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From the large attendance and new doctors and new research discussed at ISNVD last week, it appears that there is a growing interest in studying the impaired venous systems and hypoperfusion found in pwMS.

Here are two examples of high-profile US neuroscientists looking at CCSVI:

One of the new doctors looking into CCSVI and the connection to MS is Dr. Bruce Trapp, chairman of the Department of Neurosciences at the Cleveland Clinic. From the Dana Foundation, a write up on MS research in 2010 which features Dr. Trapp-

Dr. Trapp is an innovator--

Trapp was the lead author of a 1998 article in the New England Journal of Medicine that transformed thinking about MS, which up to that time was thought to affect only myelin. He showed that MS also damages the nerve fibers themselves, which probably accounts for the severe long-term disability that afflicts some patients....

And if the past decade is any indication, the years ahead will bring much more effective treatments, according to Trapp.

“I don’t see a cure until we know the cause, and we don’t know the cause,” he said. “But we are making strides. What we’ve accomplished in the last ten years has been remarkable.

And what Dr. Trapp is now studying is how MS looks to be a disease of hypoxic injury to axons which precedes loss of myelin. This is why he is interested in looking at CCSVI, and this is what he spoke about in Bologna.

Dr. Berislav Zlokovic is Director of Neurodegenerative and Vascular Brain Disorders at the University of Rochester (Jeff and my alma mater, Eastman, is part of the U of R) and I have corresponded with him since 2008 and my first endothelial research. I had read his work in my alumni newsletters, and was fascinated to see his research into the brain's endothelium and neurovascular disease.

Dr. Zlokovic delivered the keynote speech at the conference on the role of the vascular system in neurodegenerative disease. He is very interested in CCSVI studies, and understands the mechanism of injury behind venous insufficiency, the BBB and disruption of tight junctions.

The blood-brain barrier (BBB) is a highly specialized brain endothelial structure of the fully differentiated neurovascular system. In concert with pericytes, astrocytes, and microglia, the BBB separates components of the circulating blood from neurons. Moreover, the BBB maintains the chemical composition of the neuronal “milieu,” which is required for proper functioning of neuronal circuits, synaptic transmission, synaptic remodeling, angiogenesis, and neurogenesis in the adult brain. BBB breakdown, due to disruption of the tight junctions, altered transport of molecules between blood and brain and brain and blood, aberrant angiogenesis, vessel regression, brain hypoperfusion, and inflammatory responses, may initiate and/or contribute to a “vicious circle” of the disease process, resulting in progressive synaptic and neuronal dysfunction and loss in disorders such as Alzheimer's disease, Parkinson's disease, amyotrophic lateral sclerosis, multiple sclerosis, and others. These findings support developments of new therapeutic approaches for chronic neurodegenerative disorders directed at the BBB and other nonneuronal cells of the neurovascular unit.

http://www.cell.com/neuron/abstract/S08 ... %2900034-2

Here, again, is the link to the abstracts from the ISNVD. There is much excitement in the neurovascular community, and I believe these new scientists will bring even more understanding and healing.

http://ccsvism.xoom.it/Convegno_ISNVD.html
onward!
cheer

I would say they don't come much 'heavier' than docs from the Cleveland Clinic. This is exactly what my rant was just about, we are finding out new stuff every day and the theory is gaining traction. I pray to God that it won't be long before a big ol' trial is conducted. I suppose guys like this putting weight behind it is what we need! It seems to be gaining exponential momentum, eh?!? Man, that is good to hear, how it's 'breaking out' of the Zamboni, Dake, Haacke, et al circuit! I'm excited to see where this goes.

Loobie wrote:I would say they don't come much 'heavier' than docs from the Cleveland Clinic. This is exactly what my rant was just about, we are finding out new stuff every day and the theory is gaining traction. I pray to God that it won't be long before a big ol' trial is conducted. I suppose guys like this putting weight behind it is what we need! It seems to be gaining exponential momentum, eh?!? Man, that is good to hear, how it's 'breaking out' of the Zamboni, Dake, Haacke, et al circuit! I'm excited to see where this goes.

lyon wrote:In all seriousness, it's clear to everyone except the most hardened CCSVI zealots that the theory of CCSVI has started circling the drain.......I think "all over but the crying" is the correct term.

Agree with your rant, Lew...coming on here and arguing with each other isn't accomplishing anything. If anything, more specialists are becoming interested, as they see the connections to their discoveries in MS research and that of Dr. Zamboni. And yes, this will lead to more studies. In the meantime, if people wish to know if they have a venous malformation that can be looked at and potentilaly treated by a local doctor, covered by their insurance as central venous stenosis--that should be their right. Jeff was not treated for MS, he had a venous malformation. And he feels better since it was treated.
cheer

Joan could you check out the first link? It says page not found

..

Yes, that's the same Bruce Trapp, a researcher who changed the paradigm in 1998 regarding axonal damage before myelin degredation in MS...when all the researchers were claiming MS was a disease of the myelin--- who also said--

"I don't see a cure until we know the cause, and we don't know the cause."

It appears he is now interested in CCSVI, as his most recent published research, since that paper with Dr. Khan and Dr. Freedman, is in hypoxic injury in MS.

So is Dr. Constantino Iadecola, head neurobiologist at Cornell University, who presented at the ISNVD on vascular disregulation and iron deposition in neurodegenerative disease.

These doctors appear to be less concerned with right or wrong or whose team they are on--instead they are addressing what they are seeing in their own research and sharing it with colleagues.

There was no crying in Bologna last week. Nothing went down any drain. From all reports I've received, including a nice note from Dr. Zlokovik, it was an inspiring and energetic discussion among researchers. And the numbers of doctors involved continues to grow.
Next stop, Chicago and SIR.
cheer

Dr. Trapp's work on the hypoxic axonal injury in MS is extremely interesting. I posted the abstract over in the ISNVD thread. It's been amazing to see the increase in attention and awareness and focus on CCSVI in the medical community. It was very different just one year ago.

Loobie wrote:I would say they don't come much 'heavier' than docs from the Cleveland Clinic. This is exactly what my rant was just about, we are finding out new stuff every day and the theory is gaining traction. I pray to God that it won't be long before a big ol' trial is conducted. I suppose guys like this putting weight behind it is what we need! It seems to be gaining exponential momentum, eh?!? Man, that is good to hear, how it's 'breaking out' of the Zamboni, Dake, Haacke, et al circuit! I'm excited to see where this goes.

I am just as excited as you are. "Research" into the micro-cellular issues and cellular biology seems to be gaining momentum on this side of the ocean too.

Breaking out of the circuit is very important. For cancer therapies, the inter-disciplinary exchange seems to be the normal thing to do. For instance, while some cancer medications have may have adverse effects on the heart, the oncologist consults the cardiologist. The protocol is there, the practice is there, the pattern and behaviour is there.

This is all a matter of cultural preparation. I am sure the social fora like this have their role to play, to help build the bridges and avoid the pitfalls of collective decisionmaking such as groupthink (just see the initial response of the world of neurology to ccsvi ...)

I share the hope with you that it won't be long before a big ol' trial is conducted, involving also the top endocrinologists of this world.

"resulting in progressive synaptic and neuronal dysfunction and loss in disorders such as Alzheimer's disease, Parkinson's disease, amyotrophic lateral sclerosis, multiple sclerosis, and others."

I know a Dr who wrote a book called the anatomical causes of Alzheimer's, Parkinson's, and Multiple Sclerosis"

but with the whole title, "The Downside of Upright Posture: the anatomical causes of Alzheimer's, Parkinson's, and Multiple Sclerosis". what dont wanna look at it anymore, close minded much

are they looking at his book? wheres the new research, the new ideas even though this isnt a new idea. or it will be to them since they dont know about it

civickiller wrote:
are they looking at his book? wheres the new research, the new ideas even though this isnt a new idea. or it will be to them since they dont know about it

Hi Civic--
I know...I read Dr. Flanagan's thread and have read about yours and others wonderful success with NUCCA. Dr. Flanagan is certainly welcome to join the ISNVD and share his research. Dr. Zamboni is very open to postural affects on blood flow, and many of the doctors are interested in the physiological influence of structure on cerebral blood flow.

I'm not even a doctor, just a caregiver, and I wrote Dr. Schelling a couple years ago and he put me in touch with Dr. Zamboni. Here's the thing...these doctors don't know about each other unless they publish and/or reach out to each other. It was Dr. Schelling writing Dr. Zamboni an e-mail some 15 years ago that started all of this. It was me e-mailing Dr. Cooke at Stanford. We can't just sit in our corners and expect notice...we have to reach out and make connections. If a theory falls in the forest....
cheer

Leonard---you are so right. Interdisciplinary is the key. Bringing specialists together to discuss is what will change paradigms.
cheer

cheerleader wrote:Yes, that's the same Bruce Trapp, a researcher who changed the paradigm in 1998 regarding axonal damage before myelin degredation in MS...when all the researchers were claiming MS was a disease of the myelin---

Very interesting. I need to do some more background reading. I have been maintaining that the disease is not primarily autoimmunity, and not primarily an attack by the C cells on the myelin, but that the C cells were there in thier usual role of cleaning up celular debris after cell damage, an inflamatory event. Sure the C cells weren't supposed to be there and were only in the CSF because of a leaky BBB, but that was a different problem and an autoimmune attack was not going on.

On a related note, I see that ECTRIMS today gave Dr. Steinman from Stanford the Charcot award, primarily for his work in the autoimmune research and with EAE model to develop natiluzimab. Not sure I agree with that. However, I am just a PWMS and most of my speculations are just that, speculations.