The kinds of venous malformations that have been found

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

Postby Zeureka » Thu Feb 11, 2010 5:08 pm

mshusband wrote:I have a question ... I understand why Dake stopped treating people (if a clinical trial is what's next) ... but why did they stop testing people for CCSVI?

Like ... why couldn't someone call and go get tested by him?

Then ... they would at least have the information for the future ... or other doctors?

I agree. But guess the problem they encounter is that as soon as one has diagnosis then logically also wants the second step...but agree that even if intervention not possible is good to have for the future, so that first step done to move on as soon as intervention techniques will be more widely known and applied.

However, the current limit on intervention is the reason why often even a block on a non-invasive doppler exam is made.. this is indeed absurd. I personally made the experience that as soon as had the doppler diagnosis in hands it finally opened me the doors to get on a local list for follow-up of the problem and potential intervention (as simply the scientific proof of a veinous problem is then there!)
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Postby Zeureka » Thu Feb 11, 2010 5:20 pm

Mshusband: as regards ...or other doctors?

I think in Buffalo Zivadinov will now start offering the doppler - within maybe new research, but also outside the scope of a research project (think they said a CCSVI doppler-facility will be set up mid Feb?). He will however not offer intervention.

In case I'm wrong, am sure s.o. will help to correct me here...and sorry that answer again outside of the main thread theme (seems to be a weakness of mine :lol:)
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Postby bluesky63 » Thu Feb 11, 2010 6:06 pm

Hi ozark, :-)

I forgot to pick up my copy of the disc or I could post something here. I ended up getting lost on public transportation in the Bay Area. Now I'm still waiting to get it in the mail. :-)
Last edited by bluesky63 on Wed Mar 24, 2010 5:29 pm, edited 1 time in total.
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Postby SammyJo » Thu Feb 11, 2010 7:22 pm

I had had a combo, osseous impingement, and arterial compression.

Right & Left Internal Jugular Veins both pressed against cervical vertebrae bone (osseous impingement). Lower down the Left IJV was compressed by carotid artery.
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Postby ozarkcanoer » Thu Feb 11, 2010 7:35 pm

I just want to let everyone know that I have been trying to keep up with all your great posts and I have updated the list !! All comments and corrections are welcome.

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Postby Cece » Thu Feb 11, 2010 8:01 pm

One thing that strikes me about all these malformations is that there's not much that's under the patient's control. Diet and exercise are not going to lift a carotid artery away from a vein or change a "pancaked" vein. Maybe a chiropractor can help with cases of osseo infringement. Also can or should an arachnoid cyst be surgically removed? The inflammatory condition as cheer described is something new...maybe there is where the regimen to improve vein health makes a particularly strong impact. A missing jugular requires scientific advancements in possible replacement veins. I've read a report of this being done for the carotid artery using a section of artery from the leg, so this may be a possibility someday. Hopefully sooner rather than later....

This is a very interesting thread, I wish I were further along in the process and could describe my stenosis/stenoses as well.
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Postby bluesky63 » Thu Feb 11, 2010 9:34 pm

Cece, that's exactly right -- if the only thing we can control is our general health and our vascular health, then that's what we can concentrate on. One other interesting thing Dr. Dake and I talked about was the "thickness" of the blood, which we can affect to some degree. My d-dimer test was abnormal before I went. I had to go to the ER and get worked up for an embolism, TIAs, etc., and all that seemed clear.

But I was definitely having an MS flare-up. I think Dr. Dake was interested in tracking whether that might be one more thing that might be happening in people -- whether the d-dimer was elevated in people at times like that, reflecting "stickier" blood.

I had located at least one journal article that supported this hypothesis but then I could never find it again. It's an interesting theory, though, and could be part of the CCSVI story -- measuring d-dimer levels periodically to see if they correspond with disease activity.
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Postby mshusband » Fri Feb 12, 2010 9:34 am

BlueSky ... thickness of blood makes sense as well in regards to MS/CCSVI ... think about it ... MS is more prevalent further from the equator (i.e. further from warm weather). SO the blood gets thicker (why do you think older people move to Florida and say their blood thins out after living in the north all their lives) ... because it DOES happen.

Just sayin ...
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Postby tzootsi » Fri Feb 12, 2010 9:58 am

mshusband wrote:BlueSky ... thickness of blood makes sense as well in regards to MS/CCSVI ... think about it ... MS is more prevalent further from the equator (i.e. further from warm weather). SO the blood gets thicker (why do you think older people move to Florida and say their blood thins out after living in the north all their lives) ... because it DOES happen.

Just sayin ...


I believe that contrary to popular opinion, blood is thinner in cold climates to allow it to circulate easier thru cold extremities.
I also feel, like Ashton Embry, that diet modification will help by quieting the immune system, and improving circulation. However, I agree that fixing the blockage is the number one priority.
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Postby Bobbi » Fri Feb 12, 2010 10:22 am

Can anyone give me some advise on my findings since Canadian doctors (at least mine) are in some kind of denial.

Type of Procedure: Ultrasound: Bilateral non-invasive assessment veins. B-mode and duplex imaging were employed. Compression maneuvers were performed.
Diagnosis: RIGHT SIDE: The max transverse diameter of the internal jugular vein is 1.4 cm, proximally, 1.8 cm in mid portion and 1.2 cm distally. Non-occlusive thrombus (unobstructed).
LEFT SIDE: The max transverse diameter of the proximal internal jugular vein is 1.4 cm, in the mid portion .8 cm and in the distal part .8 cm. Narrowing of the left jugular with possible "calcuim" deposits.
My Summary: Dr would not comment on connection to CCSVI ... but to me it looks like my left jugular vein has narrowing and some blockage issues.
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Postby Ruthless67 » Tue Feb 23, 2010 4:37 pm

**bump**
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Postby Cece » Tue Feb 23, 2010 6:56 pm

Bobbi, you could be right about the left one being narrowed, it's hard to say. Maybe an MRV would help fill out the picture.
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Postby Brightspot » Wed Feb 24, 2010 12:25 am

Thanks for the great post. Appreciate your effort and the information.
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Postby lilsis » Mon Mar 08, 2010 11:00 am

Bobbi, here's a translation for you:

Diagnosis: RIGHT SIDE: The max transverse diameter of the internal jugular vein is 1.4 cm, proximally, 1.8 cm in mid portion and 1.2 cm distally. Non-occlusive thrombus (unobstructed).

Normally, distal means furthest away from the body, and proximal is closest to the body. So it would appear that it is 1.2cm closest to the skull, then it widens in the middle, and narrows again as it becomes closer to your collar bone. Non-occlusive thrombus means a clot that doesn't completely block the vein, there is still flow around it. Kind of like sludge sticking to the walls of a pipe. There is not enough information to say if it is on one side or wraps entirely around the vein wall.

LEFT SIDE: The max transverse diameter of the proximal internal jugular vein is 1.4 cm, in the mid portion .8 cm and in the distal part .8 cm. Narrowing of the left jugular with possible "calcuim" deposits.

Again, wide near the skull, then almost half the diameter through the mid and lower parts of the vein, this time they suppose it's calcium deposits and not a softer clot like in the other one. Ballooning may be dangerous here.

My mom was told Dr. Zamboni has begun vein replacement for people who are not candidates for angioplasty, so do not be discouraged, things are in the works to fix all problems.


My sister showed RIJ 25% the diameter of the left, along it's entire length
LIJ valve incompetence.
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Postby Mutley » Tue May 11, 2010 10:57 am

A significant number of these venous problems manifest themselves ‘inside’ the veins, and treatment options seem to be a mixture of angioplasty and/or stents typically dealt with by people with Vascular backgrounds, or Interventional Radiologists.

But I find myself wondering about the vein problems that are influenced by things that happen ‘outside’ of the vein.?

Surely Cerebral/Spinal outflow is just as serious when caused by veins being squashed or kinked externally, as it is when caused by a stenosis or narrowing happening inside the vein. People like Drs Dake/Simka/Zamboni etc seem to be concentrating on CCSVI when caused by things inside the vein so who are the people sorting out venous flow problems that are caused by factors outside the vein?

For instance, the sternocleidomastoid muscle in my neck has flattened my right IJV like a pancake, but a Vascular Surgeon or an Interventional Radiologist may not be the right person to sort it out (unless I specifically want to try and squeeze my muscles apart using a stent in my vein, which sounds decidedly unappealing)

I’ve read accounts of people having veins squashed by tumours, or pinched by bones and it seems to me that the people that would fix such problems are probably aligned to surgical disciplines. But I’m just guessing. I’ve not read anything on TIMS about such problems being dealt with yet, so who should I be talking to I wonder?
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