DrSclafani answers some questions

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

Postby Cece » Mon Jun 28, 2010 9:46 pm

Thanks DRsclafani...no letters after my name, alas...and I enjoy the back-and-forth too.
Last edited by Cece on Mon Jun 28, 2010 10:10 pm, edited 1 time in total.
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Re: CCSVI AND CD OF VENOGRAM

Postby girlgeek33 » Mon Jun 28, 2010 9:49 pm

drsclafani wrote:
I want to create a teaching atlas of the images of CCSVI. As long as i am grounded, i might as well make myself useful. Would you be interesting in sharing toward something like that?
Of course, there would be no identifying marks on images I put in the Atlas, no names, no dates, no hospital or doctor.. .Everything would be anonymous, unless you would like to be named as a contributor.


I sent you a CD with all of my tests. Feel free to use them if they are of any help to an atlas... I don't need to be named. :)

All the best to you Dr. S!!!!
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Postby marcstck » Mon Jun 28, 2010 10:31 pm

drsclafani wrote:
marcstck wrote:Very interesting. I was diagnosed with low thyroid function about two years before I was diagnosed with MS. Nothing like an elegant theory to clear things up...

Dr. S., will Holly call me regarding setting up a sonogram with Dr. Zinn?


marc
want to co-author an atlas on imaging of CCSVI?


Sure. Let's talk...
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hypoplastic jugular

Postby hwebb » Tue Jun 29, 2010 12:10 am

Hey Dr S/Marc,

I have an image or two which may be useful for the Atlas you will develop. My left jugular is hypoplastic (under-developed)...with a stenosis at the jugular bulb. My azygos is hypoplastic too. I have a more regular-looking stenosis down low in my right jugular (a normal-sized vein).

Anwyay, it seems a number of other TIMS people have similar images. Peaches1, DragonFly, and JoyisMyStrength to name a few.

Interestingly, JoyIsMyStrength has similar symptoms to me....a notable one being Transient Global Amnesia (TGA). There are a stack of papers on Pub-med, spanning the last 10 years or so, which implicate a stenosis at the jugular bulb with TGA.

I suspect your atlas concept may one day be expanded to provide a correlation between stenosis type/pattern and symptoms.

No question here - just a comment.

Helen
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Up Hill Battle

Postby Squeakycat » Tue Jun 29, 2010 12:16 am

It seems as though the US and Canadian MS Societies funding for CCSVI studies is aimed at putting a nail in the CCSVI coffin, once and for all.

Their results have already been previewed in the Dutch and Germany studies coming out of the world of neurology. If you don't follow the protocols, you won't find the problems and we can all go back to life with expensive drugs with awful side effects that do little to stop progression of this nasty disease.

Dr. Aaron Miller, chief scientific adviser to the U.S. National MS Society, makes it clear in the quote below that the rantings of IR's will not provide the science necessary to make CCSVI acceptable.

Meanwhile, the editor of the Canadian Medical Association journal warns against the dangers of treatment.

Dr. Paul Hebert, a critical care physician and editor-in-chief of the Canadian Medical Association Journal.

Though treatment advocates believe it is relatively risk-free, Hebert says manipulating fragile veins can be dangerous.

"We normally only dilate arteries. Dilating veins is highly experimental and the structures are so weak that people will die," he warns. "At some point it will happen because putting in vascular catheters is dangerous at the best of times."

Dr. Aaron Miller, head of the MS clinic at New York's Mount Sinai Hospital and chief scientific adviser to the U.S. National MS Society.

Could these unmonitored treatment trips lead to conclusive evidence? Miller suspects not.

"One would be dependent on the people doing the procedures to provide useful information. And the validity of the information provided by the people doing these procedures is not necessarily the kind of information that we would like from a scientific perspective."

Miller explains the procedures are mainly being done by interventional radiologists. They know about imaging vessels, but they may not know a lot about multiple sclerosis.

"So if they alone are going to provide the data, the data is of questionable validity. It would be comparable to my trying to produce credible information on some other subspecialty area that I don't have any expertise in."


<shortened url>


We are climbing Mount Everest!

And the question for Dr. S, is: With this kind of opposition, is it really possible to make any progress?
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Re: thyroid disease in MS

Postby simone » Tue Jun 29, 2010 1:05 am

drsclafani wrote:Will all the drama of last week, i forgot to bring up another concept that Paolo and Fabrizio brought up during my visit with them.

CCSVI causes cerebrospinal venous collateral flow. One of the major pathways for collaterals is just upstream to the most common area of obstruction, down low near the point wheree the jugular vein connects with the subclavian vein. Among the many prominent collaterals are veins running through and around the thyroid gland. Is it possible to get "multiple sclerosis" of the thyroid gland because of this excess blood in the area? The answer i got was that it is quite possible.

So can MSers who have low thyroid function chime in here? When did your thyroid problems surface?


Dr. Dake asked the same question and is finding that as well.
Was diagnosed with Hashimoto's about 2 or so years before
MS symptoms that went undiagnosed for about 7 years.
Thought to have "chronic fatigue" . Experienced intense mental fog.
Feel free to use my mrv ( lots of malformations ) and i don't care about anonymity. What a great project for a new medical book of real anatomic findings instead of another thousand pages of pharmacology.
Leonardo would have liked that.
:)
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Re: Up Hill Battle

Postby sbr487 » Tue Jun 29, 2010 1:22 am

Squeakycat wrote:It seems as though the US and Canadian MS Societies funding for CCSVI studies is aimed at putting a nail in the CCSVI coffin, once and for all.

Their results have already been previewed in the Dutch and Germany studies coming out of the world of neurology. If you don't follow the protocols, you won't find the problems and we can all go back to life with expensive drugs with awful side effects that do little to stop progression of this nasty disease.

Dr. Aaron Miller, chief scientific adviser to the U.S. National MS Society, makes it clear in the quote below that the rantings of IR's will not provide the science necessary to make CCSVI acceptable.

Meanwhile, the editor of the Canadian Medical Association journal warns against the dangers of treatment.

Dr. Paul Hebert, a critical care physician and editor-in-chief of the Canadian Medical Association Journal.

Though treatment advocates believe it is relatively risk-free, Hebert says manipulating fragile veins can be dangerous.

"We normally only dilate arteries. Dilating veins is highly experimental and the structures are so weak that people will die," he warns. "At some point it will happen because putting in vascular catheters is dangerous at the best of times."

Dr. Aaron Miller, head of the MS clinic at New York's Mount Sinai Hospital and chief scientific adviser to the U.S. National MS Society.

Could these unmonitored treatment trips lead to conclusive evidence? Miller suspects not.

"One would be dependent on the people doing the procedures to provide useful information. And the validity of the information provided by the people doing these procedures is not necessarily the kind of information that we would like from a scientific perspective."

Miller explains the procedures are mainly being done by interventional radiologists. They know about imaging vessels, but they may not know a lot about multiple sclerosis.

"So if they alone are going to provide the data, the data is of questionable validity. It would be comparable to my trying to produce credible information on some other subspecialty area that I don't have any expertise in."


<shortened url>


We are climbing Mount Everest!

And the question for Dr. S, is: With this kind of opposition, is it really possible to make any progress?


It would be rather naive to expect MSS to support CCSVI going by their stance throughout ... the sooner we get out of MSS rut, the better the chances of ccsvi ...
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Postby HappyPoet » Tue Jun 29, 2010 5:51 am

Dr. Sclafani,

You'll be writing "THE" first edition of the first-ever Teaching Atlas of CCSVI Images -- wow, what a fantastic contribution to the world of IR academic medicine--your atlas will be a wonderful legacy. SUNY Press? :)

If you'd like a copy of my CD (good examples of dural sinus malformations, IJV valve leaflets with "rapids" for flow) and copies of my IR reports (good examples of poorly written reports showing need for proper terminology), let me know.

Regarding your IRB application, you recently said, "I could try and get rejected again or i could try to accomodate their concerns." Does your atlas project mean you've decided which one you are going to pursue? Also, do you know yet how much money needs to be raised to maintain a fund for patients without health insurance or other means of paying for procedures?

Marc,

Thank you for saying to Dr. Sclafani, "Sure. Let's talk..." You'll make an excellent co-author! Your blog www.wheelchairkamikaze.com is terrific :)

~HP
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Re: Up Hill Battle

Postby girlgeek33 » Tue Jun 29, 2010 7:27 am

sbr487 wrote:
Squeakycat wrote:It seems as though the US and Canadian MS Societies funding for CCSVI studies is aimed at putting a nail in the CCSVI coffin, once and for all.
We are climbing Mount Everest!

And the question for Dr. S, is: With this kind of opposition, is it really possible to make any progress?


It would be rather naive to expect MSS to support CCSVI going by their stance throughout ... the sooner we get out of MSS rut, the better the chances of ccsvi ...


I'm not surprised at all. This isn't the first time the NMSS has shown it's true colors. Look at what they could do for LDN, and yet they've done nothing. They first came out against it, with force, and then when TIMS posted to counter the NMSS stance, they changed their tune but have done NOTHING to further LDN research or to make it an established treatment for MS. Even though it does work so much better for so many, with NO risks and NO needles at very low costs. So here is something else nonPharma up to help MSers and they do the same dance.

This is why we need heavy hitters like Dr Sclafani & Dr Dake (here in the US) to stay on track to counter the NMSS MonSter machine. This is going to be a fight, sadly, so whatever we can do Dr. S to help you get back on track with research, please let us do it! For your next submission to IRB, can there be any possible way to bring in some MSers that have been liberated to speak or write towards gaining approval. What fails to come up, it seems, is that this is such a relatively simple procedure to make such a big difference! They talk of IRB making sure the risk is worth the reward, well there are many of us that can speak first hand to how the reward is sooooo great! That has to count for something...
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Postby FlashHack » Tue Jun 29, 2010 8:12 am

marcstck wrote:
drsclafani wrote:
marcstck wrote:Very interesting. I was diagnosed with low thyroid function about two years before I was diagnosed with MS. Nothing like an elegant theory to clear things up...

Dr. S., will Holly call me regarding setting up a sonogram with Dr. Zinn?


marc
want to co-author an atlas on imaging of CCSVI?


Sure. Let's talk...
Fantastic. Is that lemonade I smell?
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Postby MS_mama » Tue Jun 29, 2010 8:32 am

Dr. S, could you elaborate or perhaps list some of the non-MS related possible complications of untreated venous blockages? And are these complications things that are documented in the literature (and therefore accepted by all IRs) or rather more complications that you personally have seen from you experience--in which case perhaps there will be differences of opinion between doctors on the issue.

Thanks in advance, and can't wait to see the dr S/Wheelchair Kamikaze collaborative work!
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby Drury » Tue Jun 29, 2010 9:07 am

Dr. S,

The first ever Teaching Atlas of CCSVI Images - as my daughter would say (She is on your waiting list) YOU ROCK!!!

Drury
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Postby coach » Tue Jun 29, 2010 9:14 am

Don't know if this will contribute anything to the discussion. Was first diagnosed with MS in 1984 after birth of my first child and a case of optic neuritis. Lab results from the ensuing LP had strong indicators for MS. Then asympotmatic for 14 years. Graves disease after birth of my second child. Treated with PTU instead of radioactive iodine. Eventually thyroid function returned to normal. Also I had a right temporal lobe area that was on the MRI I had at Stanford in november 09 that was not on my 2006 mri which was dx'd as a venous cavernoma. I had 2 stents at Stanford, one in the azygous and one in the left IJV below the clavicle.

My 22yr. old daughter had optic neuritis 6 months pp. She had a small hemangioma on right forearm as a child that was removed when she was 4. She did not have the gadolinium when she had the mri because she was a nursing mother at the time. The eye doctor was thinking ms, the neurologist said another mri down the road which might be more definitive. The optic neuritis has resolved about 95%. So I'm thinking based on my history and reading Dr. Ashton Embry's article regarding CCSVI in which he concludes that the condition is congenital that she might have gotten the "bad set of tires" from me. She has had no other symptoms. So not sure testing for CCSVI is warrated at this point. My thinking is that would come after a definite ms diagnosis.
Sent a copy of the mri to Dr. Dake at Stanford . He and a nerologist at Stanford both looked at it and could only see one area near the origination of the optic nerve that looked suspicious.

It's obvious from the posts on this THREAD that Dr. S has endeared
himself to the TIMS crowd and we have a great affection and appreciation for the time and knowledge he has invested here and were disappointed as well at the IRB's decision. Just reminded of Winston Churchill's words to the English people in WWII to "never, never, never give up".
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Re: Up Hill Battle

Postby fogdweller » Tue Jun 29, 2010 1:45 pm

Dr. Aaron Miller, head of the MS clinic at New York's Mount Sinai Hospital and chief scientific adviser to the U.S. National MS Society.

Could these unmonitored treatment trips lead to conclusive evidence? Miller suspects not.

"One would be dependent on the people doing the procedures to provide useful information.
...
if they alone are going to provide the data, the data is of questionable validity. It would be comparable to my trying to produce credible information on some other subspecialty area that I don't have any expertise in."


Who, pray tell, besides the people doing the procedure ever provide useful information? Isn't that the case in every published scientific experiment?

And the neurology community can hardly complain about experts in another field being relied upon when they (neurologists) are the ones trying to discredit CCVI, a vascular condition.
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Postby fogdweller » Tue Jun 29, 2010 1:50 pm

And my question to Dr. S is this. How common is angioplasty on veins? I have several different impressions from reading the posts on this and other threads.
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