NIH

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NIH

Postby kaykayaa » Thu Jul 16, 2009 11:44 am

Hey everyone.

For the past year, I've been part of an MS screening protocol at NIH--I go a couple of times a year for MRIs, exams and to pester the very nice neuro there with my questions. This time I came armed with Zamboni et al. I was worried she would shut me right down--but in fact, she was familiar with the study and said they are watching it with interest and had even gone as far as to find out if they could run a similar study there at NIH (turns out they can't because they don't have the correct Doppler equipment--gee--your tax dollars NOT at work folks.) She is, without putting words in her mouth, watchful but cautious about Zamboni's work because it is so new and his results haven't been duplicated in large numbers elsewhere. (Not sure that's actually correct--research mavens out there can weigh in!!) Her objection was a little silly actually--she felt it was impossible to be getting something that was turning up in so many MSers!!! (I refrained from saying--but isn't that a good thing? To finally find a common element??) She also said it would be important for other groups to duplicate Z's results because MRV is notoriously faulty and prone to artifacts. It's much more accurate for MRA because the blood flow in the arteries is more robust. But, she did not dismiss it out of hand. In fact, when I brought up my TMJ, wisdom teeth, headache history she said she would look into getting an MRV and felt that my history merited it. (In my case, my TMJ was so bad that the mandibular joint would lock and pop out...not fun) So go figure...next trip I may be getting the works...However, she did say, even if we do see something with the jugular, what do you do with that info?

So I brought up Dr. Dake--who she also knew about (I guess these research neuros are actually researching!). But she was more cautious on that front--not willing to go out on a limb and say this might actually be a viable intervention and stressed that the surgery carried real risks. She felt like there needed to be real studies with controls (I know--how do you do controls on a surgical procedure? I didn't ask that....) and that more time had to pass. More studies need to be published. More science and not just anecdotal evidence. Yadda-yadda. But as someone else said on here--what happens when all those with MS are just "out of wait and see." A change is coming, right?

So, a mixed bag of results. NIH takes a pretty conventional approach--no surprise there. But I take some comfort in knowing that her team is listening to the tom-toms at least. And if I get an MRV, that's great (I did mention that I thought there might be special settings they would need....and she said she would look those up). Wouldn't that be cool if a couple of blocked jugs were right there staring them in the face??!!!

Anyway, I thought I would share with the group. And to all of you at Stanford, my heart and my prayers go out to you. You are so brave--willing to go where no one has gone before. God bless.
KKA
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Postby peekaboo » Thu Jul 16, 2009 12:34 pm

Hi KKa -

Did you know that NIH has a couple of clinical trails going and atleast one of them is using MRV? You could look for them on Clinicaltrails.gov.

You wrote:
She also said it would be important for other groups to duplicate Z's results because MRV is notoriously faulty and prone to artifacts.


HUH? the MRV's I've seen are as good as black & white...obvious venous abnormalties. I'm not so sure what she meant by artifacts? Do you know?

BTW happy de-lurking :D
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Postby mrhodes40 » Thu Jul 16, 2009 1:24 pm

his results haven't been duplicated in large numbers elsewhere. (

His results have only been duplicated in one small study so far outside of Ferrara, but it is important to stress that theZamboni team has seen nearly 850 people in the total studies to date. Most were evaluated with DOPPLER showing reflux, but 65 in yhe Dec 08 paper and all of the liberation patients, 100, had venograms and stenosis.

Venograms not MRV.

Her objection was a little silly actually--she felt it was impossible to be getting something that was turning up in so many MSers!!!


Hmmmm. Seems to me all cancer patients have tumors.......... :wink:

She also said it would be important for other groups to duplicate Z's results because MRV is notoriously faulty and prone to artifacts.


He did dopplers and venograms not MRV. Dr Dake is doing MRV and then venogram in the OR if a stenosis on MRV allows surgical interventions. No one is basing anything on MRV alone.

stressed that the surgery carried real risks. She felt like there needed to be real studies with controls (I know--how do you do controls on a surgical procedure? I didn't ask that....) and that more time had to pass
I actually agree with this it DOES carry real risk and the final best protocol is not yet known. It may be 10 years from now those of us that got these first few treatments will learn we got an inferior version vs what is available later after more study. It is experimental at this point.

what happens when all those with MS are just "out of wait and see."
Those people like myself may be happy to step up and get an experimental treatment even knowing the risks. For some of us the risks are to do this and get what you get.....or do nothing and let MS take you where it will because you are out of options otherwise. That is me.

The neurology and medical community at large does not like to talk about the existence of those of us in this boat, we are kind of invisible.

I traded the certainty of decline for a possibility and some surgical risk, and felt it a good trade in my case....
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Re: NIH

Postby cheerleader » Thu Jul 16, 2009 1:45 pm

kaykayaa wrote:However, she did say, even if we do see something with the jugular, what do you do with that info?
KKA


Kay...why don't you ask her to speak to the vascular/endovascular department at NIH to get the answer to that question. They can call Dr. Dake for further information.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Thu Jul 16, 2009 1:54 pm

Excellent point Cheer! Force them to interact with other specialties...
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby kaykayaa » Thu Jul 16, 2009 5:33 pm

You're right Cheer--I should ask for that if we get to that point. But am feeling a little dumb though that MRV is not what's actually called for in this case. I need to get my tests straight! (Thanks MR for your help!! And I hope you didn't think I was belittling what you and others have done. I am so in awe of what you are doing and grateful for the risks you are taking. I don't think that came through in my post. Just want you to know that when I'm in your shoes..and who knows when that will be cuz this disease is so weird...the tears in my eyes will be from gratitude for what all of you have dared to do!!!)

So, when I talk to her again, I'll be sure to mention venography. As for MRV protocol, I'll look into it--but right now dh is whining at me to put overtired kiddo to bed. Gotta go.
Blessings.
K
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Postby peekaboo » Thu Jul 16, 2009 5:37 pm

hang in there :!:
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Postby marcstck » Fri Jul 17, 2009 4:40 pm

I've also been seen at the NIH, and I believe I've seen the same Dr. that kaykayaa has seen (is it Dr. C.?)

As a matter of fact, I saw this NIH Dr. yesterday, and discussed CCSVI with her. As was stated earlier, she is interested but has many questions. She is very aware of the Zamboni research, and is also aware of the work that Dr. Dake is doing.

She stressed about the research has not been duplicated by any other group, and that until it is it would be hard to make any determination about it. The fact that MS is such a heterogeneous disease makes it highly unlikely that you could find 100% of any sign or symptom across the spectrum of MS patients. Furthermore, she stated that it's likely that a sizable percentage of MS patients are misdiagnosed, further making the 100% result somewhat suspect.

Dr. C. also told me that MRV's are notoriously prone to artifacting, and that CT venography is less prone to operator deficiencies. This has been reiterated to me by Dr. Dake, who spoke with my primary care physician directly. Based on Dr. Dake's advice, my PCP has now set me up to have a CT venography this coming Thursday, and I believe Dr. Dake has spoken to the head of the radiology department at the hospital at which it will be done. Dr. C. asked that I get her the results of the venogram.

Dr. C., the NIH neurologist, also told me that before any verdict could be reached on the success of interventional surgery in regards to CCSVI, there would need to be verifiable MRI proof of a reduction in inflammation in patients with inflammatory disease. In other words, patients who displayed enhancement before the surgery would be expected to be nonenhancing postsurgery if CCSVI was a major player in the inflammatory process. This makes perfect sense.

In regards to her needing to consult with the vascular experts at NIH, she is in constant contact with members of many different disciplines at the facility. My own case is so complicated, that several different specialties have been called in for consultation, and the beauty of NIH is the synergy created by having researchers of many different disciplines congregated at this one site. The knee-jerk disparaging of anybody who calls the CCSVI theory in question really needs to be tempered on this thread. The doctors at the NIH are by far the most open-minded I've encountered in my many medical experiences.

Dr. C. and I talked about CCSVI for probably about 15 minutes, and she's quite knowledgeable on the subject. She called the research "exciting", and thought it would be terrific if it did indeed pan out, even if only for a subset of MS patients. Among the reasons we discussed for being skeptical include the clear genetic links associated with MS, the geographic distribution of MS, and the existence of MS clusters.

In any event, I more impressed with the NIH that I have been with any other medical facility I've ever visited, and the tenor of the place is completely different than most other medical facilities, because the NIH's sole purpose for existence is research. The fact that they are gearing up to do their own study on CCSVI speaks volumes about the quality of work being done there...
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Postby Lyon » Fri Jul 17, 2009 5:42 pm

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Postby kaykayaa » Fri Jul 17, 2009 6:15 pm

Hey marc--I Pm'd you but wanted to ask real quick--did you really get the impression that they are gearing up to do CCSVI studies there? Because she told me they didn't have the Doppler specialist needed and said that almost anybody else does--every research university in the country is what she said--but not NIH. Maybe they're using separate tests. I made it clear that I would very much want to participate in any protocol regarding CCSVI and she merely made a note and didn't say anything specific.

I agree with you about NIH being special. I'm really grateful to be there.
K
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Postby marcstck » Fri Jul 17, 2009 6:30 pm

kaykayaa wrote:Hey marc--I Pm'd you but wanted to ask real quick--did you really get the impression that they are gearing up to do CCSVI studies there? Because she told me they didn't have the Doppler specialist needed and said that almost anybody else does--every research university in the country is what she said--but not NIH. Maybe they're using separate tests. I made it clear that I would very much want to participate in any protocol regarding CCSVI and she merely made a note and didn't say anything specific.

I agree with you about NIH being special. I'm really grateful to be there.
K


I maybe misremembering, but I'm pretty sure she said they were going to be getting the correct equipment to do the research. She didn't put a timeframe on it, though.

She did say she be interested in seeing the results of my CT venography...
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Postby mrhodes40 » Sat Jul 18, 2009 11:39 am

(Thanks MR for your help!! And I hope you didn't think I was belittling what you and others have done.
Aww, heck no! You are totally welcome and I did not take any offense at all. Sorry my post was "terse" no smileys etc. I am supposed to be on bedrest and I had to hurry...i didn't read it over for possible "tone" and should have; it was too spare

Because it was obvious early on that the MS disease process causes neurological symptoms and those symptoms are the source of complaint for MS patients, the research and treatment of MS became the exclusive realm of neurology. After 150 years of unsuccessful research it seems that it's time that science recognizes that research into the MS disease process shouldn't be the exclusive domain of neurology.

I agree and apparently this researcher/MD does too...Did you see this?
http://www.hedweb.com/bgcharlton/funding.html

It seems that there is no single dominant model for therapeutic discovery, rather the implication is that the best results arise from simultaneously pursuing a wide range of investigative strategies [15]. We suggest that excessive monolithic funding of the basic-to-applied model may be stifling a diversity of potentially more fruitful research strategies which at present are disregarded because they are not amenable to the Big Science model. Other approaches, being small scale and cheaper, or dependent on the accidents of individual skill and clinical observation, are less prestigious and less influential.


Clinical science is like Dr Dake seeing stenosis with collateral circulation and saying "That can be fixed, I don't know if it will change MS but it can be fixed..."
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby Lyon » Sat Jul 18, 2009 12:10 pm

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Postby mrhodes40 » Sat Jul 18, 2009 5:18 pm

alternating with periods of putting that gained knowledge to practical uses, although maybe I'm wrong.

Hi Bob,
Actually his point was excessive funding results in focus on the what he termed "big science" such as molecular biology (the lesions project or the genome etc--science he calls "basic") at the expense of other methods of scientific inquiry.

Essentially there is an erroneous assumption that by looking harder and deeper at the basic you will eventually have a breakthrough for disease.

He says that microbiology successes early in the 20th century resulted in excessive excitement, investment and bloated funding that has resulted in the research bubble we are in today. The results of this bloated system are disappointingly poor, the system is inefficient and results are dwindling, yet claims about how great the findings are and their usefulness are vastly exaggerated compared to their real value.

When he talks about using other lines of inquiry like patient oriented research he is talking about shelving "big science" (I'll use the term too for clarity) and looking at the PATIENT to see what can be seen. He in fact says we will be forced into this as the bubble bursts and funding dries up making other ways of doing research financially attractive. He says this will be good for us as the dominance of big science has stifled innovation that would be meaningful for patient oucomes.

That was the point.

Here are some examples of what MS big science has brought us:

1. there are 4 lesions types according to one group
---but some other groups dispute that and did not reproduce 4 types,no body knows what type anyone has and no drugs are targeted to a patient based on type.

2. there is some increase in DRb1 0602
---but not all patients have that, it just appears more commonly in MS, furthermore, most people with that genetic don't have MS at all

3. there is a latitude gradient and some vitamin D issues
----but not every patient has these specific issues it is just a tendency and trend overall. For example no one is told they don't have MS if their d levels are fine or of they are born in fall in the south to an outdoorsy woman.

This is what I mean in that this information has not made the jump to clinical practice. These big science facts are essentially useless in the clinical setting....they are useless in other words to the patient or the doctor treating the patient.

It is another model of research altogether to take a patient look at them and try to treat what you see in patient oriented research.

In the case of CCSVI, what is seen and provable is stenosis with collateral circulation; that can be changed with an intervention that returns the circulation to normal.

Treating that stenosis is based on known physiological principles, for example that collateral circulation is a well known parameter that indicates that normal circulatory capacity is overloaded and intervention is justified. Add to that physical fact the knowledge that stenosis in a femoral vein causes lesions and tissue changes in the foot to further justify the approach as reasonable.

Now you have treating a patient based on what is physically there in the individual with a goal to return normal physiological function.

The point of the article to me was that constantly insisting that only "big science" qualifies as good science or indeed even is a science is a mistake. There are many ways to make scientific inquiry.

The author offered the 12 acknowledged greatest medical achievements of the last century and few of them used any of what he was calling big science, most were patient oriented research (trying something to see if it worked because it made medical sense) or serendipitous accidents (like Fleming leaving a petri dish of germs out open overnight accidentally and discovering penicillin).

He was suggesting that we ought to broaden our scope if we want to be successful to include other avenues of exploration. I think the NIH could help by looking at other models for how we address disease.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby peekaboo » Sat Jul 18, 2009 5:31 pm

Back to NIH...

Ummmm I think that NIH is prepping for the CCSVI studies due to their 2 clinical trials regarding MRV's

Yes i agree that NIH is a fantastic org. i have a bro-inlaw that works w/them. and i have used them for Mental health rehab training from my past working life.
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