How to Understand Remission in CCSVI

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

Postby CureOrBust » Thu May 28, 2009 8:08 pm

cheerleader wrote:It looks like Jeff and Marie were born with defective jugular veins, and that it is an anatomical issue for them. For them, it's congenital. For everyone? Too soon to tell.
Apart from doctors not being able to explain how it could develop, is there any other proof at this stage that it did not develop over time?
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Postby Terry » Thu May 28, 2009 9:07 pm

I would agree with you, but I think we may now have a new dynamic with CCSVI. If someone has CPN or EBV and their blood has the virus, and then that "yucky" diseased blood is getting reluxed into the brain or the spinal column because of a senosis, the immune system is going to react -right? So, yes a virus could be involved with the MS attack but it was not the initial problem.


Sharon, I can see that clearly. All the stuff in our blood that doesn't belong loose in the brain. Of course clean-up is required. I am stuck on the vein issue. Maybe I'll get unstuck, but for now I'm just stuck. I would be happier, maybe, if LOTS of veins were studied. So the jugs and azygos backing up causes MS. I'll buy that. But are there NON-MS'ers who have the same venous issues, just not in those veins? If so, then the issue that relates only to MSers are that those veins in particular are backed up, not the venous issue on the whole. Does that make sense?
If I wasn't doing okay, I think I'd still be asking these questions, but from the seat of a plane on my way to Stanford. Please know that. I am curious to see Zamboni's reports to see if he says what he thinks is the cause, and if he thinks it relates to others, the issue being only the location of the reflux. I'd like to think that my issue is a common one, just got unlucky that those veins in particular were involved. I hope I'm making sense.
It is this that makes me uneasy.

A note from Dr. Simka, regarding his impression of the difference in MS venous stenosis, after studying the veins with ultrasound:


From my (still very limited) experience, the hallmark of venous lesions in MS patients is the stiffness of venous wall, it is not external compression. Neither is it alike varicose veins, thrombosis, atherosclerosis, or so. It is very strange, I am sitting in vascular sonography for years and I don't remember to see such a vein before scanning MS patients. Actually, the most similar pathology (as far as ultrasonographic picture is concerned) is May-Thurner syndrome in iliac veins.
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Postby Sharon » Fri May 29, 2009 4:23 am

Terry
If so, then the issue that relates only to MSers are that those veins in particular are backed up, not the venous issue on the whole. Does that make sense?


Yes, it does make sense to me. If you have other venous issues i.e. you may get varicose veins (which I have and which I have had an operation). The varicose veins are not going to cause a reflux in the brain or the spinal column, but they do cause a reflux in the legs which gives you pain. I do not think varicose veins are directly related to MS - too many people have them.
Veins are the blood vessels of the body that return blood from the arms, legs, and organs back to the heart. Venous insufficiency is a condition in which the flow of blood through the veins is impaired. Venous insufficiency can be caused by a number of disorders of the veins, particularly deep vein thrombosis (blood clot) or varicose veins

http://tinyurl.com/lmodgk


As more information comes from Zamboni we will all have a better understanding of this theory. Heck, I have a better understanding through Jeff and Marie. I think that I will have a blockage in the the asygous vein because, unlike Jeff and Marie, I have spinal lesions. A few more days and I will know for sure -- anybody want to make bets? :wink:

Sharon
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Postby mrhodes40 » Mon Jun 01, 2009 7:11 am

Heck, I have a better understanding through Jeff and Marie. I think that I will have a blockage in the the asygous vein because, unlike Jeff and Marie, I have spinal lesions. A few more days and I will know for sure -- anybody want to make bets?


This is one of the things that makes so much sense about this, there is a reason for people to have spinal lesions and it is physiologically based.

I always thought it odd that I had no spinal lesions even after 18 years, I mean why would I not, after all those years, if it is autoimmune? Why in me only choose the brain to chew on? That is illogical until you see the blockages I personally had and apply this theory.

It is the main reason I do not believe there is an autoimmune component to MS even in the light of this anomaly, ie my brain/immune system did not go crazy and make AI cells when I got CCSVI...because if it did I'd probably have at least a hint of something on my spine.

SO SHaron based on that I would not bet against an azygos blockage. I can't wait to hear what they see.
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
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Loobie » Mon Jun 01, 2009 7:47 am

Me too, my spine is loaded.
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Postby Jamie » Mon Jun 01, 2009 8:19 am

When do you go, Lew?
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Postby MaggieMae » Mon Jun 01, 2009 8:24 am

I too can't wait to read this site to see what is new with the CCVI treatment. I've been thinking about it all weekend and wondering "how do you see children with MS fitting into this scenario"?
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Postby cheerleader » Mon Jun 01, 2009 8:40 am

Kinda like to get this thread back on topic...discussing remission and flares in MS and how this works in the CCSVI paradigm. Any other tales of vasoconstriction issues prior to a flare? Revelations how vascular issues may have contributed to your diagnosis?

Let's keep general questions on the CCSVI general thread, OK?

Lew's going to Stanford July 13? Sharon and Holly are there the next couple of days. I've personally sent four other people, Marie's recommended a couple. I think Dr. Dake said he'll be testing/potentially treating 50 over the course of the next few months-

As for kids...I believe opthomologists will be on the front line of referrals to vascular doctors as well as neurologists. I know that if my son shows any strange visual issues (pseudodrusen-like his dad presented with as a kid, or other visual issues we relate to MS) I'll take him to Dr. Dake ASAP.

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Mon Jun 01, 2009 1:45 pm

Sorry, it's easy to get off topic :oops:

What about birth? Giving birth I mean what a big effort that is to strain and push and the leakage happens and then the cleanup starts and two months later you have an exacerbation as the then no longer dampened immune system goes in to clean up the area and try to repair.

think so?
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
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby cheerleader » Mon Jun 01, 2009 2:20 pm

mrhodes40 wrote:Sorry, it's easy to get off topic :oops:

What about birth? Giving birth I mean what a big effort that is to strain and push and the leakage happens and then the cleanup starts and two months later you have an exacerbation as the then no longer dampened immune system goes in to clean up the area and try to repair.

think so?


Certainly can see how birth would bring on a relapse! All that pushing (valsalva maneuvers creating reflux) and the shift in hormones from vasodilating to vasoconstricting...a recipe for an MS flare.
Hope the ultrasound gave you some answers, Marie... and hope your healing process is continuing! Didn't mean to be a nag on the OT stuff...there's so much info going on, just afraid important stuff is going to get buried or hard to find!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby akaheather » Mon Jun 01, 2009 5:58 pm

Yep, that pretty much describes me to a tee. Baby no 1 then two months later first exacerbation.

When baby #2 was born 17 months later I wasn't hit with an exacerbation until 5 months later (not sure what took so long from a CCSVI leakage standpoint, but the 2nd attack was spinal, while the first was ON.)

Then, after 3rd baby (I have been busy :) )no exacerbation. The only things different were A. MUCH shorter labor B. I had just stopped Tovaxin before prior to getting pregnant and C. I had IVIG 6 weeks after delivery.

Makes me wonder if a C-section could reduce the chance of having a flare?
Last edited by akaheather on Mon Jun 01, 2009 6:23 pm, edited 2 times in total.
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Postby mrhodes40 » Mon Jun 01, 2009 6:16 pm

wonder if a c section could reduce the chance of a flare


I wonder that also. Had that thought myself, do you seem to show that?
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
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby akaheather » Mon Jun 01, 2009 6:57 pm

I guess I could go for # 4 and test that hypothesis... provided of course that we get a few volunteers to pitch in for college tuition??? :wink:

I did read that women with MS have a higher chance of requiring induction. Coincidentally, I had to induce with all three and they were ALL 2 weeks late. I have often wondered if I would ever go into labor on my own. I am not sure what THAT is all about either.
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Postby mrhodes40 » Tue Jun 02, 2009 8:01 am

Oh hey me too!! Pitocin drips both times, and big labor. Glad I will not be testing that c-section thing out......... Sure you don't want to voluteer? babies smell pretty nice :wink:

uh oh, i'm pff topic again :oops:
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
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby notasperfectasyou » Tue Jun 02, 2009 11:38 am

Bunch of Thoughts

1) Vasoconstrictors and Vasodialators. I take Lipitor, I can relates to this. Most all of us take a lot of sups. So far it looks like NAC improves blood flow. This might need it's own thread.

2) Heredity? Cheer used the words "born with" a bit back. There's a lot of studies of MS within families. Hummm....

3) In a pathology that involves bacteria, I'm not sure that I can agree that vascular issues precede the bacterial issues. I'm open to playing chicken and egg. Marie is likely in the best position to explain this to me.

4) I have not googled for this yet, but thought hit me - Stroke. Shouldn't stroke somehow be related to CCSVI? I don't really know much about stroke, so I could be totally off on this wonderment.

Ken
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