When are we going to do something?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

When are we going to do something?

Postby newday » Sun Aug 26, 2012 3:17 am

Let’s face it, most of us do not have 20 years to wait for the research to catch up and be accepted by the medical community of doctors, insurance companies and drug companies. Having the procedure almost two years ago was life altering for me. I still maintain many of my symptom improvements and have not needed to return to using five previously used medications. It was not placebo! I was tested last summer and could possibly benefit from additional treatment. With two children in college, you can imagine the financial strain of paying out of pocket would put on my family. The CCSVI Alliance is there to educate us and support the research but we need insurance companies to pay for this intervention. I will never understand why the insurance companies will pay tens of thousands of dollars per year for ineffective, disease modifying medications and not pay for a less expensive, relatively safe, potentially symptom improving procedure. Can’t we band together and do something. Maybe there are people out there quietly working on this. If so, I WANT IN! Please pm me. Ideas?
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Re: When are we going to do something?

Postby MrSuccess » Sun Aug 26, 2012 11:11 am

hello newday ..... have you not been reading all the posts here at TIMS ? I have and I certainly , absolutely , have no doubt that " something IS being done".

This journey - the Discovery of CCSVI .... it's link/connection to MS ..... and ultimately the acceptance of CCSVI as a treatable MS procedure ...... has been nothing short of amazing.

There have been and will be numerous "roadblocks" thrown up . They have been dealt with as they appear. Such as .... migrating stents .... insurance coverage stoppage ......

I have followed the CCSVI story from DAY ONE. Read almost every post on the subject here at TIMS. It is the SCIENTIFIC information that yields the greatest amount of interest in CCSVI. We now KNOW that pwMS have restrictions INSIDE the veins that return blood from the brain .... back to the heart. The blood flow circuit is compromised.

Many have had this situation corrected - as have you newday - with mixed results. From what I gather ..... it is a " Rule of Thirds " so far. One third improve . One third -little or no improvements. And sadly ....one third -continue to decline.

As of today ..... I have yet to read of ANY medical professional .... anywhere ....... INCLUDING ....Dr.Zamboni ..... to state that CCSVI treatment is a cure for MS.

I say . YET. I remain optomistic . Based on education ....not faith , not hope.

Please consider this. The Brain is an incredible organ. The ONLY organ in the body that -so far- has not or cannot be transplanted. It is delicate. It must be protected from harm. And yet we see - in the name of Sport- it kicked , punched at will. STUPID.

We know this. When blood flow INTO the brain is MOMENTARILY stopped , the result is ... you pass out ...... OR ......a possible stroke ,and if longer ...... death. The time frame is smaller than you think ..... just ask your doctor ...... or a Coroner .

CCSVI on the other hand , deals with bloodflow OUT of the brain.

How can any right thinking person - medical professional or man on the street - DENY that this condition [ PROVED on MRI'S , MRV's , fMRI's , IVUS .... and other blood flow tests ..] does not exist .... and if it does ...... it has no ill effect on your health ....

Those people are as stupid - or more dumberer - than those offering their heads as target in the sporting world .......

In my opinion ..... CCSVI research and the connection to MS .... is really going forward at a great pace ......


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Re: When are we going to do something?

Postby 1eye » Sun Aug 26, 2012 2:13 pm

We know this. When blood flow INTO the brain is MOMENTARILY stopped , the result is ... you pass out ...... OR ......a possible stroke ,and if longer ...... death. The time frame is smaller than you think ..... just ask your doctor ...... or a Coroner .

CCSVI on the other hand , deals with bloodflow OUT of the brain.
Because it is the same blood going in as coming out, except for oxygen and sugar, etc. the problem is not acute but chronic. Over time it can be just as deadly.
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Re: When are we going to do something?

Postby Cece » Sun Aug 26, 2012 2:27 pm

MrSuccess wrote:I have followed the CCSVI story from DAY ONE. Read almost every post on the subject here at TIMS.

:oops: can you even imagine how many Cece posts you have read, then? :-D

Newday, I feel it too, and I wish there was more that I could do. I don't think it will be twenty years until this is accepted. There are RCTs getting underway and those will give answers. As CCSVIofHouston said in another thread recently, these stenoses are seen in other disease processes and there are commonly accepted treatments for these stenoses.

In many ways, CCSVI was almost entirely in our hands as the patients back in late 2008 and all of 2009. Patients spread the information, patients showed up knocking at Dr. Dake's office and Dr. Simka's and Dr. Sclafani's. There was a shining moment in which we were disseminating information and engaging doctors. But then those doctors took it further than what we could do on our own. There is research, conferences, collaboration. There is fundraising, there is publishing. Even if we as patients do no more, the doctors will continue the necessary work and research.

But doing no more is not right. There is a role for us as advocates and activists. Recent events have been letter-writing campaigns to Congress and a car-related fundraiser on ccsvi.org. If the goal is to have insurance covering the procedure, then we need the randomized controlled trials because that's what's lacking. We have the information from some insurance companies explaining in painful detail why CCSVI treatment for MS is experimental and investigatory. Positive results in as few as two randomized controlled trials could turn that around. Right now I am looking at Dr. Siskin and Dr. Dake to do those two trials, as well as Dr. Zamboni in Italy. As activists we could fund-raise. The patient-participants in the trials are doing activism by being there.

But a personal level, newday, are you sure your insurance company won't pay? Some do.
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Re: When are we going to do something?

Postby MrSuccess » Sun Aug 26, 2012 3:27 pm

and each one well thought out and adding to the growing CCSVI knowledge data bank.

The quip about the position taken by the medical insurance people ..... seems to have slipped by me. I know already that CCSVI is experimental and investigatory. That's no real surprise at all. Has their position been posted here at TIMS ?

I've already come to my own conclusions regarding medical insurance coverage for CCSVI . They fear - rightly so- that stent placement and possible migration , could be a total nightmare. There are also other worries. The doctors doing this procedure have listed them all , so I won't go into detail.

The answer of course ..... is non-metalic bioabsorbable stents. :idea:

The heart must be protected . Do that , and the Insurance companies will get on board.


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Re: When are we going to do something?

Postby Cece » Sun Aug 26, 2012 3:46 pm

MrSuccess wrote:The quip about the position taken by the medical insurance people ..... seems to have slipped by me. I know already that CCSVI is experimental and investigatory. That's no real surprise at all. Has their position been posted here at TIMS ?

there are a few variations on this:
http://www.empireblue.com/medicalpolici ... 136297.htm
that came out last year.
At this time there is insufficient evidence available in the peer-reviewed published literature to support the use of venous angioplasty (with or without stent placement) for the treatment MS. The relationship between CCSVI and MS is not certain, the impact of treating CCSVI on outcomes of MS is not known and the safety and efficacy of this treatment have not been proven. Limitations of recent published studies include small sample size and lack of randomization. Current findings are preliminary and there are studies which demonstrate conflicting results. Results from large randomized controlled clinical trials are needed to further assess this proposed treatment modality.

so, we need the insufficient evidence to become sufficient evidence, such as through RCTs as suggested
and we need CCSVI to be acknowledged as a syndrome of its own. This policy is all about the use of venoplasty to treat MS. But what is being treated is a vascular disorder, not a neurological disorder.
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Re: When are we going to do something?

Postby MrSuccess » Sun Aug 26, 2012 4:33 pm

One eye - our body comes equiped with a "high-volume Low -pressure" fluid pump. A DIAPHRAM pump. We call it the heart. It pumps the arteries full of blood . That in turn delivers the payload , into the organs. If that doesn't happen ..... you are a "goner".

The heart [ your fluid pump ] IS NOT .... repeat ...IS NOT ... the other type of pump that seems to confuse people trying to understand CCSVI. The other pump type is called " a POSITIVE DISPLACEMENT pump. And the difference is HUGE.

According to Colin Rose ..... if CCSVI existed .... your head should explode as the heart kept driving more and more blood into the brain ...... what nonsense .... this guy needs to go back to Med school ..... or at least enroll in a few classes teaching basic hydraulics. :lol: Or to save time .... read my posts. :idea:

Let me explain it as simple as I can .......... sit up straight Rose ! :lol:

Hold your hand up in front of you . Spread your fingers wide. The palm of your hand represents your heart [ a diaphram pump ] . Your fingers and thumb are the arteries leading out of the heart . The Thumb goes UP your neck and into your head. It feeds your brain [ with hopefully clean and cooled blood].

If working correctly ..... the heart [ pump] .... fills all 5 arteries with blood.

Once the thumb has reached capacity ..... it will hold it's capacity .... and accept NO MORE blood. If and when it meets resistance [ Pressure] ..... the pump [ low pressure-high volume ] simply directs fluid into the other 4 fingers .

The thumb pressure remains constant . As will fluid pressure in the skull.

MrSuccess ponders the thought that CCSVI puts unhealthy strain on the arteries leading out of the heart. They are working harder than designed. This makes CCSVI a heart health issue ...... and it needs to be corrected immediately upon diagnosis.

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Re: When are we going to do something?

Postby newday » Mon Aug 27, 2012 12:52 am

I think my post was misunderstood. I too have been here since the beginning(4/09) and read everything on TIMS. I went to the symposium in NY last summer. I am mostly pleased with the speed of the research. I think the original NMSS direction was a waste of valuable time and their response/publicly stated opinion on CCSVI did PwMS a disservice. The “stupid or dumber” people are the ones I’m talking about. The insurance companies are looking to them to decide whether to cover or not. To deny the connection of CCSVI and MS is the obstacle. We don’t have time for the research to catch up. Some of the efforts be people are commendable but mostly for awareness and fundraising. Prior to a lot of people coming to TIMS for this information, there were letter-writing efforts to physicians and that is where “our” Dr. S came from. What I’m looking for is insurance companies to understand there is the potential for real less expensive symptom relief and limited time for us. (yes CeCe, no coverage...Capital BC)
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Re: When are we going to do something?

Postby erinc14 » Mon Aug 27, 2012 7:57 am

i've been reading about the history of medicine and it's quite shocking . from the condescension over hand washing to when they used lead and mercury to treat illnesses well into the 20th century , it really doesn't surprise me doctors negative attitude toward ccsvi.
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Re: When are we going to do something?

Postby dlynn » Mon Aug 27, 2012 8:06 am

newday,
If my ins. provider gave me a choice between DMDs or CCSVI treatment, I'd choose
CCSVI treatment in a heart-beat. As I understand it, MS /CCSVI (at this time) are connected, that's why
all the nonsense with the MS societies and insurance?? I've tried DMDs, they made me very sick and had bad
side effects, then I tried venoplasty, great results and no side effects!
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Re: When are we going to do something?

Postby 1eye » Mon Aug 27, 2012 9:21 am

:smile: :peace: Don't 1eye please, stoop to the same stuff. Just because you can fill a page with responses to drivel doesn't mean you should.

But it's so self-contradictory!

Still, responding will only make it worse.

OK, if I say so. But what about - ? And - ?

Sssh.

(whispering) OK. Modern MDs are not the quacks they were in Semmelweis's time. The social contract has been broken many times over by doctors, pharmacists, drug companies, bureaucrats, insurance companies, politicians, just about all the signatories. But let's not throw out the baby with the bathwater.

Doctors need to remind insurance companies that all medicine starts out as an educated experiment. That some procedures are bigger emergencies than others. Yes, hearts and other body parts are affected when there is something wrong with major veins in the neck. Yes they should be fixed if they can be. Yes it should be covered regardless if you "have" "MS" (or it "has" you) or not (some have CCSVI problems who don't and never will, have "MS"). It is medically necessary. Even if nobody has assigned the codes yet. Bureaucracy must not stand in the way of health. The attending physician must decide.

Doctors of previous centuries are not the only ones who condescend. Many are unaware they are not even qualified to advise, let alone preach.

(still whispering) "Fearing not I'd become my enemy..."

:smile: :peace:
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CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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