Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby mrhodes40 » Mon Jan 05, 2009 8:27 am

Great information Cur-o! I am glad you shared it. I'm impressed you are down to the level of knowing which ultrasound to use! Man, I feel really lucky you are on it!

In the same vein of sharing I will say that I chose a local vascular person and sent a request asking the person be willing receive my literature packet, which I had printed at my local printer's. I decided the best way to choose a person was to look for someone at my nearest big University's vascular department that had published papers on vascular issues that were related to the stuff we are interested in.

TO check the publications list for the person I
1. Got the name
2. Went to the "google scholar" search engine
3. entered the name and bingo a list of that person's published papers comes up.

I had two possibilities, one clearly had papers on both doppler studies and vascular issues; that's the person I sent the request to. I found the email on one of the publications. The other guy was into neuro stuff, but on a line of stem cell and regenerative medicine; his thing seems to be stem cell manipulation. That guy I will want to know a little later.....
Wish me luck!
marie
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Postby Lyon » Mon Jan 05, 2009 9:11 am

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Postby mrhodes40 » Mon Jan 05, 2009 11:51 am

LOL! I am very interested in stem cells. If you give them to stroke survivors even 6 years later they get some improvements. I expect we will find a new age of regenerative medicine is on our doorstep.

http://www3.interscience.wiley.com/jour ... 1&SRETRY=0

and another

http://www.neurology.org/cgi/content/abstract/55/4/565

early days on that, but it's coming. If MS can be stopped, completely, then the possiblities are really astonishing.
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Postby CureOrBust » Mon Jan 05, 2009 4:29 pm

mrhodes40 wrote:I'm impressed you are down to the level of knowing which ultrasound to use!
ahhhh... don't get too impressed, I do not "KNOW" for certain. I simply chose a machine that seems to do it all, and is the latest machine / "top of the line" from a major producer (Phillips Medical). If this machine can not perform these tests, I can't see many alternative options to getting the tests performed on myself.

I also noticed that when they sent me a list of people who have this machine, the guy who said he could not perform the tests in his clinic, was not on the list.

Has anyone got a date for a test organised yet?
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Postby mrhodes40 » Mon Jan 05, 2009 5:04 pm

Has anyone got a date for a test organised yet?


Well, I keep checking my email every 30 minutes to see if the vascular guy has written back, but that does not seem to be making him any faster. I don't have even an "OK, come on in yet" ...... :wink:

Cur-o did you already see the vascular guy or are your tests being ordered by your primary?
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Postby CureOrBust » Wed Jan 07, 2009 2:29 am

mrhodes40 wrote:Cur-o did you already see the vascular guy or are your tests being ordered by your primary?
By "Primary" i am guessing you mean my GP? as I do not see my neuro except yearly, if that.

Yes, my GP provided me a referral directly for the tests (do not pass go, do not see a vascular specialist).

And an update, so far:
For the lab I am referred to, I have spoke to a sonographer (face to face on the 1st Monday they were open for the year), but she would like to speak to one of the Vascular doctors in the clinic. These guys will not be back in the office until next week. So that lab is "on hold" till about mid next week.

I sent the list of tests to another lab, but their Sonographer is not back till this Friday. So they are "on hold" till the end of the week.

I sent the list of tests to a third lab, and they basically said no, but gave me an inroad into the sonography lab within a hospital. After being passed between different sonography sections (eg baby, cardiac... and finally vascular). I spoke with a very knowledgeable woman. She was the hospitals vascular sonographer.

I sent her the list of tests, and called her an hour later. She didn't have a chance to read it (just the list of tests, as in pg8 of Zamgboni's article). She grabbed it off the Fax and read it while I was on the phone.
She said that the second test was the one I would have problems getting performed. The reason being that it required ultrasound through the skull to reach the three veins listed; ie internal cerebral vein, basal vein of Rosenthal, great vein of Galen. So "Reflux in the DCVs" may be difficult to asses.

I asked her about the other tests, and she had no concerns for the others.

She asked me where I was referred to, and when I told her, she said the sonographer at that clinic was very capable. However, after talking a little further, it became clear that they had two sonographers at the clinic, with the other more concerned with cardiac type of doppler investigations.
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Postby sou » Thu Jan 08, 2009 5:12 am

Hi all.

I have found this article stating that MS relapses are somehow localized.

BACKGROUND: Demyelinating events in relapsing-remitting multiple sclerosis (RRMS) can involve several locations in the central nervous system. We sought to determine if initial clinical demyelinating event (IDE) location predicts subsequent clinical relapse locations in early RRMS. METHODS: We identified all RRMS patients from two large MS clinics who were seen within one year of disease onset. Logistic regression was performed with the outcome defined as the second or third exacerbation location and the predictor defined as IDE +/- second event location. RESULTS: 195 patients with at least two clinical exacerbations were identified. There was an increased odds of a patient's second relapse occurring in the spinal cord if the IDE was in the spinal cord (OR=3.79, 95% CI [2.06, 7.00], p<0.001. There was more than a six-fold increase in the odds of a patient's second relapse occurring in the optic nerve if the IDE was in the optic nerve (OR=6.18, 95% CI [2.90, 13.18], p<0.001). These associations remained similar after adjusting for treatment and patient characteristics. If the IDE and second event were both in the same location (spinal cord, optic nerve, or brainstem/cerebellum), the third event was likely to remain in that location. CONCLUSION: Patients with RRMS have relatively localized clinical relapses. It remains to be determined if genetic or biologic processes are responsible for this pattern.

PMID: 19066192 [PubMed - as supplied by publisher]


Could this be because blocked veins are more likely to cause demyelination around them? Or, it could be not...

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby mrhodes40 » Thu Jan 08, 2009 8:31 am

Sou, I think you are right it does seem to support the idea. a venous problem is one reason why a certain area would be targeted again, but if we are saying MS is autoimmune it is hard to see why it would go to the same area but not the same lesion.
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Postby sou » Thu Jan 08, 2009 9:34 am

Hi.

Sometimes older lesions reactivate. They can be seen as hyperintense rings on MRI when gadolinium is used.

Everyone 's immune system constructs thousands of auto-reactive B cells daily. But it is only in MSers that they really cause trouble. And, additionally to this, they do have the tendency to attack very specific sites. Well, isn't this quite impossible to happen, provided that MS is directly autoimmune and not indirectly, as described by the Zamboni study?

sou
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Postby mrhodes40 » Thu Jan 08, 2009 10:00 am

Zamboni in his 2006 paper "the Big Idea" proposed that MS lesions are like venous ulcers in the legs. He mentions several similarities in the lesions themselves like iron deposits and MMp9.

here's a blurb on venous ulcers from Wiki...

http://en.wikipedia.org/wiki/Venous_ulcer
The exact etiology of venous ulcers is not certain, but they are thought to arise when venous valves that exist to prevent backflow of blood do not function properly, causing the pressure in veins to increase.[2][3][4][5] The body needs the pressure gradient between arteries and veins in order for the heart to pump blood forward through arteries and into veins. When venous hypertension exists, arteries no longer have significantly higher pressure than veins, blood is not pumped as effectively into or out of the area,[2][3][4][5] and it pools.

Venous hypertension may also stretch veins and allow blood proteins to leak into the extravascular space, isolating extracellular matrix (ECM) molecules and growth factors, preventing them from helping to heal the wound.[2][5] Leakage of fibrinogen from veins as well as deficiencies in fibrinolysis may also cause fibrin to build up around the vessels, preventing oxygen and nutrients from reaching cells.[2] Venous insufficiency may also cause white blood cells (leukocytes) to accumulate in small blood vessels, releasing inflammatory factors and reactive oxygen species (ROS, free radicals) and further contributing to chronic wound formation.[2][5] Buildup of white blood cells in small blood vessels may also plug the vessels, further contributing to ischemia.[6] This blockage of blood vessels by leukocytes may be responsible for the "no reflow phenomenon," in which ischemic tissue is never fully reperfused.[6] Allowing blood to flow back into the limb, for example by elevating it, is necessary but also contributes to reperfusion injury.[3] Other comorbidities may also be the root cause of venous ulcers.[4]

It is in the crus that the classic venous stasis ulcer occurs. Venous stasis results from damage to the vein valvular system in the lower extremity and in extreme cases allows the pressure in the veins to be higher than the pressure in the arteries. This pressure results in transudation of inflammatory mediators into the subcutaneous tissues of the lower extremity and subsequent breakdown of the tissue including the skin.



SO that kind of oulines the problem with venous ulcers and what happens, note the classic issues that we have seen time and time again as 'evidence' of autoimmune disease: the lymphocytes in the area, the inflammatory factors etc.

I wonder looking at this if reducing inflammatory factors would make a difference in healing? Notice that the inflammatory factors contribute to the wound formation, so would steroids/ immune suppressives help reduce the injury and make things seem better? I can't find any reference attempting it, but then again no one ever thought venous ulcers were autoimmune............ :lol:

So you will wonder what the treatment is for venous ulcers? Below is a link to a study that showed surgical treatment to repair the valves and restore venous competance worked well in most cases (there seems to be a difference with post thrombotic syndrome)
http://www.ncbi.nlm.nih.gov/pubmed/8126852

CONCLUSIONS: This report highlights a difference found in very long-term prognosis of surgical treatment of primary valve insufficiency as opposed to postthrombotic syndrome. Long-term elimination of symptoms of chronic venous insufficiency is achieved by valve repair for primary valve insufficiency beyond 10 years, whereas late results of treatment of postthrombotic syndrome in this study was accompanied by high recurrence rates and warrants further investigation.


They don't know why post thrombotic syndrome, which is a person who had a clot in the leg then developed venous problems after that, is different than people with primary venous problems. I think, and just IMHO, that the MS type is probably like primary venous ulcers because we are talking about a stricture that causes problems upstream without another initiating event.

http://ves.sagepub.com/cgi/content/abstract/38/3/209

The aim of this study was to define the underlying anatomical and pathophysiological conditions in limbs with venous ulcers in order to get information for the most appropriate treatment selection. Ninety-eight limbs (83 patients, 59 men), with active chronic venous ulcers, were analyzed retrospectively and classified according to the CEAP (clinical, etiological, anatomical, and pathophysiological) classification. Duplex-ultrasound was performed in all patients, while air-plethysmography and venography were performed selectively on potential candidates for deep venous reconstruction. Sixty-six ulcers were primary in origin and 32 were secondary. Reflux was present in all limbs except 1. Isolated reflux in 1 system (superficial = 3, deep = 4, perforator = 3) was seen in 10 legs (10%), while incompetence in all 3 systems was seen in 51 legs (52%). Superficial reflux with or without involvement of other systems was seen in 84 legs (86%), 72 legs (73%) had deep reflux with or without involvement of other systems, and incompetent perforator veins were identified in 79 limbs (81%). Axial reflux (continuous reverse flow from the groin region to below knee) was found in 77 limbs (79%). The femoral vein was the single most common deep venous segment in which either reflux or obstruction was found. Axial distribution of disease was found in the majority of cases and no patient had isolated deep venous incompetence below knee. Primary disease was the predominant etiologic cause and reflux was the main pathophysiological finding. Practically all patients were found to have 1 or more sites of reflux or obstruction that could benefit from operative treatment.


It'll be good if it becomes well known that we too have strictures, like those noted above in the FEMORAL veins that are identifiable so they are operable in the same way. I think this is interesting because the femoral veins are large and actually are more central to the system; a lot of smaller things drain to them, and they go directly to the vena cava which is the biggest vein that drains everything else and goes directly to the heart.

The azygous vein and the jugular are also attached to the vena cava, so they could be considered similar in size and function. If femoral veins can have strictures that cause venous ulcers upstream (which is actually below in the feet because veins drain from bottom up in the legs) then why on earth not the azygous and jugular????

One thing I came across several times was that if the stricture has been present a long time other veins not so deep/large would also end up being injured by being over capacity, backed up, and stretched trying to deal with the local congestion, so their valves end up being incompetant too. What happens then is those other smaller veins also need repairs complicating treatment to several sites, and this messes up the pure science results of the effort to evaluate the success of surgical intervention. Like if you decided you didn't need to repair the smaller veins and the person still has issues later is it because the femoral vein repair failed or you just didn't repair enough?

Further studies to check and see what is going on later to evaluate your results are needed.

it is a little bit complicated!

I wrote and asked Dr Schelling what we could do to help while we wait and he said nothing but surgery will help. I had wondered if breathing hard/straining should be avoided and he mentioned that some MS exacerbations had been noted in people who'd done huge efforts with heavy breathing in some early work around WW1 & 2. In other words yes, straining is a bad idea, but because it is unavoidable in living people surgery is the only real option.

In the feet with venous ulcers one can keep one's feet up to aid drainage, use pressure stocking etc (this is considered "conservative treatment" you know how health systems like to find cheap ways to deal with stuff....)but the head is not really conducive to anything like that at all.

In general though it seems the surgical repair is the best approach with long term success in many people when looking at venous ulcers (edt to clarify venous ulcers specifically).

I still have not heard from my chosen vascular dude......... :?
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Postby mrhodes40 » Thu Jan 08, 2009 10:03 am

Sou, right on I am thinking. The autoreactive cells are not a problem in regular people and not exclusive to MSers, it has to be something else...
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Postby cheerleader » Thu Jan 08, 2009 10:50 am

Thanks so much, sou and Marie for these thoughts. So, according to Scheller, it's surgery alone. Thanks for asking him, Marie. That would explain alot about Zamboni's "Liberation" procedure. I still think a vasodilation program and some lifestyle adjustments could help avoid a flare or progression until surgery is obtained. I made a list on the endothelial healing thread of activities that create vasoconstriction. If they can be avoided, it might be a good idea.

They included scuba diving, straining when lifting heavy weights or objects, straining when defecating or having sex, breath holding, yelling, playing brass or reed instruments, high altitude activities (I believe this helps explain the high MS dx in Colorado), coughing due to cold and allergies. Don't do these all at the same time! 8O

Anecdotally, Jeff was in Salt Lake City for a week before his first flare, and he is one of the finest trumpet players around...he's taking a break from trumpet until we see the vascular doc. Also, he wakes up feeling good, but by the end of the day, his legs are very painful. I believe it's due to the gravitational pressure and reflux from being upright during the day. After being horizontal for 8 hours, no pain....these are all just my observations.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Thu Jan 08, 2009 2:59 pm

AC,

To add some weight (haha) to the situation Jeff has where his legs don't hurt upon waking but are toast by the end of the day. I could've written that part. By the end of the day, my legs and feet both are just hurting like a mother. Going to sleep is like a reset button. I wonder if all those years of being a "stander" did me harm. I used to be so hyper I wouldn't even sit to watch TV. I mean a movie I would, but I would just stand and use the mantle for my drinks. That way I was ready to bolt at every commercial and go do something. I really miss that, but I can't say why. Maybe it's because it made me feel more 'productive'. Although it's probably really just that I am a bit of a spaz.

And I must say, straining just kills me. It makes me light headed as hell and that's something I just wrote off to the MS even though I had never heard it. I really can't even bend over and tip my head past 90 degrees or I start to see stars almost immediately. It sucks. I bought a Dr.'s stool with casters for anything below 4 feet so I can sit and not have to bend over. I mean none of us can do the catcher's squat very well, but bending over to put dog food in the bowl and things like that never bothered me until about 2-3 years ago when my MS cranked up. It's funny you say straining during defacation. Hey, we can talk about anything on here right? Since I'm so constipated, I always strain. Well here since I've been getting worse, I can't hardly do it or I feel like I'm going to pass out. Seriously. I'm not kidding. The bending over, the straining, all of it are much, much harder for me now. I think that's why I've always called my MS "effort dependant". So now it's not like I see stars after getting back upright when I've been down for a while. I see them now after quickly bending over and going back upright. I think it would probably kill me to put my feet against the wall and stand on my head. I could go on and on about how much this fits.

Consequently, my neuro. was VERY interested in the Zamboni paper yesterday and basically shooed me away once he started reading it. I didn't get to discuss it with him since I gave it to him when I was done with my Tysabri infusion.

I think we're (I really mean all of you saintly, tireless researchers) on to something. It all just seems to fit. And now that you put out what types of symptoms you might feel; like stuff when straining, it fits even more from a patient who is feeling it perspective. I'm excited. You guys are my new heroes. I was tired of Batman anyway.
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Postby sou » Thu Jan 08, 2009 3:19 pm

Hi.

I think that the azygos vain has no valves, not sure about the jugular. Valves make backflow and reflux impossible. Their absence may very well mean that a blockade can affect microcirculation and gas/nutrient exchange with the cells themselves.

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Postby cheerleader » Thu Jan 08, 2009 3:31 pm

sou wrote:Hi.

I think that the azygos vain has no valves, not sure about the jugular. Valves make backflow and reflux impossible. Their absence may very well mean that a blockade can affect microcirculation and gas/nutrient exchange with the cells themselves.

sou

The azygous vein has a valve at the arch...it's only been recently noted due to more advanced screening. The internal jugular vein also has a valve. Reflux happens when the valves are incompetent, or there's blockage.

LEW!!! So glad your neuro is reading the paper. It really makes sense, doesn't it? Looking forward to your screening. Still trying to schedule Jeff's ...can't happen soon enuff! Til then, no straining! :wink:
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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