your mom LIKELY will NEVER walk again? There ... I said it.

Can we move on now?

As a fellow caregiver for an MS patient, I understand your frustration and anger. Your mom has unrealistic expectations. Sounds like she might be in the late stages of Primary Progressive. You could temper her hopes by providing her Zamboni's research results that showed CCSVI treatment wasn't very effective for ppms.

I'm really confused by the anecdotal stories from ppms patients who have had the Liberation procedure and claim some improvements. Probably placebo.

Brian

Well we're poor and we don't have $10,000 to go to poland or whatever. If this is all BS then what are we supposed to do with $10,000 of debt? that's about how much i get in a year.

Watching videos of people on youtube talking about how the procedure saved their lives doesn't tell me much. I've seen video's of people talking about being abducted by aliens, demonic possession, talking to god, whatever... i'm not inclined to believe any of those things either.

I want to know if there's something to this and not just hope mongering. If there's a good reason to throw my family in debt forever. if i could just give her sugar pills it'd be a whole lot cheaper.