Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby mrhodes40 » Mon Apr 27, 2009 12:45 pm

Ditto! We appreciate that you are under restrictions and confidentiality and can't share much as one of the "Liberation 100", but boy! What a great bit of encouragement!

82 degree heat is bad news for me................ my that is good news that heat bothers you less
:D 8) :D
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Postby Loobie » Mon Apr 27, 2009 1:41 pm

Wow,

This sounds awesome.
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Postby chrishasms » Mon Apr 27, 2009 4:25 pm

How cool is it to hear from someone who has done it!
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Postby Loobie » Mon Apr 27, 2009 4:34 pm

Very! Kind of like when I was following you through your page!
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Postby cheerleader » Mon Apr 27, 2009 6:38 pm

We’re at the airport heading home. Had a terrific exam with Dr. Michael Dake at Stanford. What a great doctor and human being. We’re very happy with the team at Stanford.

Jeff has stenosis and blockage in both internal jugular veins, very high up, almost at his jaw. Dr. Dake believes this is why Jeff’s numerous lesions are cerebral, and hs MS has manifested in fatigue and depression first. He couldn’t believe the amount of lesions Jeff had, and his limited disabilities. Dr. Dake had MRV’s done...a magnetic viewing of the veins, without any invasion or needles- instead of venography. Very cool technology, and no radiation. We could look on his computer screen and see the blockage. We also saw all the squiggly collaterol veins that have formed in Jeff’s neck, to try and take the blood back to the heart around the blockage. Dake will be performing endovascular surgery on Jeff in the next month- it will be an outpatient procedure. He called it a no-brainer and can’t wait to see how Jeff feels after-

Dr. Dake met with Dr, Zamboni in London at the Charing Cross symposium, heard him speak, met with him privately, and he believes this is the real deal. He will look at other MS patients who are interested in being tested for his research. He recommends calling this an exam to rule out venous occlusion, as indicated by headache and edema- for insurance purposes. No need to mention MS. He needs other patients to test so he can write up the research in the US. He is very excited, and enjoys being a maverick. He was proud to tell us that the other docs were scratching their heads when he explained what Jeff was there for.

Dake believes that every MS patient will show a different pattern of stenosis...he said Jeff’s was not really documented by Zamboni (both jugulars with high stenosis and collateral veins) and that the MRVs allowed him to see more than the simple doppler test. He believes, like Zamboni, the connection to MS patients in venous insufficiency. The MRVs are more complex, and need a vascular doc there to advise the tech as to the dye and angles for examining.

We’re exhausted, but elated. He told Jeff he married well. Thanks again to dignan for turning us on to this research. Boy, do I love the internet. More when we get home-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Mon Apr 27, 2009 7:34 pm

Wow! What a great outcome !!

Dr. Dake had MRV’s done...a magnetic viewing of the veins, without any invasion or needles- instead of venography


Totally awesome development there. Is he feeling there is no azygos involvement then? nothing further down at all?

Dake will be performing endovascular surgery on Jeff in the next month- it will be an outpatient procedure. He called it a no-brainer and can’t wait to see how Jeff feels after-

yeah on that Woooohoooo!

no brainer


This is the main point of all this research in my mind: these stenoses (blockages) exist and they are NOT benign nor are they some side issue. These are in the circulation DOWNSTREAM from the brain; below it, where the veins are traying to drain the blood away. The blood backs up to the brain and makes the area congested. There is no way that "white matter" anything can cause this, but a stenosis like this can cause lesions behind it (he brain is behind it), just like it does in the legs.

I want to point out because Cheer didn't that Michael Dake one of the very VERY top vascular doctors in the US and arguably in the world. He gave several presentations at this year's worldwide vascular syposium. A Very well published and very well respected doctor.

His support is an important endorsement of the paradigm.

MEET DR DAKE

STANFORD OFFICESWow, look at this man's list of published works on this link!

Cheer hit the jackpot!!! Yeah Cheer! I am so happy for all of us.

When we were talking about contacting physicians at university vascular departments and asking for assessment this is exactly what was hoped for: a major player in the field evaluating it and finding it exciting.
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Postby cheerleader » Mon Apr 27, 2009 9:34 pm

mrhodes40 wrote:Totally awesome development there. Is he feeling there is no azygos involvement then? nothing further down at all?


We're home. Dake looked at all of Jeff's spine and saw the azygos vein. No blockage or lesions any further down than the cervical spine. Dake saw a large lesion directly parallel to Jeff's jugular blockage in the cervical spine at the level of his jaw...but that was as far south as his stenosis and lesions went. Dake said this is not coincidental. He also said that he thinks every MS patient's level of stenosis, lesions and disability will be different. The only common denominator will be venous blockage and insufficiency.
nighty night!
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Terry » Tue Apr 28, 2009 6:19 am

There is no way that "white matter" anything can cause this, but a stenosis like this can cause lesions behind it (he brain is behind it), just like it does in the legs.


I hope you are correct. I'd sure like to move on.

Cheer, congrats to you and Jeff. Fingers crossed.

Terry
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Postby AndrewKFletcher » Tue Apr 28, 2009 7:11 am

Cheer did you talk to Mr Dake about IBT and show him the photographs of Varicose vein improvements using IBT?
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Postby cheerleader » Tue Apr 28, 2009 7:32 am

Dr. Dake used MRV- magnetic resonance venography. This is a much safer way to see the veins and stenosis, and allowed us to skip the TCD doppler step and go straight to the veins.

The clinical applications of MRV include diagnosis of deep venous thrombosis, for which MRV is the “new gold standard,” evaluation of chest and upper extremity veins for venous access, differentiating bland from tumor thrombus, diagnosis of superior vena caval syndrome, identification of superior vena caval invasion or encasement by lung or mediastinal tumors, diagnosis of the Budd-Chiari syndrome, diagnosis of caval anomalies such as persistent left superior vena cava and interrupted inferior vena cava, and identification of the presence and cause of obstruction or occlusion of the brachiocephalic, subclavian, and jugular veins.

Two MR techniques used for venous imaging include two-dimensional (2D) time-of-flight (TOF) MR angiography and three-dimensional (3D) gadolinium enhanced gradient-recalled (GRE) imaging. TOF is a widely used, noninvasive technique used for the evaluation of the venous system. However, due to saturation and flow effects, which may result in non-diagnostic studies, three-dimensional (3D) gadolinium enhanced gradient-recalled (GRE) imaging may be used for problem solving. Alternatively, may centers, including our institution, now forgo TOF and go directly to a 3D contrast-enhanced approach.


This is from the New York University MRI site, so NYU is a place to go on the east coast.

Dr. Dake used gadolinium enhancement, and then had the scans downloaded onto his computer, where we saw Jeff's complete venous system from top to bottom.

Both of Jeff's jugular veins stopped at the jaw/cervical neck area. One side was worse, and had lots of collateral veins sprouting out. The other side had a narrowing, and that's the side Dr. Dake is putting the stent in. He said that side will be successful in creating venous drainage for Jeff.

Time for a grass roots effort to locate and contact docs who understand this new technology and are willing to look for "venous occlusion" in MS patients. Dr. Dake believes this will be the name for what we now call "MS"- that the demyelination is a result of an a priori venous obstruction.

(Andrew...we had an hour and a half with Dr. Dake after the tests, and spent it on Jeff's particular case and Dr. Zamboni's research- I mentioned IBT and my supplement program, and Dr. Dake said that Jeff's stenosis was caused by the muscles in his neck, NOT coagulation or circulation issues. Perhaps a birth defect, perhaps from his career as a trumpet player. The only answer for Jeff is stents....but Dr. Dake also said this disease will need to be treated on a case by case basis. This is a fingerprint disease.)

Dr. Dake has spent time with Dr. Zamboni, and seen some filmed results of patients after the endovascular treatment. He said the results were "astounding"- and this was why he was so excited to perform the treatment and see how Jeff felt afterwards. As Wobbly has been hinting at, this procedure provides healing and relief.

Hope this helps. Any questions I can answer, let me know-
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby peekaboo » Tue Apr 28, 2009 7:40 am

Great going Cheer (& Jeff) this is terrific news. and yes jeff did marry well :wink:

He will look at other MS patients who are interested in being tested for his research.


Did dr dake say how he was going to recruit other ms'rs? Will he consider zamboni's groupies ( affectionate word used by msrhodes)? how may we contact him? I have kin out that way. my nephew is a prof at stanford (whole different field computer theory) and an X brother-in law prof of biology and ofcourse by eldest sister. where i could use as support, (room & board & taxi)

Why will the out patient surgery be a month away?

cheer wrote
Thanks again to dignan for turning us on to this research.

Ditto!


msrhodes wrote:

STANFORD OFFICESWow, look at this man's list of published works on this link!

Cheer hit the jackpot!!! Yeah Cheer! I am so happy for all of us.


couldn't say it any better! Holly
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Postby cheerleader » Tue Apr 28, 2009 7:56 am

Hi Holly-
The reason the surgery is a month away is because of my husband's work schedule. He had to get back to LA today, and has lots going on. Dr. Dake was ready to go whenever.

I asked Dr. Dake point blank if I could announce his readiness to see MS patients, and he said "Yes!" Call his office at Stanford, speak to his assistant Angela and set up your appointment. Maybe, if indicated, he could do your procedure while you're there visiting your nephew. The weather's really nice out here now :) That said, let's not bother the good doc unless you know you have the time and resources to get out to Palo Alto. He's a really busy man, and I want to keep him fighting the good fight.
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby chrishasms » Tue Apr 28, 2009 8:09 am

OK my wife is ready to go to Cali for the first time in our life. I am not however lol.

Can you please please please Cheer call that doctor and see if he has any colleagues in Colorado he could recommend for me?

If not can you email me his telephone number so I can ask them?

I can't believe it. So simple.

The funny thing is I can totally understand how something like this could set off the autoimmune side of things. The body knows there is something wrong but I don't think it really knows or understands so it starts to go crazy. I bet the body actually see's the resulting lesions as the enemy and maybe that is what starts the other side of MS.

Cheer I need a number! lol
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Postby peekaboo » Tue Apr 28, 2009 8:13 am

That said, let's not bother the good doc unless you know you have the time and resources to get out to Palo Alto

10 4 little buddy :)
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Postby chrishasms » Tue Apr 28, 2009 8:19 am

I do I just don't wanna.
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