How to Understand Remission in CCSVI

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

Postby mrhodes40 » Wed Jun 10, 2009 9:41 am

Dr Dake is giving everyone and MRI as he is planning to publish this material....... I think heis going to do it at the 2 month visit but I suspect that will prove out to be too soon.

I also suspect it will show differently for people with different presentation for example I have had the same leisons for many years I doubt they will look different I do not have a lot of inflammation so it can't show a reduction in edema there for me. Others whose bright spots are mostly inflammation will possibly see a lot of change.

MRI can see several things, inflammation, demyelination and scar tissue all have higher signal, the first two can go back the other way scar tissue cannot. SO lesions will appear different after treatment based on what exactly they are composed of in terms of tissue type.

some people's lesins will not change at all. I probably will be one of those...
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Postby peekaboo » Wed Jun 10, 2009 10:17 am

Can we have MRI?MRV's w/ metal stents? I've been wondering that...
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Postby mrhodes40 » Wed Jun 10, 2009 11:19 am

yes but not in the first couple months. They are not made of magnetic metal......... but you got a card to carry in your purse or wallet so you can show it to the techs in such situations so when doing imaging studies be prepared to get that out

same is true of joint replacemnts
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Postby Sharon » Wed Jun 10, 2009 12:44 pm

Marie wrote
some people's lesions will not change at all. I probably will be one of those...

I am betting that my lesions will not change either. Since being diagnosed, the MRI's have not changed and I really have not had the inflammation.

My query has always been, "why the increase in disability when the lesions have not changed?" Of course, I have not gotten any definitive answers other than "it is known that MS disability increases with age". Maybe we just need to be taking that "forever young pill". :) :wink: I can't seem to find anyone to prescribe it though!

Marie wrote
but you got a card to carry in your purse or wallet so you can show it to the techs in such situations so when doing imaging studies be prepared to get that out


Marie - I missed getting a card - ---did not know anything about it. Maybe I need to contact Angela and see what's up. Thanks for posting this bit of info.

Sharon
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Postby cheerleader » Wed Jun 10, 2009 12:57 pm

Sharon wrote:
My query has always been, "why the increase in disability when the lesions have not changed?" Of course, I have not gotten any definitive answers other than "it is known that MS disability increases with age". Maybe we just need to be taking that "forever young pill". :) :wink: I can't seem to find anyone to prescribe it though!
Sharon


Sharon...from what I've read lately, there is much more damage going on in the brain than can be detected on 1.5 or 3Tesla MRI. 7Tesla MRI can show hundreds of "baby" lesions forming along the vessels in the brain as well as neuronal damage in the grey matter.
link

The lesions on your cervical spine are only part of your MS story. The slowed perfusion time creates alot of grey matter damage in the brain over the years. This is why progression continues even after the lesions no longer develop. There's more than meets the eye.

Hopefully, with correct jugular drainage, there will be normalized perfusion, adequate oxygen and grey matter damage will halt. This is what I'm hoping/praying for!
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dx dual jugular vein stenosis (CCSVI) 4/09
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Postby mrhodes40 » Wed Jun 10, 2009 2:15 pm

correct jugular drainage, there will be normalized perfusion, adequate oxygen and grey matter damage will halt. This is what I'm hoping/praying for


Indeed it seems possible let's remember that strokes happen to older people usually and a lot of recovery can happen. The difference between us and them has been that we continue to accumulate damage and their event was a time limited thing, I believe that this will turn us into the "time limited event" and we too will see some recovery. Stroks can destroy a large part of the brain.

However from an MRI perspective those lesions will not look different I think just as old stroke areas show up the same after years they did. Those are areas that are scarred not just inflammed and that is the difference.

I think we will get disappointment if we start hanging our hats on me Holly or Sharon "showing lesion healing" on MRI. We probably will not. someone with a lot of inflammation, that's another story. The only person so far who has early disease with likey inflammation is Jeff.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby Sharon » Wed Jun 10, 2009 3:46 pm

The OCT eye scan is now being used to measure the nerve damage, and also if the brain is shrinking in size. My OCT scans are normal or better in all parameters. So, there might be some slight chance for a bit of recovery. On the skeptical side though, the OCT might not be finding what the new 7 Tesla MRI's are finding.

This is an encouraging result,” says Johns Hopkins neurologist Peter Calabresi, M.D., lead author of the study, which appears in the October 2007 issue of Neurology. “MRI is an imperfect tool that measures the result of many types of tissue loss rather than specifically nerve damage itself. With OCT we can see exactly how healthy these nerves are, potentially in advance of other symptoms.”

http://tinyurl.com/mkmjvg

I agree with Marie though - the three lady Musketeers may not see the lesions disappear and we may have minimal symptom recovery. It would be nice though if the "baby" lesions that Cheer talked about were a thing of the past. Oooh -- we are such mysteries. :?

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how to understand remission in CCSVI

Postby aliyalex » Mon Feb 01, 2010 3:13 pm

my 1st symptom was dry eyes, which years later became a loss of circulation in my hands at night, especially the pinky. now i know in chinese medicine that that is the heart meridian. makes me wonder about my azygous vein.

at the time i went to the first neurologist and he told me that some dx of neurological diseases have to do with venous patterns on one side from the other. that was 25 years ago.

i was dxed in 2003 with one lesion at about C5.

not sure if this thread is still active.
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Postby Billmeik » Mon Feb 01, 2010 5:08 pm

one of the first things I took in after my ms diagnosis was a video of new research (10 years ago) It was using the new motion picture abilities in MRI's to make MRI movies. When the subject had an attack, their fingers went numb. A few weeks later they were in 'remission'. That is, the feelings were back in their fingers. But on the mri movie that area never came back..
Instead the brain reorganized to do finger sensing using a different area.

So how much is remission and how much is reorganization?

I don't see any need for ccsvi to play a role in relapsing/remitting severity. It just provides a large toxic load that taxes the immune system to the max so things like stress or viruses just act like the straw that broke the camel's back to bring on an attack. The body fights back and if plasticity is good, (I think some people are better at remitting than others) reorganization occurs. If this is all true there is no such thing as permanent damage. Just neural patterns that haven't found a new home yet. Believe you can walk again because plasticity is true (it's only been a few years that it's been documented) there may be no such thing as 'remission'...
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Postby Cece » Mon Feb 01, 2010 8:10 pm

My first relapse: I was in a car accident when I was sixteen. I had managed to lose control of the car down a hill and it flipped over. It was a slow accident, I was fine, but I was hanging upside down for a while. Once I figured out to release the seat belt, I promptly fell on my head. A few weeks later...m.s attack.

Next significant relapse came after hiking down a bit into the crater at the top of Mt. Haleakala in Hawaii.

Next significant relapse came after childbirth.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby costumenastional » Tue Feb 02, 2010 6:21 am

The way i see it it should be a paradigm (the rrms course) of exactly how it can be vascular.
This crap disease hit me after 5 long years of continued stress in work, relationship, family matters and so on. I strongly believe that if my life was at least normal i could live on with ms without knowing it for at least a few more years.
The silent progression should be "working in idle" caused to ccsvi pathology.
The relapses, whenever they occur, are probably caused by stress, heat or maybe in a very damaged BBB and chronic iron and other toxic substances deposition.
At least thats my hope.

Just my 2 cents...
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