CCSVI skeptics

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

Postby mormiles » Fri Aug 21, 2009 6:16 am

Well, the skeptics thread is open to supporters of CCSVI treatment for expressing their opinions as well...and I have a few of my own.

On stem cell therapy: I think this is good for neural regeneration, but I can't see how it would do any good for stopping further damage that is being caused by something else entirely. After all, the damage that is repaired by stem cell therapy is a resulting symptom, not causal. It makes sense to me that people receiving stem cell therapy would show improvements and even reversals, but, in the long run, will those good treatment results last?

On causes of MS: Multifactorial---period: CCSVI, chronic infections, heavy metals, genetic propensity, poor methylation, lack of vitamin D, secondary autoimmunity, etc. However, if primary autoimmunity has anything to do with causing MS, I think it applies only to an infinitessimal minority of MSers.

On neurologists: In general, they are specialists with a narrow vision of their patients' problems. Their horizons of knowledge are limited by their insurance carriers, their journals, their drug salespeople, and their colleagues. They are not in the research business, and they are vested in the mainstream thinking of their field and what they have already been doing. The primary autoimmune model of MS has been so ingrained for so long, it is accepted as fact rather than as the unproven theory that it actually is. Even published material often presents MS as an autoimmune disease using the verb "IS" rather than using the phrase "is thought to be."

On MS research: Concerning research that is based on the assumption that MS is caused by primary autoimmunity, it reminds me of the definition of insanity I've read somewhere---Insanity is doing the same thing repeatedly and yet expecting a different result.

On CCSVI: It's an important factor in MS that should be addressed, as the other factors should be addressed.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby LR1234 » Fri Aug 21, 2009 6:32 am

I've read somewhere---Insanity is doing the same thing repeatedly and yet expecting a different result. from Mormiles (not sure how to do the quote thing)

That made me smile:)

My neuro is a researcher although obviously what he is researching is probably very limited to the assumption that MS is purely an autoimmune disease. (I believe MS has an element of autoimmunity but the trigger could be CCSVI, bacteria etc).

I know they are currently researching the idea that there is a problem with blood flow in the brains of MS patients but are suggesting the cause is metabolic. Again I have had many other metabolic related issues i.e thyroid, low blood sugar etc so this theory could also fit in somewhere.
I am glad the way we are looking at MS is becoming more open.[/quote]
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Postby catfreak » Fri Aug 21, 2009 6:52 am

My Neuro cares very deeply for his patients. His mother died from complications of MS and he has dedicated his practice to her and to helping his patients find the best solution to their individual MS needs.

I asked him about CCSVI in June and he thought it was great that the vascular side was being investigated. I have got to call him next week to tell him I am actually doing it. I am interested to hear what he thinks.

I believe he will be excited to see the results.

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9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Re: Skeptics?

Postby cheerleader » Fri Aug 21, 2009 6:55 am

HDragon wrote:MS, with its nebulous and temporal symptoms is an incredibly difficult disease to study.

I am not trying to poo poo the entire theory of CCSVI. I am just witnessing a sort of mob mentality that has lost its objectivity based on relatively few apparently successful stories.

Sorry to be a party pooper on the CCSVI thread, but after all, this is the "CCSVI skeptics" thread.

By the way, hello, I'm new to the site (and MS) and I really enjoy a good healthy discussion in case you haven't noticed. Next time I'll try to post before I'm into my third PBR tall boy. Cheers.


Welcome, Dragon. I remember my first post (we all remember our first time)- it was two years ago, and there were some pretty heated discussions going on regarding tovaxin, stem cells, antibiotics, etc. I could tell people had spent many hours researching their ideas. I came on the general thread and asked for help for my husband's pain and spasms, and got support and terrific advice. I stuck around cause I liked the people here.

You're right, we're not all doctors- although we do have many medical professionals here. We just read medical journals and share the information with each other and our doctors. I'll refer you to the first CCSVI thread where this all began:
http://www.thisisms.com/ftopict-6488.html

As far as autologous stem cells...yes, they do help some, not all. Many of the protocols involve immune ablation (anti-inflammatories) before treatment. There is a large segment of the progressive population that is not helped. There is much we do not know.

What I do know- as a layperson- is that my husband had 2 jugular veins that were closed and were opened. He has had a return of energy, joy and health that is remarkable. He is no longer fatigued. He spent three hours in 100+ heat chopping firewood yesterday, sweating like a wildman, and smiling ear to ear) He's had relief in bladder issues, pain and spasms as well. He sleeps thru the night and wakes up rested. My mother came into town and hadn't seen him since his stent procedure in May. She exclaimed, "He's back!" We both teared up.

I'll go to Bologna soon to report back on the new studies and doctor's results.

There is nothing wrong with scepticism! Dialogue is how we learn. We're trying to open some minds to a new paradigm, and that can be frustrating, but we won't stop. See y'all after Bologna...think I need a posting vacation.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby MaggieMae » Fri Aug 21, 2009 7:11 am

I'm sure many of us who read this forum (even if we don't give our opinions) would not be here if we heard only the pros of CCSVI. I want to hear others' thoughts, both pros and cons, conducted in a civil manner. I think for the most part, we do. Thanks to all who research and contribute.
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Postby jimmylegs » Fri Aug 21, 2009 9:20 am

hear hear, mm.

i like what i'm hearing with folks still recognizing that there is a bigger picture and more questions than 'open blocked vein = ms cure'.

not to say that i like hearing how dismissive some of the docs are about it, but even some of my docs think i'm a quack with the nutrition stuff, despite how well i'm doing so far.

even with my great GP, i'm sure that some of what i have suffered would have been called a 'relapse' if i hadn't coincidentally asked for the right tests at the right time to identify nutrition problems.

JL
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Postby Sharon » Fri Aug 21, 2009 10:03 am

Welcome HDragon
You wrote
I clicked on this thread thinking it may present opposing viewpoints and be a healthy forum for discussion about CCSVI. Instead I am finding people complaining about their neuros not buying into the CCSVI theory and then assigning motive to that solely based on reasons related to money and inflated egos.

Like most conversations, the threads will get off topic once in awhile.
There are people here who complain about their neuros..and, many times for good reason. I do not think any of us expected the neuros to buy into the CCSVI theory...this is all too new. But, we did expect them to read the research that was being presented to them. Some of the neuros discounted the theory immediately. I was fortunate, my neuro read the research. Neuros are no different than most people...they do not like their boat being rocked.
I noticed you posted on the LDN forum. Did your neuro prescribe your LDN or did you have to go to another doctor for the presciption? LDN is also an unknown to the neuros...they will say it has not been trialed--it has not been tested; therefore, they will not prescribe.
Please read the "Sticky's" at the top of the forum...this is where all the research on CCSVI is. You can also visit the website http://www.fondazionehilarescere.org/eng/index.html. Click on "Publications".

I became interested in the CCSVI theory because I could not discount the fact that 100% of MS'rs in Zamboni's study had the vascular blockages. Thanks to the tedious research by Cheer and Marie, I was able to read and educate myself. For me, the pieces of my MS puzzle started to fit. I went to Stanford, I had two stents placed in my left jugular vein. I accepted the risks (there are also risks associated with all the MS drugs ). Two and a half months out from surgery and I have no regrets...it was a good decision for me. I was hoping for no more progression. But, I am seeing improvements in my MS symptoms...I am starting to feel a little greedy...I need to get grounded again and remind myself that I was going to be satisfied with no more progression :wink:
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Postby bestadmom » Fri Aug 21, 2009 1:23 pm

Hi Sharon,

I'm excited to see that you are having some improvements. Please BE GREEDY!!!! Not only do you deserve it, but we all want you to get better, so we know what's in store for us.

Michelle
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Re: Skeptics?

Postby rainer » Fri Aug 21, 2009 5:30 pm

HDragon wrote:I clicked on this thread thinking it may present opposing viewpoints and be a healthy forum for discussion about CCSVI. Instead I am finding people complaining about their neuros not buying into the CCSVI theory and then assigning motive to that solely based on reasons related to money and inflated egos.


Disagreement and discussion are healthy for sure. Just be careful with the generalizations. Just as all neurologists aren't the same in their thinking and motivation, neither are all the posters to this thread.
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Postby CureOrBust » Fri Aug 21, 2009 7:54 pm

Now we all should know I have been on the little ship "tug-boat CCSVI" since the start, however, the one thing that CCSVI still has as a small advantage over Campath and HyCy, is how early it still is. I still remember the posts on HyCY as being an absolute stop of MS, and then when it later failed, the almost ludicrous absolute claims that taking copaxane after HyCy treatment would definitely stop re-activation; hey, it worked on mice, they said :roll:

cheerleader wrote:Campath tamps down inflammation in RRMS patients....but it does not work for progressive MS patients.
The fact that Campath does not work in progressive patients (or less effective) is actually a little surprising to me, after reading the article which showed it affected the genes to upgrade neuronal repair. ie no comment on myelin repair in abstract. My simple understanding is that its thought the progressive stage, is where neuronal damage is more to blame than demylination. But that's a whole different scepticism thread.

cheerleader wrote:Stopping relapses is not stopping MS.
As I am sure you understand, I do not think this can be stated as an absolute fact either way? although, isn't that why steroids do not work long term? I certainly don't know. :? Maybe stopping CCSVI may turn out to be the same as steroids, which work for ten or so years and then its back?

There is still more to learn, but I am happy we ARE learning.
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Postby Lyon » Sat Aug 22, 2009 9:06 am

..
Last edited by Lyon on Fri Jul 29, 2011 1:08 pm, edited 1 time in total.
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Postby CureOrBust » Mon Aug 24, 2009 6:58 am

I think I have been reading the reports from those back from Stanford, that they have not been so impressed with their experiences with the doppler tests?

I am guessing that they are attempting to duplicate the five tests Zamboni performs in his paper?

Have they been duplicating Zamboni's results?
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Postby CureIous » Mon Aug 24, 2009 8:55 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:22 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby CureOrBust » Tue Aug 25, 2009 5:41 am

CureIous wrote:...Dr D said that the Dopplers were to establish a baseline for future ref. ...the Dopplers were normal or didn't show anything.
Thanks, you confirmed what I thought I had been reading. The dopplers at Stanford are coming out "normal".

This I do not understand, as I had an independent neuro, that specialises in ultrasound / stroke, and he found a reflux in my IJV valve. ie with no "hints" from Zamboni's team. So simply performing the tests as they read them in Zamboni's paper, they managed to find an issue; but not two.

I would of though that Dr Dakes team, would of had an "inside scoop" as to how to perform Zamboni's test, to see the same 100% concordance he achieved. I would of thought if he wasn't getting these results, they would of researched to find out why and "corrected" their methods to align with Zamboni's.
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Postby cheerleader » Tue Aug 25, 2009 7:47 am

Just to clarify on the whole doppler issue- since there seems to be some confusion....and we were the first and I asked why....

Stanford is not following the Zamboni protocol. They do not use a transcranial doppler, since the university med center doesn't have one readily available. Dr. D mentioned that it is not often used and very expensive. If Jeff had had a TCD, they would have seen reflux into his brain, and Dr. D noted upon MRVing his jugs, that his stenosis was too high to catch with the regular doppler of his neck alone. Dr. D is trying to show that the usual American university doppler measures of neck alone may miss the stenosis and reflux, and it has in all the people who have presented high like Jeff: Marie, Mel, etc. You were lucky your reflux was caught with doppler alone, Cure...the stenosis must be lower. Dr. D contends that the real way to find stenosis is to do MRV....he is not working for Zamboni or "aligning" with Zamboni (he was working for me and Jeff, now others), he is taking Zamboni's research and doing it his way, which he believes will work better in the states, remove the doppler tests and save on insurance costs by going straight to MRV. Dr. Simka is doing it his way as well. They are all different protocols. They are all different men. Don't get hung up on the tests, Cure. The thing in common is that they have found stenosis and reflux in every MS patient they have tested.

Each doctor may have a preferred method of testing. Zamboni doesn't have MRV, he uses venography....the machines and techniques will differ. The results are the same.

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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