Multiple sclerosis treatment ignites hope, skepticism

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

Postby THEGREEKFROMTHED » Fri Apr 01, 2011 9:23 am

On the other hand, Cece mentions having (I don't remember exactly offhand) something like 100% and 90% blockages and that very different situation (as only an interested layman) makes me wonder why there isn't obvious and identifible damage specifically in the areas which should have been drained by those veins or near the arteries which aren't able to do their job due to the lack of drainage?

I know that's not something answerable right now but those are among the questions of a skeptic.
***********************************************************

I find cece's case extremely interesting. With such major and extreme blockages and her edss at .25? Mine werent nearly that blocked and im already in the wheelchair. Perhaps it is the malformed azygous that i have??and she doesnt???
Lots to learn...glad for cece!
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Postby HappyPoet » Fri Apr 01, 2011 9:35 am

Lyon,
I'm curious about something. With all your thousands of posts about needing scientific proof of CCSVI, why did you have your veins tested at BNAC for CCSVI??? You jumped on that testing verrrrrry early yet your MS, for the most part, with the exception of certain obvious symptoms that you sometimes display, seems somewhat relatively stable.
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Postby Coolcatcarrie » Fri Apr 01, 2011 9:39 am

I thought it is Lyons wife who has ms?
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Postby Coolcatcarrie » Fri Apr 01, 2011 9:49 am

I just skim over his posts though and I have great sympathy for his wife, at the end of the day in life pesimists may be proved right in the end but optimists have a better journey! And ccsvi is true for me! I just wish I had the luxury of his wife who doesn't have disability at the moment when ccsvi has been discovered and I would be getting treated straight away to hope to halt ms! Lyon I don't require your response this is just my rant and I'm not convinced your not a neurologist!
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Postby HappyPoet » Fri Apr 01, 2011 9:52 am

Gee, I guess Lyon's behavior had me confused -- I could have sworn he has MS.
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Postby Cece » Fri Apr 01, 2011 10:32 am

THEGREEKFROMTHED wrote:I find cece's case extremely interesting. With such major and extreme blockages and her edss at .25? Mine werent nearly that blocked and im already in the wheelchair. Perhaps it is the malformed azygous that i have??and she doesnt???
Lots to learn...glad for cece!

Dr.Sclafani's thought was indeed that it was my azygous that saved me. Here is how he described it:
These images show a very tight stenosis of almost 100%. There are vertebral collaterals seen. These vertebral collaterals can drain through the vertebral veins into the subclavian vein but because of chronic obstruction some of this drainage can travel through the vertebral plexuses that are continuous down the spine. So some of the drainage goes from the plexuses into the intercostal and lumbar veins and out into the azygous system.

This final sequence shows the very large and smooth azygous vein and its collaterals through the veno cava and the ascending lumbar vein.

www.thisisms.com/ftopicp-153823.html#153823

So my azygous was so good, not only could it drain my spine, it could also assist in draining my brain. An overachieving azygous.

Lyon, would a cervical lesion count as identifiable damage in the areas near my jugular blockages? Because I have one of those, which my neurologist blamed for my (mild) foot drop.

I also had symptoms in childhood and an MS relapse beginning at age 16, so I associate severe stenoses with early onset.
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Postby HappyPoet » Fri Apr 01, 2011 10:34 am

THEGREEKFROMTHED wrote:On the other hand, Cece mentions having (I don't remember exactly offhand) something like 100% and 90% blockages and that very different situation (as only an interested layman) makes me wonder why there isn't obvious and identifible damage specifically in the areas which should have been drained by those veins or near the arteries which aren't able to do their job due to the lack of drainage?

I know that's not something answerable right now but those are among the questions of a skeptic.
***********************************************************

I find cece's case extremely interesting. With such major and extreme blockages and her edss at .25? Mine werent nearly that blocked and im already in the wheelchair. Perhaps it is the malformed azygous that i have??and she doesnt???
Lots to learn...glad for cece!

I have dural sinus malformations.
My IJVs were both over 95% blocked.
My azygos vein is fine, yet I have many symptomatic thoracic lesions.
Answer = Dr. Schelling's theory of lesion formation due to violent venous backjets which propel deoxygenated blood back up the IJVs, through the sinuses, and then down the vertebral veins... down to the T9 level in me.
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Postby Lyon » Fri Apr 01, 2011 10:53 am

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Last edited by Lyon on Tue Jun 21, 2011 3:27 pm, edited 1 time in total.
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Postby fogdweller » Fri Apr 01, 2011 11:14 am

Lyon wrote:That said, my wife doesn't have aggressive or late stage MS so we have the luxury of not acting out of desperation and wishful thinking and instead looking at the "science" pragmatically and accepting that it's just not "there" yet.


I too have very unagressive MS ( still not in a chair after 35 years) but I decided to go ahead with treatment anyway. For me it was a risk benefit issue. I am familiar with angioplasty, and I saw very little risk as long as stents were not used. (Not as sure now with all the reports coming in about thrombosis and mild worsening with improper follow-up and improper thrombolitic treatment. I may even be in that catagory. With the right dr. and medical follow-up, though, it is not very risky at all and even potentially no benefit still comes out on the treatment side of the risk benmefit in most cases.)

I am also 58 years old. I know clinical trials take 3-8 years, and even then are not likely to come up with optimum treatment. I will die of old age before CCSVI is fully proven out. So doiing a risk benefit I decided to go ahead.

I would think it depends how mild your wife's symptoms are. Also probably the most important question: What does your wife want?
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Postby Lyon » Fri Apr 01, 2011 12:12 pm

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Postby Lyon » Fri Apr 01, 2011 12:24 pm

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Postby fogdweller » Fri Apr 01, 2011 1:27 pm

Lyon wrote:
fogdweller wrote:I would think it depends how mild your wife's symptoms are. Also probably the most important question: What does your wife want?

:lol: That my friend is a LONG story in itself, OR I could as easily and accurately answer it with three words "I don't know".
she doesn't want to think about the whole thing and luckily her condition isn't such that she can't put it to the back of her mind, it seems that she is fine with assuming that when something wonderous happens in the world of MS, I will let her know.


My personal opinon ... thats not all bad. I spent 29 years in what I called "intentional denial". I knew I had MS, but no one other than wife and family were privy to that, and I just never brought it up. The only concessions I made were some big ones ... went into law instead of surgery like my Dad,(good mo0ve) never had kids (horrible move) and gave up plyaing the guidtar (mistake) etc. I think that the lack of the stress of having to deal with it was a very positive thing, both form my life and for my disease course. Of course, that is just my opinion.
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Postby Lyon » Fri Apr 01, 2011 3:24 pm

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Postby HappyPoet » Sat Apr 02, 2011 2:43 am

Cece,

As you've previously said, our cases are very similar. My guess is that my current condition is where you could have ended up at my age (50 y.o.) if you hadn't addressed your CCSVI... I'm so incredibly happy that, thanks to CCSVI, you might not have to deal with anymore spinal lesions/symptoms, and I hold much hope that our cord damage will be helped in the future with stem cell therapy. :)

HappyPoet wrote:
THEGREEKFROMTHED wrote:On the other hand, Cece mentions having (I don't remember exactly offhand) something like 100% and 90% blockages and that very different situation (as only an interested layman) makes me wonder why there isn't obvious and identifible damage specifically in the areas which should have been drained by those veins or near the arteries which aren't able to do their job due to the lack of drainage?

I know that's not something answerable right now but those are among the questions of a skeptic.
***********************************************************

I find cece's case extremely interesting. With such major and extreme blockages and her edss at .25? Mine werent nearly that blocked and im already in the wheelchair. Perhaps it is the malformed azygous that i have??and she doesnt???
Lots to learn...glad for cece!

I have dural sinus malformations.
My IJVs were both over 95% blocked.
My azygos vein is fine, yet I have many symptomatic thoracic lesions.
Answer = Dr. Schelling's theory of lesion formation due to violent venous backjets which propel deoxygenated blood back up the IJVs, through the sinuses, and then down the vertebral veins... down to the T9 level in me.

Thanks to my MS, I forgot to include a very important part to my "Answer" section above and want to make sure everyone gets a chance to read it:

Answer = Dr. Flanagan's theory of CCVBP which holds that lesions can (also) be formed due to venous back pressure (due to spinal artery, vein, and nerve impingement) -- Atlas Orthogonal chiropractic is helping!
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