This Is MS Multiple Sclerosis Knowledge & Support Community

Jen and Michelle, it sounds like the two of you have come up with a "smoking gun". Great work connecting the dots.

NHE wrote:The following is a much better argument for getting them involved...

msh wrote:I went on to the NYU site and discovered some interesting things. Dr. Grossman and Dr. Joseph Herbert worked with Dr. Haacke and the others on the CCSVI paper.

Just for fun, I thought that I would look up the papers. This is what I found. Not exactly CCSVI, i.e., the papers are not looking at jugular or azygous veins, but they're certainly related.

Diminished visibility of cerebral venous vasculature in multiple sclerosis by susceptibility-weighted imaging at 3.0 Tesla.
J Magn Reson Imaging. 2009 May;29(5):1190-4.

• Multiple sclerosis (MS) is a disease of the central nervous system characterized by widespread demyelination, axonal loss and gliosis, and neurodegeneration; susceptibility-weighted imaging (SWI), through the use of phase information to enhance local susceptibility or T2* contrast, is a relatively new and simple MRI application that can directly image cerebral veins by exploiting venous blood oxygenation. Here, we use high-field SWI at 3.0 Tesla to image 15 patients with clinically definite relapsing-remitting MS and to assess cerebral venous oxygen level changes. We demonstrate significantly reduced visibility of periventricular white matter venous vasculature in patients as compared to control subjects, supporting the concept of a widespread hypometabolic MS disease process. SWI may afford a noninvasive and relatively simple method to assess venous oxygen saturation so as to closely monitor disease severity, progression, and response to therapy.

Characterizing iron deposition in multiple sclerosis lesions using susceptibility weighted imaging.
J Magn Reson Imaging. 2009 Mar;29(3):537-44.

• PURPOSE: To investigate whether the variable forms of putative iron deposition seen with susceptibility weighted imaging (SWI) will lead to a set of multiple sclerosis (MS) lesion characteristics different than that seen in conventional MR imaging. MATERIALS AND METHODS: Twenty-seven clinically definite MS patients underwent brain scans using magnetic resonance imaging including: pre- and postcontrast T1-weighted imaging, T2-weighted imaging, FLAIR, and SWI at 1.5 T, 3 T, and 4 T. MS lesions were identified separately in each imaging sequence. Lesions identified in SWI were reevaluated for their iron content using the SWI filtered phase images. RESULTS: There were a variety of new lesion characteristics identified by SWI, and these were classified into six types. A total of 75 lesions were seen only with conventional imaging, 143 only with SWI, and 204 by both. From the iron quantification measurements, a moderate linear correlation between signal intensity and iron content (phase) was established. CONCLUSION: The amount of iron deposition in the brain may serve as a surrogate biomarker for different MS lesion characteristics. SWI showed many lesions missed by conventional methods and six different lesion characteristics. SWI was particularly effective at recognizing the presence of iron in MS lesions and in the basal ganglia and pulvinar thalamus.

NHE

these research papers are definitely related to CCSVI-how can you say they are not? the premise is that the restricted blood flow is connected to the increased iron deposits. They found that using a 4 Tesla machine they picked up more info. Can you imagine if they had used the 7 Tesla? The connection with CCSVI is that the blood that is pooling in the brain or remaining there for longer periods of time is causing iron deposits and also that the lesions have a stronger blood supply. This is the groundwork for CCSVI Dx. How can you say it is not directly related. The fact that they weren't putting their own patients in for testing and that these findings weren't all over the place is nothing short of a disgrace.
They did all the preliminary work and just stopped short of imaging the actual occlusions. Now why is that?
My gripe with them is why aren't they doing the CCSVI imaging? Obviously they have the equipment and knowledge and are VERY VERY familiar with the work as they already worked with Dr. Haacke? It is not like they need everything explained to them. When I called and spoke with the radiology dept they knew what I was talking about and made like they didn't and that I should email them the info. The person I spoke to was one of the researchers (her name was on these papers). She made like she didn't knwo what I was talking about. Why do that??? Neither she nor Grossman has responded.
They deserve to be picketed.
Again: Diagnosis is patient's right, treatment is their choice.
They have no right to withhold information. They called a press conference when the 7 Tesla machine was installed. They should have done the same for these findings and should be offering all the diagnositc testing and treatment.
I am not going to make excuses for them. As a nurse I find this behavior and their lack of caring and manners inexcusable.
michele

msh wrote:these research papers are definitely related to CCSVI-how can you say they are not?

I didn't say that. I said...

NHE wrote:Not exactly CCSVI, i.e., the papers are not looking at jugular or azygous veins, but they're certainly related.

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msh wrote:the premise is that the restricted blood flow is connected to the increased iron deposits.

Dr. Zamboni's papers defined CCSVI by looking at stenoses in the jugular and azygous veins. The May 2009 paper on which Dr. Grossman and Dr. Herbert collaborated with Dr. Haacke discussed decreased venous vasculature specifically in the brain. This would result in decreased blood perfusion which would potentially lead to hypoxia which is the same thing that Cheerleader has discussed. So yes, these papers are related to CCSVI. There's no question about that.

Moreover, Dr. Simka has written that reduced shear stress from the reduced blood flow due to stenosis in the cerebrospinal veins, the juglars or azygous, would lead to greater permeability of the blood brain barrier which would make it easier for white blood cells to cross over into the brain. Taking the Grossman, Herbert, Haacke, et al. paper into account, the problem with the blood brain barrier may be more widespread as there is decreased venous perfusion in the brain in addition to the jugulars and azygous.

NHE

msh-
At the Bologna conference last SEMPTEMBER, Dr. Mark Haacke referred to these papers in his powerpoint presentation, and stated that he believed all of his imaging research into MS brains finally made sense within the CCSVI paradigm. This is why he has become such an outspoken advocate for diagnosis and testing, and is setting up CCSVI/MS diagnostic centers around the world.

But CCSVI is BRAND NEW. It is not as though the NYU researchers knew about Zamboni's work until very recently. The NYU research was done before Dr. Zamboni's research was published. Dr. Haacke is at the forefront. He is a true innovator. The other doctors may or may not follow.

There is no grand conspiracy or cover-up. It is just that there is now a convergence of recent research, and it seems to corroborate with Dr. Zamboni's findings.

Dr. Zamboni does not refer to diffuse cerebral hypoxia in his research. This is something I brought to Dr. Haacke recently, because of my husband's MS, and research on slowed perfusion and transit time I have been following since his diagnosis. Dr. Haacke will be adding the BOLD MRI technology to test oxygenation levels in MS brains.

The thing to remember is that this is all new research, aided by Dr. Haacke's recent inventions of SWI and BOLD technology and the higher tesla machines. It may make sense to us, as armchair researchers, because we see the puzzle pieces fitting together- but for neurologists who have spent their lives comprehending one set of facts, this paradigm shift is not as easy-
cheer

Hi Cheerleader,
My only gripe-and it is a big one-is that the NYU MDs that did this research have state of the art equipment. My friend's neuro is Dr. Herbert and he didn't even bother to tell him about the screening. What we all are forgetting is long before this research is published it is already circulating around the medical community (I am a nurse and know this well). If NYU has the equipment and the expertise of researchers on staff (Grossman and Herbert were just 2, there are more from NYU, including one I spoke to when I called who made like she didn't know what I was talking about! she told me to email the details of what I wanted! that was a joke) then it should be made known and an established protocol should be implemented.
They held a press conference for the installation of the 7 Tesla machine in 2004. They should hold a press conference now to say they are doing the CCSVI screening.
Perhaps we just should all go there and picket and inundate Siemens (the manufacturer) with calls, faxes, and emails.
Perhaps Mayor Bloomberg would like a parade of MSers and their families on the lawn of Gracie Mansion?
Diagnosis is a patient's right, treatment is the choice. If we can't get them to move on diagnosis there can be no treatment.
Michele

Michelle- you misunderstand...the research the NYU neuros did was not CCSVI related. They scanned brains, not veins. The tesla machines are being used for brain MRIs, not vein MRVS. They may have the equipment, software and the knowledge, but they obviously do not have the interest. They honestly do not know what you are talking about, because MRVs are done by vascular doctors.

Go to vascular doctors, not neuros. That's what I did at Stanford, people did in Poland, France, around the globe. Dr. Zamboni is a vascular doctor. It is a rare neuro who is interested in scanning veins OUTSIDE the brain. That's the problem...the jugular is extracranial.
cheer

They worked with HAACKE on the research as well as the researchers from SUNY Buffalo. It is radiologists who perform all MRIs regardless of who ordered them. It is radiologists who make anecdotal observations and can pull a vast amount of data together and then refer it back to neuro, vascular, MDs, etc. A lot of observations and research gets started due to observations from ground level health professionals (RNs, Radiologists, pharmacists, etc) who can see things that perhaps MDs don't. If Grossman, Herbert, Haacke and others cooperated on this research don't you think they tossed around related info? of course they did.
My point is that if they are cooperating on one area and NYU has the equipment then they can do a lot more than they are doing.
And yes, I do know what I am talking about, I can admit to being a nurse and making observations to MDs about plenty that was later validated.
We are all part of one big ongoing study: the do nothing and get nowhere study, because if things don't start moving people are just getting worse and dying.
You can disagree, I will keep plugging away and so will others.
michele

OK....I'll try one more time. I'm on your side. I'm a good guy, really. Ask anyone around here...I started the CCSVI stuff last year. Truly. I know you're a nurse, I respect your opinion. I'm just trying to say that you may have more luck finding diagnostic help outside the neurological community.

cheer

ok, now I understand your point.
I will chew off anyone's ear that will listen. Dr. Grossman out of NYU is a neuroradiologist. I got my ENT to write an Rx for me for an MRA. I don't turn anyone down. I don't have MS (friends and family do) just non MS lesions and possible venous occlusion-similar to CCSVI, may be the same diagnostics.
thanks,
Michele

Hi MSH,

I got my ENT to write an Rx for me for an MRA.

It's great to hear that you have doctors who are willing to help you in your quest for more diagnostic information. However, I don't think that an MRA is what you want to check for CCSVI related problems. Dr. Dake and Haacke are using MRV which is magnetic resonance venography. This specifically examines the veins while I believe that an MRA will look at the arteries.

NHE

thanks, I am trying to find out the exact difference between an MRA and MRV. While I don't have MS (they thought I did and my family and friends do so I am their advocate and source of info) an occlusion in either my carotid or jugulars can cause the symptoms I am having (sharp radiating pain in to the left side of my head/ear). A preliminary sono of my neck may have turned up something (my friend's husband-an MD-has a sono tech in his office and they did it for me as a favor) so I am waiting to hear the report tomorrow and their input. If MRA does arteries and MRV does veins how can I do both? At this point it may be either. The literature is showing that an MRA will also bring up veins.
Anyone have input on this? I will try to get my friend's husband to ask his associates (cardiologists and radiologists in FL) for their help. I hope they got a clear pic-if not they can image again but anything more (contrast) will require a formal Rx and a radiology facility.
My MD also suggested going to the ER for a work up if the pain gets too severe which it does at times (imagine an icepick going thru your ear in to your brain!).
Michele RN

msh wrote:I just emailed Dr. Grossman at NYU to see what they are doing about screening for CCSVI as they have a tesla 7 machine and I found out while doing research on the NYU site that he collaborated with Dr. Haacke on his research so he should be very familiar with it. As soon as I hear back I will post. Trust me, if I don't get an email I will call, fax, or show up there personally! They have state of the art equipment and I want my family and friends tested! NOW!
Michele RN

I'm new to this site, so if you could help me in the direction of finding information about e-mail addresses to Dr. Grossman and others that are doing research with CCSVI I would be eternally grateful.

My wife is the one suffering with this horrible desease, and is in the SP stage. After learning about CCSVI we contacted our Neurologist to ask him about the procedure and the preliminary testing and he poopooed the whole thing. So much for transparency and support.

I've been searching around the web and have downloaded about 60 pages of subject matter regarding CCSVI, but with very little information about how you can get to these people that are doing the actual research or the procedure.

However, I did get in touch with Dr. Dake at Stanford, but was told that they are no longer doing the actual procedure at present, after preforming some 50 +/- procedures. But they did say that early in 2010 they will be starting a clinical trial. What that indicates to me is that someone got to them (Big Pharma or the MS Society) and shut them down until a full trial is performed. That will probably take at least 2 years, maybe longer.

I will go anywhere, do anything it takes to get to the bottom of this so that my wife and/or anybody else can be rid of this insidious desease.

Scraps-
welcome. Sorry for your wife's suffering. The doctors mentioned on this thread are not testing for CCSVI...they collaborated with Dr. Mark Haacke on other research. Dr. Haacke is setting up diagnostic facilities for CCSVI-but not treatment. He is a diagnostician and inventor.

The best bet is to go to your local universities and try to speak directly to the vascular/endovascular/interventional radiology departments. Bring them all the research. That's what I did at Stanford last spring, and folks are doing around the world. Read all the threads here on Poland (Dr. Simka)- he is now the only doctor openly taking MS patients and testing and treating MS patients.
best,
cheer

msh wrote

thanks, I am trying to find out the exact difference between an MRA and MRV

Magnetic Resonance Angiography (MRA) is a type of MRI scan that looks at the flow of blood vessels that feed your brain. (arteries)

Magnetic Resonance Venography (MRV) is a type of MRI scan that looks at blood vessels and structures that return blood to the heart. (veins)

Sharon