Massive study disputes Zamboni theory of multiple sclerosis

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

Postby civickiller » Thu Aug 11, 2011 9:56 pm

Cece wrote:The blockages are found at the level of the valves, because 75% of CCSVI (give or take) are valve stenoses. The valves are where they are based on embryological development.


arent the valves either destroyed or angioplastied?
User avatar
civickiller
Family Elder
 
Posts: 555
Joined: Thu Feb 04, 2010 4:00 pm
Location: Hawaii

Advertisement

Postby Cece » Thu Aug 11, 2011 10:14 pm

civickiller wrote:
Cece wrote:The blockages are found at the level of the valves, because 75% of CCSVI (give or take) are valve stenoses. The valves are where they are based on embryological development.


arent the valves either destroyed or angioplastied?

The leaflets of the valve are angioplastied. The annulus of the valve is left intact, by most practitioners. My leaflets on my left jugular rose from the dead and took their former place back, thus my second procedure, and my continued vigilance for any sign of diminishing improvements (knock on wood).... but your point was that the stenosis tends to be at c1, which is the level of the atlas? But I don't think the atlas is causing these jugular valve malformations. The atlas may still be restricting or affecting additional blood flow. I plan on getting mine checked out.
Cece
Family Elder
 
Posts: 8989
Joined: Mon Jan 04, 2010 4:00 pm

Postby MrSuccess » Thu Aug 11, 2011 10:36 pm

Cece - problems at the C1 .... is this not the focal point of tramatic injury .......such as whiplash ? I guess the Upright Doctor can weigh in on that. Two separate study's report 5% and 7% of people involved in motor vehicle [ or other neck & back trama ] accidents ...... go on to be diagnosed as having MS. These people had no reported MS symptoms beforehand.

I can research the name of the study's ...... if you find it helpful.


Let's leave no stone unturned ..........



Mr.Success
User avatar
MrSuccess
Family Elder
 
Posts: 883
Joined: Fri Sep 18, 2009 3:00 pm

Postby MrSuccess » Thu Aug 11, 2011 11:03 pm

Dr. Charles Poser - Harvard Medical School [ now deceased - RIP ]

You might find this gentleman's life and work to be of great value in understanding MS .......








Mr.Success
User avatar
MrSuccess
Family Elder
 
Posts: 883
Joined: Fri Sep 18, 2009 3:00 pm

Postby civickiller » Fri Aug 12, 2011 12:40 am

i think the percentage is higher than that. its not just recent neck trauma, its decades old trama.

im one of those neck traumas, for me when i was around 10 years old i fell about 10ft on my back. 15 years later diagnosed with ms. what pisses me off is that i even told my neurologist about my fall and he quickly dismissed it.

i cant think of one person that hasnt had at least wish lash, at least a few times in their life.

Everyones atlas is probably off just not enough to interfere with the nerves. my brother, 2 friends have their atlas slightly off but they dont have ms
User avatar
civickiller
Family Elder
 
Posts: 555
Joined: Thu Feb 04, 2010 4:00 pm
Location: Hawaii

Postby civickiller » Fri Aug 12, 2011 1:10 am

Good find Mr Success

Dr. Charles Poser

http://nuccadoctordavis.com/2010/08/08/ ... -research/
User avatar
civickiller
Family Elder
 
Posts: 555
Joined: Thu Feb 04, 2010 4:00 pm
Location: Hawaii

Postby bil » Fri Aug 12, 2011 5:28 am

eric593 wrote:
Cece wrote:CCSVI being highly associated with MS would make it a significant one of those factors.


Unfortunately, the bulk of the studies coming out now do not demonstrate an association with MS much less "highly" associated.

For some reason, Dr. Zamboni is standing alone in this regard. I would like to hear his explanation about this. On the basis of his study, many, many people underwent venoplasty after trusting his research which does not appear to be reproducible.


Dr. Zamboni I think is sincere, but perhaps he is now only seeing what he wants to see i.e. he is no longer objective about the subject. Very common in medicine, and not unknown even in hard sciences like physics.

Others have quite clearly just jumped on the bandwagon for the money. Personally I find that sickening.
User avatar
bil
Getting to Know You...
 
Posts: 19
Joined: Thu May 10, 2007 3:00 pm

Postby Trish317 » Fri Aug 12, 2011 6:46 am

MrSuccess wrote:Cece - problems at the C1 .... is this not the focal point of tramatic injury .......such as whiplash ? I guess the Upright Doctor can weigh in on that. Two separate study's report 5% and 7% of people involved in motor vehicle [ or other neck & back trama ] accidents ...... go on to be diagnosed as having MS. These people had no reported MS symptoms beforehand.

I can research the name of the study's ...... if you find it helpful.


Let's leave no stone unturned ..........



Mr.Success


I've said this here before....my darling man broke his neck in his late 20's during an "old-timers" wrestling tournament. He wrestled in high school and college. He went through several surgeries to fuse the vertebrae in his neck and remove scar tissue. The last surgery was in 2005. He was diagnosed with PPMS in 2007 at the age of 55.

He started having severe migraines in his late teens and also has had several grand mal seizures over the years.

I firmly believe that it's all connected in some way. Because of the surgeries to fuse the vertebrae, I'm not even sure if he'd be a candidate for any type of chiropractic intervention.
User avatar
Trish317
Family Elder
 
Posts: 357
Joined: Sat Sep 06, 2008 3:00 pm
Location: Rhode Island

Postby Loobie » Fri Aug 12, 2011 6:56 am

One thing that is OBVIOUS to me, based on the mixed bag of results people have after getting the veins opened up, is that there is much more to be done. I think the fight is really all about down which road do we go? I mean sure the genetic component, and the venous, and the immune all undoubtedly play a role, it's just which one will lead to a 'cure'? In the end it's all posturing for research dollars. This group fights to keep looking down this road, that group fights for the same thing to go down a different road. The bottom line is that CCSVI has re-opened the need to look down a different road than the one we've been stuck on for about 20 years and, if for nothing else, I applaud that aspect of the whole 'debate'. We all just want to get better, we all were tired of the same old drugs being tested in combination with whatever, and now I do believe we have a debate which will lead to more creativity. That right there is the rub. We now are not stuck in a rut only looking at ONE thing for helping people with MS. Halleluyah! (sp?)
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby Shannon » Fri Aug 12, 2011 7:08 am

NHE wrote:
se1956 wrote:(Same with smoking and lung cancer - smoking is not the cause of lung cancer, it is a major risk factor – the cause of lung cancer is some sort of cell dysfunction).


...cell dysfunction caused by inhaling known carcinogens!


NHE


I guess in this argument, CCSVI could be a known "MS-ogen."

Like many, I feel that the very bad fall that I took on the ice with a heavy backpack on my back, led directly in some way to my MS symptoms. It was within weeks or months that I went to the same ER with both of these events: The fall and then the upper body numbness.

My 2 lesions have only ever been at C4 and somewhere near C4. I would really like to have some sort of atlas realignment done, or upper cervical care. I also have a bulge at the base of my back, above my butt, which a spinal doc told me is simply adipose fat tissue. I am only 100 lbs. soaking wet, so I don't believe that one bit. I have thought for many years that it is a Tarlov Cyst (look that up), but I am under managed care with my insurance, so getting any of these maladies proven and treated is next to impossible. :evil:
Shannon
Family Elder
 
Posts: 148
Joined: Mon Sep 28, 2009 3:00 pm

Postby euphoniaa » Fri Aug 12, 2011 7:54 am

Loobie wrote:One thing that is OBVIOUS to me, based on the mixed bag of results people have after getting the veins opened up, is that there is much more to be done. I think the fight is really all about down which road do we go? I mean sure the genetic component, and the venous, and the immune all undoubtedly play a role, it's just which one will lead to a 'cure'? In the end it's all posturing for research dollars. This group fights to keep looking down this road, that group fights for the same thing to go down a different road. The bottom line is that CCSVI has re-opened the need to look down a different road than the one we've been stuck on for about 20 years and, if for nothing else, I applaud that aspect of the whole 'debate'. We all just want to get better, we all were tired of the same old drugs being tested in combination with whatever, and now I do believe we have a debate which will lead to more creativity. That right there is the rub. We now are not stuck in a rut only looking at ONE thing for helping people with MS. Halleluyah! (sp?)


Wow, Loobie, I like that! :) Thanks.

I especially like this part:
The bottom line is that CCSVI has re-opened the need to look down a different road than the one we've been stuck on for about 20 years and, if for nothing else, I applaud that aspect of the whole 'debate'. We all just want to get better, we all were tired of the same old drugs being tested in combination with whatever, and now I do believe we have a debate which will lead to more creativity.


When I first started reading about CCSVI, one of the most exciting things to me was that the discovery might lead researchers for ALL diseases to rethink their approach and be more creative. To me, MS has never even seemed like a "disease" in the first place, and it's also starting to look like CCSVI won't be the only answer either.

We need to keep our minds even more open than our veins. :D (Hey, wait! Maybe I'll make that my new signature line...)
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
User avatar
euphoniaa
Family Elder
 
Posts: 680
Joined: Sat Jul 15, 2006 3:00 pm
Location: midwest U.S.

Postby Cece » Fri Aug 12, 2011 9:09 am

Loobie wrote:One thing that is OBVIOUS to me, based on the mixed bag of results people have after getting the veins opened up, is that there is much more to be done.

Or maybe it needs to be done sooner? The results might be mixed in part because of the different degrees of permanent damage already done. We also may all have different immune systems that have reacted or over-reacted to the chronic state of neurodegeneration and generally ailing brains and easy access across the blood brain barrier to the brains. (Do we even call it a barrier in our cases? It practically has a welcome sign out.) Getting veins fixed at age 40 does not undo those 40 years of bad veins. Another complicating factor is that our veins are finicky and may not stay open, when opened.
The bottom line is that CCSVI has re-opened the need to look down a different road than the one we've been stuck on for about 20 years and, if for nothing else, I applaud that aspect of the whole 'debate'.

Very much agree with you here.
Perhaps the ms researchers have been suffering from 'satisfaction of search,' having settled on the autoimmune hypothesis and not even considering other information.... :D

Here is what Joan had to say over on CCSVI in ms facebook page:
<shortened url>
Cece
Family Elder
 
Posts: 8989
Joined: Mon Jan 04, 2010 4:00 pm

Postby civickiller » Fri Aug 12, 2011 9:51 am

i think since we already have ms, we may have to get ucc then ccsvi surgery. who knows maybe ucc will change our blood pressure enough to fix our valves and veins issue. Maybe we had ms so long its unrepairable, but i believe our body is majority of the time repairable

unless someone has or will beat me to it, ill keep getting ucc till im corrected then ccsvi surgery, hopefully i wont need it though
User avatar
civickiller
Family Elder
 
Posts: 555
Joined: Thu Feb 04, 2010 4:00 pm
Location: Hawaii

Postby MrSuccess » Fri Aug 12, 2011 9:58 am

thanks Civickiller - Dr. Poser was a neurologist . I do hope everyone here at TIMS ..... takes time to read about him.

here is what intrigues Mr. Success ...... are there two distinct types of CCSVI ? :idea: :idea: :idea: :?:

Internal CCSVI ......... and ............ External CCSVI ?

Internal CCSVI would be what Dr. Sclafani is finding with his IVUS work.
Flaps , closed valves .....

External CCSVI ...... would explain Dr.Poser's theory . I venture a guess .... muscles , tendons , displaced bones ..... anything that would crush or pinch veins ...... and thus ..... blood flow.... :idea:

either way ...... the results are the same ...... reduced bloodflow from the brain ........ which appears to trigger the immune system .... when the BBB is breached ........


It's as good a theory as any others ........




Mr.Success
User avatar
MrSuccess
Family Elder
 
Posts: 883
Joined: Fri Sep 18, 2009 3:00 pm

Postby Cece » Sun Aug 14, 2011 9:05 am

MrSuccess, yes, the term 'secondary CCSVI' was from Dr. Arata, to describe those external compressions. It is not always possible to treat, because there's nothing wrong inside the vein to treat, and if for example the vein is up against a bone, if you stent it, the bone will win. Or if it's up against the carotid artery, if you stent it, you could irritate the carotid. Ballooning compressions doesn't work, they just get compressed again. I don't know how often the doctors see these sorts of secondary CCSVI, I think it's relatively uncommon compared to our valve malformations and inside-the-vein abnormalities.

For this new study, researchers in Britain, Canada and a dozen other countries performed genome-wide scans on the DNA of 9,772 people with MS. They looked for genetic anomalies that didn't appear in the DNA of 17,376 healthy people without MS.

They discovered the MS patients had 29 genetic variations that other patients didn't have. They also confirmed 23 other genetic variations that had already been associated with MS. As well, the team identified five more associations that might be significant and that require further study.

One third of the genes identified have previously been implicated in playing a role in other autoimmune diseases such as Crohn's Disease and Type 1 diabetes, indicating that the same processes occur in more than one type of autoimmune disease.

http://tinyurl.com/3fys3gb

I had asked how they chose which genes to look at but in fact the net was cast genome-wide.
Cece
Family Elder
 
Posts: 8989
Joined: Mon Jan 04, 2010 4:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users