Our NMSS and a puzzling review of CCSVI

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

Postby Johnson » Sat Feb 13, 2010 3:02 am

I'm not too sure about the puzzlement. A doctor takes a new, more lucrative job, in fact, quite a few seem to be doing so. Could it be that they leave MS clinics, societies, etc., because they see the writing on the wall with CCSVI? In the end, these doctors are more dedicated to themselves than to MS. I can understand that.

I clicked the link above, and read about all the amazing new drug trials and such in the pipeline. Yawn. I was wondering at the lack of mention of CCSVI, and clicked on their research link. They have a fairly good summary, with links, of Zamboni's hypothesis. I thought that their coverage was very reasonable. I include this quote:

Q: What is the National MS Society’s view of CCSVI?
A: In trying to find the cause and more effective treatments for a disease as complex and unpredictable as multiple sclerosis, the Society is steadfast in its commitment to pursue all promising avenues of research that can lead to improved treatments and ultimately, a cure. It is important for researchers to think outside the box and we believe Dr. Zamboni has done this. His hypothesis is a path that must be more fully explored and Dr. Zamboni himself has stated that additional research is essential to evaluate it.

They got caught with their pants down, like just about everyone involved, but they are pulling them up - unlike my GP, neuro, etc. We spend countless hours reading every new posted data, while they are féted by drug companies and Bentley salesmen. None of them have a clue, but our outcry has made them notice. That Pipeline page is what is in the pipeline. They have not yet gone through the funding process with CCSVI, but are accelerating it.

I'm not defending the MS societies, neuros, etc., but I am not depending upon them either. The MS society did zip for cheerleader's husband, as far as I know. She did the research, and tracked down diagnosis and treatment where she lives (more or less), and admonishes everyone to do likewise. A lot of us find that to be more difficult than grocery shopping - which is a huge effort, but others can, and are pushing forward - with results.

If everyone withdrew funding to the Useless Ones, and contributed directly to the studies into CCSVI, we would get to where we want to be much faster. The fat cats can enjoy getting lean.

/blather
My name is not really Johnson. MSed up since 1993
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Postby HappyPoet » Sat Feb 13, 2010 5:02 am

From AlmostClever's post containing the Annals of Neurology's "Point of View" abstract . . .

"At present, invasive and potentially dangerous endovascular procedures as a therapy for patients with MS should be discouraged until such studies have been completed, analyzed, and debated in the scientific arena. Ann Neurol 2010"

So, let's do a bit of their kind of math...

Two years for studies to be completed
Two years for studies to be analyzed
Two years for studies to be debated

SIX YEARS they want us to wait for CCSVI treatment
SIX YEARS they want to keep us on big pharma's toxic drugs
SIX YEARS they want us to progress while on big pharma's toxic drugs

Can anyone hear me screaming out my window??? ARGGGH!!

~HappyPoet
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Postby LR1234 » Sat Feb 13, 2010 5:29 am

I don't believe we will have to wait.
Whether you have MS or not from a vascular doctor's point of view a blocked vein is dangerous and should be treated regardless of whether you have MS or some other disease.

I know for sure that my vascular Dr will begin treating patients who he have evidence of blocked/occluded veins.
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Postby HappyPoet » Sat Feb 13, 2010 6:35 am

LR,

I agree with you. In fact, I was just tested for CCSVI and am on the list of Dr. Mehta (a vascular surgeon in Albany, NY) for treatment, but . . .

My tests show I have an inoperable intracranial venous malformation and a missing jugular vein, so I will be taken off Dr. Mehta's list on Monday since nothing can be done for me, but . . .

I'm still angry with the way neurologists feel about CCSVI.

Best of luck to you!

~HP
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Holly's death

Postby msfitz » Thu Apr 08, 2010 5:43 pm

Rest in Peace Holly! Will they have her family quoted as saying that CCSVI had nothing to do with her death, as they said after her death. I'm sure stents migrate a lot, also, this can't be the first time, or can it? The fact is the procedure IS helping people, and we MSers want to decide for ourselves if this is what we want, we're adults, we can make our own decisions, let us, please. I have insurance that will pay for the procedure if it is done in the US, but not if I have MS because it's not approved for MS patients yet, hell, it's approved by the people who NEED it, we're sick of living with this MonSter. If I have occluded/malformed veins, I want them fixed, where ever they are in my body, they're not good, and if it could help, then dammit, I want the procedure done. I just wish everyone would read the articles of the people the liberation procedure has helped and not dwell on two adverse reactions (out of how many, really?), I know it sounds cold, but that's what they're called in trials! I'm sure every trial that's taken place has had it's share of adverse reactions, we all wish it weren't so but that's how we learn, as MS patients we don't have time, though, "time is brain", we CAN'T lose anymore. WE WANT IT NOW!!
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Re: Holly's death

Postby lucky125 » Thu Apr 08, 2010 6:20 pm

msfitz wrote:Rest in Peace Holly! Will they have her family quoted as saying that CCSVI had nothing to do with her death, as they said after her death. I'm sure stents migrate a lot, also, this can't be the first time, or can it? The fact is the procedure IS helping people, and we MSers want to decide for ourselves if this is what we want, we're adults, we can make our own decisions, let us, please. I have insurance that will pay for the procedure if it is done in the US, but not if I have MS because it's not approved for MS patients yet, hell, it's approved by the people who NEED it, we're sick of living with this MonSter. If I have occluded/malformed veins, I want them fixed, where ever they are in my body, they're not good, and if it could help, then dammit, I want the procedure done. I just wish everyone would read the articles of the people the liberation procedure has helped and not dwell on two adverse reactions (out of how many, really?), I know it sounds cold, but that's what they're called in trials! I'm sure every trial that's taken place has had it's share of adverse reactions, we all wish it weren't so but that's how we learn, as MS patients we don't have time, though, "time is brain", we CAN'T lose anymore. WE WANT IT NOW!!


Whoa there cowboy/girl. We all share your sense of urgency. Please do a little more reading about the circumstances of Holly's death (it was not caused by a migrating stent). That happened to a different patient who survived.

The best thing every MSer can do is educate him/herself about CCSVI, and calmly take the info to local interventional radiologists or vascular surgeons and ask them to read about it. Hopefully you will find an open-minded soul who is willing to try to help.

Good luck to you!
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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CCSVI

Postby msfitz » Thu Apr 08, 2010 7:27 pm

I know it wasn't caused by a migrating stent, that was a gentleman who required open heart surgery, I'm just saying that I for one want the procedure done, even if I could feel 10% better, it would be worth it. I would only have angioplasty though until they perfected venous stents, and they will!
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Postby danegirl » Fri Apr 09, 2010 1:10 am

It's "funny" and puzzling, how they (neuros - MS societies) can be so worried about what they call a potentially dangerous procedure, and warn against it, but they don'ty seem to mind that more people have died from taking Tysabri. That's OK.

Their logic eludes me....
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CCSVI

Postby msfitz » Sat Apr 10, 2010 8:55 am

It's because neuro's and MS societies don't want us to get better, they are supported my big pharma and patients who have to rely on drugs!
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...not so sure....

Postby codefellow » Sat Apr 10, 2010 4:50 pm

LR1234 wrote:I don't believe we will have to wait.
Whether you have MS or not from a vascular doctor's point of view a blocked vein is dangerous and should be treated regardless of whether you have MS or some other disease.

I know for sure that my vascular Dr will begin treating patients who he have evidence of blocked/occluded veins.


If I have blocked/occluded veins but I have no symptoms that can definitely be linked to blocked/occluded veins, does that not fall into the realm of "unnecessary" surgery? Without a proven CCSVI/MS Symptom link, a vascular surgeon might consider surgery in these circumstances unnecessary and therefore unethical.....
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Postby whyRwehere » Sun Apr 11, 2010 12:32 am

If you had blocked/occluded veins, you would probably be noticing a problem somewhere....of course, with my husband's case as an example, you just don't really notice the symptoms at first, then you think you can live with them when they get a bit worse, and then you get to the point where you are falling over, not controlling your bladder, unable to react quickly(this list could go on). Better to notice your signs of ccsvi and fix the problem, before it causes more irreversible damage, which you put down to "MS", rather than accepting it is ccsvi....since now you know, such a problem exists. That is my opinion, anyhow.
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