About 1/3 see no improvement at all?

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

Postby gothicrosie » Wed Jul 28, 2010 10:32 pm

Sure thing Trish. Keep in mind, the LP is usually used in the beginning, as a diagnostic tool....not as a follow up/progression monitoring tool. It is invasive to the spine.

Also, my neuro told me it is not really totally necessary to get a MRI every year if I was not progressing...but we could do it just to keep tabs on things. So, if things are status quo and you want to limit costs, you could probably skip it...but that is a decision your hubby should make with his neuro and perhaps you too. ;)

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Postby drbart » Wed Jul 28, 2010 10:34 pm

bretzke wrote:Folks are disappointed that only 2/3 of those patients liberated show either major or minor improvements in symptoms.

Get real people.


My issue is not with the effectiveness or not per se, but rather not understanding why there's such variation in outcome.

I haven't seen anyone be able to predict outcomes based on RR/PP/SP, or which veins are stenosed, or anything. Why is that? Are there veins that aren't easy to get at that we haven't tried opening up yet?

What's up with the whole hypoxia/lesion thing anyway? People develop symptoms with each exacerbation/progression. Why do some of these people get *completely* better? Are the lesions not causing symptoms directly, or do they make the accompanying nerve cells more sensitive to hypoxia?

In my sampling of personal acquaintances who have been liberated (sample size of 20), I see roughly the same distribution of wow/good/rats results. (And only 1 of 20 MSers didn't have CCSVI (but did test positive for Lyme)). I personally think the people who don't show improvement aren't having their progression stopped either .. but I don't have data to support that.

We need to get *every* MSer liberated, because we know they have venous conditions that need to be treated, and then we can get down to answering the real questions.
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Postby selkie » Thu Jul 29, 2010 1:58 am

drbart wrote:
bretzke wrote:Folks are disappointed that only 2/3 of those patients liberated show either major or minor improvements in symptoms.

Get real people.


My issue is not with the effectiveness or not per se, but rather not understanding why there's such variation in outcome.

I haven't seen anyone be able to predict outcomes based on RR/PP/SP, or which veins are stenosed, or anything. Why is that? Are there veins that aren't easy to get at that we haven't tried opening up yet?


Yet there is a variation on the way different doctors are performing the treatment: some use balloons yet there are different size balloons; at the symposium one doctor said he ballooned each vein 3 times in order to prevent re-stenosis; and other doctors prefer stents (probably the stents vary in size/type too).

I think the location of the stenosis & their severity are factors. Didn't one of the doctors say, treat the stenosis lower down and ones higher up will fix themselves?

Maybe there are unknowns, like clotting factors, gasses in the blood, veins that are more sturdy and/or elastic in some individuals than others, and things I can't even imagine.

This is such a new field, and doctors just haven't been performing the procedure long enough to be able to predict or even determine the best treatment for each individual patient, and why wouldn't the outcomes be as individual as the symptoms are individual for each person w/MS?

I agree with your theory there may be other veins involved - whether they can be opened up, I have no idea. Probably not if they're too small or inaccessible - but maybe they can be if they're large & easily accessible - but they'd have to be discovered first. And right now they're considering jugulars & azygos only. Perhaps for most people that's all they need to consider, but there may be people who are exceptions to the "rule" (which has yet to be established, if it even exists as an absolute!)


What's up with the whole hypoxia/lesion thing anyway? People develop symptoms with each exacerbation/progression. Why do some of these people get *completely* better? Are the lesions not causing symptoms directly, or do they make the accompanying nerve cells more sensitive to hypoxia?


This is a frustrating question for me. I've had the same doctor tell me location of the lesions don't determine symptoms, then turn around and tell me that a lesion on my cervical spine will directly affect my ability to walk (which does seem true). But then do cervical lesions have more direct correlation with symptoms than brain lesions?

As to your 2nd question that's way above my head... or is that why cervical lesions tend to produce more symptoms, because the spinal cord is smaller therefore the lesions closer to nerves?


In my sampling of personal acquaintances who have been liberated (sample size of 20), I see roughly the same distribution of wow/good/rats results. (And only 1 of 20 MSers didn't have CCSVI (but did test positive for Lyme)). I personally think the people who don't show improvement aren't having their progression stopped either .. but I don't have data to support that.

We need to get *every* MSer liberated, because we know they have venous conditions that need to be treated, and then we can get down to answering the real questions.


Science needs to move forward with this - and those who feel they are willing to risk treatment before we have all the answers should be allowed to choose for themselves.

Those of us who are getting worse know for certain, time is running out.

I personally am willing to take the risk - and I'm the most hospital phobic person you'd ever care to meet. But I'm unwilling to just sit back and let MS win without at least trying to kick it.

Yet at the same time I find it extremely frustrating that here we all are, patients who are put in the position of trying to understand medical mysteries that even the experts don't fully comprehend, and then trying to determine what to do based on (in my case anyway) a limited understanding!:cry: I feel pretty stupid when trying to understand any of this.

That however is my life - and probably a lot of people out there can relate.

Yet, I ask the medical community, please, let me and a competent IR decide what the best treatment is! No, I don't just ask - I demand it.
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Postby Cece » Thu Jul 29, 2010 6:56 am

selkie wrote:But then do cervical lesions have more direct correlation with symptoms than brain lesions?

I think so. The spinal cord has less square footage to work with. Also the spinal cord has very specific functions with the lower body's movement and functioning. The brain is not as constrained, it can reroute around a lesion, but there just isn't space or extra neurons in the spinal cord for much rerouting; a lesion there has a greater impact.
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Postby sgriff » Thu Jul 29, 2010 7:36 am

Fascinating discussion. What do you guys think about this?

If someone's (like my husband) major symptom is trouble walking, are we to assume that he does in fact have a lesion on his spinal cord? And if so, are those the lesions that are improved when a stenosis is found in the azygous? Maybe opening the jugulars help damage in the brain but not the spinal cord?

selkie - are you getting any closer to being able to receive treatment?
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Postby sbr487 » Thu Jul 29, 2010 7:36 am

Cece wrote:
selkie wrote:But then do cervical lesions have more direct correlation with symptoms than brain lesions?

I think so. The spinal cord has less square footage to work with. Also the spinal cord has very specific functions with the lower body's movement and functioning. The brain is not as constrained, it can reroute around a lesion, but there just isn't space or extra neurons in the spinal cord for much rerouting; a lesion there has a greater impact.


The picture is becoming clearer by the day. I think people with major walking issues or bladder problems tend to have lesions in spine. These are often PPMS. Of course, lesions in spine does not always mean issues with azygos but people with stenosis in azygos tend to see more issues. I think Dr. Z also mentioned that people with stenosis closer to brain tend to have severe issues (which is expected). I hope Drs who are treating are keeping a log of symptoms vs stenosis.

I will be surprised to see the following cases:
* wheelchair bound but no stenosis in azygos
* stenosis in azygos but fairly stable
* stenosis in only azygos but brain fog
* IJV stenosis but no brain fog
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Postby bestadmom » Thu Jul 29, 2010 7:43 am

I too have seen no improvements, yet my symptoms haven't worsened since December when I was treated. Holding steady with my EDSS of 8-8.5 is a home run for me.

Years of nerve damage isn't going to be reversed when the balloon is inflated. The immediate improvements are due to getting the blood flowing. Permant nerve damage will either be circumvented by lots of pt and the plasticity of the brain or thru reparative treatments like stem cell transplants.

Dr. Siskin's presentation gave no false hopes and put things in the proper perspective. For the doctors, especially neurologists to buy into this, they need to know how to manage patients' expectations.
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Postby nagsy » Fri Jul 30, 2010 8:06 am

sbr487 wrote:I will be surprised to see the following cases:
* wheelchair bound but no stenosis in azygos
* stenosis in azygos but fairly stable
* stenosis in only azygos but brain fog
* IJV stenosis but no brain fog


Just over 4 weeks ago when my wife was treated one of the patients was very stable and mobile - but she had stenosis in the azygos (and both jugulars).
One individual who was wheelchair bound did not have stenosis in the azygos.

I was also quite surprised at the above.
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Postby 1eye » Fri Jul 30, 2010 8:40 am

I would (perhaps foolishly) divide things between nerves that control and sense in the brain and nerves that control and sense in the spinal cord.

There is a lot of territory covered by walking, and everywhere from the farthest control centres which might be in your forehead, down to the nerves in your legs and toes, can be affected.

I think the thing I am counting on, is that the problems progress from up to down (brain end to toe end) and from large vein to small vein (jugular and other major brain drainage to small brain veins -- I think the blood supply in my cognitive areas is still relatively ok).

It would not be worth it to me, to do a spinal tap to find out that I have spinal lesions, particularly if the azygous has been treated, and I am expecting them anyway. The real problems we may have are around May-Thurner, the iliiac, and the lumbar vein. Dr. Zamboni, I think, did not operate on these as he found so many problems higher up. I don't even know what they look like; all the pictures I have seen have been of neck viens.

Also, these are detectable with spinal MRI.

Perhaps once they figure out how to treat lumbar veins, and that May- Thurner is much more common in MS (maybe PP and SP?), they will start making these an extra added option (extra charge?). I think all this will come out in the wash, but I do hope to have some improvement, and failing that to halt my progression. But I will not be surprised to see my left leg vein problems continue if they are going to go in on the right.
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Postby Cece » Fri Jul 30, 2010 10:41 am

nagsy wrote:
sbr487 wrote:I will be surprised to see the following cases:
* wheelchair bound but no stenosis in azygos
* stenosis in azygos but fairly stable
* stenosis in only azygos but brain fog
* IJV stenosis but no brain fog


Just over 4 weeks ago when my wife was treated one of the patients was very stable and mobile - but she had stenosis in the azygos (and both jugulars).
One individual who was wheelchair bound did not have stenosis in the azygos.

I was also quite surprised at the above.

Interesting stuff.

Maybe if the docs get a registry set up, that will help us parse out some patterns? I'd expect the same as sbr said above.

Another thing would be that age matters...a person could have an azygous stenosis but still be stable because the wheelchair is still a few years in the future.
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Postby walcat » Fri Jul 30, 2010 3:23 pm

For me I had given up hope on anything to help my MS, until I discovered CCSVI last November. The CRAB drugs (which only made me worse!) only work 30% of the time. Where as getting the blood flowing again helps 66% has much better odds, and therefore I'm going to take my chances and get the procedure.
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Postby eric593 » Fri Jul 30, 2010 3:36 pm

walcat wrote:For me I had given up hope on anything to help my MS, until I discovered CCSVI last November. The CRAB drugs (which only made me worse!) only work 30% of the time. Where as getting the blood flowing again helps 66% has much better odds, and therefore I'm going to take my chances and get the procedure.


I think you are comparing apples and oranges.

First, we have no idea how CCSVI treatment affects MS progression in a blinded study. So we have no % at all to compare against how effective the CRABs were shown in their blinded studies. It has not been done for long enough, nor is anyone performing pre- and post-MRI's, etc. to see how effective angioplasty is on MS progression.

Second, the 67% symptom improvement seen by one doctor is temporary results following the procedure in an unblinded group. We have absolutely no idea if any of those benefits were sustained beyond a couple days.

Third, CRABs have never measured symptom improvement which is being reported by this CCSVI treating physician. So we have absolutely no data about symptom improvement from the use of CRABs.

Initial observations by a treating physician may be interesting to us in terms of deciding whether to have the procedure, but they really don't have any significance because we have no idea whether the benefits were sustained or whether they could be duplicated in a blinded group. They certainly can't be compared against the CRABs because CRABs data relates to MRI data, and we have no %'s of any impact on MRI progression for this. Longer term (unblinded) CRABs data looks at other measures of impact on disease too but we also have none of that for CCSVI treatment.

We need to be factual and realistic about what we're talking about here. It shouldn't need to be exaggerated or improper comparisons made between CRABs and this.
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Postby Cece » Fri Jul 30, 2010 3:45 pm

Great answer, Eric.
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Postby PCakes » Fri Jul 30, 2010 6:30 pm

Earlier this year I had a call from a woman looking for CCSVI information. Friend of a friend. We talked for a long while. Her story sticks in my mind. ..This woman and four close highschool friends were diagnosed with MS. 8O 25 years ago in their early twenties. She went on to tell me that out of the five, there were two that chose to pass on drug therapy. Small research group? The results.. those two today, are doing very well.. the other three, sadly struggle. Two are in wheelchairs the other with a walker.
hmmm
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Postby sbr487 » Fri Jul 30, 2010 9:09 pm

I have seen so many patients saying stop progression etc....
If someone tells me that they can relieve me from day to day symptoms (like fatigue, thinking, spasticity, headache), I will take it. I will not worry too much about lesions etc. To be very frank these have been my biggest issues.

What is the point in having stable or reduced lesions but continuing to face headache, fatigue ...

For long medicine has got too much obsessed with lesions and forgot the real issues that make out life one hell ...
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