First liberation procedure in UK

[Lyon]

oo

[cah]

I think, if CCSVI theory is correct and treating it greatly relieves or - I dare to say - heals MS, there's no possible way to do no harm to neurologists, as it threatens them in at least three ways:

- professionally, as they have to admit that doctrine could be wrong or at least they don't know (which for quite a few docs is the hardest attack to their profession)

- financially, as they loose their MS patients to some workmates holding stents

- psychologically, as it is a very unsatisfying or even depressing thought that they have treated and researched in a wrong way all the years.

I'm a entrepreneur. If one day somebody comes to me and says that there's something which helps my clients much better and thus could annihilate my basis of contract, I don't know how I would react. Maybe I just would ignore it as long as possible.

I think this should be kept in mind when judging how neurologists react. Maybe they're not prejudgmental or malicious. Maybe they are just frightened.

[radeck]

Of course it's your right to disagree but the rule is, first do no harm. That doesn't mean to hope or guess or assume you're not doing harm, but to do everything humanly possible to KNOW that you're not doing harm. Especially if a procedure hasn't proven beneficial, which CCSVI hasn't yet.

Right, and in my opinion not doing the procedure on somebody if you know that it has helped others means doing that person harm, unless there are dangerous side effects you know of.

Admittedly that goes against my personal belief, which is that people found to have stenosis should have the right to chose to take the risk and have it treated.

Please elaborate who "they" are and how Zamboni or Dake are being given a hard time.

I believe that CCSVI plays a role in MS and treatment may help. Since much of MS research is guided by the pharma industry, I wouldn't be surprised if that industry tried to give people who suggest angioplasty as intervention a hard time.

[skydog]

Now if the nay saying neurologists want to put their energy into disproving CCSVI I would encourage them to do so. They just might be able to add more to the puzzle and actually achieve quite the opposite result and strengthen the CCSVI model. Then maybe the drugs they push might in combo with treating CCSVI start achieving their targeted goal. They are a huge resource if brought on board. One can only hope! Peace, Mark

[GiCi]

Sharon,
In Italy we have free medical treatment for everybody (NHS), although a number of people buy medical insurance to jump the queue and in the hope to obtain a more personalized treatment. If a radiologist decides to treat a venous anomaly the NHS would not have anything to object, but if the neurologists refuse to refer their patients we have a problem.

Lyon,
What harm in improving the venous drainage from the brain? If you have a broken bone would you prefer to have it fixed even if the plaster does not cure your diabetes?

The neurologists, like every other doctor, have the institutional duty to keep abreast with any development in their field for the benefit of their patients. The fact that a great majority of them do not even know about CCSVI is self-explanatory.

radeck,
Your replies are spot on as usual.

cheerleader,
I think you are great!

GiCi

[px125]

I believe that for our health and life, even if CCSVI theory is not accepted as related to MS, why do a neuro should not TRY to reproduce (with MRV or Venous Doppler) the results by Zamboni?
If I'd be a neuro interested in doing something radically new, thinking about PATIENTS, I'd try to do ANYTHING to obtain a reproducible proof of CCSVI-MS connection. Even 10 patients may be enough to give an idea.
The first step is to test patient about venous insufficiency, not to cut veins!
That's why I agree with GiCi.

[Jamie]

I'm so glad Mel got treated when she did.

I think this will get a lot harder before it gets easier.

We're not going away though are we?

[Lyon]

oo

[Jamie]

Bob,

I think the difference is - not actively supporting, investigating etc is one thing but they are actively trying to prevent others doing so.

Why?

(Or at least that seems to be the implication by those above, I have no special knowledge of such.)

Jamie

[ozarkcanoer]

I would like to weigh in on this discussion. I have been accepted by Dr. Haacke to participate in his MS-MRI study. When I called my neurologist to get a copy of my records to send to Detroit, my neuro did NOT say "NO". I am going to see my PCP on Friday to also discuss this with him. I expect him to say this is a fine thing to do... people get MRIs all the time. No one in the medical profession is preventing me from participating. I just think that CCSVI is currently in the throes of being "proven" or "disproven" (whatever THAT means, LOL). When it IS PROVEN (or sadly disproven) then every doctor will climb on board. I just want to be someone who helps make that happen.

[Lyon]

oo

[ozarkcanoer]

Hi Lyon... good point about the delay on my records. When I made that post earlier today I was a bit freaked out about the delay with my records. What you need to understand is all this has occurred to me in the SPACE OF ONE DAY, TODAY !! My head is literally reeling (and the fatigue is killing me).

My neuro's assistant contacted me late this afternoon (5:10 PM CST). I am meeting with my neuro on Thursday Nov 12, at which time he and I will discuss what to send to Dr. Haacke. I am Fedexing my MRI to Dr. Haacke tonight since I have it in my grubby little hands, LOL.

I like my neuro, he is one good guy !!!!!

[Lyon]

oo

[gibbledygook]

I'd just like to say that there can be no doubt from a recent email that the neurologists in Stanford are causing a right headache for the wonderful Professor Dake and are becoming very obstructive. I hope to goodness they don't succeed in stopping him from stenting people with MS. I fear that is their intent, however.

[ozarkcanoer]

Lyon (and everyone else)... No one is holding me back. Today (November3) I was confirmed by Dr. Haacke's research assistant to have my imaging done in Detroit on December 7 at 10:00 AM EST. My PCP will help me and my neuro will help me. It could be that they are being so compliant since all I am doing is imaging, no stenting (for the time being).

When I see the results of the imaging, and if they show stenosis, then I plan to approach a vascular surgeon in St. Louis for a consultation. I plan to ask my PCP for a referral. If the imaging does NOT show stenosis then it will either be because I also need the Doppler ultrasound in accordance with Dr. Zamboni's protocol, or maybe I have no stenosis. Time will tell.