Curious findings of these Pioneers as they explore!!!!

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

Curious findings of these Pioneers as they explore!!!!

Postby MegansMom » Tue Oct 05, 2010 3:38 pm

These are just some interesting points I have picked up as I watch the researchers lecture describe their findings or read about them.

It sure does explain a lot of the reasons for MS to be variable.

I cannot remember who described this- it was either Simka or the Dr from Kuwait or maybe it was Sclafani but it was on a YouTube video recently describing their experiences to each other and to IRs I believe- the person was describing the variety of the causative lesions that they have encountered- - they all took turns describing what they had found, valves, webs, etc,

anyway- he described the lesion as "flap-like" and said it was like a garbage pail lid-
he said when he snaked the balloon catheter up it push the lid (flap) up and when he pulled back it fell down almost occluding the vein-

I was sort of awe- struck thinking of all these kinds of valves, and flaps, and anomalies- they seemed to be very varied- in both the locations, structure, etc.

If a flapping valve acts like a door------ and intermittently was flapped open and then flapped closed. This might explain how some symptoms could come and go. I

I was also struck by the wide variety of the location of the lesions and the number of varieties. In Dr Simka's most recent powerpoint about procedure safety he even had diagrams and numbers:

Lets see I think there were 330 people total 97 % had blockages

120 had 1 IJV affected
184 had 2 IJV affected
7 had 1 IJV AND the Azygos
10 had Both IJV AND Azygos
1 had 1IJV AND his Left Brachiocephalic vein
1 had 1IJV and his Brachiocephalic
1 had Azygos

THIS maybe why we see different degrees of disability and different amounts of accummulating iron and varying ages of onset and various rates of progression

For more please read Simka's Power Point



I find this all so fascinating. Also since the congenital venous malformations are so varied type and locations)the genes causing them would not be the same genes.
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby Jugular » Tue Oct 05, 2010 7:20 pm

I would like to argue that there is less chaos in CCSVI induced MS. While all the different combinations of restrictions and defects can explain the grab bag of symptoms that is MS. At least it can claim that lesions follow along channels and tributaries of the blood.

I prefer that to autoimmune theory which says that the lesions can appear anywhere in the brain or CNS following no pattern at all. What causes this? They do not know? Why do the symptoms appear as they do? They cannot say. Is there anything that can be done? <shoulder shrug>
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Postby smokey » Tue Oct 05, 2010 7:56 pm

Hear hear!
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Postby Cece » Tue Oct 05, 2010 8:23 pm

I think to find only 18 azygous stenoses in 330 MSers makes me suspect that the azygous is being undertreated. How does that compare that to Zamboni's numbers or Sinan's or other docs?
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Postby MegansMom » Wed Oct 06, 2010 9:20 am

Cece wrote:I think to find only 18 azygous stenoses in 330 MSers makes me suspect that the azygous is being undertreated. How does that compare that to Zamboni's numbers or Sinan's or other docs?



I don't know Cece - I thought it was odd too( My daughter was a type A -which is Azygos + 1 IJV). I do not think that the doppler and MRI visualize the Azygos well (per Haacke) and therefore I agree with you. I think most likely some are being under treated. I'll bet they can miss flapping anomalies-and maybe other types.

Its interesting to see the variety though.

I believe that they now recommend that the contrast be diluted so the illusive anomalies can show themselves thru the more dilute contrast. I'll bet that there are many IRs that are using full strength contrast which could hide some of these things they are finding.

Over time we will see them get better and better at these diagnostics and venogram techniques along with the angioplasty for these specific findings. Maybe other tools will be used such as cautery or new tools invented ?


I also want to point out that the location and extent of the blockages (%) and the number of them would definitely impact flow and hypoxemia....along with turbulance and flow direction which would all make the deposition of iron and hypoxic areas vary from person to person- thus causing different symptoms and disease courses.

I also wonder.......if the "scar" lesions could be the bodies way of creating a dam to prevent ingress. Sort of like hardened sandbagging the path to protect it? I wonder if what they thought were scars were the body's way of keeping the reverse flow from entering the CSF? The lesions are in the reverse flow path.....

Just me thinking out loud.
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby lucky125 » Thu Oct 07, 2010 6:38 pm

Cat,

At the Down State Symposium in July Dr. Sinan from Kuwait explained that he ballooned EVERY azygos. He uses the balloon as a diagnostic tool.

I had my procedure with Dr. Haskal 4 days after the conference. He was in attendance, too. I don't know if he was influenced by Sinan, or if he also balloons every azygos, but he ballooned mine even though the dye did not show any obvious problems.

He inflated it in 3 locations, then dragged the balloon thru all 3: the right side, through the arch and down the left. Not a comfortable sensation, but satisfying nonetheless. If there was something to get, he definitely got it!

Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby bluesky63 » Sun Oct 10, 2010 6:12 am

The breakdown is fascinating, all the more so if it does actually continue to correlate with the extent of disability in real, live people with MS, instead of, say, mice in wheelchairs.

For instance, I have had a much more disabling course than most people, and I see that apparently my "pattern" is unusual. This appears to make sense! I am amazed. Can any of us imagine something that *makes sense* in MS without the convoluted logic of "well, wood floats . . . and a duck floats . . . and she weighs the same as the duck . . . so she's a witch! She's a witch! Burn her!" :-)

But where are the stats on the other veins?

Love the conversations! :-)
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Postby ozarkcanoer » Sun Oct 10, 2010 9:05 am

Interesting stats on the breakdown of stenosis. I was treated in Baltimore and Dr H discovered problems in both of my IJVs and my azygos. Does that mean I am in the minority ? I was diagnosed late in life and my symptoms are "mild" (whatever that means), but I have 40 some lesions. I just can't get my head around this disease no matter what I do !!! I have a reduction in my pain and fatigue and I am happy.

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Postby Cece » Sun Oct 10, 2010 10:55 am

bluesky, it has been wonderful this last year having a theory like CCSVI that actually explains some of the previously unexplainables.

I know others have speculated too that azygous or azygous plus May Thurner or lumber vein issues leads to spinal cord damage and a quicker progression through the EDSS. That IJV blockages, especially if both are blocked, leads to more of the cogfog and brain lesions and optic neuritis.
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Postby MegansMom » Wed Oct 13, 2010 4:42 am

Jugular wrote:I would like to argue that there is less chaos in CCSVI induced MS. While all the different combinations of restrictions and defects can explain the grab bag of symptoms that is MS. At least it can claim that lesions follow along channels and tributaries of the blood.

I prefer that to autoimmune theory which says that the lesions can appear anywhere in the brain or CNS following no pattern at all. What causes this? They do not know? Why do the symptoms appear as they do? They cannot say. Is there anything that can be done? <shoulder shrug>


My understanding is that the refluxed flow is different according to what veins are blocked and just how severely they are blocked. The MS brain lesions are definitely aligned with that individuals refluxed flow would vary. This is not chaotically but could vary drastically.

The causes of symptoms can be multiple-

Some are symptoms of MS and some are symptoms of CCSVI- and they ARE connected.

Some, like brain "fog", headache, fatigue and cognitive (memory, thinking, etc) these symptoms can be attributed to hypoxemia- This is a low grade hypoxemia-Oxygen level low enough to cause symptoms but not low enough to make you pass out. Think of it like being in a room with toxic paint and no fresh air- But remember if the blood oxygen level is measured at the wrist ( artery) it will be normal, the brain O2 level would be lower, due to slow emptying. Also there can lower than normal brain glucose too. No food for cells- starvation of cells = impairment and damage.

Motor symptoms can be caused by multiple causes too- impaired oxygen levels of the spinal cord (hypoxemia) and/or lower glucose(hypoglycemia) than normal- so the fuel is impaired for function of the parts. It does seem that more motor symptoms would be aligned with blocked Azygos but its not that simple.

Then you have the actual lesions- these lesions are from damage from shear stress on the epithelium of the venules( vein walls are designed for flow going one way -"OUT") -inflammation occurs,iron is left (the iron is from Red Blood Cells) and and consequently demyelination. The role of the immune system is not clearly understood at this point.

It could be altered simply by being chronically overworked. Certain parts of the WBC's (the immune systems parts) are turned on into"overdrive" due to the body signaling need. This is seen in multiple trauma, severe infection, burns, etc. (These examples are of acute need not chronic need). The immune system cells ( all different kinds of WBCs) job is to identify an invader or poison or waste or debris and remove it. Next it prepares it for healing (scar formation to prevent further "invasion") .

In CCSVI thats a tall order......there are damaged cells, iron ( also seen as ferritin and hemosiderin) and other wastes and they get made and try to do their job and sometimes in the brain they too stick around too long. But remember they are designed to work well with normal oxygen levels and normal glucose levels of a healthy draining vascular system not one with an impaired "rinse cycle". The immune system can not function normally in an impaired environment.

If the CCSVI ( impaired emptying of the used blood from the brain) occurs from birth ( as it is theorized)then that the problems start then( at birth), and then depending on the location, and severity of the blockages the amount of damage would vary drastically Zamboni saw that this was true. The sickest people had the worst blockages. In CCSVI patients there is such a wide variety this explains why MS has such variety too.

The lesions could be minimal or diffuse, slow to progress or very fast. The list of symptoms would be pages. And it is. So are the songs of MS.

CCSVI ties it all together. It connects the plumbing to the wiring. Not all of the details are proven yet but we are closer to the answers and I believe in my lifetime they will be.

I beg to differ with you but the immune system does not "go rogue" without a cause. Its a system based on signals and reactions. In MS we never see a raised ANA as in all the other autoimmune illnesses such as Lupus, Rheumatoid disease, etc. They tested every organism and no one in 70 years+ could find a "trigger".

So I do not believe it is an Autoimmune disease, It has an immune component as a reaction to an impaired venous drainage. If you stop the CCSVI ( by opening the veins) I'll bet the immune system will return to normal over time. Also remyelinazation can occur but takes many months

I agree to disagree with you Jugular. And we will see in short order. I can't wait.
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby NotFound » Thu Oct 14, 2010 10:30 pm

Cece wrote:I think to find only 18 azygous stenoses in 330 MSers makes me suspect that the azygous is being undertreated. How does that compare that to Zamboni's numbers or Sinan's or other docs?


Agreed. Doctors themselves admit that azygous is hard to image.
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Re: Reflux and sheer stress

Postby NHE » Fri Oct 15, 2010 2:50 am

MegansMom wrote:Then you have the actual lesions- these lesions are from damage from shear stress on the epithelium of the venules (vein walls are designed for flow going one way -"OUT") -inflammation occurs, iron is left (the iron is from Red Blood Cells) and and consequently demyelination. The role of the immune system is not clearly understood at this point.


Simka has discussed that it is the loss of shear stress during reflux that increases blood brain barrier permeability.

Here is a link to the Brenner and Simka letters to JNNP regarding Zamboni's paper. http://jnnp.bmj.com/content/80/4/392/reply#jnnp_el_4236

In addition, this abstract reviews similar material.

My interpretation of Simka's letter to JNNP...
NHE wrote:Simka's letter in a nutshell... Endothelial cells are the cells that line the blood vessels. In the brain, the endothelial cells make up the blood brain barrier. When blood flows past the endothelial cells, the cells experience shear stress. In response to this stress, the cells upregulate the proteins that make the connections between them stronger, i.e., the statement about tight junctions. Stronger tight junctions help the blood brain barrier limit what can pass between the endothelial cells from the blood to the brain, e.g., the white blood cells of the immune system. Simka's point appeared to be that with reduced blood flow seen in CCSVI in MS patients, the endothelial cells will not experience as much shear stress and will therefore have weaker tight junctions between them leading to increased permeability of the blood brain barrier and that this change in the blood brain barrier may be a contributing factor to the development of MS. In addition, Simka noted that low shear stress upregulates the protein, ICAM-1, that's used by leukocytes to cross the blood brain barrier. This is like a double edged sword against the blood brain barrier, i.e., not only is it more permeable but the adhesion molecules needed by the immune system cells to cross the blood brain barrier are more abundant (that's like opening all the windows in your house just a bit and then putting signs out for the burglars). Simka also proposed that he thought that surgical intervention was a good idea.


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Hemi Azygos not mentioned

Postby MarkW » Fri Oct 15, 2010 3:48 am

I had stenoses in 4 veins:
- Azygos
- Hemi azygos
- Left IJV
- Right IJV
8O

Add to this list Dr Simka's info (is he a Prof ?):
- Left Brachiocephalic vein
- Right Brachiocephalic vein

Prof Sclafani also mentioned Iliac vein (now that is a big pipe). :?

Add to these 7 places to look for stenoses, all the different types of stenosis. Its a long diagnosis procedure just to find and image the veins involved. Then there is balloon venoplasty to do.

I am very happy that Mr K did 3 hours work on me. :D

PwMS need a list of of the possibilites for types and locations of stenoses. Then our venograms will be meaningful if a little longer and more complex.

Explaining how these stenoses relate to types of MS will be much later research. I suggest that it is much less important for pwMS than obtaining a complete venogram. I hope some of the leading researchers will document 'what to look for and where' very soon. :wink:

We probably need a sticky called 'Types and Positions of Stenoses'. Just a thought for the moderators.

Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Cece » Fri Oct 15, 2010 7:05 am

Or a FAQ sticky with "Types and positions of stenoses" in the FAQ. The stickies are outdated and excessive....
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